I’ve been working for the past 18 months on a memoir of my caregiving experiences. My husband and I had four parents, all living close by, and as they aged we became their caregivers and advocates. We did it willingly and lovingly and yet by the end we were exhausted.
It was an interesting and I think, a unique experience because our two sets of parents approached aging very differently. I thought I could write a book that would help baby boomers plan for their future and hopefully make the lives of their future caregivers a little easier.
My husband’s parents did not want to acknowledge they were aging so made no plans for their future. They would not accept help and resisted any kind of support that would have made their lives, as well as ours, much easier. They said the only way they would leave their home was in a hearse. Unfortunately it was in an ambulance and when we began the long, back-breaking and emotionally draining process of cleaning out their home we vowed we would never do this to our kids.
My parents had all their plans in place. They had downsized twice, had purchased their final resting place, had a file folder with funeral plans and made it clear that they did not want heroic measures at the end of their lives.
My Dad was the only driver and he told us that when we thought he could no longer drive we were to tell him. We did, and he never drove again. They also said they did not want to be a burden and if we thought they needed to move into a care facility we were to tell them. We did, and they moved.
What we came to understand is that even though my parents had all their plans in place it was still difficult. What made it better was that when we made a decision about their care when they no longer could, we knew we were doing what they wanted, even when we could tell they weren’t pleased.
With Bob’s parents, we felt like we were constantly disappointing them. When the medical people said that they needed support in their home, they resisted. When they were no longer able to stay in their own home after a medical crisis, we had to make the decisions, knowing none would be satisfactory for his parents. This was emotionally draining.
What have we learned? First we have already downsized, have bought our final resting place and have been busy during the pandemic trying to get our financial affairs as simple as possible. We are trying to keep in good physical shape and maintain our health. We have been very straight-forward in telling both our kids about our final wishes. We have completed the legal documents needed in hopes of making it as easy as possible for our children.
Because in Alberta, there is not one government department that handles seniors, trying to access support and care is a nightmare. We did it four times and every time it was horrible. We never got the same answer and spent hours and hours on the phone on hold, or being transferred, or being told they no longer handled that aspect of senior care. With so many seniors it only makes sense to have one ministry handle it.
There is not one place to ask questions or find answers. I asked about a portal where ‘all things about seniors’ could be found. The answer, from a government employee, was that “things change so often it would be impossible to keep such a site up to date!” Does this not appal you?
The existing system of care for seniors was set up years ago. Because we are living longer with more complex medical needs we need different care. What worked 50 year ago does not work today and as I visited my three grandparents in nursing homes I didn’t think it was working all that well 50 years ago either…..yet nothing has changed…..and in some cases the same buildings are still being used!
Aging is not a medical issue that more pills, unnecessary medical tests or operations can fix. I know that more rooms in these mini-medical facilities (we call assisted living or SL4 care etc.) are not the answer. Nobody I know wants to end up there!! Yet there are no other affordable options.
We need our government to acknowledge that the system is broken and instead of pointing fingers, or saying during news conferences things must change, they need to sit down and make some radical changes based on what seniors today actually need.
My dream would be that there were smaller facilities, more home-like and the focus of care was on individual needs. While on paper most facilities say they focus on individual care, they do not. In the existing models it is impossible. I witnessed it in the three facilities our parents were in.
Big dark dining rooms where meals are handed out to silent guests is heart-breaking. My parents loved chatting at meal times yet when sitting with other seniors with hearing impairments and cognitive issues it soon was not something to look forward to. If staff were required to sit at each table, eat with their guests and chat, I know guests would look forward to this part of their day. They would get social stimulation and this would be as simple fix. In the existing institutional-type of facilities there are very few parts of the days, guests look forward to.
What we learned from the pandemic is that the air filtration systems are not safe and must be replaced. Also to leave seniors in places where there is no air conditioning should be considered a crime. (These two issues are also common in our schools) Perhaps it is time we charged the people who are making these decisions.
We know that most seniors would prefer to stay in their own homes, yet few can with the existing home care formula. It would be much more cost effective if our governments funded more home care hours per patient than uprooting them and placing them in a facility.
The seniors I know who stay in their own homes either have a huge bank account to fund their care or they have family members who have taken on this full time role, usually at the expense of their own personal health.
Baby boomers need to be vocal. We need to hold our politicians accountable. Write letters, ask questions and don’t let this go. Ask for specific timelines for change and don’t take ‘we are working on it’ as an answer. “They” have been working on it for years…We need action NOW.
An easy first step is to place all senior care under one ministry. Insist that there is a government portal where those of us who need information regarding seniors can go.
Also look at specific education for staff who deal with seniors. Seniors need a different kind of care than a hospital patient. Also look at the types of staff roles needed – depression is a huge issue in seniors, as is mobility and the importance of laughing and socializing. Seniors don’t need more pills they need more compassionate care as they prepare for the end of their lives.
The pandemic highlighted that the way we care for our seniors is a huge problem that cannot be ignored. Don’t let our politicians point a finger at another department… that has happened for far too long. Stand up and take action today. It is evident that the squeaky wheel does get the grease.