Face it, change is hard. We like things to be the way we know them to be. Change forces us to be flexible, view the world differently, behave differently. It’s definitely hard. And change is definitely a part of a caregiver’s world.
Change in the context of a person’s dementia is a strange concept. It can happen fast…in the blink of an eye, life seems totally different. Change can be so slow and incremental that you don’t even notice the differences for a long time, then suddenly, wow! When did that happen?
Many of the changes that Deena experienced over the course of our dementia journey were slow and incremental. It’s only with hindsight that I’ve come to understand her decline over time. I think part of that is based on the fact that I was with her all of the time, which made some of the changes difficult to see. In fact, I didn’t even recognize some of the changes until someone pointed them out to me.
During a visit with our close friends Patty and Carol, I asked if they had noticed any changes in Deena, given that it had been a few months since they had last seen her. They were very clear that there had been definite changes over that time. From their perspective her confusion, balance and gait, ability to manage stress was much worse. All things that I was aware of, but not to the extent that they described the changes. Sometimes you can’t see the forest for the trees.
I can’t tell you when Deena stopped being able to use her phone to make a call. I knew she had been having trouble using her phone, she called it ‘The Little One’, but I thought she was mostly struggling with surfing the web. And then, one day I realized she didn’t know how to make a call, which completely changed my thinking about her ability to stay alone, even for a 15 minute run to the store. I was suddenly aware that if she needed help or got scared, she wouldn’t be able to call me or anyone else.
On the opposite end of the change spectrum was the rapid, noticeable decline that she experienced when she went off the Aricept in August 2018. By Thanksgiving of that she year had clearly lost ground with her language, thought processes and recall.
Three years to the day after the initial diagnosis, I wrote in my journal about the changes that had occurred over time.
June 2020
Acupuncture Appointments
• Deena walks or drives by herself to the appointment
• I drive Deena to the appointment, she walks in by herself
• I drive Deena to the appointment, and walk Deena in
• I drive Deena to the appointment, walk her in and wait until Elizabeth is ready
Medication Management
• Deena orders her prescription refills and fills her pill boxes by herself
• I order Deena’s prescription refills and Deena fills her pill boxes by herself
• I order Deena’s prescription refills and help Deena fill her pill boxes
• I order Deena’s prescription refills and fill Deena’s pill boxes
Money Management
• I track when bills are due, and Deena writes the checks
• I track when bills are due and help Deena write the checks
• I track when bills are due and pay the bills on-line
I share these examples to illustrate the changes that Deena and I both experienced during this journey. For her part, these changes meant a loss for Deena. A loss of independence. A loss of making a contribution to the day-to-day fabric of our life. A loss of self-esteem.
For my part, these changes reflect an uptick in my responsibilities for the management of our lives. Were these additional responsibilities hard? I didn’t think so at the time, although they probably did contribute to my being more easily tired. I just accepted that these changes were simply part of our new normal.
I heard someone complain that he was having to do more and more things that his wife with dementia used to do. He wanted her to do everything she had always been responsible for, cook, clean, manage the finances. He couldn’t accept that her ability to be the ‘equal partner’ that she had always been, was simply out of her control. I wondered how he would cope if he was resentful at that point by the extra burden on him, when as it inevitably would happen, his wife would be unable to do anything, and the full weight of their life would fall to him.
For some reason, I got from the very beginning that the inevitable changes weren’t Deena’s ‘fault’. I knew that she couldn’t do it differently, even when she desperately wanted to. And I knew that there could be big consequences if I turned a blind eye to the need to do things differently.
So, yes change is hard. But ignoring the need to change, in whatever ways your specific situation requires, doesn’t make the issue go away. In fact, it can make it worse, sometimes exponentially worse.
If change is especially hard for you, seek help. Join a support group. Get into therapy. Enlist the support of family and friends. But do something. Because the one certainty in this long, unknown dementia journey, is that change will happen. The only question is how you’ll respond to it.