Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?
There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.
Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.
There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.
- Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
- Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
- We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
- We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
- For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
- There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.
This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.