I am an artist, scholar and writer, with interests in history, psychology, arts and architecture, what makes people tick, the human spirit, the mechanics of the universe. Travel is one of my main interests, to experience other cultures and see history. I'm Canadian, and have lived my entire life in British Columbia. My family moved a lot when I was growing up, and I went to 8 different schools.
Nelson is my hometown, and for the past 25 years I've called the Okanagan home.
My father was in poor health for many years, although he never made a fuss about it and I never thought of him as sickly. He had radiation treatment for cancer in 1992 and dealt with the aftermath of radiation for the rest of his life, along with other problems. His cancer returned and he died in 2009.
My mother had dementia, so when my father got sick and died, my mother needed my support. She ended up having 6 evaluations for dementia, while most people have 2 or 3. I learned a lot in the process.
Along the way, I got 3 months of counselling for caregiver support from a social worker who specializes in Elder Care, took a dementia caregivers course from the Alzheimer Society, asked a lot of questions, and did a lot of research and reading. While I would not claim to be an expert, I know what it means to be a caregiver for someone with dementia. This book is a compilation of several blog posts and messages I've written over the past 5 years, with some updated information about resources.
Medical research is always evolving, what we know about diseases and medicine changes, but the needs of human beings tend to be the same. I hope this helps you face the challenge of being a caregiver even a little bit more easily.
I’m a Caregiver? Really? Now What?
You may find yourself acting as a caregiver for many reasons. My father battled cancer for many years. In his last month, I spent time with him in the hospital, then moved to my hometown and my parents' home to help my mother during my father's final illness and death.
My mother had dementia, which is rapidly becoming a major social and medical issue, especially in North America. I've read that Alzheimer's is the most expensive disease in the industrialized world, and it has direct and indirect impacts on the lives of everyone it touches. Being a caregiver carries a heavy price. Caregivers get sick frequently, they have more accidents, they may have to pass up promotions, change jobs or stop work altogether, they lose sleep, they suffer from a variety of psychological issues. Their other relationships may suffer.
My experience as a primary caregiver was with dementia, so my remarks are directed toward the person dealing with that, but many are applicable to any caregiver. I also use the word “parent,” but you may be caring for your spouse, a friend or another relative.
I came to realize that one of the hardest parts of becoming a caregiver was recognizing that it had happened, that I was suddenly in this role. No-one will tell you this. Nobody confers the honour upon you, there's no initiation, no card you get, no union to join or training sessions. Only if you're very, very lucky will someone you recognize as an authority say to you, "so, you're a caregiver now." In fact, you may go through months or years of taking your parent to the doctor and to medical sessions, and not one person will ever use the term "caregiver" in talking to you. Sometimes medical people will resent what they see as interference, but just as often, they're enormously relieved to have you on the job, because it reduces their load. According to one study, more than 50% of medical care is provided by family members.
Becoming a caregiver is something you need to recognize for yourself. You take the step across that threshold. Your parent's doctor will not tell you that you're there. The nurses and other staff will not tell you. Partly, this is because their concern is with the "patient," and our modern concern with privacy means they won't feel comfortable sharing medical information. But rest assured, they will know before you do, and will recognize the role you're playing even if they never say the word. If you find yourself doing more of the talking in the doctor's office, if the doctor or RN turns to you for clarification when your parent is being tested or given medical results, if you get handed the forms to fill out or asked your opinion, then you are being acknowledged as a caregiver. You may slip into this role without noticing, because it's just what needs to be done in the moment. But at a certain point, you need to make yourself conscious of your new lot in life. It comes with a whole new set of responsibilities and issues.
Many people will not understand what you do for your parent. They may see you as "taking advantage", interfering or being controlling. You can try to explain your role, but it’s usually not worth your time and energy, except for people you’re close to or you need to deal with all the time. The next door neighbours may need to understand what you’re doing and why its necessary, but the down-the-street neighbour whose name you don’t even know does not need the full inside scoop. Don’t let their lack of understanding bother you.
One thing people don’t understand is that dementia patients develop tremendous coping skills in the early stages, and may tell one person one thing, something different to someone else. The reality you see at home may look nothing like what friends and neighbours see when your family member is putting on their "company face' in the grocery store or chatting on the street. People believe what they hear and what they see. They won't notice that your parent no longer drives or shops alone, what they'll remember is that your parent griped about never being “allowed” to make decisions (because they can’t anymore), or how you force them to do certain things or forbid others. A person with dementia may talk about things they used to do as if they still do them, so nobody realizes that they haven't golfed for a decade or no longer cook.
So someone with dementia can put on a very good front for a long time after they’d lost the actual ability to function, or have no will to get out and do things. They may even believe they still do it because they remember that they do, they still see the golf clubs or the sewing machine. That ability is part of their identity even when they no longer do it.
Your job is not to get them to go back to what they used to enjoy and do easily. But to help them cope with not being able to do what they used to do, and to do for them what they can no longer do for themselves. Depending on what’s wrong with your parent or loved one, they may get better with time, but if they have Alzheimer’s or most of the common forms of dementia, they won’t get better. This is very hard even for the caregiver to accept, and nearly impossible for others to understand.
Your job is not to convince everyone in the world that your parent genuinely needs care, it’s mainly to provide that care and help, and possibly educate those closest to you and to your parent or loved one.
Educate yourself. Be pro-active. You may become the expert on your parent's needs, the sole person co- ordinating many layers and levels of care, tracking everything from what they drink with breakfast and personal needs like foot care, to legal and financial decisions and major medical concerns.
Learn to ask questions. Keep notes if you can, in any form that works for you, because the modern medical system often means care is fragmented. If you aren't keeping track of it, nobody else will do that. Seniors often require a lot of care and see many specialists.
It’s a tough job. I only hope I can provide you with a few clues here and there that might make things better for you.
Signs and Symptoms.
When a person first begins to notice a lack of function, they'll rationalize or make excuses. They may have trouble dialling a phone because they can't retain a sequence of numbers, but they'll tell you they can't find their reading glasses and ask you to dial for them. This can be so effective, people who aren’t with them all the time may assume what they say is true, without noticing that what they actually DO does not add up. We don’t notice what isn’t there, only what is, unless our attention is specifically drawn to the lack or omission (this is how many magic tricks are done)
Dementia is not just a simple loss of memory. It doesn't stop with simply forgetting names or nouns, it's about forgetting how to do things or where things are. At first, it's a case of "use it or lose it," that daily routines stick longer while more complex or unusual tasks become harder to handle.
Over time, even daily routines become too complex, as the brain loses connections. First, the brain loses the ability to create new memories, then it loses memories it's already laid down. A very early sign is a loss of initiative, so they may talk about wanting to do something but they don’t do it. This can lead to arguments at home because it looks like they’re being lazy or contrary. They may honestly not realize that they’d planned to get ready to go shopping or go get a book to read or turn on their favourite TV show, but there are too many steps to that process and they lost track.
They may get angry if you point this out. They may offer excuses that seem to make sense at first, but as time goes on, you realize they don’t. While making excuses in itself is not a symptom of Alzheimer’s as such (so
you can’t accuse your teenager of having it when they refuse to clean up their room!), constantly making excuses for not doing normal tasks is part of the overall symptomology of dementia.
So is behaving in what appears to be a coherent way, like making grocery lists, until you realize it’s what one nurse called “stupid lists, like onions and onions and onions.” My mother always made a list, always the same 5 or 6 items in varying combinations “yams, apples, bread, peppers, cereal, oranges.” I found dozens of these lists in piles in their house. I know for sure my parents ate more than that, but this was mainly because my father would load the cart with things not on her list, like eggs, oil, frozen fish, vegetables, when she wasn’t looking.
She claimed they’d chosen to “eat simply,” and they were “better off for it.” Dinner might consist of frozen fish that was nearly burnt, cold vegetables barely past frozen and watery rice, because she’d forgotten how to cook, but my father didn’t cook much and didn’t want to face her rage if he tried to interfere. She had always been the sole cook of the household and took pride in that. He followed her around the kitchen every time she was in there, turning off the water she left running, turning down the burner she’d turned up to High or forgot when she took the pan off.
Obvious memory loss comes well on into the process, and has already been preceded by other losses of function that went unnoticed because they were gradual. Eventually, if Alzheimer's progresses unchecked, the Alzheimer's sufferer loses the ability to walk, then stand, then sit up, even breathe, as their brain ceases to function.
Dementia is an umbrella term for any loss of cognitive ability. There are about 80 known causes of dementia, of which around 50 are reversible. These might include drug interactions, allergies, infections, excesses or deficiencies in nutrients. Alzheimer's is the most common form of dementia, and progresses in a relatively predictable sequence. That sequence is used to gauge the severity of any form of dementia, in a 4 stage or 7 stage sequence. Some types of dementia remain stable after a certain point, never getting better or worse. Some forms progress in an irregular or unpredictable pattern. Alzheimer's is progressive and relentless.
Get An Evaluation! Sooner Rather Than Later!
If you're caring for someone who seems to have dementia, you need to have them evaluated. There are a number of tests for cognitive function a doctor, nurse or social worker can administer. If you have a Public Health nurse or Home Support in your community, try calling them to see how you can arrange for an assessment.
DO NOT wait for your parent to suggest it, do not assume they will agree with the need, do not think it will be easy to get them to agree. With Alzheimer's, the ability to assess complex situations and see the bigger picture becomes blurred, and your parent may think they're just fine because they can still use the TV remote or weed the garden, when you know that the person who taught you to cook can no longer make a sandwich or find their favourite breakfast cereal in their own supermarket.
Nobody wants to have dementia. Nobody wants your parent to have dementia. Nobody wants to give you this news. Denial and resistance are normal, but they do nothing to solve the problem. And if your loved one's dementia IS reversible or treatable, you're wasting valuable time that it could be treated if you hold off having this done. The doctor will look for other possible causes of dementia. There is no definitive test for Alzheimer's, so diagnosing it is a process of elimination.
And as much as no-one wants to hear this news and we all fight against it when we do get it, it actually becomes easier once the diagnosis is made. You can stop getting angry at your parent for being forgetful or
not trying hard enough, you can start to learn coping skills and get support for them and for yourself. As long as you struggle on thinking your situation is unique and “they” will never be able to distinguish between your parent’s difficult nature and dementia, you won’t be getting the answers or support you need.
Currently, there is no cure for Alzheimer's, but there are drugs that can help with various aspects. However, drugs that can help with Alzheimer's may be the worst thing for someone with Parkinson's, so getting a diagnosis is the first step.
There are drugs that may help slow the loss of memory. Alzheimer's patients may also exhibit psychosis, hostility or paranoia, and this can be treatable. Dementia may bring insomnia, which may be helped with melatonin and so on.
There are things you can do to help your parent, like changing things in the home to remove tripping hazards, simplifying routines, removing things that agitate them or upset them, learning how to ask questions so you can help them. Dementia can cause people to be more sensitive to clutter or confusion, or they will see things that aren’t there because their brain misinterprets visual information, so a simpler environment often helps.
At Home or In A Home?
While most people assume that staying in their own home is ideal, in some cases, a well-run seniors' facility may be preferable, with routine, an ordered environment and trained people who can manage their care and provide direction. If your parent's care gets to where you can't cope with it physically, or both of you become frustrated or angry, finding a good care facility may be a vast improvement over trying to keep them at home. As much as we love our parents, it may be easier if someone more detached does certain things for them. Family history and relationships, embarrassment or shame may affect who they’re willing to “take orders” from or allow to change their bed. What they resent having their own child or spouse do, they may accept from a competent calm staff member who doesn’t take it personally or make it personal. And letting others handle their care lets you go back to being their child or family member, which they need just as much, or more.
Seniors’ facilities can range from residences that offer meals and a bit more care and attention than a normal apartment building, to long-term medical care. The term "assisted living" is defined by legislation in BC and must provide certain services. Assisted living situations may qualify for subsidies from the government if your parent's income is low enough, or you may be able to get support from Veterans Affairs or other agencies. Above all, do what's best for your parent and for yourself. Don't feel pressured to keep them at home if another option would result in better care.
I’m not saying keeping your parent at home is the wrong choice, just don’t assume it’s the only choice, or automatically the best choice. Even when your parent pleads with you and cries at the thought, the reality of living in a pleasant well-run seniors’ facility is often much better for them. At several places I visited, the staff said they always saw a slight decline when people moved in, then after a month or two, people began to flourish and did better than before. They ate more and better, did more, laughed more. This was true whether the person had no dementia, just needed more help than they’d get living alone, was only mildly demented, or moderately demented. Many elders with no health problems will choose to live in some seniors’ residences because they’re guaranteed good meals, company, and someone who will notice and check on them if things go wrong.
There are some bad nursing homes and long-term care facilities in the world, but there are also very well- run pleasant places that are a far cry from the old-fashioned “home” many people dread. And if you have to
get help at home with various tasks and chores, or to manage medications or procedures like dressing, bathing, foot care, it adds up in time and attention, and possibly money, to manage all of that.
So don’t dismiss the idea of placing your parent in care. It may be the best and most loving choice for everybody.
If there are good reasons why you feel your parent or loved one is better off at home, or you are better able to care for them there, then do that and don’t feel guilty. But if you come to a point where it seems like you can’t care for them at home or you’re having problems, make the choice that works best for you and for your own situation. Don’t let others dictate to you or make you feel bad, whatever you decide.
The World’s Largest Toddler?
Many family caregivers say a parent with dementia is like dealing with the world's largest toddler. Your loved one may have temper tantrums, mood swings, refuse to eat, act out. This is "difficult" or "challenging" behaviour by medical people. Very often, this is the result of loss of communication, that they can't ask for what they need. Or a direct result of problems in the brain.
But even as you're tempted to treat your parent like a toddler, you can't. They're still your parent, they deserve respect. You have to find ways to solve problems without getting angry, rude or disrespectful. You have to develop problem-solving skills. Are they hungry? Are they tired? Is something bothering them physically? Do they dislike the music or the noise where they are? Do they not like the people they’re sitting with?
Difficult behaviour may be the result of certain illnesses that can be treated, so pay attention to changes and let their physician know. Urinary tract infections (very common among older women) can cause symptoms like psychosis in the elderly. Seniors may also suffer from depression, which looks very different than it does in younger people. And delirium, caused by low oxygen levels as well as various illnesses, is a symptom of many severe conditions. Be alert, trust your instincts.
A fundamental principle the Alzheimer Society promotes is "person centred care," that no matter how difficult or far-gone the patient is, they are still the same person. They'll have the same likes and dislikes, and may respond to many things they used to love, like music, foods, certain fragrances, footrubs or body lotions, hugs and favourite clothing.
One of the hardest things to wrap your mind around is that their development is moving backwards. Everything we're taught, everything we experience, tells us that time moves forwards, that learning in developmental. if I show you today how to use the TV remote, you'll still know that next week, and I can build on that to teach you something new. Where with dementia, development goes backwards. The skill I taught my mother last week I had to teach her again. Things she could do in January, she could no longer do by April. This can be frustrating to deal with, and it's also enormously sad.
My mother lost her skills, and her ability to find ways of coping with loss of function. She would make lists, then lose the lists. She worried and asked me the same questions over and over. I finally located one notebook, and she'd gone over her questions so many times, she'd re-inked the letters two or three times. She’d read her list of questions and run her fingers over them as she asked me, again and again. Yet even when she looked at them, she didn’t know she’d ever asked these questions before. When I told her, gently, that she’d already asked me all this, she insisted she would remember the answers. I knew she wouldn’t. I finally wrote the answers beside the questions.
This alone, that someone who taught you life skills can no longer function, is losing abilities, slipping backwards down the slope, is heart-breaking. You're going to grieve for your parent as they're right in front of you. You'll go through all the stages of grief, over and over and over again.
The stages of grief are denial, bargaining, depression, anger and acceptance. You may also experience panic, an inability to concentrate, sometime hysteria. Even as you grieve for your parent, you'll grieve for yourself and the life you had, the memories you had, the questions you can no longer ask your parent because they no longer have those memories. You'll feel guilty for feeling sorry for yourself, and angry that you even have to go through this or think about these things. And you’ll go through all of this often daily. There’s no sign that says, “okay, right now, this is anger because you’re actually grieving.” You may develop mood swings yourself, because every day feels like an emergency.
Even though dementia is a physical illness, it touches on every aspect of life, from habits and family jokes to the deepest wells of memory. It reverses relationships you thought were set in stone, so now you become the keeper of tradition, the one who remembers, when you'd always thought you'd have your parent to ask, "so how is he related to us?" "do you remember that guy when I was in kindergarten, the one who...." “how old was I when...”
Caring for Yourself as a Caregiver
The time you put in as a caregiver for someone with dementia may eat into your life in many ways. It may disrupt your social life and relationships. You may spend your own money on your parent, maybe they lose the capacity to handle money. My mother began to panic about counting cash, and could not remember numbers or write cheques without help, but kept her ability to use a credit card until PIN numbers came into regular use. With that, she lost all of her financial freedom and had to rely on me or whoever she was with. This is intensely frustrating for the parent, and creates many levels of concern for the caregiver.
All of these factors affect your mental state and your health. I did not live with my mother, for several reasons, but if you live with your family member, your mental and physical health may be even more compromised.
Get support. Find a support group in your area, take a class, find a counsellor. I spent two or three months seeing an Elder Services counsellor with Mental Health, for "caregiver support." Being an adult child caring for a parent brings up many issues. You may have buried resentment or frustration, or issues unrelated directly to your parent, but being in this situation brings them to the fore. Seek help if you need it. If all else fails, try keeping a diary where you write or type out what you're feeling and thinking.
If you have a friend who's been through this, talk to them. There are support groups online if you can't get out. In my community, there was even a caregivers support group held in the afternoon, because many caregivers have to be at home in the evening.
Talk to your own doctor about your situation. Being a caregiver is a significant health risk and your health- care provider needs to know that.
Do what it takes to be healthy, for your own sake and for your parent's sake. They depend on you. You also will want to survive this and go on to have a healthy and happy life.
Think about what you eat. The temptation is to eat comfort food, junk food, fast-food. Every day seems like a crisis, there's never any time to plan, and it all blurs together. But this is not a temporary crisis, this is your life, and you need to be properly nourished. If food is not your thing, ask a friend who likes to cook for help planning meals. Lay in supplies of easy to prepare foods, healthy snacks and so on. Try to plan the food in your house so you aren't tempted to eat stupid stuff. Your community also probably has resources such as Meals on Wheels. Take advantage of this. Meals are offered at cost and delivered by volunteers. Your parent will certainly qualify, and as a caregiver, you will also. You may even find that your parent's meals can be paid for or subsidized by programs such as Veterans affairs. Research the take-out places or food-for- delivery places that offer nutritious tasty food, and keep those numbers handy. Make eating properly a priority.
Get enough sleep. You are not strong enough to act as a caregiver AND go without sleep. No, really. Sleep is not for sissies, it's how you recover from your day and how your body restores itself. If you have persistent sleep problems, talk to your doctor. Any health issues you already have will be seriously affected by lack of quality sleep. Take drugs if you need to. You may be depressed or anxious during this time, even if you aren't normally.
Alcohol and Drugs: Don’t. If you drink alcohol or use drugs in a recreational way, be aware of the temptation to resort to this. Use mood-altering substances with respect. I would sometimes have a one or two drinks, never more, if I'd had a particularly aggravating day, but I didn't keep easy-to-drink alcohol in the house as a rule for the entire time I acted as a caregiver for my mother. Getting blotto or being hungover is not going to help you cope, no matter how tempting it may seem to step into an altered reality. Find other ways of coping, at least until this is over.
Exercise is a good thing, even just a walk around the block. You may try calming practises, such as yoga, or meditation, but you may also find that these make you more anxious. Some people need to be even more physical than they might normally be, to get rid of frustration and pent-up energy.
If you belong to a church or spiritual community, this may be a good place to turn. Ritual can be calming and reassuring. You may want answers and talking to a minister or priest or other spiritual advisor may be beneficial. If your own spiritual advisor is not trained in pastoral counselling, they may be able to refer you to someone who is.
Find hobbies you can use as distraction. This might be knitting or other crafts, computer games, crossword puzzles. I found that watching TV was the worst thing for me, because it was passive. I needed to be more actively involved in order to stay focussed. Colouring books might be good, or doing sports. You may need to find things you can do alone, because your schedule no longer matches that of your friends. But if you can find time to play cards or other games or activities with friends, go out dancing, go for walks, this will go a long way toward keeping you sane and focussed.
Sense of humour is key! Seek out funny movies to watch, funny books, anything that can lighten your mood. Find ways to laugh with your parent. Laugh at yourself.
Make yourself a priority. It's easy to say, "take time for yourself," but incredibly hard to do that when your parent has needs. With dementia, any small thing can become a crisis, because the person no longer has the ability to cope or to find an emotional balance. You have to become the problem solver and figure out what's upsetting them, how to calm them down, and how to fix the problem. Doing this all the time can become exhausting.
If you are also providing physical care, doing housework, paying bills, your life can be completely taken over by this role. Even if your parent gets care from others or is in a care facility, there's rarely a moment in the day when you're not thinking about them, worried about various issues you are now responsible for.
I had no other family obligations when my mother needed me. You may be balancing the needs of children, spouse, siblings and other family members, with the needs of your elderly family member. There's the criticism that can come from friends and family, the well-meaning advice, the suggestions, the remarks they make after a visit where they saw "nothing wrong," and wonder why you feel the need to have your parent in care. And then there are the people who can't help but see your situation through their own needs and emotions, of their fears or sense of guilt about their own parents.
Legal and Financial Planning. You need to find out how to protect your parent in the event of incapacity, such as an Enduring Power of Attorney for yourself, a Representation Agreement for you to make medical decisions for your parent, an Advance Care directive or plan so you aren't faced with making mind-boggling decisions about end-of-life issues when you're in a crisis state. You also need to consider financial planning, for your parent and for yourself. And face the fact that you may die or become incapacitated before your parent dies, and make a two-tier plan to care for your parent if you're no longer able.
Protect Yourself. You also need to be aware of the perceptions of others, and that caregivers may be suspected of taking advantage or abusing their elder. Keep accurate records, keep receipts, don't mingle your money with theirs. Even if you have to place their groceries on the conveyor separately from yours or write two cheques, keep their affairs separate from yours as much as humanly possible, so you can show the details if there is ever a question.
Difficult Family Members. Dealing with difficult family members is a huge problem for many caregivers. It's particularly prevalent when some family members live far away and aren't seeing the elder frequently. They may talk to the elder on the phone and hear the complaints and excuses, they may only see the parent when they're on their best behaviour during a visit and they may assume they know more than the people who are handling things daily. This is so common, it has a name, the “Sister from Saskatchewan” or the “Sister from Seattle.” Try not to argue with them, but don’t let them take charge or make changes to your loved one’s care. You’re in charge. Don’t second-guess yourself.
If you can find an ally, that may help. It may be someone in the Alzheimer’s Society, a nurse or care aide, a counsellor or social worker, who can talk to you and the difficult family member together. I only had one family member who took exception to some of my decisions, so I finally invited her to come along to the doctor’s office with us. Once she saw how the doctor related to my mother and to me, and that this went beyond her own superficial perceptions, she was much less troublesome.
Choose Your Friends Wisely. People you normally enjoy may not understand your situation, or you may find some people hard to take during this time. Pay attention to what your body tells you. You’re already dealing with a lot. If someone makes you feel good, keep them in your life. If someone makes you feel bad, try not to spend time with them. I started getting a stiff sore neck around an old friend, and I realized she was not supportive. I cut down the time I spent around her. When you’re a caregiver, you’re on edge a lot, you may feel very intense emotions, and you need positive reinforcement and pleasant distractions. You don’t need to feel more edgy, more pressured, more negative.
If none of your supportive friends or family live nearby, try Skype or Facetime calls. Joining clubs or groups can be an issue, if your time is not your own because of demands from your loved one. If you can find a fun activity for even an hour a week, that can help you feel less isolated.
The number one tip I can pass along is that you are not alone in this. Many people have walked this road
before you, or are walking it right now. If someone in your family has dementia, recognize that it's a physical illness. It’s not a character flaw, it’s not an indictment of your family. It's not your fault. You didn't bring this on yourself or wish for it or somehow enable your parent into being this way. It's an illness, like cancer or pneumonia.
Tell everyone you know, everyone you deal with, from the banker to the plumber to your friends and co- workers. Sometimes you need time away from that set of problems and you don’t want everyone to know, but this is your reality now. You'll find that most people are very sympathetic, and may even offer advice or solutions you might not have thought about. You may find friends have been through this or are going through this, and that you already have a support group or network in place that you weren't aware of, until you needed it.
Just as you may feel reluctant to talk about this, your friends may also have not said anything. Once you start talking about it, you’ll be surprised how many people have been there before. They may offer you advice, they may just be there for you. Spending time with people who understand what you’re going through, who can see the humour or provide a simple solution, or just a few hours of distraction, may be enough to help you feel sane again for a while.
The Alzheimer Society has some excellent resources, including support groups, classes for caregivers, online classes and groups, and plenty of articles and information online. Google them for information specific to where you live.
Caregivers can apply for tax deductions. Check with your tax advisor if you have one, or google “caregiver tax deduction” for your area to see what may be available.
You may also qualify for things like a free flu shot as a caregiver. Years ago, when I was married to a pastor whose congregation was mainly elderly, I got free flu shots because I qualified as a “caregiver” since I was in frequent contact with the elderly. If you don’t live with your family member, you still qualify, because you’ll be visiting them and coming in contact with other people as well as staff.
This is why you need to be upfront about being a caregiver. You can gain benefits for acting in that capacity. Those will never equate to being paid, but what you’re doing is important, to your family or friend, and to society as a whole. You’re entitled to whatever is out there you can make use of. Caregivers often qualify for things like Meals on Wheels or reductions on medical supplies.
And there are many stresses and burdens on caregivers. This is why you need to recognize your role and accept its importance. Even if no-one else ever says to you that you are a caregiver, you deserve to know that you’re doing important work.
Here is a definition of caregiver from the Work and Family Researchers Network (formerly the Sloan Work and Family Research Network, originally run under the auspices of the Alfred P. Sloan Foundation):
"Caregiving is the act of providing unpaid assistance and support to family members or acquaintances who have physical, psychological, or developmental needs. Caring for others generally takes on three forms: instrumental, emotional, and informational caring. Instrumental help includes activities such as shopping for someone who is disabled or cleaning for an elderly parent. Caregiving also involves a great deal of emotional support, which may include listening, counseling, and companionship. Finally, part of caring for others may be informational in nature, such as learning how to alter the living environment of someone in the first stages of dementia.
Sociologists generally limit their discussion of caregiving to unpaid workers. Caregivers are typically family members, friends, and neighbors. Sometimes caregiving is done by those affiliated with religious institutions. While caregiving of all types is also done by paid workers such as nurses, social workers, and counselors, this is paid work, and thus is not in the same category. Caregiving rarely refers to the daily care that parents provide for their children, because this is classified as parenting; however, caring for an adult disabled daughter would be considered caregiving because it is outside of the norm of expectations for older adults." (Drentea, 2007)
Work and Family Researchers Network has a lot of information about caregiving, balancing caregiving with work, what it mans to be an older worker and a caregiver, the role of women as caregivers. It’s based in the US, at the University of Pennsylvania, and has a lot to offer regarding public policy, research and more.
Navigating The System: You Need Help!
This isn’t necessarily advice, but it’s definitely something you should think about. I have a university education, I read well, I can do research and understand medical and scientific language. I also am very confident talking with doctors and other professionals. And I still found it hard to navigate the system in getting care for my mother. So don’t think it’s you or that there are lots of other people out there in the world who are doing this way better than you. There aren’t.
Everyone experiences that “first day of kindergarten” when they get outside their comfort zone, and every caregiver spends a lot of their time outside their comfort zone, feeling like everybody else knows where the bathrooms are and what the secret hand signals are to get stuff. Believe me, even the experts may know only their little piece of the medical system. So it’s really important that you learn to be upfront, even demanding, in asking for information.
I came across a post on Facebook from the Compassion Fatigue Awareness Project that of over 1000 New York caregivers surveyed, most said the top thing they need is help navigating all the services available, and help making decisions that face them in caring for their family members and loved ones.
In my own case, I was lucky in many ways. Right after my father's death, when I was faced with caring for my mother, her doctor said it was "medically unsafe" for us to live together. I had panic attacks, my mother often became hostile and paranoid, and she had psychotic episodes. Anti-psychotic medication helped with those, but took months to take effect. In the meantime, caring for my mother at home was not an option. An alternative had to be found.
This might not seem to be a stroke of luck, but it was. I did not have the option that seems clearcut for most people, to try to keep my mother at home or have her move in with me. For most people facing decisions about relatives with dementia, keeping them at home seems like the best possible choice, and any other option seems cruel, unethical or inadequate. We all are certain we can somehow care for our loved ones better than strangers. We know the foods they like, what TV shows they prefer, which clothes they want to wear.
But with dementia, especially Alzheimer's, changes come that are invisible at first. I remember the day my mother decided to make herself an egg sandwich. She boiled a couple of eggs and didn't use a timer. When they were done, she peeled them, then put them on the bread and crushed the eggs with a fork. I don't know if she wondered why this sandwich didn't taste quite like egg sandwiches should. I just know I was horrified.
This was my mother, MY MOTHER, who taught me how to boil eggs and make egg salad sandwiches, whose potato salad was the envy of other moms at picnics, who tried almost every recipe in Mastering the Art of French Cooking by Julia Child.
A person can survive by smashing boiled eggs onto a piece of bread, but quality of life is no longer there. She was not capable of feeding herself beyond the basics. That was only one aspect of daily life she was no longer managing.
I discovered later she was sneaking out of the house in the early morning to tell a neighbour I wouldn't let her watch TV or use the phone. She tried to sell the house once when I went out for dinner. After she'd cried every day for a week that all she wanted was to see her sister, I said I’d drive her over and she accused me of trying to kick her out of her own house.
These situations are commonplace for families of people with dementia, but when you're in them, you can't imagine how to cope. Calm discussions about how to make a sandwich, or who should cook dinner, were not something we could have at this point in her life.
Being told it was medically unsafe for us to live together was a relief for me. An entire range of choices had just been taken off the table. I reserved a place for her in a new senior's residence, but it would not be ready for a couple of months. In the interim, a friend found a group home an hour away, close to my mother's family, and she agreed to move there. Even though we had some concerns, it was the best possible place for her at that point. There were only a few residents so Mom got personal attention and lots of interaction. Other family members could drop in to visit so everything was not on me, which gave me some time to sort out the move to her own place. The group home helped narrow down her problematic symptoms and arranged for a specialist, and she made a couple of pals there, who would cajole her out of the worst of her sulky moods.
By the time her apartment was ready, her medication was working and we had a clear diagnosis. I'd also had a chance to see a social worker for caregiver support, whose role is to help the elderly and their families navigate the system. We explored decisions I needed to make, the pitfalls of being a caregiver, where to look for resources, how to handle my own emotions in dealing with my often unpredictable parent. He didn't help me make decisions; he did help me find confidence in my own ability to make decisions, and he affirmed the ones I did make.
These days, years after my mother's death, I try to help friends I see struggling with the same issues. Almost all of them run up against the same obstacles. They assume doctors are the only conduit for medical information, or that all services are accessible through their doctor. They get no support as a caregiver from their doctor or their parent's doctors. And unless they themselves seek out information and help, it's almost never offered. But how do you know what to ask for, if you don't know it exists?
Caregivers are rarely, if ever, given a timeline or flow chart of what has to happen first and who to contact to start the process. So, for example, the Department of Veterans Affairs will pay for housekeeping and other services for veterans and their families, but DVA needs an evaluation or diagnosis before they'll pay for medical care at home or in a seniors' residence. Delaying an evaluation by Home Care (as it's called in BC) because you think that means you'll need to use Home Care's services, or that it commits you to a specific course of action, can mean a delay in getting the DVA to cover a service your parent needs.
Or the caregiver worries there won't be enough money, only to find out their parent's income or assets are too high to qualify for certain benefits. Estate planning and management of financial resources is critical, and often beyond most of us. I had no concept of how to manage money for someone in their 70s. I was in my fifties, well below the cutoff for certain investments and I’d never done this type of financial planning before. Stepping into my father's shoes as the person handling all the money decisions for a senior was terrifying, even though my father had done his best to leave good records.
I only went a short way down the road of dementia with my mother. A good friend went the whole way to
severe incapacity, with her mother-in-law then her own mother. The greatest gift she gave me was her humour and the sense that I wasn't alone, that someone else had been where I was. Her mother died 7 months before mine. She was well into severe dementia by then. My mother was, at worst, only moderately demented by the time she died. And I'd had tremendous support and help along the way, from the social worker I mentioned, and from doctors and the nurses at Home Care.
I was headstrong enough and still young and energetic enough to ask questions, not simply take whatever I was told, to keep reading and looking things up so I knew what questions to ask. I listened to everything people had to tell me. I took a class on dementia caregiving, which was excellent. And I told every one I dealt with, "my mother has dementia," that I was handling matters I had no experience with, and I'd appreciate all the help they could give me. Almost no-one disappointed me.
Not everyone who faces the task of caregiving is that strong. By the time a parent becomes frail or allows themselves to be helped, the caregiver may be ill or they have work pressures or other family obligations. Navigating the system was sometimes a full time job for me, and even when I wasn't actually on the phone or talking about my mother's care, it was on my mind.
We need more people in the system, or who are familiar with the system, to provide help to caregivers. Here’s the website for the Compassion Fatigue Awareness Project: http://www.compassionfatigue.org/
Resources for Alzheimer’s, Dementia, and Caregivers
Alzheimer Society of Canada. http://www.alzheimer.ca/en
There are specific websites for each province as well, and you can find your province here.
Here is the Alzheimer Association in the US:
This is the Dementia Partnerships website from the UK. This link is to an older version of the website that has an excellent guide to understanding the diagnosis process and how to care for someone with dementia. Use the navigation bar at the top of the page and look for Workforce. http://www.dementiapartnerships.org.uk/archive/
And here’s the current website, with lots of resources for anyone dealing with dementia. Keep in mind that there are many forms of dementia.
This is a website that provides training and learning resources for family caregivers.
The Compassion Fatigue Awareness Project offers many different resources for caregivers, including tips on self care.
There are support groups offered through the Alzheimer Society and many other places. Your local hospital or public health facility may offer them. Ask around. Doctors may not have this information, but other types of health facilities do exist. A walk-in clinic may have this information, social workers, counseling centres, hospices, and even victim services provided by the police or ambulance may know who you can contact.
The My Voice workbook is very useful for helping you talk to your family about care decisions we need to make as we age. The more you can talk about this early, or at least think about it, the easier it will be when you arrive at that point. This workbook was prepared by the Fraser Health Authority in the province of BC, Canada, and is quickly becoming a valuable resource all around the world. Some aspects may need to be checked with your own legal, financial and medical authorities, but the basic principles apply to everyone. The rule is always, “sooner rather than later.” http://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf
Make Yourself a Priority
Recently, a friend of mine contacted me about her concerns caring for her elderly parent. She herself has serious health issues. Her children will only help if there's an emergency and when they do come, they're critical, wondering why the Christmas decorations are still up, they have little sympathy for her fatigue or inability to cope with anything beyond the immediate health issues her parent faces, and they don't want their mother to cry or talk about her worries. She feels alone.
The irony is that if her health were to fail, if she were to be hospitalized or even die, care for her father would suddenly be available. But as long as she's willing to struggle on, their case drops farther down on the priority list. I know people who work in healthcare, and I know this is nobody's fault. Money is tight and getting tighter, there are restrictions on services, and despite good intentions, bureaucracy comes to feed off itself rather than focussing on the services it's intended to provide.
Our modern Western medical system is not designed to keep people healthy so they don't need care, it's designed to intervene in a crisis. Preventing a crisis is not a priority, even though it should be. Some even say that it's not "health-care," it's "sick-care." No help is available until you're demonstrably unwell.
Here is part of a message I started to my friend, with some other thoughts added for clarification. I've edited details to protect her privacy. The fact is, her situation is so common it hardly bears thinking about; when it comes to the elderly, family caregivers provide more than 50% of care today. If a family member cannot provide care, that affects all of us.
Yet most people don't even know where to start to get help or even advice. Everyone is sure that keeping people at home is always the best solution, that their problems are unique to them, that their questions will be heard as a lack of trying or an admission of weakness. That's far from the case but the word needs to spread so that all of us can get the care we need.
I wrote to my friend: “Your concern here is that your health is uncertain, there's no backup plan, and despite repeated attempts to get him assessed for assistance you know is available, delays in the system have kept you waiting for more than 4 months now. Without that assessment, you're not able to access the help YOU need to carry on providing care for him in the home. Your healthcare needs mean that at any moment, he could be left with NO care.
“It's so hard for us to know how serious our own situation is. In your case, if something happens to you, if you were to be hospitalized even briefly, Home and Community Care would be forced to step in, or your father would be transferred to the first available bed in a hospital or care facility. Given your health issues, this scenario is not unlikely.
“In fact, it's very common for the caregiver to die first or be hospitalized, because caregiving is a serious health risk even for a healthy person. This is why I'm suggesting you talk to your own doctor. The system is
delaying because of their internal issues, but if you do not get the assistance you know is available, you will be forced to use the system. Home Care is the bottleneck here, preventing you from doing the exact thing Home Care itself will benefit from, continue to care for your family member in their own home, with adequate support from various agencies.
“I think part of why I was able to access help is that I went into the situation knowing it was not possible for me to handle things alone. There was never a point where I could have been at home alone struggling to care for my mother. I was willing to take on the challenge, but my mother was intermittently very hostile towards me. Her own doctor said it was "medically unsafe" for us to live together, which meant I HAD to find alternatives. Caring for her myself was not an option. And when a family caregiver is not present in the home, suddenly doors open and help is available. But as long as you're willing to be there, then your case is not high on the list because of budget cutbacks and other pressures on the healthcare system. It's a terrible dilemma.
“For us laypeople with no professional medical training, who only know our own problems, whatever we're going through seems unique and insurmountable. For someone trained who cares for the elderly every day, it's easy to know what's normal, and what is not normal or acceptable and could be helped with drugs or other medical interventions. Having professional support can be crucial, but it can be SO hard to get access to!
“Many of us are sure we can care for our elderly loved one better than a professional, but that's often not the case. Someone with training can do the same things, sometimes in a less caring or loving way, but sometimes more efficiently and in a way that is less intrusive because there's none of the embarrassment or fear we might bring to things.
“I was lucky. I never had to change a diaper for either of my parents, or do any of those tasks that force us to cross a line within ourselves. My mother was hospitalized for 3 weeks in her final illness, she did lose control of her functions, but nurses and nursing aides handled the messy jobs for me, which spared both me and my mother. And this was always done in a caring but practical, no-nonsense way, because these people are trained to do this and they do it every day.
“After my father died and I had Mom evaluated, I moved my mother to a group home. Within days, they'd identified issues that made her care very difficult even for them. The same issues had led to Mom's intermittent hostility toward me, and caused much stress and heartbreak for my father, but we coped on our own, figuring this was "just how Mom is." A worker from the group home got on the phone to me, and said, "this is bullshit. She's suffering, the people around her are suffering, she needs drugs. This can't go on."
“The group home arranged for a specialist to see Mom. The medication he prescribed made a huge difference, like night and day. With a small regular dose of the right drug, my mother became her true self, "a real sweetheart," a pleasure to be with, as several professionals said about her. I've often wondered how different things might have been if my father had asked for help sooner, if we could have gotten an evaluation and medication for Mom sooner. My father's life might have been longer and happier, but at least, the worst of what he faced could have been made more tolerable.
“My father and I only discussed our concerns about Mom in undertones and whispers when she was out of the room, and only rarely, maybe 5 or 6 quick comments in two years. We had a real conversation about it only when he was hospitalized during the last month of his life, and by then, it was too late. As often happens with caregivers, his health declined and he died before she did. I have no doubt that the strain of caring for her hastened his demise.
“Two months later, there I stood in the kitchen of the group home, having a calm, practical discussion about
my mother's situation with strangers. They were compassionate, concerned and caring, and professional. At one point, the owner of the group home asked, "was your father covering for your mother?" I said, "oh yes. Big-time." He shook his head and said, "that always happens. They think they're doing them a favour, but it's the worst thing they can do."
“I realized that my private tragedy had been summed up in one sentence by someone who'd never known my father. It's a commonplace occurrence, it happens to families every day. And there are people who can help, who are trained to handle this.
“The hard part is finding the care and accessing the services. But even harder is recognizing that most of us have no training in caring for the elderly and very sick, and that sometimes we are not the best people to do this. Or we need more help to do it than we know how to accept.
“Another friend told me the story of how she did a lot of work calling doctors and following leads to get her daughter's tonsils taken out, and the Ear Nose and Throat specialist gave her a high-five for taking on the system. During the time I was caring for my mother, my own doctor said "kudos to you for getting her into care so quickly." He said that very often, the first time the medical system is even aware there's a problem at home, it's when someone has to go to Emergency. Then the family expects the system to step in at that point, and it's very difficult.
“What he didn't say is that the person who goes to Emergency, alerting the system to a healthcare crisis involving an elder, may not be the elderly person, it may be the family caregiver. In a caregivers class I took, the teacher said they'll often ask a caregiver who's reluctant to seek help, "what would you like us to do with your loved one after you die?" Because that scenario is just as likely as the one we all assume, that we, the healthy one, will be the care giver, the elderly person will die and we will move on.
“The healthcare system knows this very well, and they really would prefer not to have two patients in the system needing care. But gaining access to the help we need is not easy. It's not made easy for us unless we rattle some cages, pound on doors, make phone-calls, ask the hard questions and stand up for ourselves. And when you're in a state of crisis, that's the last thing you'll be capable of doing. It shouldn't have to be this way, but it is.”
My Own Story
The other day, I came across a quote from Joseph Campbell that made me sit up straight: “You become mature when you become the authority for your own life.”
I’ve talked about some of the challenges I faced after my father died. My mother had dementia, and we’d had a complex, often difficult relationship as long as I can remember. I loved her very much, and there was nothing I ever wanted more than for her to love me, although knowing that my father loved and approved of me was also big on the list. In the month before my father died, I knew he approved of me and that he had always loved me, even though the relationship between me and my mother had been hard on him, too. I know now that my mother loved me, even though she had a hard time with that.
Taking over the role of primary caregiver and main decision-maker, head honcho, “the buck stops here” adult person in the same household with my mother was the toughest thing I’ve ever done. But it had to be done, and there was no-one else.
In 2008, I’d faced a series of losses and challenges. I lost my job due to an injury, my divorce became final, I was forced out of an organization I’d loved, and I had a string of health problems. That fall, I went to
Morocco for 6 weeks, which made me come to grips with who I was when I wasn’t surrounded by the trappings of my old life. Who was I without all of the things that had mattered to me before? Being in a country where the culture was foreign, the food was unusual, the history and culture were unfamiliar, and I could barely speak even one of several languages around me, forced me to know that I could manage fairly well even in an unfamiliar setting.
I came home to Canada in the middle of a snowstorm, right before Christmas. After missing one flight and somehow finding a hotel while thousands were stranded in the airport overnight, catching the only flight out the following day, my luggage going missing for two days, then a snowstorm that kept me from driving over the mountains, I was finally able to spend Christmas with my parents. It was my last Christmas with both of them.
In less than six months my father became gravely ill and my mother was so crazed and hysterical, my father sent her home from the regional hospital he was in. We had time to talk openly for the first time in my life without my mother there to filter things, and by that point I didn’t have the fear and defensiveness I’d had as a younger person. I had a chance to simply be with my Dad.
Four weeks after I arrived at his hospital bed, my father died. My mother was, at times, eerily calm, but more often, she was utterly insane. I had to manage her while I organized all the tasks you need to do when someone dies. They were urgent now, because my mother needed the income my father’s pension provided, which would end unless I took the proper steps. Forms had to be filled out, phonecalls made, visits to various offices. My mother’s doctor chose that exact moment to move her offices and go on vacation. By the time she came back, I’d already had my mother evaluated by Home and Community Care and that ball had begun to roll.
Almost everyone I dealt with was supportive. I’d tell people my father’d died and my mother had dementia, and 9 out of 10 people, maybe more, were kind and helpful. I grew into knowing that I had the strength to do this. There were moments when I fell into a gibbering weeping heap of panic and self-pity. Couldn’t somebody ELSE do this?
The only other logical person was an older relative, but I soon realized she lacked confidence dealing with professionals. I discovered that I got help if I said to anyone I dealt with, from the clerk at the pension office to a doctor, calmly and pleasantly, that this was not something I knew how to do, that this WAS what the person I was speaking to knew best, and I’d appreciate as much help as they could give me.
I learned how to navigate the various ministries and agencies. I learned to ask questions, read books, look things up, ask more questions. I learned how to bypass some of the rules that seem insurmountable, that sometimes prevent doctors from knowing what they need to know about their patients. I came to understand the difference between what my mother’s doctors owed to her, and what I needed from them.
I learned that the role I had to play was not one that could be conferred upon me by other people. Yes, I got counselling for “caregiver support,” and I knew I was a caregiver, as well as a number of other roles I played. I had to step into that role, take on that authority. It was up to me to step up to the plate.
My incredibly handy knowledgeable solid dependable Dad, who could build furniture, hang pictures, set up my shelves, remembered people’s names, had a book about everything, and could handle any crisis I chose to throw at him, was gone. I was divorced, an only child with no children.
None of the obvious unconscious connections a person might turn to were there for me. I had friends and other people I could have called on, but my hands were full figuring out how to meet my mother’s most immediate needs.
On top of being insane with grief and terror, my mother was paranoid and had episodes of psychosis (not all Alzheimer’s patients have psychotic episodes, but it’s common enough to characterize Alzheimer’s as distinct from other forms of dementia. Paranoia is extremely common in many forms of dementia). She couldn’t live on her own, but her doctor told me in no uncertain terms we could not live together, so I had to sort out living arrangements for both of us.
I was living in my old bedroom in my parents’ house in my old home town. I’d brought my cats with me “temporarily” but it would be 3 years before we lived in a home of our own again.
As I contended with my father’s estate and my mother’s affairs, one friend kept asking me where my needs were in all of this. Could I not manage this from a distance? I was never able to answer that question, because it made no sense to me. Yes, I gave up a lot as this went on.
But my answer, for myself, was that my immediate needs or desires were not the key. I had to do now what I would want to look back on and remember later. When I was at the end of my life, would I look back on what I’d done when my parents’ lives ended and be okay with it? How did I behave in the moment, right now, in a way I’d feel justified about in ten, twenty, maybe thirty years’ time? What would I want to have as fond memories, or proud memories, or at least not self-centred “I’m not proud” memories?
And I knew the answer to that was almost never about “self-fulfillment” or comfort or a career. I found ways to be comfortable and take care of my own health, because my mother’s well-being depended upon mine, but I was also sure this situation would not be permanent.
My mother died 20 months after my father. They were both cremated, and I had them buried in the same plot. I planned a memorial service and luncheon for the two of them together, and I gave the eulogy. The following year I sold their house and bought a house in the town where I’d lived when I was married.
What I learned in Marrakesh got me through, that people can be trusted, that I can rely on my own instincts. The choice I’d made to go to Morocco when I was at the lowest ebb of my life turned out to be the right one.
I don’t have any neat resolution to this. I still don’t know what I’m going to be when I grow up. I haven’t had an idyllic romance yet. The perfect job or ideal calling have not shown up or even appeared as a concept on my horizon.
What I DO know is that I have become the authority for my own life, as Joseph Campbell said. Everything else can come out of that.
My caregiver story will not be the same as yours, and while I was in it, I had no idea how it would turn out. My mother could easily have lived another 5 or 10 years. As it turned out, she didn’t, but I couldn’t know that. I struggled with not knowing and how I would cope if things dragged on.
I was lucky. I had many advantages many people don’t have when they’re thrust into the role of being a caregiver. I know that. I also got some wonderful support, so I want to pass along what I learned, in hopes it may help you.
Be proud of yourself. Take care of yourself.
Garnett Genuis, Member of Parliament for Sherwood Park-Fort Saskatchewan, Alberta, Conservative Party of Canada
Speech in House of Commons during Emergency Debate on U.S. Decision Regarding Travel Ban, January 31, 2017
In my Ottawa office I have a large portrait of Clemens August Graf von Galen, Catholic Bishop of Münster in Germany from 1933 until 1946. My grandmother lived in Münster during that period and, as a Jewish child, she attributed her survival to the courageous witness of von Galen, whose anti-Nazi sermons created a climate of resistance against the Nazis, a climate in which a child considered undesirable could find refuge.
However, what was striking about von Galen was his steadfast refusal to be a partisan of any side. When the allied military government took over Münster, allied staff were eager to meet with this anti-Nazi bishop whose fame had by then spread throughout the world. However, they quickly became frustrated by the fact that von Galen vigorously denounced what he perceived to be unjust actions of the allied military governments. He strongly opposed the idea of collective German guilt and the forceable removal of German speakers from other countries in eastern Europe. After visiting Rome to be named a cardinal, von Galen visited prisoner of war camps holding Germans in southern Italy and offered to bring messages back to the family members of these prisoners.
Von Galen never would have denied the far greater injustice of Nazi rule, but he understood a moral responsibility to speak out against injustices in all places and in all of its forms. His fight against injustice was not a partisan fight. He protested the injustices of his own people and of other peoples. He would have strongly rejected false moral equivalency, but he also rejected the idea that being on the right side of history was sufficient to justify any abuse. He believed in calling out injustice in every case.
Today, we have a similar obligation, and that is to clearly and forcefully call out injustice. A frank recognition of the injustice represented by the recent executive order in the United States is not to deny the existence of other injustices and the need to say more about them.
Indeed, the Muslim community in Burma faces ethnic cleansing. Muslims in China, along with Christians, Buddhists, Falun Gong practitioners, and others face persecution far more brutal than anything imagined by the Trump administration. Suppression of religious freedom in Russia and in Russian occupied Ukraine is now being ignored as both Canada and the U.S. rush toward closer relations with Russia.
The government has yet to act on the ongoing genocide against Yazidis and Assyrian Christians. Christians, Baha'is, and other minorities, including Muslim minorities facing systematic persecution throughout the Middle East and beyond. In fact, in most of the seven countries identified in this executive order, converting from Islam to a different faith is not only illegal but carries a death sentence. Jews are not able to travel to many Middle Eastern countries. Saudi Arabia does not even permit the practice of faiths other than Islam.
The world is seething with injustice and there is rich hypocrisy in the condemnation of this executive order by those who endorse or remain silent about so many other and certainly greater injustices. But the recognition of the existence of worse injustices in no way should derogate from the necessary insistence that the injustice of this executive order ought to be remedied.
Why is this order unjust? This executive order arbitrarily prohibits all people from certain countries from entering the United States, even those already granted status, regardless of their values, their motivations, their religion, or even whether they are a security threat. It is therefore not strictly speaking a Muslim ban as President Trump had initially proposed, but it does sadly prohibit people of all religious traditions from the countries in question, including many persecuted Muslims and other persecuted minorities.
Although the President has a prudential obligation to defend American security, this order is blatantly imprudent in that it arbitrarily discriminates on the basis of national origin, while turning a blind eye to any serious factor indicative of security concerns. This order is unjust precisely because it fails to discriminate between those who may be a security threat on the one hand and those who simply come from certain nationalities on the other. It bars escaping minorities from the countries named and it does not bar the entry of anyone from other countries such as Saudi Arabia, the UAE, Egypt, and Qatar, which happen to have been the source of all of the 9/11 hijackers.
This order discriminates on the basis of national origin, while applying no additional security filters to immigrants from other countries. It therefore discriminates without advancing any discernible objectives.
Let us be clear. I do not know if I speak for all members of the House in this sense, but I do not believe in open borders. I believe nations have a right, generally speaking, to defend their borders, to determine their immigration levels, and to screen those whom they may eventually admit. We would not be having this discussion if the American administration had instead sought to enhance vetting procedures which are universally applied.
In our discussions about human rights and about immigration, we must reject false choices. We do not have to choose between calling out injustice in the Muslim world and calling out injustice in the west. We can and must do both. We do not have to choose between open borders naïveté on the one hand and unjust ineffective policies on the other. We can instead seek to more robustly and directly go after the sources of radicalization while welcoming as many peace-seeking victims of that terror as possible.
Clemens von Galen was a Christian motivated by his faith to seek justice for all, not just for members of his own community. Americans and American conservatives in particular highlight the Christian identity of their nation. Let us therefore underscore that Christianity is not a tribe; it is a creed.
From one of the most seminal texts in the Christian tradition I will read the following:
Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'
Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?'
The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
And of course the passage continues.
This is not a call to naïveté. It does not negate the injunction of Christ to be as wise as serpents and innocent as doves. However, this executive order is neither. It is as wise as a goldfish and appears as innocent as a crocodile. It combines an odd naïveté with every appearance of malevolence. Pushing more frustrated Muslims into the arms of radicals while denying any hope to those desperate to escape will make America less safe, not more.
Christianity is a creed, not a tribe. Similarly, America is a creed, not a tribe. Its creed is its constitution.
As a Canadian, I do believe that Canada is the best country in the world, but I am not embarrassed to speak of the exceptional nature of its republic, indisputably one of the greatest national forces for freedom in human history. It is the idea of America that makes America great. It is the idea of America that will make America great again. That idea, not all that dissimilar from our founding idea, is of a multi-ethnic, religiously diverse society founded on shared values, the values of freedom, democracy, human rights, equality of opportunity, and the rule of law.
Why are we having this emergency debate in this place about an American government policy, when there are admittedly greater injustices in other parts of the world? I believe it is because we all acknowledge the exceptional importance of the United States remaining true to its founding creed and values.
Who among the major powers has the will and the capacity to be a force for justice in a world of rampant injustice? It is not China, not Russia, but only the U.S. in collaboration with a community of nations dedicated to standing for and testifying to our shared values.
The president said in his inaugural address, “We do not seek to impose our way of life on anyone, but rather to let it shine as an example. We will shine for everyone to follow”. That sounds as if it would be a very good idea.
Christianity is a creed, not a tribe. America is a creed, not a tribe. Conservatism is a creed, not a tribe.
Conservatives believe in facing the hard-nosed realities of the world with seriousness and without naïveté. Conservatives believe in sacrifice. Conservatives believe in universal human dignity and in equal opportunity. Conservatives believe in the rule of law in keeping with a constitutional framework that limits executive power. Conservatives believe in reasoned compassion and in ordered liberty. Conservatives believe that families, communities, and individuals should be able to act in accordance with their natural competencies without the interference of the state. Conservatives believe in religious freedom and in the limits of state power. Conservatives believe in the importance of national security.
Because it is unjust in its imprudence and arbitrariness, because it denies equality of opportunity and universal human dignity, because it is likely unconstitutional because it lacks compassion and invites disorder, because it is an overreach of state power to bar people who already have status from going into the United States, and because it will make America less safe, this executive order is not conservative.
While we implore our American brothers and sisters on this critical question of justice, let us also rededicate ourselves to building a better society here in Canada, one founded on justice, on reasoned compassion, on ordered liberty, and on the pursuit of greater unity in the midst of proud diversity.
In my remaining time I would like to read a quote from Ronald Reagan's farewell address. He said:
"The past few days when I've been at that window upstairs, I've thought a bit of the "shining city upon a hill." The phrase comes from John Winthrop, who wrote it to describe the America he imagined. What he imagined was important because he was an early Pilgrim, an early freedom man. He journeyed here on what today we'd call a little wooden boat; and like the other Pilgrims, he was looking for a home that would be free.
"I've spoken of the shining city all my political life, but I don't know if I ever quite communicated what I saw when I said it. But in my mind it was a tall, proud city built on rocks stronger than oceans, windswept, God-blessed, and teeming with people of all kinds living in harmony and peace; a city with free ports that hummed with commerce and creativity. And if there had to be city walls, the walls had doors and the doors were open to anyone with the will and the heart to get here. That's how I saw it, and see it still."
I want to say a few things now that Saint Patrick's Day is over. I know a fair few people who buy into a revisionist idea of Irish history that I simply can't buy. I've been interested in Celtic lore for more than 40 years. I've studied the history of medieval Wales in some detail, which requires looking at the same time periods and earlier in other parts of Britain and Ireland. And I've also been studying the history of medieval Europe for 25 years. I have a degree in art history as well as 3 years of graduate studies, and art history, like history, is a discipline that takes time to learn and develop.
There's a reason why it takes 4 years to get a degree in history or art history. And those who teach and write in these fields academically have their work reviewed and critiqued by their peers. This system is not perfect, but it means that an academic can't just make stuff up because they feel like it. How a historian makes use of resources is subject to review, so it isn't just about facts, it's about understanding what evidence is and how it works, and what's a reasonable way of finding out what you need to know and of supporting the argument you're making. Or, to put it another way, in a phrase I often mutter and may put on a T-shirt or a placard, "you can't just make shit up."
So, no, Patrick was not some genocidal goon who brought death squads to Ireland to force people to convert. He is not analogous to Christopher Columbus or the first colonizers of the Americas. And I'm saying this based on centuries of research and evidence that has been pondered and reflected upon by many generations of scholars and thinkers, and decades of my own research.
Patrick is the most famous missionary to Ireland, but he wasn't the only or even the first. We know that a man named Palladius was sent to Ireland in 431 by Rome to act as bishop, which means there were already active Christians in Ireland by then. We don't know for sure when Patrick was there, and many scholars believe the dates for Patrick have been deliberately skewed or obscured to give him more credit and reduce the impact of Palladius. And there may have been more than one person who was later combined to create one historical figure we call Patrick.
Which all sounds terribly obscure and you've probably never heard of Palladius and have no interest in the politics of the early church, but that's how complex this history is and how much we need to resist turning this into a bumpersticker version of history. In the fifth century there was no monolithic power structure called "The Church" that systematically imposed its will by force on anybody, especially at the far western fringes of the world as they knew it. The Bible hadn't even been finalized by that time, and the Roman empire was barely even Christian. Christianity was persecuted on and off from 64 AD until 311 AD. Emperor Constantine issued an edict of toleration of all religions in 313, but Christianity was made the official religion of Rome only in 380 AD and it was not a smooth process that happened overnight in any part of the empire.
The western part of the empire was in ruins. The Roman Legions were completely withdrawn from Britain in 410 AD, after 400 years of occupation. Rome itself was attacked repeatedly throughout the fifth century and nearly destroyed by the Vizigoths in 476 AD, after Patrick's time.
There were Christians in Britain by the end of the first century, certainly by the second century. Many of the people we call missionaries to Britain and Ireland were not there to convert people but to deal with issues among existing Christians. And everyone who founded a church or went on a mission at this time had no way of asking for advice or support. No faxes from the mother church, no way to text for technical support. They were entirely on their own and often had to make things up as they went along. But we have a fair amount of written evidence as well as archeological remains, and we have writings from pagans at the time as well as from Christian writers, so it's not a case of bias or of things being edited or swept under the rug later by the victors.
Christianity did not suddenly spring into existence full-blown as some global superpower. There was no great imperial power here, no vast monolithic church nor a big political and military structure behind it. By the fourth century, the might that was Rome was based in the Byzantine Empire, centred in what is now Istanbul. In Patrick's time, whenever that was, there was no imperial power to speak of in western Europe at all.
And to see Christians as some specific unified force opposed to or different from natives of any area in Europe is also an oversimplification. Even though many historians feel the term "Dark Ages" is unjustified, it was not a fun time for Europe. The period from 300 to 700 AD is known as the Age of Migrations, when people from eastern and northern Europe moved south and west, peoples from Central Asia entered Europe, and everything was in flux. There were Angles, Saxons and other Germanic tribes moving quietly into Britain even during Roman rule, but once the Romans left, they began moving in wholesale and eventually even gave England their own name, Angle-land. They were followed by the Vikings, and even this is a tremendous oversimplification of what was a very tumultuous period of history. There may have been peaceful decades and even lifetimes here and there, but history and even DNA tell us that tranquillity was not the norm in most of Europe for most of the past 3000 years or more.
For more on what had been going on in Britain and Ireland prior to Patrick's time, I highly recommend books by Ronald Hutton, especially The Pagan Religions of the Ancient British Isles, The Druids or Blood and Mistletoe.
There was no simple idyllic golden age that was suddenly and rudely disrupted by Christian missionaries. Christianity and Christian structures like monasticism (largely invented in Ireland) were often a bright light in Europe at a time when it seemed like everything was falling apart. Thomas Cahill's book "How The Irish Saved Civilization" is a good overview of how Irish monks provided structure and learning to a Europe devastated by centuries of Roman rule then the loss of that protection and structure, then by repeated invasions from other people. Monasteries provided structure and models of organization in areas that sometimes had no towns or local structure left, and there were monasteries in many parts of Europe long before there were churches. Christians might be foreign, but they could also be locals, while there were many, many different foreigners invading over many centuries.
Saint Patrick was not a case of a foreign power coming in and colonizing by force or coercion, and we need to be careful about falling into revisionist or conspiratist theories of history that don't conform with the facts or the evidence we have.
We also need to recognize that no matter how much we might like to sympathize with one historical group over another because it suits our twenty-first century notions of justice or rightness, if you're British or Irish, then you have the blood of Cromwell's men in you, of oppressed labourers and brutal overlords, of Crusaders and merchants, priests and peasants, slaves and slave-owners, of people who lived out their lives quietly and of people who went to war. Whether you like it or not.
We can choose how we move forward in our own lives, but we can't edit out the parts of the past we'd like to ignore or pretend never happened. There is no "they" that did this to "us." If you're looking at the history of your own people in any part of Europe, then you are descended from a "them" as well as from whatever "us" you're idealizing.
There have been many, many generations between St. Patrick's time and us, and we have no control over who those people were, what they stood for or what they did. Nor over how THEY interpreted their history, which well have been entirely different from how we wish it had been. We only have control over our own lives, our values and what we choose to stand for. Rewriting the past won't change our present or our future.
We don't get to choose our ancestors. We don't get to rewrite history to suit the narrative we wish were true.
I just came across a post on Facebook (from the Compassion Fatigue Awareness Project) that over 1000 caregivers in New York were surveyed, and most said the one thing they need most is help navigating all the services available, and help making decisions that face them in caring for their family members and loved ones. A link to the article is at the bottom of this post.
In my own case, I was lucky in many ways. Right after my father's death, when I was faced with caring for my mother, I was told by her doctor it was "medically unsafe" for us to live together. I had panic attacks, my mother would become hostile and paranoid, and at times she had psychotic episodes. Anti-psychotic medication helped with those, but the effect took months. In the meantime, caring for my mother could not mean having her live with me or vice versa. Another option had to be found.
This might not seem to be a stroke of luck, but looking back, it was. I did not have the option that seems the most clearcut for most people, to try to keep my mother at home or have her move in with me. For most people facing decisions about their relatives with dementia, keeping them at home seems self-evidently the best possible choice, and any other option seems cruel, unethical or inadequate. We all are certain that we can somehow care for our loved ones better than strangers can. We know the foods they like, what TV shows they prefer, which clothes they want to wear.
But with dementia, especially Alzheimer's, come changes that are invisible at first. I remember the day my mother decided to make herself an egg sandwich. She boiled a couple of eggs and didn't use a timer. When they were done, she peeled them, then put them on the bread and crushed the eggs with a fork. I don't know if she wondered why this sandwich didn't taste quite the same as egg sandwiches always had in her life. I just know that I was horrified. This was my mother, MY MOTHER, who had taught me how to boil eggs and make egg salad sandwiches, whose potato salad was the envy of many other mothers at picnics and potlucks. Who tried almost every recipe in Mastering the Art of French Cooking by Julia Child. A person can certainly survive by smashing boiled eggs onto a piece of bread, but the quality of life is no longer there. She was not capable of feeding herself beyond the basics. That was only one aspect of daily life she was no longer managing.
I discovered later she was sneaking out of the house in the early morning to tell a neighbour I wouldn't let her watch TV or use the phone. She tried to sell the house one time when I went out for dinner. She accused me of trying to kick her out of her own house when I agreed to drive her to see her sister, after she'd cried every day for a week that all she wanted was to go and see her. All of these are situations that are commonplace for families of people with dementia, but when you're in them, you can't imagine how to cope. Calm discussions about how to make a proper egg salad sandwich, or who should cook dinner, were not something we could have at this point in her life.
Being told it was medically unsafe for us to live together was a relief for me. An entire range of possible choices had just been taken off the table. I made a reservation for her to move into a new senior's residence that was just being built, but it would not be ready for a couple of months. In the interim, a friend found a group home an hour away, close to my mother's family, and she agreed to move there. Even though there were numerous concerns we had about it, it was the best possible place for her at that point. There were only a few residents. My mother got personal attention there and lots of interaction. They helped narrow down her more problematic symptoms and arranged for a specialist to see her, and she made a couple of pals there, who'd cajole her out of the worst of her sulky moods. I couldn't have done that.
By the time her apartment was ready for her to move in, her medication was working and we had a clear diagnosis. I'd also had a chance to see a social worker for caregiver support, whose role was to help the elderly and their families navigate the system. We had time to explore decisions I needed to make, the pitfalls of being a caregiver, where to look for resources, how to handle my own emotions in dealing with my often unpredictable parent.. He didn't help me make decisions; he did help me find confidence in my own ability to make those decisions, and he affirmed the ones I did make.
These days, more than two years after my mother's death, I try to help friends I see struggling with the same issues. Almost all of them run up against the same obstacles. They assume doctors are the only conduit for medical information, or that all services are accessible through their doctor. They get no support as a caregiver from their own doctor or their parent's doctors. And unless they themselves seek out information and help, it's almost never offered to them. But how do you know what to ask for, if you don't know it exists?
Caregivers are rarely, if ever, given a timeline or flow chart of what has to happen first and who to contact to start the process. So, for example, the Department of Veterans Affairs will pay for housekeeping and other services for veterans and their families, but DVA needs an evaluation or diagnosis before they'll pay for medical care at home or in a seniors' residence. Delaying an evaluation by Home Care (as it's called in BC) because you think that means you'll need to use Home Care's services, or that it commits you to a specific course of action, can mean a delay in getting the DVA to cover a service your parent needs.
Or the caregiver worries that there won't be enough money, only to find out their parent's income or assets are too high for them to qualify for certain benefits. Estate planning and management of financial resources is critical, and often beyond most of us. As a person who'd just been in the work force and had been married to a man who'd retired but was still below the age of transition from RSPs to RIFs, I had no concept of how to manage money for someone in their 70s. Stepping into my father's shoes as the person who handled all the money decisions for a senior was terrifying for me, even though my father had done his best to leave good records.
I only went a short way down the road of dementia with my mother. A good friend had gone the whole way first with her mother-in-law, then with her own mother. The greatest gift she gave me was her humour and the sense that I wasn't alone in this, that someone else had been where I was. Her mother died 7 months before mine. She was well into severe dementia by then. My mother was, at worst, only moderately demented by the time she died. And I'd had tremendous support and help along the way, from the social worker/counsellor I mentioned, from doctors and the nurses at Home Care.
I was headstrong enough and still young and energetic enough to ask questions, not simply take whatever I was told, to keep reading and looking things up so I knew what questions to ask. I listened to everything people had to tell me. I took a class on dementia caregiving, which was excellent. And I told every one I dealt with, "my mother has dementia," that I was handling matters I had no experience with, and I'd appreciate all the help they could give me. Almost no-one disappointed me.
Not everyone who faces the task of caregiving is that strong. By the time a parent becomes frail or will allow themselves to be helped, the caregiver may themselves be ill or they have work pressures or other family obligations. Navigating the system was, at times, a full time job for me, and even when I wasn't actually on the phone or talking about my mother's care, it was on my mind.
We need more people in the system, or who are familiar with the system, to provide help to caregivers.
Once more, my dentist has wisdom to impart. I chipped a tooth, I thought, and decided to see if it needed major work, or just something temporary. It turned out I have two fillings in that tooth, and they'd gotten along fairly well, but bacteria had started to infiltrate under one of them and make a happy little nest of decay. What I thought was just a chip turned out to be a seismic shift in the front filling, slipping out of place then getting wedged so it couldn't come out on its own. The interior of the tooth was now exposed to the elements, even though I couldn't feel it. But I *DID* feel that the entire tooth was in the wrong spot, as if I had something stuck between my teeth.
It turns out that was the filling itself, pushing my molar out of line.
When my dentist poked at it, he could see the filling was ready to come out, so he was able to quickly pop it out with very little damage and no pain.
Underneath, he could see all the decay, but when he cleaned that off, he saw a clean shiny new surface, enough to tell him the tooth was healthy and doing its best to regenerate to defend against the bacterial invaders. The problem, though, was that the cells of that tooth had decided to specialize in protection, defence against invasion, what you might call military action, and had neglected for too long to be healers, to tend the garden so it could grow and flourish, not merely defend itself. He put a "medicine pack" temporary filling in there to help keep the space clean, so the tooth can try to regenerate on its own. This will also help it adjust to the shock of a new filling in a month or so. The tooth needs time to rest and recoup from the damage before it's appropriate to move into a new phase.
It struck me that the metaphors we use in modern medicine are often those of defence, of protection or even actively repelling invaders. But that's not healing in the sense he was describing. We need to understand the difference, that defence is needed, but so is healthy growth, nurturing, optimal health.
If you want a beautiful garden, you need to enrich the soil, not just water it and keep the bugs off. You need healthy plants, not merely not-sick plants.
What does it take for an organism to be abundantly healthy, to grow new tissues and become the best it can be, not just to repel intruders and ward off infection?
Cancer patients are often told to visualize very military images, like armies attacking cancer cells. But that imagery does not resonate with everyone, and it may not be what we need anyway. Maybe we also need to encourage our healthy cells to grow, which will in turn crowd out the unhealthy cells. There are many ways we can become healthier, whether we're in the grip of a serious illness, or are already fairly healthy and want to feel our best.
In a book called "She Who Dreams," Wanda Burch wrote about her experience with breast cancer. She used images from her own dreams to help her body recover from cancer and from the treatment for cancer, often almost as toxic and debilitating as the illness itself. She's now fully recovered. Her choice, to use her own internally generated imagery rather than images suggested to her, was a big part of her recovery and journey back to health. I highly recommend her book.
Recently, a friend of mine contacted me about her concerns caring for her elderly parent. She herself has serious health issues. Her children will only help if there's an emergency and when they do come, they're critical, wondering why the Christmas decorations are still up, they have little sympathy for her fatigue or inability to cope with anything beyond the immediate health issues her parent faces, and they don't want their mother to cry or talk about her worries. She feels alone. She's tried to get an assessment from Home and Community Care, and until she does, no assistance can come from other sources she knows are available to her, including the Department of Veterans Affairs who would pay for all or most of what she needs. It's been 4 months now, and Home Care is still too booked up to get the assessment done.
The irony is that if her health were to fail, if she were to be hospitalized or even die, care for her father would suddenly be available. But as long as she's willing to struggle on, their case drops farther down on the priority list. I know people who work in healthcare, and I know this is nobody's fault. Money is tight and getting tighter, there are restrictions on services, and despite good intentions, bureaucracy comes to feed off itself rather than focussing on the services it's intended to provide. This simply does not work to anyone's advantage. Our modern Western medical system is not designed to keep people healthy so they don't need care, it's designed to intervene in a crisis. Preventing a crisis is not a priority, even though it should be. Some even say that it's not "health-care," it's "sick-care." Until you're sick, the medical system has nothing to say to you. No help is available until you're demonstrably unwell.
Here is part of a message I started to her, with some other thoughts added for clarification. I've edited details to protect her privacy. The fact is, her situation is so common it hardly bears thinking about; when it comes to the elderly, family caregivers provide more than 50% of care today. If a family member cannot provide care, that affects all of us. Yet most people don't even know where to start to get help or even advice. Everyone is sure that keeping people at home is always the best solution, that their problems are unique to them, that their questions will be heard as a lack of trying, an admission of weakness. That's far from the case but the word needs to spread so that all of us can get the care we all need.
I started to say to my friend: Your concern here is that your health is uncertain, there's no backup plan, and despite repeated attempts to get him assessed for assistance you know is available, delays in the system have kept you waiting for more than 4 months now. Without that assessment, you're not able to access the help YOU need to carry on providing care for him in the home. Your healthcare needs mean that at any moment, he could be left with NO care.
It's so hard for us to know how serious our own situation is. In your case, if something happens to you, if you were to be hospitalized even briefly, Home and Community Care would be forced to step in, or your father would be transferred to the first available bed in a hospital or care facility. Given your health issues, this scenario is not unlikely.
In fact, it's very common for the caregiver to die first or be hospitalized, because caregiving is a serious health risk even for a healthy person. This is why I'm suggesting you talk to your own doctor. The system is delaying because of their internal issues, but if you do not get the assistance you know is available, you will be forced to use the system. Home Care is the bottleneck here, preventing you from doing the exact thing Home Care itself will benefit from, continue to care for your family member in their own home, with adequate support from various agencies.
I think part of why I was able to access help is that I went into the situation knowing it was not possible for me to handle things alone. There was never a point where I could have been at home alone struggling to care for my mother. I was willing to take on the challenge, but my mother was intermittently very hostile towards me. Her own doctor said it was "medically unsafe" for us to live together, which meant I HAD to find alternatives. Caring for her myself was not an option. And when a family caregiver is not present in the home, suddenly doors open and help is available. But as long as you're willing to be there, then your case is not high on the list because of budget cutbacks and other pressures on the healthcare system. It's a terrible dilemma.
For us laypeople with no professional medical training, who only know our own problems, whatever we're going through seems unique and insurmountable. For someone trained who cares for the elderly every day, it's easy to know what's normal, and what is not normal or acceptable and could be helped with drugs or other medical interventions. Having professional support can be crucial, but it can be SO hard to get access to!
Many of us are sure we can care for our elderly loved one better than a professional, but that's often not the case. Someone with training can do the same things, sometimes in a less caring or loving way, but sometimes more efficiently and in a way that is less intrusive because there's none of the embarrassment or fear we might bring to things.
I was lucky. I never had to change a diaper for either of my parents, or do any of those tasks that force us to cross a line within ourselves. My mother was hospitalized for 3 weeks in her final illness, she did lose control of her functions, but nurses and nursing aides handled the messy jobs for me, which spared both me and my mother. And this was always done in a caring but practical, no-nonsense way, because these people are trained to do this and they do it every day.
After my father died and I had Mom evaluated, I moved my mother to a group home. Within days, they'd identified issues that made her care very difficult even for them. The same issues had led to Mom's intermittent hostility toward me, and caused much stress and heartbreak for my father, but we coped on our own, figuring this was "just how Mom is." A worker from the group home got on the phone to me, and said, "this is bullshit. She's suffering, the people around her are suffering, she needs drugs. This can't go on."
The group home arranged for a specialist to see Mom. The medication he prescribed made a huge difference, like night and day. With a small regular dose of the right drug, my mother became her true self, "a real sweetheart," a pleasure to be with, as several professionals said about her. I've often wondered how different things might have been if my father had asked for help sooner, if we could have gotten an evaluation and medication for Mom sooner. My father's life might have been longer and happier, but at least, the worst of what he faced could have been made more tolerable.
My father and I only discussed our concerns about Mom in undertones and whispers when she was out of the room, and only rarely, maybe 5 or 6 quick comments in two years. We had a real conversation about it only when he was hospitalized during the last month of his life, and by then, it was too late. As often happens with caregivers, his health declined and he died before she did. I have no doubt that the strain of caring for her hastened his demise.
Two months later, there I stood in the kitchen of the group home, having a calm, practical discussion about my mother's situation with strangers. They were compassionate, concerned and caring, and professional. At one point, the owner of the group home asked, "was your father covering for your mother?" I said, "oh yes. Big-time." He shook his head and said, "that always happens. They think they're doing them a favour, but it's the worst thing they can do." And I realized that my private tragedy had been summed up in one sentence by someone who'd never known my father. It's a commonplace occurrence, it happens to families every day. And there are people who can help, who are trained to handle this.
The hard part is finding the care and accessing the services. But even harder is recognizing that most of us have no training in caring for the elderly and very sick, and that sometimes we are not the best people to do this. Or we need more help to do it than we know how to accept.
Another friend told me the story of how she did a lot of work calling doctors and following leads to get her daughter's tonsils taken out, and the Ear Nose and Throat specialist gave her a high-five for taking on the system. During the time I was caring for my mother, my own doctor said "kudos to you for getting her into care so quickly." He said that very often, the first time the medical system is even aware there's a problem at home, it's when someone has to go to Emergency. Then the family expects the system to step in at that point, and it's very difficult.
What he didn't say is that the person who goes to Emergency, alerting the system to a healthcare crisis involving an elder, may not be the elderly person, it may be the family caregiver. In a caregivers class I took, the teacher said they'll often ask a caregiver who's reluctant to seek help, "what would you like us to do with your loved one after you die?" Because that scenario is just as likely as the one we all assume, that we, the healthy one, will be the care giver, the elderly person will die and we will move on. The healthcare system knows this very well, and they really would prefer not to have two patients in the system needing care. But gaining access to the help we need is not easy. It's not made easy for us unless we rattle some cages, pound on doors, make phone-calls, ask the hard questions and stand up for ourselves. And when you're in a state of crisis, that's the last thing you'll be capable of doing. It shouldn't have to be this way, but it is.
The other day, I looked out a window and saw first one, then two quail. Eventually, a large bevy skittered, strolled and pecked their way by in the the underbrush at the edge of my yard. My property is at the top of a ridge with only brush and trees on a steep bank on two sides, one neighbouring house and no foot traffic. Sometimes dogs walk by with their owners, but there are few large predators to threaten game here, and it seems many species amble through at different times, maybe come by to check up, and most of them perceive it as a safe place.
I've had deer relaxing in my yard, resting on bare patches in the sun on a day when fairly deep snow had fallen the day before. Apparently, mule deer don't navigate well in snow more than a foot deep, so my yard was probably a nice protected spot to relax for a few hours.
Another day I went to clear my driveway and there were rabbit tracks in the snow. Not many people living in town see wild rabbits.
Quail are frequent visitors, and they typically make their regular rounds twice a day in my area, so I see their footprints but haven't seen them much since the summer. I laughed at their antics today. Quail are funny when they run, skittering and twittering, with little dealy-bobbers on their heads to remove any shred of seriousness from their demeanour (technically, those are called "lanterns," but dealy-bobbers seems like a better term).
Suddenly I saw movement in the tree above them and realized it was one of my resident squirrels making his (or her) rounds from one tree to the next. I wondered what would happen when their paths intersected. To my surprise, the squirrel stopped partway down the tree trunk. More quail passed, then another and another. The squirrel stayed there, a few feet above the ground. More quail went by. I thought, is that squirrel waiting for the quail? I would have assumed that a squirrel would always have the right of way over quail, even a large contingent such as this.
Eventually, the squirrel moved to another branch, and only then did it descend, but as as soon as it did, one of the quail, a male, ran into the brush towards the squirrel! Then more quail turned and went INTO the same bush!
Fur and feathers did not fly, there was no thrashing of leaves and branches, no obvious signs of a conflict. But I also did not see the squirrel emerge right away, so his normal progress had been altered. Perhaps he merely got a good talking-to by a quail delegation.
I have no idea what transpired. It just seemed that in the world of squirrels and quail, it's not immediately obvious who goes first.
Tonight I heard owls very close by, then looked up to see something big fly into a tree just outside my front room. I've been hearing these owls since I moved in, last summer. I decided I should look them up to see what kind of owl this might be. I had someone tell me a while ago they thought they saw a Snowy Owl fly out of one of my trees one day.
It's possible it was a snowy owl my visitor saw. There have been numerous sightings of snowy owls in souther BC this winter, many of them emaciated. Biologists say these are mainly young birds, and it's sad but probably not a major blow to the snowy owl population. Southern migrations are not uncommon. Snowy owls are the largest owls in North America, and they hunt mainly in the daytime.
It turns out what I'm hearing at night, though, is Great Horned Owls. This is the classic "Hoot-hoot ha-oot, hoot hoot," sometimes rendered as "who died today, who, who?" Apparently (according to a comment on YouTube) the First Nations people said this heralded the passing of a soul to the next world.
I must admit, it WAS rather eerie the first time I heard it, but rather than give in to superstition (which I only dimly remembered at that moment anyway) I really listened to the hooting. It's very soft but ringing, and I never hear just one. They're calling to one another, call and response. Sometimes just two, sometimes it seemed to be three or more. They seem to vary the speed and frequency of their calls depending on their distance from one another. If they're far apart, one calls, the other replies, eventually. As they get closer, they reply rapidly, and when they're very near to one another the second owl won't even wait for the first to finish before replying: "Hoot hoot ha-oot -" "Hoot hoot -" "-hoot hoot." "ha-oot hoot hoot." They're finishing one another's sentences.
It turns out this may well be their mating ritual, which happens in winter, and even as early as October. So what I'm hearing is not any sad mourning cry, it's a pickup line!
Much less eerie to listen to as I lie in bed at night.
From an article on NPR:
"Scanners that used X-rays spread to more airports after Christmas Day of 2009, when Umar Farouk Abdulmutallab's failed attempt to blow up a Northwest Airlines flight with explosives in his underwear."
Besides the very high humour quotient, can you spot the grammatical problem here? Say, the lack of a verb in the last part of the sentence? Which could lead to even more humour, as we suggest possible verbs and verb placements. (Even THAT is funny! Verb placements in his underwear? The material in this one sentence is outstanding!)
I leave that up to your imagination.
The easy fix for this verbless wonder? "Scanners that used X-rays spread to more airports after Umar Farouk Abdulmutallah's failed attempt to blow up a Northwest Airlines flight with explosives in his underwear, on Christmas Day 2009."
Or a live human proof-reading. Just a thought.
So, I've been eating Paleo, more or less, since October 20, 2012. Three months.
I've bought 5 Paleo cookbooks and probably 30 e-books and shorter guides, read lots of books, watched many videos. To some extent, I don't really need the cookbooks, because I'm a good cook, but it helps to have inspiration. It can be easy to get into a rut. But I confess, I sometimes find Paleo cookbooks surprisingly simplistic. Simple is good. I like recipes with very few ingredients. I'm just surprised someone would need a recipe for beef stew or plain broth.
Then I remember that I've been cooking from scratch all my life. If my family went out for a meal, it was a good meal in a nice restaurant, better than we'd have at home. This was a baseline assumption. Eating out equals a treat, not simply getting out of cooking and never because it was fast. If the food is not as good as home-cooked, my parents or my husband and I wouldn't bother. So knowing how to make stew or broth or other dishes seems effortless to me, something I hardly need to have explained. But that didn't just happen, it's the result of how I grew up, the assumptions and values I was raised with and experiences I've had along the way. It's easy to take your own life history for granted and not see that something so natural for me can be a treasure for other people.
My mother followed Julia Child and other great chefs. She would host dinner parties and plan her menus with great care. So I have it ingrained that cooking is something you would WANT to do well, a skill and craft you can strive to perfect.
I was married for 14 years to a man who took pride in being frugal. We both cooked. He often planned and cooked for large events and parties, I did most of the day to day cooking. We saved bones, meat scraps and vegetables and made a huge pot of soup stock, then we divided the stock into two or three portions, and made a different soup from each portion (as examples, a curried rice soup, a tomato based minestrone style, and a hearty lentil and yam soup, all from the same base). We'd freeze the soups in two-portion size containers, and have that with bread, maybe sliced meat and vegetables, pickles or whatever we felt like eating, as our lunch at home.
We bought a few pre-packaged items at CostCo, mostly things like frozen breaded fish or portions of meat or chicken, and HUGE bags of frozen mixed vegetables we couldn't get at our local supermarket. These were ingredients for meals we'd then cook ourselves. We bought few items ready to serve, or that needed only to be microwaved. We had a huge upright freezer, just two of us, that was always full, of ingredients or of foods we had prepared ourselves. We'd go in on a whole cow or a pig with friends or family members, so we had a stock of meat on hand. We'd get packages of meat from people who hunted. We'd buy produce in season and freeze it for later, when bell peppers can cost as much as fresh meat.
So for me, the idea of cooking everything myself is nothing new. Following recipes is not new. I need cookbooks and blogs for ideas on what to pack for lunch if I won't be at home, or Paleo-friendly snacks. Getting caught on an all-day shopping trip with only the Food Court as an option is not the best situation for making good food choices. Even a farmer's market can be problematic at meal-time, if the only items for sale need to be cooked or processed to be edible, or you're already maxed out on fruit for the day and need something substantial. When your companions opt for bagels and cream cheese or ice cream, or other scrumptious looking easy fare, you need to have a plan to ward off temptation, or some Paleo friendly snack in your shoulder bag. This is where cookbooks and blogs can be invaluable for tips and tricks.
And I came of age in the 1970s, when Frances Moore Lappe's Food For a Small planet was popular and vegetarianism was starting to become mainstream. I lived in a town that took everything counterculture seriously, and learned how to cook with brown rice and lentils, how to use whole grains, why sugar was bad for you. When I was at art college, we would challenge each other to go without sugar for a week or a month, and share our experiences. Then I went to university in a much larger city, met people from other cultures, learned to love other foods. Art historians LOVE good food, so we would have amazing potlucks when I was in grad school, where everyone brought fabulous dishes and shared recipes, and we would talk about each dish and what was so great about it. We appreciated food and talked about it like, well, art historians: the colours, the textures, the way the flavours blended or stood out.
My personal experience with food and cooking is, I now realize, vast compared to that of many people. And, I must grudgingly admit, perhaps my age is a factor here, that I grew up at a time when stay-at-home moms were common, and learning to cook well, or at least decently, was expected for most mothers and wives. Maybe it's not as easy for people who grew up in two-income families or with single parents, without the model of cooking as something that took up a good portion of the day and could be done well. And I grew up in small towns and both my parents were from small towns, where take out food simply was not an option decades ago.
But I know a woman, older than me, whose mother saw cooking as a necessary evil. She wanted to be helping out on the family farm or reading. She felt that cooking was not as important as picking fruit or studying, even though cooking and food were obviously necessary. Cooking was not "real work," it didn't contribute, in her mind, in the same way that orchard work did, and it wasn't important the way mastery of an intellectual topic could be. So it's not even a generational thing or about where you grew up, it's also about the specific qualities your family emphasized and saw as valuable.
Implicit in my own upbringing was the sense that food was important, that cooking tasty, nourishing food was a critical part of a happy home, a major contribution. Both of my grandmothers were good cooks, and both regarded that as something to be proud of.
I don't know if my maternal grandmother loved cooking 3 meals a day every day for a family of 5 kids plus assorted friends and relatives. In fact, I'm fairly sure she did not LOVE it all the time. Even cooking for two can get tedious day in and day out. I don't even know that she was a GOOD cook. But the assumption in my mother's family was that people cooked, that home cooking tasted good, and it was something you would want to do. The jokes about home cooking maybe not being anything you'd want to eat have never made sense to me, so that tells me being a good cook was a baseline assumption in my mother's family. And I know that my mother's paternal grandmother would run across town with Swedish specialties for the grandkids, so piping hot from her oven she had to wear oven mitts. Mom said maybe she thought Mom's mother never fed the kids, from the way all of them fell on everything she brought and devoured it like vultures.
(As a side note, one of her specialties was Swedish oven pancake, which became a Christmas tradition in the family. And so much a valued tradition that one of my cousins took pictures of his own Swedish oven pancakes this Christmas morning, and emailed them to me. See below, "food is love.")
I know for sure my father's mother was a good cook. I remember her meals. I remember that when we visited, she made a point of making things she knew someone in the family enjoyed. She always made roast beef because she was sure my father loved her roast beef dinners more than anything. Finally, my mother broke it to her that my Dad ALSO really loved her fried chicken and he wished she would sometimes make that. My father loved his mother's strawberry shortcake so much, my mother spent decades perfecting shortcake like her mother-in-law made.
I was well into my twenties before I realized it was possible to say, "no, thank you, Grandma, I don't NEED another piece of chicken/slice of beef/potato/Yorkshire pudding." It still did not go over well when I did say it, it didn't WORK, but it was POSSIBLE to try to turn it down! That took adult fortitude and gumption to figure out in the face of an old-time Grandma!
Maybe that's what people need to get, that food is love. Food is not simply nutrients or a chore, it's something we need on many levels. Food is nourishment and comfort, a way of giving love to family and friends, and ourselves. Maybe if we saw that as its PRIMARY purpose, and really believed in that, we'd have less inclination to just grab a burger on the way home or eat a packaged meal. Cook from scratch, or at least from ingredients you combine yourself, set the table even if you're alone, or at least use a plate, not the pot. Pack yourself a nice lunch. Make meal plans and cook food ahead so you have real food when you're hungry.
The time and energy it takes to cook and eat a meal is not wasted. Grabbing something quick is sometimes necessary, but it doesn't nourish our bodies, or our souls, the same way a home-cooked meal can. Getting that, really getting it, makes Paleo cooking a pleasure for me. I leave out a few ingredients now from the classic dishes (no potatoes in the beef stew these days), or I follow a recipe to learn how to work with unusual flours or nuts in place of flour, but the methods are the same. After several years of feeling there was nothing I could eat, Paleo cooking has brought me back to my roots, back to the understanding that we don't merely eat to live. Food is love, food is life.
I'm easily amused. I try to be positive about things, yet I am also driven to distraction by irrationality. Especially if the purpose is valid, but could be achieved with less drama. You'll see all of this in my writing!