Am I a Caregiver? Really? Now What?
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'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!