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.
I often think about bridges. My father was an engineer, working for the Department of Highways in the Canadian province of BC for 37 years. His working life was spent dealing with bridges and roads.
I think bridges are possibly the ultimate marriage of imagination and function. Most people just drive on them. A few bridges are well-known landmarks: the Golden Gate, the Brooklyn Bridge, Lions Gate Bridge in Vancouver. Bridges can be seen as beautiful structures even by people who have no concept of what goes into designing, building or maintaining a bridge. Or bridges can be just a way to get to the other side.
Just think about it for a moment. If you look at a river or a canyon, do you see in your mind's eye a way of crossing that expanse, or do you see an impassable obstacle? Most of us see the space, we don't envision any way of getting across it. Yet engineers and bridge builders can imagine a bridge where no bridge existed before. And this is not just a vision or a dream, they also see how to go about building it.
Today, there are 6 main types of bridges. The ones I mentioned above that are landmarks are all suspension bridges. I won't go into all the types here; you can look them up on Wikipedia yourself if you're interested. When you imagine creating a bridge, you probably think, okay, toss a log across the stream. What if the stream is wider than the longest log you have available? Hm. Maybe pile up some stuff in the river to hold up the place where two logs meet. Okay, that can work. But there's a limit to that. You need a lot of long logs, and if you're going to take anything across there, like a wagon, you need a bridge deck, so now this is getting complicated. And how many rocks will you need to hold up all this stuff? If you pile up enough rocks in that river, you might stop the river from flowing so your bridge is now a dam, and you have a bunch of new engineering problems.
Arches are one way of solving these problems. An arch is very strong, so it can support a lot of weight on fairly slender piers. The Romans did this, and lots of Roman and medieval bridges built with arches are still standing.
All bridges are always a compromise, a balance, among several factors: how much traffic the bridge will bear, the length needed to span the river or canyon, the force of the river, the force of wind, the weight and shape of the bridge itself. A bridge has to stand up to the dynamic load of people and vehicles crossing as well as hold up its own weight. Yet the bridge also has to allow water to flow under it.
Building a bridge means planning out every step ahead of time. With some of the ancient bridge building methods, you may just build out from solid ground. Sometimes, you need to create falsework, essentially building a temporary structure that allows you to build the bridge, and once the bridge is complete, the falsework is dismantled.
A suspension bridge is a feat of daring as well as engineering. There are photos of the Lions Gate bridge under construction that show the bridge deck suspended from the middle of the supporting cables, before the deck was extended out from the towers. Other suspension bridges were built by extending the deck out into space from each tower. Imagine what it takes to imagine that. Imagine what it takes to come up with the plans to make that happen. Imagine what it means to be so sure you can do this, that you go ahead and get it done. That entire crews will do what you ask and work long hours hundreds of feet above the ocean, or down in a caisson under the water, to fulfil your vision.
No-one builds bridges alone. Every bridge takes many people, tools, equipment, material, time. Materials need to be tested; on a suspension bridge, even the weight of the paint must be considered.
Yet any bridge begins with the vision of one person who thinks, "we can build a bridge across there."
Below: Nelson Bridge, Nelson, BC, spans the West Arm of Kootenay Lake. It was built in 1957; before that, a ferry took passengers and traffic across the lake. Originall silver, around 1970, it was painted orange under the direction of H.J. Kelsall, Bridge Engineer for Region 3, Department of Highways. That decision was controversial at the time, but later, Big Orange Bridge, BOB for short, became an icon of the City of Nelson.
H.J. Kelsall was my dad. It takes vision to build a bridge. It takes vision, and a fair degree of courage, to paint a bridge orange!
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!