-This is a blog I wrote over a year ago. I am re-posting it today by request...
Later this morning I am taking Mom up to the cabin. It is not easy for me to gear up for this. My stress level rises several days in advance. I pay attention to my breathing, my facial muscles and body position, realizing these things need readjusting all the time to remain calm and relaxed.
It is difficult to see her decline. It is difficult to be “ON” 24/7. It is difficult to accept she is dying. Plus, I am sure, it’s reasonable to think I am still recovering from caregiving the last 7 years.
Whether we are at the cabin or she is at my home over-night, she has no concept of time anymore. She doesn’t know where she is if she is away from her little apartment at her Assisted Living residence. When I take her to my home, or to the cabin, I put signs in her bedroom and on the bathroom mirror, “You are at Vic’s (or,“You are at the cabin”) with the dogs. You are safe. We love you.” It is signed with hearts and paw prints, “Chrissy, Marco, Frank and Vic.”
I don’t leave the house, not even to take the dogs for their hike or teach my class at the gym. I cook all our meals because going to restaurants has been out of the question for about a year now. The restaurant experience is simply too much for her to take in; it’s loud, visually overwhelming, and the menu is too long and difficult for her to read to make a decision about what to eat. Even the food is too complicated for her to understand.
I take her for drives. We take walks to the end of the street and back. We walk very slowly because her gait is a shuffle, a common symptom of dementia. I am very careful where we walk because tripping and/or falling is commonplace. She will eat breakfast or lunch a second time, even after asking me, “Have I eaten breakfast (or lunch)?” When I answer in the affirmative, a few minutes later I will see her in the kitchen preparing a bowl of yogurt and fruit.
It’s the same with naps. She may nap 3 times a day. I don’t dispute, debate or say she’s already done something anymore. I used to. I learned not to. I let her do whatever she wants, even if I’m in the middle of doing something she’s asked me to do for her. She’ll change course and go in a completely different direction. It’s hard to watch.
With Alzheimer’s, every second changes for no reason. It just shifts on a dime. Most times I can’t keep up, so I have learned not to keep up. In the early days, this would drive me crazy. I felt like I was on this bizarre carnival ride. I’d snap at her with an angry, loud, comment, and by the look on her face, I could see she had no idea what I was upset about. Now I understand it’s just the way it is, so I stand aside and let the shifts take place. It’s almost like watching Disney’s cartoon, Tasmanian Devil. What else can you do but stand aside and let him spin? The only time I will intervene, of course, is if something will put her in danger.
Aside from the obvious difficulties, I am grateful we can still spend time together like this. She still has her personality and sense of humor. She is still capable of intelligent conversation, though very repetitive. And there is always something that occurs where I view things a little differently just because of the unique way Alzheimer’s has presented it.
When it’s time to take her back to her apartment, she has no concept of how long she’s been with me. “These 4 days have been wonderful, thank you…” she’ll say. I don’t correct her with the inaccuracy of days because I can see the tranquility on her face “thinking” she’s been somewhere longer than she has. The reality today is, being away too long makes her restless (and she doesn’t know why).
There is a look and behavior I recognize, an anxious, uneasy, fretful behavior that tells me it’s time to say, “Let’s get our things together and head home.” She doesn’t argue. I can actually see relief. As much as she complains daily about being bored, or heavy-hearted, or demanding she wants to go to the cabin, or to come to my house, her daily surroundings at her home are still a touch-stone of security and source of reassurance for her.
It is sad that any memory we create together will not sustain her for any length of time. She can’t remember anything to comfort her until the next time, or pull from that memory to break up the monotony of her day, or soothe her loneliness in any way. Matter of fact, the memory of our “time” is gone within about 10 minutes of being in the car.
I’ll get on Hwy 89, ten minutes from the cabin, and she will say, “Were we just at the cabin?” I’ll tell her we were. “How long were we there?” “Did we have fun?” she’d ask. To which I giggle and say, “Yes, you had fun. You were obnoxious, Mom. Drunk half the time and swingin’ from the rafters without your clothes on. It’s why I can’t take you out in public anymore.” That gets her laughing, but then the reality of her not remembering a thing is tragic, and often we both wind up crying.
What Is True For Me:
What a life these days. It is better than it was though. But every day is different. Every day Mom declines. So, every day I cherish. Who’s to say that my time isn’t as short or as precious? I couldn’t think like this a few years ago. I was lucky to get through the day without my head exploding. Now that I have a bit more independence and can rest, my perspective on the day I am given, has changed. I truly do appreciate each day, both with Mom and in general. I take nothing for granted. Not one thing.
I’ll leave you with a great line that comes at the end of a really great movie, A Dog’s Purpose.
“Have fun, obviously. Whenever possible, find someone to save and save them. Lick the ones you love. Don’t get all sad-faced about what happened and scrunchy-faced about what could. Just be here now. Be. Here. Now. That’s a dog’s purpose.”
My pups in 2005, “The Fab Four,” Sage, Farah, Bear and Millie