I realize not everyone is going to care about what I’ve been going through as a caregiver. But with the crazy statistic that 65.7 million Americans care for a family member with a terminal illness, I thought I’d continue to share my journey with Pete with you.
It seems as though Pete’s reached the late-intermediate stage of Alzheimer’s, there is no set time table with the disease just a person-by-person pace. He easily fixates on things for long periods of time, particularly anything of extreme size or quantity. Think car dealerships, skyscrapers, etc. A big source of anxiety is the idea of something he needs running out, so several of everything are kept on hand at all times. Soap, paper towels, and the like. Date and time are both obsessions, as are fidgeting with his watch which he changes the settings on several times a day.
Pete still gets great joy out of reading the daily newspaper cover to cover (sometimes several times in the same day) and walking outside, so we take full advantage of both. I try to stick to his daily routines as much as possible because he’s easily thrown off, something as simple as the Girl Scouts coming around to sell cookies will leave him asking a million questions hours after the event.
As we’ve moved deeper into the disease more symptoms are revealing themselves. Pete’s begun to forget everyday words and will replace them in conversation with one of the completely wrong meaning. At times no words at all want to form and what comes out sounds more like a child learning to speak. Jibber jabber. His balance is beginning to fail him as well, and a few weeks ago he took a tumble while showering (luckily he was uninjured). Walking has slowed down and it takes a few tries to get up from a sitting position, both make his habit of wandering around more dangerous and me more hawk-like. But he still eats like a champ! More like a teenage boy actually, the other day he housed six slices of pizza for dinner.
A recent development is what I like to call the True/False Game, where he has a thought so set in him mind that he believes it no matter what. Like one of the indoor cats getting outside last week, even though they were both napping under a bed. Another high point of his days is Piper, I bring her with me Monday through Friday and he can’t get enough. Things about her are actually some of the only new information he remembers, so I’m grateful for any sort of joy she brings into his life. And they have such an amazing bond that it has me wondering whether she might make a good therapy dog to bring happiness to others.
One thing I never stopped to think about when I became Pete’s daytime caregiver is what sort of effect it might have on me. As with all terminal illnesses, which Alzheimer’s ultimately is, there are good days and bad. And you take both in stride not knowing when the switch is going to flip the other way. In the past few weeks it’s been in the ‘bad’ direction more than the ‘good,’ and I feel ragged. My anxiety, which has always been on the high end of the spectrum, has skyrocketed. My will to do anything after going home has plummeted, and I don’t discount the fact that I might be slightly depressed. My solace lies in the fact that I’m most likely suffering more than Pete, simply because he doesn’t remember most things short term any longer. And I wouldn’t change that for anything.