Just short of four years ago when my husband of 40 years had a massive hemorrhagic stroke, we were settled into what we had planned as a quiet retirement, with visits with our three grandchildren and their parents, doing a bit of travelling and a lot of gardening. Then the monster stroke happened and it changed our lives forever. I am now his care giver and he is making stupendous progress, considering the extent of the damage the stroke wrought on his brain.
However, along the way, I have been told by virtually every health care professional and Home Care worker who has come in contact with us that it was my Herculean efforts that have brought about most of the remarkable improvements in my husband’s condition. At first I pooh-poohed this, as I was watching how hard he was working, and he, after all, was the damaged one. Then my wise family doctor sat me down and told me it was time for some “care for the care-giver”. I had been told before my husband was discharged from residential rehabilitation that I could not relinquish my ‘self’ to the care of my husband. He wouldn’t want that. Unfortunately, he came down with pneumonia four months after the stroke, so I had some more intensive nursing to do. After that, he had become so wasted that he was back to the beginning as far as rehabilitation was concerned. That was when my doctor told me I had to get back some of my own interests.
When a stroke survivor comes home, it has been my observation of many families who care for the survivor at home, that none of the friends that used to visit ever visit more than once, and they cease telephoning as well. This is precisely when the care giver is needing to talk to people. The stroke survivor, if they are like the majority of severely damaged left-sided stroke survivors, are unable to speak, although they understand what is said to them. In addition, physicians who specialize in the care of stroke survivors almost universally tell the care giver that any gains the survivor makes in the first six months following the event are as much as you can ever expect. This is devastating news for the care giver. In many cases, they are facing a lifetime of caring for someone who cannot use one side of his/her body at all. Fortunately, the information they have been given is completely false. There is plenty of research showing that stroke survivors continue to improve, as long as they are stimulated, until they die. Their brains continue to build new pathways to tell their damaged bodies new ways of operating and they can make astounding progress.
It is important, however, as has been noted on many of the blogs on this site, that the care giver not give up his/her whole being to the care of the stroke survivor, even though it is through the noblest of intentions. If you are a care giver and get sick, the whole process falls apart, and stroke care givers are particularly prone to illness, as they are required to do so many more physical tasks in the home. If you do not continue to be the person your stroke survivor knew and loved, he/she will become depressed and depression is a big problem with stroke survivors. My husband and I have found laughter to be the best medicine going. Yes, he is on pharmaceuticals, but he was taking them before he had his stroke. He is still clinically depressed. I must be vigilant to his moods and never let the word ‘suicide’ cross his lips. At the same time, I must be the entertaining, intelligent, artistic person he married and intended to spend his retirement with, because we are still spending that retirement together. Our plans have altered to adjust to his physical limitations, but we are enjoying our time together as much as we would have without the monster stroke getting in the way.
I have continued with a choral group of 100 ladies which was my biggest hobby before the stroke. Although it took me several months, and in some cases years, to get back the talents and energy to work with them that I used to have, I have returned to my hobbies of handicrafts, oil painting, playing the piano, and writing, among others. This is my rehabilitation! It isn’t easy to find the time or energy to do these things when I am doing the work of three people in our home, but little things like vacuuming once a week have gone, I use the dishwasher to do the tiniest loads of dishes without feeling guilty, I have hired a gardener and a cleaning lady to help me out with chores and my husband gets the benefit of my experiences. Because he has difficulty expressing original thoughts due to his aphasia, we still have stimulating discussions, because I am still “out there” doing things. We take cruises for holidays. We had never done that before the stroke, but travelled extensively by air and car. After the stroke, I am the driver and find it very tiring, in addition to all the other tasks I have to perform, so we take cruises when I feel a “burn-out” coming. I don’t have to cook, I don’t have to clean, there is a laundry service on board the ship, and, best of all, we are treated like royalty. We can unpack – once – and we can stay aboard, or take excursions we feel we can handle physically. We see the other sides of the countries we have visited from the land, and that alone, is fascinating.
My single biggest distressing thought is the fact that there are so few care givers like me around. Either a stroke survivor is warehoused in a nursing home, or coddled in cotton wool in his/her home and not permitted to use the skill he/she has learned in therapy, or treated like a permanent invalid. Care giving is probably one of the most challenging jobs I have ever faced. It’s hard, grinding physical work. But it is caring for a loved one who would do the same for me if the tables were turned. “He is going to be the best he can be.” has been my mantra from the time they showed me the CT scan of his poor brain on admission to the hospital. In most underdeveloped countries of the world, caring for elderly members of a family comes as part of the life of that family. The family unit pulls together and, as a group, will care for their elderly members until death, if need be. This is not the norm in North America. Where there is physical distance between generations of a family, it is often impossible for family members to pull together. I hear from other care givers that many, many of them have at best no input from other family members and some actually have had a devastating illness create a critical rift in the structure of the family.
If you are a care giver, remember to avail yourself of all the help you can. Loyal friends are hard to find when disaster hits and sometimes new friends are the best answer. You need the ability to express your frustrations, guilt, and general negative feelings to someone. I use my wonderful family doctor. She’s been my friend for 30 years and knows my family as well as anyone. She is non-judgmental to a fault and very supportive. Many people will find such support at their place of worship, or community centre, or even at the therapy sessions that the survivor attends. But get it out – don’t let yourself take it out on the person you are caring for. It isn’t his/her fault he/she is ill. Given the choice, they would all be well and life would still be the way it was before.