Thinking About Long Term Care

Yesterday, one of the people I follow on Twitter posted something that caught my attention. She made the point that the decision about the best place to spend one’s senior years is a matter of personal choice. I share her opinion. What is best involves one’s personal preferences as well as the situation in which one finds herself. The research shows that seniors overwhelmingly prefer to remain in their own homes, but circumstances can make that impossible. As with so many things, “One size does not fit all.”

Kate and I have experienced that with our own parents. After her father’s stroke, Kate’s mother wanted to bring him back home. She discovered a man who had retired and had started providing in-home care. Although he was married, he moved into their home and provided 24/7 care. He was able to get away to run errands and visit with his wife who sometimes came to Kate’s parents’ home to see her husband. It was a unique situation that worked well.

A few years later, Kate’s mother had a stroke. In that case, she had a close church friend who served as a personal assistant for her mother. She knew about a woman that was retired and looking for a place to live. Kate, her brother,  and the assistant arranged for the woman to move into her mother’s house and serve as a manager of several caregivers who provided 24/7 care. That worked well until the manager developed her own health issues. At that point, Kate, her brother, and I decided to bring her mother to Knoxville.

Kate contacted a friend whose husband had recently passed away and asked her about the help she had used. Kate called the agency and arranged for five or six caregivers who provided 24/7 care for her mother in our home for almost 5 ½ years. Periodically, Kate and I were able to get away. When we did, her brother Ken came to Knoxville and stayed until we returned. That turned out to be a terrific arrangement for her mother and for us. Until the very end, she came to the table three meals each day. Although she was mostly non-communicative for most of that time, she was able to live in a normal home environment. We were glad to have her.

My mother had dementia. My father cared for her at home the entire time. My brother and I tried our best to get help for him. At one point, he accepted, but that didn’t last long. It really bothered him that much of the time the caregiver was sitting around watching TV or reading. He did use a day care center where he left my mother every Wednesday for four hours while he attended his Kiwanis meeting and did his grocery shopping. He was still driving, so he and my mother were not restricted to the house. Even in the latest stages of her illness, he took her with him whenever he went out. He was 89 when she died. She was wheelchair bound for the last one or two years. I was amazed that he would and could take her out so much. Her care took its toll on him, but it was what he wanted. He bounced back after her death and lived to celebrate his 100th birthday.

Seven years after my mother died, Dad had a stroke that affected his mobility and, for a while, his swallowing. He spent the balance of his life, almost three and a half years, in a skilled nursing facility. Although there were many things we didn’t like about that option for him, it seemed like the right thing. Even now I believe it was the best option. The major downside was that he was more mentally alert than 95% of the other residents. I tried to compensate for that by visiting him every day. In addition, he was a very outgoing person and had attracted a lot of younger friends who visited him periodically. He had been very active on email. That led me to create a distribution list of more than fifty friends and family with whom he had been communicating a long time. I wrote frequent emails using his email address and his name. Under his name I wrote, “And Scribe.” This brought him lots of responses that I read to him when I visited each day.

Given this experience, you might ask what Kate and I have planned for our future. The short answer is that we are like most seniors in that our preference is to remain at home if that is possible. We have long term health insurance that will take care of a substantial portion of the expenses associated with in-home care. Note that I said, “if that is possible.” I don’t know what lies ahead. We are familiar with the options available to us in the Knoxville area. There are at least two or three continuing care communities that I would consider if that seemed appropriate. There are also assisted living facilities, but I doubt that I would consider them, especially knowing that Kate is likely to need more personal care than they typically provide.

Kate and I were glad to have played a significant role in the care for all four of our parents, but we both agreed long ago that we would do what we can to minimize our children’s responsibilities. That could even involve a move from Knoxville to Texas or Virginia to make things easier for them. At the moment, I don’t see a move on the horizon, but I am not closing any of the possible options. As our situation changes, the most desirable options will likely change as well.

When I read the tweet that prompted this essay, I responded with my own tweet that said, “The matter of where to live for seniors is a big issue. Wouldn’t it be nice if seniors and their children worked together to make the appropriate choice?” I believe that’s a good idea. That is especially true in our case since our son is in the elder care business.

I’ve tried to keep both children abreast of our situation. This journal alone should do that. I have also made sure they are fully informed of our financial situation, something that most parents don’t think about in advance. In addition, several years ago, I put together a list of our doctors, attorney, accountant, insurance agent, banking information and medications. I am in the process of revising that information right now. We also have arranged the appropriate powers of attorney for them should I become incapacitated. I know our children are bound to discover some things that I have overlooked, but I believe our openness will make our children’s lives easier than they would have been if we hadn’t taken the proper steps to prepare for the future.

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