As caregivers, we have many rivers to cross, but I believe that one of the deepest and darkest areas is the constant task of having to adapt and re-adapt, as the disease of Alzheimer’s progresses. Alzheimer’s, and most other dementia related diseases, are rushing like a torrent down stream, with only a life-ending waterfall ahead. There are no survivors; that is, not yet.
I’m continually advising other caregivers that when they find something that works for their loved one, stick with it for as long as the disease allows it, always keeping in mind, however, that the disease is going to win.
There were many changes that I had to adapt to while caring for my dad. One of the most endless was teaching myself to slow down. On my own I could still do whatever I wanted at as fast a pace as I desired. But my poor father was always stuck in the slow lane. Attempting to rush him only heightened his anxiety and sent his confusion levels sky high.
Every day I counseled myself to back up and slow down. I’m happy to report that, after many trials and errors, I finally adjusted to his clock, making things better for both of us.
I also had to teach myself to use “in time communication.” Instead of telling my father he had a doctor’s appointment on Friday morning when it was only Wednesday which caused him to repeatedly ask for days on end, “aren’t I supposed to be somewhere,” I began to inform him only at the moment when it was time to start getting ready. I also told a therapeutic lie about the appointment being, for instance, at 10:00 a.m., when it was actually at 11:00 a.m. However, we were usually late anyway.
I have a dear friend who’s fighting this disease and he points out that for him, what used to feel like everyday-drudgery, is now a standard for him. He has found a novel way of doing things; a “new kind of normal,” if you will.
Things got easier when he realized he had to discover and accept his new limitations. This man has always loved to do woodwork, but the projects that he now works on are not as elaborate as compared to his previous work. He still spends hours in his garage working on some of the most beautiful and amazing crafts, but he has toned it down some.
Another point he makes is how hurtful it has become when people remind him of how much his skills have diminished. This type of comment is condescending. Harsh words like “Why are you doing that?” or “You know better than that” need to be tossed out in the trash. It may start feeling like we’re always skating on thin ice, but we really need to watch what words we use when we’re around this disease. Sometimes we also must adjust our compassion levels.
Our loved ones have no choice. They have to adapt. Now it’s up to us to convert our ways. It’s going to take a lot of practice and patience. Change does not always come easy, but then again, neither does learning to be a caregiver.