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.