One of the major topics among caregivers and the professionals who provide services to them and to their loved ones is caregiver “burnout.” Marty Schreiber, the author of My Two Elaines and a former governor of Wisconsin, is a very active speaker at many conferences and workshops across the country. He vividly presents his story of trying to “do it all” himself and the toll it took on him. He encourages caregivers to care for themselves and to recognize and seek help when it is needed.
I share his views and have worked hard to minimize my own stress. I watched my dad deteriorate as he cared for my mom. I am much like Dad, but I am not resistant to bringing in help.
At one time or another, almost all of my friends have asked how I am doing and if I am getting help. I appreciate their concern. I am concerned as well. I do, however, believe that I am doing quite well. That’s not to say I don’t experience stress. I do, and it’s increasing. The good news is I’ve been able to manage it pretty well. Let me explain.
My stress seems to come from two distinctly different sources. One is the sheer number of responsibilities I have. The other is a psychological one that relates to watching Kate lose one ability after another with the knowledge that it only gets worse. In this post, I will discuss the stress arising from my responsibilities as Kate’s caregiver.
The 36-Hour Day is, perhaps, the best-known resource for families who are caring for someone with dementia. As the title conveys, the responsibility for caring for a loved one with dementia requires more time than anyone has available. The responsibilities increase as our loved ones decline. If we try to do everything, something has to give, that is, some things will go undone. Often that means caregivers neglect to take care of themselves. Up to now, that has not been a major problem for me. There are several reasons.
One is that I have help. I engaged sitters for Kate a year and eight months ago. I have someone with her three afternoons a week, four hours each time. That enables me to get to my Rotary meetings, to the Y, run errands, and meet with friends. In addition, I have help with house cleaning and the yard. That means I can focus my attention on Kate.
I don’t participate in a support group, but I feel I get support in a variety of other ways. I have two longtime friends from college with whom I am in daily contact by email. One lives close enough to us that we are able to get together several times a year. We have other friends who are close enough for us to make daytrips to see them as well.
Regular readers of this blog know that we eat out for all meals but breakfast and attend live performances like the music nights at Casa Bella and local theater productions. They are both beneficial for Kate and for me. We are not socially isolated. We have church friends and staff that check in on us. I am on a steering committee at United Way and meet with them monthly. I meet for coffee with Mark Harrington every Friday after finishing at the Y. In addition, I stay in touch one or two other friends who are caregivers. I shouldn’t fail to mention this blog and my involvement with Twitter. All of these keep my mind occupied as well as having therapeutic value for me.
In addition, my responsibilities as a caregiver have not been as daunting as those of most others. Quite a few people our age are dealing with other health issues along with dementia. Apart from an occasional cold, neither Kate nor I has had any other health problems to deal with.
Some caregivers face a variety of problem behaviors from their loved ones. Although Kate has been more irritable than she was before Alzheimer’s, she is good-natured, loving, and most appreciative of what I do for her. It would be much harder for me to cope if she were not.
Finally, I believe my past experience with caregiving has helped me. I am now in my thirtieth consecutive year of caregiving. Most of that was with our four parents and my dad’s significant other. Some of that involved overlapping care of three at a time. Fortunately, we had fulltime professional care for both of Kate’s parents. Each of our parents’ situations was different and helped to sensitize me to a broad range of issues. I haven’t felt that I was caught off guard when Kate was diagnosed.
All of this is to say that I haven’t experienced the same degree of stress that faces so many caregivers. I am very fortunate. As I write this particular post, I should note that my stress is at its greatest level. I find myself slipping to take care of a wide range of obligations. Most of them are inconsequential. For example, I had purchased tickets for us to attend a local variety production of Broadway music at one of our local theaters this past Sunday. It is something we would have enjoyed, and we had no other obligations. I simply forgot to put it on my calendar, so we missed it. There are other things that relate to the maintenance of the house that get less attention than they deserve. I have plans to address them a little at a time over the next year. As Kate declines further, I will retain additional help and will likely participate in one or two support groups, but, for now, my stress is still at a manageable level. I am grateful for the concern and support I receive from those around me.