Being a Caregiver
By Jean Wise
(55th Wellesley Reunion panel discussion, 6/8/19 )

Being a caregiver is a involuntary role which most women who are married or in a committed relationship are unfortunately going to experience, if they haven’t already. I know at least two of our classmates, and there are probably many others, who would love to be here with us today but are unable to because they are at home taking care of their spouses.

Every case is different, but I’ll tell you a little of my story and thoughts on being a caregiver and how to deal with it.

My husband Morry died about three months ago after a long battle with Parkinson’s disease, along with failing eyesight. Like most of our spouses, for most of his life he was a very high-functioning guy. He graduated from Amherst, where he played varsity basketball, then graduated from Washington U. Med School and ran a busy urology practice for 40 years, He had a great sense of humor, played golf and tennis every week, and was a voracious reader with an almost encyclopedic knowledge of history. However, about 10 years ago, at age 70, his vision deteriorated to the point that he had to give up driving, then over the next couple of years, he had to give up almost everything he loved to do – first surgery, then his urology practice, then tennis & golf, and finally he could no longer read, even on a greatly magnified computer screen.

By about 2012, he began to have mobility problems – first walking with a cane, then with a walker, but still able to function at home and get around fairly well. But for the last three years, due to the combination of poor eyesight and poor coordination, he could no longer feed himself. Then, in his last year, he needed a wheelchair and in addition, he gradually lost the ability to swallow properly and began aspirating into his lungs. Last October, although he desperately wanted and begged to stay at home, I could no longer care for him at home and had to put him in a nursing home, where he died 4-1/2 months later after suffering successive bouts of pneumonia, each of which left him progressively weaker.

Needless to say, being a caregiver is a very difficult stage of life – having to take care of a spouse while watching him deteriorate, knowing that a progressive disease is going to progress and get worse, but not knowing specifically how it will get worse or how fast. But you have to get up every morning and deal with problems of the disease.

So how do you deal with it? You have to develop the mental discipline to block out a lot of your sadness and fatigue every day and concentrate on the following:

Number One is a positive attitude. Easy to say but hard to do. But you have to constantly remind yourself that no matter how hard this is for you, it is much worse for your spouse – not only the boredom and frustration of not being able to control your own body, but the indignity of being totally dependent on others for the most simple or intimate tasks – dressing you, feeding you, carting you around, cleaning up your messes and hauling you in and out of bed and on and off the toilet. And as a caregiver, you don’t want to make things worse by acting like a grouch or a martyr – you have to maintain a good disposition and gracious attitude – you have to convey – through your words and actions and expressions – that all the unpleasant, difficult tasks you have to do every are no big deal. And it really isn’t a big deal in comparison to all of the good years you have shared together.

And Number Two, which is a big component of maintaining a positive attitude, is gratitude. You need to think about all of your good fortune – all of the good things in your long life together, big and small, that you are grateful for. If it helps, make a list, and keep adding to it every time you remember something else. In my case, we were very fortunate – we had the benefit of great educations, a long & happy marriage, a wonderful family, and rewarding and prosperous careers.

And as a caregiver, I realized that I was far more fortunate than most –we had good long-term care insurance, which provided home health workers every night from 7 p.m. until 7 a.m., and I could count on getting a good night’s sleep. Also, unlike many patients with cancer or other terrible diseases, Morry was never in pain or horribly sick. And he showed remarkable grace – never angry, cross, outwardly depressed, very appreciative of all help, and with his wry sense of humor intact until the end. (One day when we were out, a man asked Morry what kind of problem he had. With a straight face, Morry replied: “I have PPP.” “What’s that?” the man asked, to which Morry emphatically responded: “Piss-poor protoplasm!”)

Point Number Three is learning to take the long-term view. Even though you don’t know exactly how long the caregiving stage of your life will last, and each day can sometimes seem like an eternity, it won’t last forever, you have to constantly remind yourself that in the total context of your life, the period of being a caregiver is going to be relatively short.

And number four, you have to take care of yourself – mentally and physically and emotionally. Make time for whatever you like to do most, and do it. But the time for yourself should include some form of physical activity. You have to keep yourself strong, because you are faced with many physical tasks that you never had to do before –all of the aspects of home and yard maintenance which your spouse formerly took care of, in addition to all the physically demanding aspects of caregiving. And when the time comes that you can no longer care for your spouse, you need to make the decision to put him in a facility, no matter how much he doesn’t want to go.

Being a caregiver is a job that nobody wants, but the only positive thing I can say about it, if you can call it positive, is that by the time your spouse dies after a long, debilitating illness, you have had time to deal with the grief and sadness in small increments at each stage of the debilitation. You’ve had the opportunity to say everything you wanted to say and to come to terms with the death, as opposed to dealing with the horrible shock of a sudden, unexpected death,

The last year of Morry’s life, I often wondered – what’s worse? Slogging through the heartache and hard work of a long debilitating illness, or dealing with the terrible shock of a sudden death? Most people only experience one or the other and can’t really say which is worse. But recently, on different occasions, I met two women who had each been widowed twice – the first time, after a sudden death, and the second time, after a long illness. When asked which was worse, they each said the same thing – that you wouldn’t wish either situation on anybody, but that as difficult and sad as the period of caregiving is, it is better to have the opportunity to say good-bye.