Our Alzheimers Journey – Part Two
Steve and I continued the same general routine as before the disease. I kept him busy with various outings and activities. Sometimes it was hard to figure out what to do, so we ran errands. This worked well for a couple of years. He was so desperate to be with me that he went with me to meetings, even though he was not an active participant. We even attended a state senate committee meeting together.
The first attempts to leave Steve with someone else were traumatic for us both. I had a friend stay with him while I went to my first caregivers support group. As I was preparing to go, he begged me not to leave. Told me he was going to get a divorce. Told her to get out of his house. Threatened to call the police and other unacceptable comments. My friend left the room for a while as he paced around and cooled down; then they had a nice conversation until I returned. Another time one of the home care aides took the keys from the hook beside both outside doors to keep him from going out. He thought she trapped him inside so he smashed the window to get out. In another early incident, I went to one of Teepa Snow’s seminars and left a new caregiver with him. He got very agitated and threatened to call the police. She called me and I burst into tears. Fortunately, the agency by which the caregiver was employed had an exhibit at the seminar and told me they would send someone to help her. While visiting the exhibits, I found an agency that employed senior citizens to stay with people in their homes. The senior citizens did not have formal training, but they had a lifetime of common sense and caring for people.
The Seniors helping Seniors caregivers worked out very well for two years until incontinence became an issue. Bathing and changing clothes of a person with Alzheimers is so difficult, it proved too much for the senior caregivers and for me. I turned to a home health agency who identified staff with experience in managing the self-care needs of elders. However, I found even caregivers with dementia training have not developed habits and techniques important to caring for people with Alzheimers.
Through Positive Approach to Care, I learned many strategies and techniques that served me well as I adjusted to Steve’s declining condition. For instance, heating the bathroom until it’s too hot for the caregiver, but warm enough for the person with Alzheimers. Letting loved ones carry their own plate/food to the table instead of doing it for them. Or using a positive approach instead of saying; Don’t do that! or That’s not right. Nevertheless, I found explaining and suggesting some of these techniques to the hired caregivers was not sufficient. It took demonstrating and letting them see the positive results. I got the bathroom hot and helped with the bath, but I didn’t take over. I found complimenting caregivers on their interactions with a loved one pays off, even when they don’t do everything right. I tried to make caring for Steve a combined effort and even asking the caregiver’s opinion on hard decisions. The first time I called the agency and told them that a particular caregiver did really well, they gave her an award. She was so excited I thought she was going to pop. That employee stayed with me through the pandemic from the inception of incontinence to moving to a residential care facility.
Early in Steve’s disease I realized I was going to need to learn a lot about how to care for him and how to keep my stress down. I have chronic, mild depression so if I didn’t learn how to manage the disease early, I was going to lose Steve to a facility much sooner than I wanted. I immediately learned how to meditate, went to counseling, read books, attended seminars such as those provided by Positive Approach to Care, I started a list of everyone I could call if I needed to talk, and I joined a dementia caregivers support group. I made sure I went to exercise class, reduced, but did not stop my volunteer work, talked about it with everyone that would listen, and increased the times I asked for help. I found that in order to have enough resources to learn the skills I needed, I had to set aside my anxiety about navigating social media and learn how to tap online resources. It was essential. Monthly caregiver support groups and periodic in-person education seminars were not sufficient. I found very good resources I could use at my own pace. Along with the Positive Approach to Care website, Dr. Natalie Edmonds has Careblazers, a good website which includes a semi-monitored chat feature where caregivers post questions and the international community responds. I posted a request for suggestions for a monitor to tell me when Steve gets out of bed. Within a few minutes at 10 pm, I received a response recommending a WYZE Cam, an inexpensive video monitor, which I bought and used. Yes, I had to have help to set it up, but I was able to use it myself. Both websites provide good, research-supported, free information as well as more in depth, personalized help for a fee.
In case you missed Part One of Our Alzheimers Journey, please click here.