It is still astonishing to me that even as much as Mom has declined of late, she still remembers, and asks about, the cabin and when we can go up for a few days. This year, spring finally came after an exceptionally long winter. It actually warmed up enough for me to open the cabin and put out the porch furniture. Because I can still get faked out in thinking she knows she hasn’t yet been up this season, I decided to bring her for Father’s Day week-end.
Immediately upon our arrival, I could see the decline in her navigating skills. I had not brought her up since last fall and the change in her was huge. The exterior stairs into the kitchen were impossible for her to maneuver both mentally and physically. She used her cane and had me for support, but it was still a struggle for her and very slow going.
Once inside the cabin, Mom looked around, but I could tell by her vacant look, she wasn’t connecting any dots. As I unloaded the car, she never left the kitchen. She just stayed in that one room. I fixed us lunch, and we sat with the dogs on the porch. Several times she piped up and said, “We are so damn LUCKY!!” That was the response I was hoping for!
Shortly after that, I helped Mom and the dogs get settled in for a nap. As when she is at my home, she and the dogs always nap together, and it is no different at the cabin. I then went into my room and laid down myself. Just as I was falling asleep, Mom and the dogs ambled into my room and got on the bed with me, which was adorable, but I could tell Mom was “off.”
“So,” she asks laying there looking up at the ceiling, “What do we do now?” Before I could answer, she continued, “How long have I been here? Is it time to go back?” Whenever she asks those last two questions, it’s my cue to return her to familiar surroundings and her regular routine. My reassuring answer is always, “We’ve had a great time, Mom, we can go back whenever you’d like.” “Gosh,” she says, “I can’t remember a damn thing. What did we do?”
I began to spin a fictional tale made up of memories of summer’s past. Mom laid there with her eyes closed and listened like a child hearing a bedtime story while the dogs snored, wedged between us. "...And on the last day of our visit, we swam in the lake. It was very cold. Then we walked in the meadow and finally wound up on Vicki’s bed for a nap. The End.” Mom laughed. The dogs wagged their tails. “What fun!” she said.
We were back in the car and on the road to her residence within 20 minutes after that. I called Mom later that evening to check in on her, and before we got off the phone, she asked, “When can we go up to the cabin? Is it open yet?”
What Is True For Me:
In my early caregiving days, I would have answered that last question in frustration, making Mom feel awful. I also would have made Mom stay the entire weekend, despite her being uncomfortable. Why? Because back then, it was about me and not her. It was about the work it took for me to get her to the cabin in the first place. And back then, it was about everything else I was doing for her.
At the opposite end of the spectrum as I grew and learned more about this dreaded disease, I realized I was also grieving her life slipping away. I was angry and resentful with the former, but extremely sad and overwhelmingly heartbroken with the latter.
This brutal clash of emotions was too difficult to pull apart back then, much less be reasonable about it. Frankly, I was a raving bitch most of the time – not my finest years, but I didn’t know any better. Fortunately, today, Mom remembers nothing of our earlier years and my less than stellar behavior.
I am grateful I have learned to not skip a beat anymore when I need to pivot, or downshift when dementia’s unpredictability rears its ugly head. I wasn’t angry this time that my weekend plans with Mom were reduced to a few hours, or that she remembered none of it after her return. I am not as sad, or grief-stricken, as often as I used to be, nor do I fear, or worry about, how dementia will unfold in the near or distant future. Good thing because dementia doesn’t give a schit what I think anyway.
Have I perfected all of this? Hell no. Do I worry about the proverbial “other shoe” dropping and immediately brace myself at the thought? Hell yes. The difference today is I have come to realize my reaction is not from reality, but rather from the thought of it. Just my awareness dissolves this perceived fear almost in its entirety.
Most importantly, I won’t allow this made up, fictitious dread to spoil what is happening now. If I did, I would have totally missed altogether the endearing moments when Mom and the dogs climbed up on the bed, and I told a story that made her happy.
For today, my advice is to handle only the truth of what is in front of you, which is plenty. As you read the above, you can see and understand that many times, less really is more. Our few hours at the cabin were very small, but the memories gained were much much bigger.
Keep at arms-length the fictitious fears and worries of the future. We are not psychic. We have no idea how the path of this disease will twist and turn with our loved one because dementia’s path is different for everyone. All we can do is learn from one another the similarities we face, and that fretting about the future is energy we A) don’t have and B) truly changes nothing. As Eckhart Tolle says, “Worry and fear pretend to be necessary, but they serve no purpose.”
Keep this wisdom in mind throughout your day and when you are trying to fall asleep. Breathe, relax every muscle in your face and work your way down to your toes. Stay present, don’t think and sleep well~