I support the Walk to End Alzheimer’s because as a caregiver I have learned a lot from the association and want to see more public awareness and education about dementia.
If I had to share just one important word about caring for someone you love with dementia, it would be patience. Patience is not a virtue I possessed prior to this and now realize that it is not something you miraculously acquire when placed into a situation like this. So it is a daily conscious effort to learn to be more patient. And the most important thing that I’ve learned since my husband’s early-onset diagnosis is that I knew nothing about dementia. Even though I had worked in healthcare for years, what I thought I knew about the disease as an outsider is very different from the reality of living through it. Some of my noteworthy misconceptions were that it is a disease for the elderly, when in fact there has been a significant increase in the diagnosis for persons under age 65. I also thought that the disease is primarily forgetfulness when in reality it actually affects the patients thinking, behavior and feelings which makes communication more difficult.
Not only the disease but getting to a diagnosis is a journey. A journey with an elusive and ever-changing destination. Although Tom currently has a diagnosis of Alzheimer’s dementia, there is a great deal of uncertainty as to when it actually began. We have gone to multiple doctors to get assessments and received various diagnoses including essential tremors, potential Parkinson’s and Mild Cognitive Impairment. In December 2018 a Neuropsychologist presented a diagnosis of Lewy Body Dementia. Although this diagnosis was difficult to hear, I have to admit that I had a suspicion of this from the reading I had done related to his prior testing and his presentation. Her certainty in this diagnosis and her sense of urgency for Tom to swiftly disengage from work also came as quite a shock to us and prompted us to make some rather quick decisions. Considering Tom’s profession as a Pastor and the time of year, just two weeks before Christmas, we kept the news to immediate family. Then after the holidays, we began a plan to leave active ministry at his church by the end of January. For us being publicly open about the diagnosis was appropriate, because we did not want to leave Tom’s parishioners wondering what happened if he left suddenly without a reason. There was mixed reaction to the news including sadness, questioners and doubters. But mostly a lot of love and support.
Although finally hearing a healthcare professional be specific about a diagnosis was something we had searched for, now there were many more questions than answers. I must say that I saw, especially at the beginning, improvement in Tom’s overall health after leaving the daily stressors of full-time ministry. One of the most difficult things for me to watch was how sometimes he was treated poorly by others. I could see that he was slowing down and tasks once easily accomplished were now more time consuming and challenging. But to others who were unaware of his changing condition, this behavior leads to negative commentary and impatience from others. This is something that I fear will continue to happen as time progresses, with people that are not close to us, and it breaks my heart.
As with all things that happen both good and bad, life goes on and we do not get to select the timing. But God is good and there is always something to be grateful for. For us, it came in the form of becoming first-time grandparents just two days before Tom’s last Sunday sermon at the congregation he served. That was a great motivator for staying strong! It has now been nearly two years since that diagnosis and many years searching and the journey is still a winding road with an indecipherable map. The doctors continue routine monitoring and testing of his physical and mental status, and medication adjustments as indicated. There are great days and tough days, and with the complication of the current COVID quarantine, we try to find new ways to stay active.
We are still active in church, in our new hometown close to our adorable granddaughter. Tom continues to use his speaking gifts to talk about Alzheimer’s at various group meetings in the community. And has had the opportunity to stay in touch with some of his ministry colleagues. I believe staying connected to what he enjoys is very fulfilling for him and beneficial to keeping healthy. We continue to read and participate in support groups with the hopes of learning more and being able to cope with whatever lies ahead. The work at the Alzheimer’s Association is an important part of ongoing research and public awareness which will help to find a cure for this devastating disease. Please participate and please give.