In spite of all the services I described in earlier posts (here and here), the vast majority of caregiving hours in Ontario are provided by family members. These family caregivers face a wide range of situations, some finding the work highly stressful and others finding the work a pleasure.
At one extreme are those adult children who may visit an elderly parent once a week, perhaps helping with shopping or banking. At the other extreme are those caring for a disabled child or a spouse, where the caregiver lives in the same home as the patient, and where the ‘caring’ goes on all day long. Family caregivers report that these are the most stressful situations. In between is the ‘sandwich generation’, caring for elderly parents while still raising their own children.
I don’t want to dwell on our limited personal experience, so this is one of those posts where I relied on the literature. I found two reports particularly helpful – ‘A Profile of Family Caregivers in Ontario’ and ‘Family Caregiving: what are the consequences?’ Google them if you like. The basic point these reports make is that unpaid and largely invisible family caregivers make an enormous contribution to the health care system (3 million people annually in Ontario providing millions of visits to those in need). And yet this work goes largely unrecognized, and there are essentially no programs designed to help the family caregiver.
They go on to provide a detailed breakdown of who these caregivers are, and who they care for. Only 8% care for a spouse and only 5% for a child, at the intense end of the spectrum. At the less intense end (usually), a full 71% care for parents or other relatives. They also report on the challenges that these caregivers face. Commonly reported problems at the intense end of the spectrum include: feeling tired, anxious or worried, overwhelmed, angry or irritable, or having sleep problems.
Significantly, there are few complaints about the work being too hard, rather all these concerns are about psychological stress. And among this, “People who care for or help their partner or child are most likely to suffer from an elevated level of psychological distress”.
Putting my brief exploration of the literature up against our own experience makes me realize that the current PSW program in Ontario is actually a source of stress for many recipients of care. For us it’s the uncertainty of not knowing either when we will get help or whether we’ll get it at all. Some nights people just don’t show up; some nights we get a call saying they haven’t been able to find anyone to come.
My conclusion is that the small portion of family caregivers who support a spouse or child is the part of the system that is broken and needs investment of new staff. Usually it’s a specific part of the care that requires extra help (for example morning or evening care). Without the support of the public caregivers for the difficult part, the family caregiver is overwhelmed. It's the combination of publicaly-supported caregiving and family caregiving that makes it work.
There definitely needs to be much more of an investment in extra staff, with the population aging.ReplyDelete
I'm an only child. I chose to be my mother's caregiver in her own home. I felt it was better for both of us. The thought of visiting her frequently in a nursing home felt harder to me. She was in a wheelchair and needed 24/7 physical assistance, but was mentally sharp as a tack until 97. We did this for two and a half years. Before that she lived on her own in an apartment style condo with help from me for shopping, etc. In the later years she qualified for some home medical assistance through Medicare, but there were no programs to assist with the caregiving. Fortunately, she could afford part-time helpers to come in to give me breaks, sometimes for daytime coverage, and sometimes for day and night coverage so I could go home to be with my husband. All the stresses you mentions applied to us. I know it was stressful on Mom needing the constant care, and at times stressful on me and my husband as the caregiver, and caregiver's support system. But it was well worth the effort for all of us. - MargyReplyDelete
Family caregivers are so important and so often overlooked.ReplyDelete
The PSW situation can be frustrating as we know, sometimes no show or when they will be there, and nit reliable so sad.ReplyDelete
It's a difficult situation, and every one is different. I'm just glad you have Mrs. FG and send her my respect for all that she does. Our system in the US is far less helpful than in Canada, so I can only hope that you will be able to find some help to relieve her burden. Here in the US, you pretty much have to fend for yourself.ReplyDelete
Now, I have no doubt of the difficulties those in need must face although I have to admit how naive I was to it all until you shared your experiences and discoveries.ReplyDelete
My heart goes out to you both and sometimes we forget to think of not only what you're going through but your caregiver, Mrs. F.G. who is there 24/7 for you. Bless you both!
I am familiar with these problems but in Alberta. It is stressful for all involved including the one requiring the care. Even in the hospital near the end we had to implement a care system for my father. The staff were too busy to even help him brush his teeth at night. Such a sad situation. He kept asking why he was alive. He no longer wanted to live trapped in his body. However unlike you he had no computer ( he never learned how to use one ) and the hospital he was in was so old that he had no TV and his view was a brick wall. His only link was to the world was a transistor radio and if one of his children decided to drop in to visit which was not often. My three siblings lived there but I lived in B.C. I left my husband and my home for three months in order to spend 12 hours per day at my father's bedside I don't regret one second of it. I do regret that my siblings seldom visited for my father's sake and yet now that he is gone they claim to miss him so very much. Why did they not spend time with him before it was too late?ReplyDelete
Great post. We (my wife and I) are family caregivers. Very difficult and challenging, and (at times) rewarding.ReplyDelete
This has been interesting to read...I cannot help but compare to us....ReplyDelete