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 because they lose the capacity to handle money. My mother began to panic about counting cash, and could not retain sequences of 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 completely 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.
You need to do whatever it takes to be healthy, for your own sake and for your parent's sake. And ideally, you want to survive this and go on to have a healthy and happy life.
Make a point of thinking about what you eat. The temptation is to eat comfort food, junk food, fast-food. Every day seems like a crisis, like 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 just 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.
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.
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.
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.
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.
I cannot provide advice on dealing with difficult family members, but this is very much a problem for many caregivers. You are not alone in this. 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.
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, not a mental illness, not a character flaw, 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 dont want everyone to know, but you'll find that most people are very sympathetic, and may even offer advice or solutions you may not have thought about. You may find that 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.
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.
I'll add links to pages with information and resources in coming days.
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.
You may find yourself acting as a caregiver for many reasons. My father battled cancer for many years. 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 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 came to realize that possibly the hardest part 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.
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 footcare, 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.
Be aware that many people will not understand what you do for your parent. They may see you as "taking advantage", interfering or being controlling. Dementia patients develop tremendous coping skills in the early stages, and may tell one person one thing, while they say something different to other people. The reality you see at home with your family member 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. 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 left alone to make decisions, 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.
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.
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. Memory loss comes fairly 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 80 known causes of dementia, of which 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 progress in an irregular or unpredictable pattern. Alzheimer's is progressive and relentless.
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 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 and drive, 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 regular 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 it could be treated, the longer 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.
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 detrimental to someone who has dementia caused by 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 also things you can do to help your parent, through changing things in the home, simplifying routines, learning how to ask questions so you can help them. While most people assume that staying in their own home is ideal, in some cases, living in a well-run seniors' facility may be preferable, with routine, and trained people can manage their care. 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. These 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.
Many caregivers say it's like dealing with the world's largest toddler. Your loved one may have temper tantrums, mood swings, refuse to eat, act out. This is referred to technically as "difficult" or "challenging" behaviour. Very often, this is the result of their loss of communication, that they can't ask for what they need. You have to develop problem solving skills. It may also 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.
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 becoming angry or being rude or disrespectful. A fundamental principle the Alzheimer Society promotes now is "person centred care," that no matter how difficult or far-gone the patient has become, they are still the same person. They'll have the same likes and dislikes, and may respond to many of the things they used to love, like music or 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.
She lost not only her skills, but her ability to find ways of coping with loss of function. She would make lists, then lose the lists. She would make more lists, then forget she'd done it. She worried about a lot of things, and asked me the same questions over and over. I finally located one notebook she'd written questions in, and she'd gone over them so many times, she'd re-inked the letters more than once. Yet this did not tell her that she'd asked me these things before.
This factor alone, that someone who taught you life skills can no longer function, is losing abilities, slipping backwards down the slope, is disheartening, even 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. Even though dementia is a physical illness, it touches on every aspect of life, from the tiniest little family habits and running jokes, that your parent may lose, or may retain far past the point that they've forgotten your birthday, to the deepest wells of memory. It reverses the relationships you thought were set in stone, so that you become the keeper of tradition, the one who remembers, when you'd always thought you'd have your parent to ask, "so how are they related to us?" "Do you remember that guy when I was in kindergarten, the one who...."
I created this website in February 2012. Two days after the site was completed, I sprained my ankle and could not even get to my computer. I spent two months with my foot elevated as much as possible. Moving around the house was restricted to whatever was essential, until I was finally able to put weight on my foot.
What complicated my recovery and my ability to cope was living in a split level house, and it was winter. Beginning the day I sprained my ankle, we started getting snow every day for a month. Heavy, wet snow that turned to slush and ice, that coated my driveway and made it treacherous for even the able-bodied. The landscape of my front yard made it impossible for anyone, except perhaps someone with training in proper medical lifting, as well as great strength, to help me into a vehicle. The day I sprained my ankle, we had over a foot of snow in 24 hours, and it took 4 EMTs to carry me out of the house, 3 to bring me back in, and even they slipped on the steep slope of my driveway. So I was housebound until the snow stopped, unable to get out to buy groceries, not even able to get crutches. And in my house, crutches would have been an unwise choice. I could get from my bed to the bathroom on one floor; otherwise, everything I did in the course of a day involved stairs. I developed systems for getting around, using a desk chair on wheels on one level, bouncing down the stairs on my rear end, lifting myself to a walker to move around in my kitchen, scootching down the next flight of stairs to feed the cats and do the laundry. Thank goodness my father had installed a very strong set of handrails in the house, capable of taking my full weight! Thank goodness a friend suggested a backpack!
When an ankle is sprained, there's swelling, which needs to be iced, the foot needs to be elevated as much as possible to prevent tissue damage, you can't put weight on the foot until the swelling stops, and you can't walk without support until you stop limping. A bad sprain makes you wish you'd broken a bone instead, because the recovery would be simpler and faster. I wasn't able to put on any type of shoe for weeks, not even slippers; yet another reason why venturing out in wintertime was not an option.
Falling can be life-changing, and in my case, it certainly was.
I had nothing but time while I was house-bound. I read a lot (Lord of the Rings in 4 days, several entire series of books), watched Netflix and DVDs, ordered books from Amazon. And I came to realize how deeply unhappy I was, living in my parents' house, in the town where I'd gone to high school and art school, but hadn't chosen to live. I'd moved back to my hometown to help my parents when my father fell ill, then my father died and my mother needed help living on her own. My mother died last year, less than 2 years after my father passed away. I decided then not to rush my decision about whether to sell the house and move away. I'm an only child, so my parents' house was my only direct physical link to my past.
With my life confined to my bedroom, primarily, I had lots of time to scrape the bottom of the emotional barrel, I had lots of time to contemplate how much time I spent with no social interaction at all, except for email, Facebook and a few phonecalls, and virtually no offers of help. I didn't ask for help either, so this was a two-way street. But the fact that I didn't ask points to part of my dilemma. I had a couple of close friends in town, but asking close friends to help you with everything from buying food to housework, can put too much strain on a relationship. A person has to have a community, a whole network of overlapping connections of people they can call on for different needs. I'd had that in the town I'd been living in before, that I had left when my parents needed me back in my hometown.
By the end of April, I'd started going out. I even started wearing sandals once the weather warmed up. And I went back to the town where I'd lived for 18 years, where I still have friends and a social life so active, many people didn't even realize I'd left town. I came back so often, they assumed they just hadn't seen me for a while.
I put an offer on a house there. And thus began a 5 month journey of organizing and sorting the accumulation of 55 years of my parents' marriage, over 100 years of family history in Canada, some of my stuff from 30 years living on my own, and the belongings I had acquired in 3 years living in my parents' home. It took two months working with a professional organizer and renting two storage lockers to get the house looking good enough to sell.
It did sell, and I moved over eighteen thousand pounds of stuff to my new home in my old town, which is now my hometown, the town I've chosen to be my home from now on. It was a lot of hard work, and an incredible journey. Which might explain why I haven't updated my blog in quite a while!
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!