Part Five: Letting Go
In Part 4, Marie and I added a Care Manager (CM) to our team. Until then, I was essentially winging it; handling each challenge as it arose, and doing the best I could with the advice and instructions I received from Marie’s Primary Care Physician, her Neurologist, and the new acquaintances I had made in my caregivers’ support group.
With the addition of the Care Manager, I now had access to the care giving knowledge and training that I lacked. For instance, when Marie fell a few months later, I had someone who met me at the emergency room and knew the questions to ask related to the tests they were taking. And, when the hospital released Marie to a rehabilitation facility after her stay there, the CM knew who to contact to order a hospital bed, wheelchair and portable commode for Marie’s care at home, since she was no longer able to climb the stairs to the second floor. The CM also advised me to look into alternate options of care that I did not know about and had not considered before.
The first option I looked at was adult day care, which provides activities, socialization and personal care each week day. This option is especially important for caregivers who work. When considering this option, if you anticipate that your loved one will be attending for a length of time, it is especially important to choose a facility that not only accepts clients who are in the early stages of dementia, but also those that will allow a continuation into the middle and late stages, as well. Since I am retired, however, I thought that hiring a Home Health Aide to assist me with Marie’s personal care would be a more appropriate option, so I contacted one of the home health care agencies and hired someone to help out for six hours each week day. The aide arrived around 11:00 am the next day, and helped me get Marie awake and out of bed, wash her, her clothes and the bed linens, and provide Marie with a mid-day meal. She then sat with Marie during the afternoon, while I shopped for our groceries or attended medical appointments and, later in the day, she prepared dinner for Marie. Although this help made sense, and appeared to be a good solution for us, both Marie and I were a little uncomfortable having a stranger in our home. Despite that, we decided to give it a go. Within the first month of attempting this option, however, we had three different aides assigned to us; the first one lasted two days and the second, one week. Although the agency advised us that each aide was not able to come to work due to child care issues, we were left wondering whether they had figured out our life style and didn’t want to work for us. However, the third aide, who was a bit older and more mature, clicked with both Marie and me right from the beginning and stayed with us. It may just have been that finding the right person simply takes a little time.
While the third aide was with us and things had stabilized, the CM suggested that I consider looking at memory care facilities. Although I felt that that option might be one that we would want to consider at some point, I hesitated because I believed that such an option was a bit premature (at least two years away, I thought). Despite that, several days later, the CM brought me a list of four facilities that her firm had already vetted and recommended highly. I agreed to contact them the following week and arrange interviews with and tours of each. Our agreement was that I would visit the four facilities myself, select the two that I thought Marie would like best, and the CM and I would arrange to tour those two facilities together a few weeks later. So, I set up dates for my solo tours, completed them all within one week, and afterward, did a comparison of all of them (including: their distance from our home, their location and setting, the services they offered, their cost, and, most importantly, how I felt Marie would view them). The one I ranked the highest was on one floor, had ready access by residents to an outside courtyard, and was set up in four neighborhoods, much like a summer camp. Since Marie had attended summer camp during much of her childhood and looked upon her beloved Camp to be the place that she loved most in the world, I knew she would like it.
About a week later, as I was about to arrange the two tours for the CM and me, our plans were changed suddenly when Marie fell in the bathroom and hit her head on the stone floor. The home health aide and I, who were both close by at the time of her fall, called the rescue squad and Marie was transported to the emergency room of the nearest hospital. Despite all of the care, assistance, and precautions, this was the third ambulance ride Marie had had due to a fall in the past four months. It was this last fall that convinced me that the most important thing to be considered was not my need to take care of Marie at home, but what was best for Marie.
And it was then, after considerable hand wringing, soul searching, and (I admit) weeping, that I came to the conclusion that I needed to let go and transfer Marie to a place where trained professionals could take care of her safely 24/7. So, although I am not the most trusting person in the world, I called our CM, discussed this decision with her, and asked her to contact the memory care facility that we had decided upon the week before to see if they had an opening. Fortunately, they did. In fact, since it was the height of the COVID pandemic, they had several. When I asked them how many COVID cases they had currently, and they indicated that they had none; that did it. I knew that facility was the right place for Marie. The next day, I did one of the most difficult and heart-wrenching tasks of my life: I drove Marie to the chosen memory care center and drove home - alone.
As if that weren’t hard enough, to make Marie’s transition to her new home easier and less confusing for her, I was asked not to return for my first visit with her for at least a week. Needless to say, that time was very difficult for me. I had seven days to do nothing but worry about how Marie was acclimating to her new environment; whether the staff was able to make her feel comfortable and safe; whether she felt that I had abandoned her, and on and on (the list of questions rolling around in my mind was endless).
When the seven days were over and I returned for my first visit, I was astounded to find Marie chatting with the staff and other residents like they were old friends that she had known for years. When she saw me, she welcomed me warmly as though we were still living together and nothing had changed. And indeed, nothing important had changed. Although we were no longer living together, our feelings and love for one another were still very much there.
In the next part, “Learning a New Way,” I will discuss Marie’s new life at the memory care facility, the realities of having a partner/spouse with dementia, and the emotional difficulties of being separated after having lived together for so many years.
About this Story
This is the fifth part of our story intended to reach out to members of the LGBTQ community of Washington, DC and its suburbs. We want you to know that you are not alone, and that you and your loved ones are welcome here at Insight.
Activities & Engagement
"I like that IMCC focuses on dementia-related problems and provides a focal point for families to network and socially interact in coping with dementia. It provides a community that helps us in our struggle."