I recently self-published a book called "Tough Care." It's the story of how my wife Celia and I struggled through a four-year period during which she was stricken by serious illnesses. Celia was a young-at-heart and vivacious woman, former soldier, wife and mother. We were married 39 years. Celia now rests proudly and peacefully in Arlington National Cemetery where our sons and I have interred her with full military honors.
Celia suffered from type 2 diabetes, which ultimately led to physical paralysis, dementia and a stroke before she died (far too early) at age 66. During this period, to maintain my own sanity, I kept a journal. I decided to turn the observations, experiences and lessons of my journal into a book because I believe it may help others facing similar situations.
I was the primary care giver for my lifelong mate for her last years on this earth. The process of her illness and subsequent passing was long, painful and arduous for us both, and it's something many baby boomers will eventually face. Academic and industry studies clearly show that home care has been, and will continue to be, prevalent in the U.S.
I derived my concept of tough care from the idea of tough love. If you are a parent, you may have practiced tough love in one form or another, or you may have had it practiced upon you as a child or teenager. Beginning in early 2007, I became engaged in something similar, but in this case, the "tough" did not describe toughness on the part of the caregiver, but rather the tough circumstances under which the caregiver had to continue to care (in every sense of that word) for a loved one.
One of the first lessons that I learned too late is that help is necessary and you should get it. As a man caring for a woman, I felt physically, mentally and emotionally strong enough to care for her. I would like to think that I did a creditable job. But it is now clear to me, looking back, that I should have tried harder to get her better, more professional help sooner. The key to that help is an order from a doctor to another health care provider. Absent that written order, you are on your own -- in terms of physical help and/or financial help. I paid for respite care (aka babysitting) for her for most of two years without any reimbursement or coverage.
Celia served in the Women's Army Corps (WAC) and maintained an independent ethos. Her mentality and her spirit were those of Athena, the Greek warrior goddess. The weak, helpless, confused and eventually paralyzed state Celia had been in for four years hurt her 10 times more than it might hurt someone else. She did not abide by someone helping her to do everything, every day (not even her husband of 39 years).
This background sets the stage for the second lesson I learned about caregiving: perseverance. Believe me when I tell you that I had any number of occasions when I wanted to just quit and run away from the situation. Picture yourself supporting the weight of a 135-pound adult with one arm while changing their adult diaper with the other. All the while they scream and holler and try to bite you.
Quitting and running away just is not in the cards, however. They need you, whether or not they realize it. You do realize it. You must do what is right for them just as a parent does for a small child. I was often struck by the full cycle of birth, growth, life and then death. The end has many similarities to the beginning.
You will be compelled by your own sense of duty and responsibility to "soldier on" through what will seem to be an endless series of difficulties. Arguing with someone suffering the effects of dementia (of any form) is absolutely futile. Confrontation does not work. You will be arguing with someone whose mind is no longer capable of rational thought. You will need to endure and continue to care for them, no matter how "tough" it gets.
The simple Serenity Prayer by Reinhold Niebuhr came to my mind on a number of occasions:
God grant me the serenity
to accept the things I cannot change,
courage to change the things I can,
And the wisdom to know the difference.
In my next post, I'll talk about the lessons I learned about dealing with the medical professionals who assisted with Celia's care.