I just came across a post on Facebook (from the Compassion Fatigue Awareness Project) that over 1000 caregivers in New York were surveyed, and most said the one thing they need most is help navigating all the services available, and help making decisions that face them in caring for their family members and loved ones. A link to the article is at the bottom of this post.
In my own case, I was lucky in many ways. Right after my father's death, when I was faced with caring for my mother, I was told by her doctor it was "medically unsafe" for us to live together. I had panic attacks, my mother would become hostile and paranoid, and at times she had psychotic episodes. Anti-psychotic medication helped with those, but the effect took months. In the meantime, caring for my mother could not mean having her live with me or vice versa. Another option had to be found.
This might not seem to be a stroke of luck, but looking back, it was. I did not have the option that seems the most clearcut for most people, to try to keep my mother at home or have her move in with me. For most people facing decisions about their relatives with dementia, keeping them at home seems self-evidently the best possible choice, and any other option seems cruel, unethical or inadequate. We all are certain that we can somehow care for our loved ones better than strangers can. We know the foods they like, what TV shows they prefer, which clothes they want to wear.
But with dementia, especially Alzheimer's, come changes that are invisible at first. I remember the day my mother decided to make herself an egg sandwich. She boiled a couple of eggs and didn't use a timer. When they were done, she peeled them, then put them on the bread and crushed the eggs with a fork. I don't know if she wondered why this sandwich didn't taste quite the same as egg sandwiches always had in her life. I just know that I was horrified. This was my mother, MY MOTHER, who had taught me how to boil eggs and make egg salad sandwiches, whose potato salad was the envy of many other mothers at picnics and potlucks. Who tried almost every recipe in Mastering the Art of French Cooking by Julia Child. A person can certainly survive by smashing boiled eggs onto a piece of bread, but the quality of life is no longer there. She was not capable of feeding herself beyond the basics. That was only one aspect of daily life she was no longer managing.
I discovered later she was sneaking out of the house in the early morning to tell a neighbour I wouldn't let her watch TV or use the phone. She tried to sell the house one time when I went out for dinner. She accused me of trying to kick her out of her own house when I agreed to drive her to see her sister, after she'd cried every day for a week that all she wanted was to go and see her. All of these are situations that are commonplace for families of people with dementia, but when you're in them, you can't imagine how to cope. Calm discussions about how to make a proper egg salad sandwich, or who should cook dinner, were not something we could have at this point in her life.
Being told it was medically unsafe for us to live together was a relief for me. An entire range of possible choices had just been taken off the table. I made a reservation for her to move into a new senior's residence that was just being built, but it would not be ready for a couple of months. In the interim, a friend found a group home an hour away, close to my mother's family, and she agreed to move there. Even though there were numerous concerns we had about it, it was the best possible place for her at that point. There were only a few residents. My mother got personal attention there and lots of interaction. They helped narrow down her more problematic symptoms and arranged for a specialist to see her, and she made a couple of pals there, who'd cajole her out of the worst of her sulky moods. I couldn't have done that.
By the time her apartment was ready for her to move in, her medication was working and we had a clear diagnosis. I'd also had a chance to see a social worker for caregiver support, whose role was to help the elderly and their families navigate the system. We had time to explore decisions I needed to make, the pitfalls of being a caregiver, where to look for resources, how to handle my own emotions in dealing with my often unpredictable parent.. He didn't help me make decisions; he did help me find confidence in my own ability to make those decisions, and he affirmed the ones I did make.
These days, more than two years after my mother's death, I try to help friends I see struggling with the same issues. Almost all of them run up against the same obstacles. They assume doctors are the only conduit for medical information, or that all services are accessible through their doctor. They get no support as a caregiver from their own doctor or their parent's doctors. And unless they themselves seek out information and help, it's almost never offered to them. But how do you know what to ask for, if you don't know it exists?
Caregivers are rarely, if ever, given a timeline or flow chart of what has to happen first and who to contact to start the process. So, for example, the Department of Veterans Affairs will pay for housekeeping and other services for veterans and their families, but DVA needs an evaluation or diagnosis before they'll pay for medical care at home or in a seniors' residence. Delaying an evaluation by Home Care (as it's called in BC) because you think that means you'll need to use Home Care's services, or that it commits you to a specific course of action, can mean a delay in getting the DVA to cover a service your parent needs.
Or the caregiver worries that there won't be enough money, only to find out their parent's income or assets are too high for them to qualify for certain benefits. Estate planning and management of financial resources is critical, and often beyond most of us. As a person who'd just been in the work force and had been married to a man who'd retired but was still below the age of transition from RSPs to RIFs, I had no concept of how to manage money for someone in their 70s. Stepping into my father's shoes as the person who handled all the money decisions for a senior was terrifying for me, even though my father had done his best to leave good records.
I only went a short way down the road of dementia with my mother. A good friend had gone the whole way first with her mother-in-law, then with her own mother. The greatest gift she gave me was her humour and the sense that I wasn't alone in this, that someone else had been where I was. Her mother died 7 months before mine. She was well into severe dementia by then. My mother was, at worst, only moderately demented by the time she died. And I'd had tremendous support and help along the way, from the social worker/counsellor I mentioned, from doctors and the nurses at Home Care.
I was headstrong enough and still young and energetic enough to ask questions, not simply take whatever I was told, to keep reading and looking things up so I knew what questions to ask. I listened to everything people had to tell me. I took a class on dementia caregiving, which was excellent. And I told every one I dealt with, "my mother has dementia," that I was handling matters I had no experience with, and I'd appreciate all the help they could give me. Almost no-one disappointed me.
Not everyone who faces the task of caregiving is that strong. By the time a parent becomes frail or will allow themselves to be helped, the caregiver may themselves be ill or they have work pressures or other family obligations. Navigating the system was, at times, a full time job for me, and even when I wasn't actually on the phone or talking about my mother's care, it was on my mind.
We need more people in the system, or who are familiar with the system, to provide help to caregivers.
Recently, a friend of mine contacted me about her concerns caring for her elderly parent. She herself has serious health issues. Her children will only help if there's an emergency and when they do come, they're critical, wondering why the Christmas decorations are still up, they have little sympathy for her fatigue or inability to cope with anything beyond the immediate health issues her parent faces, and they don't want their mother to cry or talk about her worries. She feels alone. She's tried to get an assessment from Home and Community Care, and until she does, no assistance can come from other sources she knows are available to her, including the Department of Veterans Affairs who would pay for all or most of what she needs. It's been 4 months now, and Home Care is still too booked up to get the assessment done.
The irony is that if her health were to fail, if she were to be hospitalized or even die, care for her father would suddenly be available. But as long as she's willing to struggle on, their case drops farther down on the priority list. I know people who work in healthcare, and I know this is nobody's fault. Money is tight and getting tighter, there are restrictions on services, and despite good intentions, bureaucracy comes to feed off itself rather than focussing on the services it's intended to provide. This simply does not work to anyone's advantage. Our modern Western medical system is not designed to keep people healthy so they don't need care, it's designed to intervene in a crisis. Preventing a crisis is not a priority, even though it should be. Some even say that it's not "health-care," it's "sick-care." Until you're sick, the medical system has nothing to say to you. No help is available until you're demonstrably unwell.
Here is part of a message I started to her, with some other thoughts added for clarification. I've edited details to protect her privacy. The fact is, her situation is so common it hardly bears thinking about; when it comes to the elderly, family caregivers provide more than 50% of care today. If a family member cannot provide care, that affects all of us. Yet most people don't even know where to start to get help or even advice. Everyone is sure that keeping people at home is always the best solution, that their problems are unique to them, that their questions will be heard as a lack of trying, an admission of weakness. That's far from the case but the word needs to spread so that all of us can get the care we all need.
I started to say to my friend: Your concern here is that your health is uncertain, there's no backup plan, and despite repeated attempts to get him assessed for assistance you know is available, delays in the system have kept you waiting for more than 4 months now. Without that assessment, you're not able to access the help YOU need to carry on providing care for him in the home. Your healthcare needs mean that at any moment, he could be left with NO care.
It's so hard for us to know how serious our own situation is. In your case, if something happens to you, if you were to be hospitalized even briefly, Home and Community Care would be forced to step in, or your father would be transferred to the first available bed in a hospital or care facility. Given your health issues, this scenario is not unlikely.
In fact, it's very common for the caregiver to die first or be hospitalized, because caregiving is a serious health risk even for a healthy person. This is why I'm suggesting you talk to your own doctor. The system is delaying because of their internal issues, but if you do not get the assistance you know is available, you will be forced to use the system. Home Care is the bottleneck here, preventing you from doing the exact thing Home Care itself will benefit from, continue to care for your family member in their own home, with adequate support from various agencies.
I think part of why I was able to access help is that I went into the situation knowing it was not possible for me to handle things alone. There was never a point where I could have been at home alone struggling to care for my mother. I was willing to take on the challenge, but my mother was intermittently very hostile towards me. Her own doctor said it was "medically unsafe" for us to live together, which meant I HAD to find alternatives. Caring for her myself was not an option. And when a family caregiver is not present in the home, suddenly doors open and help is available. But as long as you're willing to be there, then your case is not high on the list because of budget cutbacks and other pressures on the healthcare system. It's a terrible dilemma.
For us laypeople with no professional medical training, who only know our own problems, whatever we're going through seems unique and insurmountable. For someone trained who cares for the elderly every day, it's easy to know what's normal, and what is not normal or acceptable and could be helped with drugs or other medical interventions. Having professional support can be crucial, but it can be SO hard to get access to!
Many of us are sure we can care for our elderly loved one better than a professional, but that's often not the case. Someone with training can do the same things, sometimes in a less caring or loving way, but sometimes more efficiently and in a way that is less intrusive because there's none of the embarrassment or fear we might bring to things.
I was lucky. I never had to change a diaper for either of my parents, or do any of those tasks that force us to cross a line within ourselves. My mother was hospitalized for 3 weeks in her final illness, she did lose control of her functions, but nurses and nursing aides handled the messy jobs for me, which spared both me and my mother. And this was always done in a caring but practical, no-nonsense way, because these people are trained to do this and they do it every day.
After my father died and I had Mom evaluated, I moved my mother to a group home. Within days, they'd identified issues that made her care very difficult even for them. The same issues had led to Mom's intermittent hostility toward me, and caused much stress and heartbreak for my father, but we coped on our own, figuring this was "just how Mom is." A worker from the group home got on the phone to me, and said, "this is bullshit. She's suffering, the people around her are suffering, she needs drugs. This can't go on."
The group home arranged for a specialist to see Mom. The medication he prescribed made a huge difference, like night and day. With a small regular dose of the right drug, my mother became her true self, "a real sweetheart," a pleasure to be with, as several professionals said about her. I've often wondered how different things might have been if my father had asked for help sooner, if we could have gotten an evaluation and medication for Mom sooner. My father's life might have been longer and happier, but at least, the worst of what he faced could have been made more tolerable.
My father and I only discussed our concerns about Mom in undertones and whispers when she was out of the room, and only rarely, maybe 5 or 6 quick comments in two years. We had a real conversation about it only when he was hospitalized during the last month of his life, and by then, it was too late. As often happens with caregivers, his health declined and he died before she did. I have no doubt that the strain of caring for her hastened his demise.
Two months later, there I stood in the kitchen of the group home, having a calm, practical discussion about my mother's situation with strangers. They were compassionate, concerned and caring, and professional. At one point, the owner of the group home asked, "was your father covering for your mother?" I said, "oh yes. Big-time." He shook his head and said, "that always happens. They think they're doing them a favour, but it's the worst thing they can do." And I realized that my private tragedy had been summed up in one sentence by someone who'd never known my father. It's a commonplace occurrence, it happens to families every day. And there are people who can help, who are trained to handle this.
The hard part is finding the care and accessing the services. But even harder is recognizing that most of us have no training in caring for the elderly and very sick, and that sometimes we are not the best people to do this. Or we need more help to do it than we know how to accept.
Another friend told me the story of how she did a lot of work calling doctors and following leads to get her daughter's tonsils taken out, and the Ear Nose and Throat specialist gave her a high-five for taking on the system. During the time I was caring for my mother, my own doctor said "kudos to you for getting her into care so quickly." He said that very often, the first time the medical system is even aware there's a problem at home, it's when someone has to go to Emergency. Then the family expects the system to step in at that point, and it's very difficult.
What he didn't say is that the person who goes to Emergency, alerting the system to a healthcare crisis involving an elder, may not be the elderly person, it may be the family caregiver. In a caregivers class I took, the teacher said they'll often ask a caregiver who's reluctant to seek help, "what would you like us to do with your loved one after you die?" Because that scenario is just as likely as the one we all assume, that we, the healthy one, will be the care giver, the elderly person will die and we will move on. The healthcare system knows this very well, and they really would prefer not to have two patients in the system needing care. But gaining access to the help we need is not easy. It's not made easy for us unless we rattle some cages, pound on doors, make phone-calls, ask the hard questions and stand up for ourselves. And when you're in a state of crisis, that's the last thing you'll be capable of doing. It shouldn't have to be this way, but it is.
A basic introduction to dementia and Alzheimer's from HealthBC:
SeniorsBC, a page with links to many resources on advance planning, care for seniors, information on housing and housing assistance, and many other useful topics:
Financial strain on caregivers:
Family Caregivers Network Society in Victoria BC, with links to resources:
Caring for Someone with Dementia, from the Alzheimer Society BC. This provides capsule descriptions of many topics, from Self Care to understanding symptoms, planning and so on.
The Alzheimer Society of BC. You are not alone. Whether you've been diagnosed with dementia, or someone you love has been diagnosed, and whether it's Alzheimer disease or another type of dementia, this is the best place to start. The Alzheimer Society runs support groups and courses for caregivers (I took one that was attended by people whose parents had recently been diagnosed, to a woman who was caregiving for 8 elders, to care aides who wanted more understanding of the people they worked with daily. One principle we learned is that "everything we know about Alzheimer's we've learned in the last 10 years. Whatever horror stories you remember about your great-grandfather wandering down the railroad tracks or people in care homes being sedated comatose, the state of care for dementia sufferers has advanced, our grasp of what it means to have dementia has changed, and the support for caregivers is much, much better than it was. The focus now is on "person centred care," and for you or your loved one, that focus begins with you.
How to prepare for talking to your doctor or your loved one's doctor:
I wrote a two page letter to my mother's doctor, outlining various things my mother had done, said, not done that would be normal to do. While modern privacy laws prevent someone's doctor from talking to you about their medical conditions, nothing prevents you from providing information to their doctor. Keep in mind that a person with dementia loses judgement, and they lose their ability to monitor their own behaviour. They may not know how much their abilities have declined. They may not want anyone to know, because they think it's temporary or they're ashamed that they can no longer do things they used to do. They may tell their doctor everything is fine, or that their children/friends/spouse are concerned, but it's really nothing. Fear is entirely normal, for a person who suspects they have dementia, and for their families and friends. And a doctor sees each patient for only a few minutes and goes on what patients say. Unless their attention is brought to a certain symptom or problem, they have no way of knowing it's going on.
Document specific behaviours, including times of day, what she said or did, what else may have been going on (did she just wake up, when had she eaten last, who else was present, unusual circumstances or stresses, distractions). Don't try to interpret or edit, just document, then compare your list with a checklist for dementia.
At the same time, don't assume that all memory loss or confusion is dementia, or that all dementia is incurable. There are 80 known types of dementia, 50 are reversible. Many other illnesses and conditions cause confusion, disorientation, memory loss, even psychosis in the elderly. Seek medical advice, don't make assumptions.
The elderly may not display illnesses the way younger people do. Urinary infections can cause what appears to be dementia or even raving psychosis in a senior. Low levels of salt or elevated calcium can cause confusion and memory loss, and can be life-threatening. I said at the memorial service for my parents, "there is nothing to be gained from denial or delay." The principle in all elder care is "sooner rather than later." Don't wait for a crisis to force you into making a decision.
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.
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!