One of the most difficult things a child could ever face is taking care of a parent with Alzheimer’s disease or another form of cognitive decline/dementia. While growing up, most parents are role models. Even with the normal angst of a parent/child relationship it is no secret that parents have a lot of life experience and wisdom to share with their children, while young, into the adult years, as they create their own families, and raise their own children. This relationship is challenged when a parent starts to lose their memory, cognitive abilities, and even spirals into the depths of Alzheimer’s or another form of dementia, especially if the adult children are going to keep the parent in their home to provide hands on care.
When I first met Sylvia, her children were finishing high school and going to college. They would come home on breaks and over the summers, but she and her husband were about to become empty nesters. This was a time that Sylvia had been looking forward to for a long time. Recent developments were going to change those plans because Eleanor, Sylvia’s mother, was at the point in her cognitive decline that she could no longer live alone. The tough decision was made that Eleanor was going to move into the home of Sylvia and her husband, Harry. They knew it was going to be a difficult endeavor, but they wanted to take on the responsibility because they didn’t want Sylvia to have to move into an Assisted Living Facility.
Their friends had made similar decisions and had worked with our care management team and knew that we could help make the care easier, work with them to find good respite options, and could help monitor for any changes in Eleanor’s care needs.
At one visit, it was clear that Sylvia was a bit frazzled and struggling with how to handle communication with Eleanor. Every morning was like a fresh slate and Eleanor would wake up confused and distraught. We talked about therapeutic fiblets and how it is okay to fib a bit to reduce the stress of both parties. For example, Eleanor was worried about her husband each morning and since her husband had passed it would be very traumatic to be reminded of this every time she asked. So, Sylvia and Harry would tell her that he was travelling on a business trip. This would immediately calm her. At first it was uncomfortable because they knew not to lie to a parent but over time, they saw that it really put her at ease and was the best thing for her care.
At another visit, we talked about not bringing up the memories to Eleanor but rather to just let her bring up the memories that she did have and talking about those memories she brought up. That was particularly hard because it emphasized that Eleanor was not going to be an active part of talking about family memories and it gave Sylvia the idea to write down anything that Eleanor brought up as a memory because it might be completely lost if she never brought it up again. Sylvia was able to create a nice book of memories that Eleanor would bring up out of the blue.
Other things that we helped Sylvia with was to reduce the agitation of answering repeated questions by not thinking about how she had just answered it and to try to think of them as new questions. She avoided telling Eleanor that she had just asked that same question and instead learned to redirect to another activity if the same question was asked on regular repeat. Sylvia also became a pro at letting things roll off her back even if her mom was wrong about what she was saying. They had lively debates, even arguments, in their younger years but those were a thing of the past and Sylvia would need to let her mom be right about things. As you can imagine, that was a bit of a struggle sometimes.
Even though they are going through the process of Alzheimer’s or dementia, it doesn’t mean that they are less of an individual. Maintaining respect, love, and honor for their life, history, and wisdom means not being condescending. Even though it seems that caregiving roles have reversed, it doesn’t mean that their autonomy has changed. Don’t use terms like honey, dear, or love as that can be condescending. Call them mom or by their name, whatever way you spoke to them when they did not have Alzheimer’s.
Sylvia and Eleanor managed to live together in a peaceful manner, and it was soothing for both of them to be in the loving care of each other. That doesn’t mean there weren’t difficult days, but it does mean that using some tips and tricks, the days that should not be difficult were not and that left time to manage the truly difficult days. If you are facing a diagnosis like Eleanor’s and you need help figuring out the best steps for care, please please give us a call at 877-337-0922 or email us at cassandra@infinitycaremanagers.com”. We’ll be happy to assist!
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