In the last month we have been struggling with an upswing around here. Casper is listing sideways, falling almost every day, wall walking... you name it, we have the symptoms. She can't sit up in bed on her own anymore- she lists, and falls over. She tries to get up on her own, and sometimes she can with a series of sort of micro jerks with her hand as she rises like a leaning scaffold being righted. Most of the time she simply puts her hand up with a silent request to be pulled up. If I am not home she just stays where she is- for hours. Three years ago she could use her knees better than I could, sit cross legged and change the light bulbs in our ceiling fan over our bed by balancing on the bed. Now she can't tie her shoes most of the time.
Yesterday she fell twice. I have her walker next to the bed, but she will not use it. I think it would be a sign of defeat in her mind. She knows better- I've seen her tell patients they had to use their walkers or they would be tired out and unsafe. Today she fell in the five minutes I left the room to feed our cats and dogs early in the morning. She lost her footing, hit the bed footboard, and slid down it with her back. Road rash would be better on a Harley crash than Casper's back today. And after all that? Two near near crashes when she got up without help and pushed the walker away from the bed so she could walk on her own.
As a medical social worker I have witnessed caregivers struggling with so many issues. One of the biggest is the balance between independence and safety. With Linda I had to fight to make her wear her oxygen in public and to use her walker or wheelchair. She assumed that people who saw her blamed her for her illness. That was cruelly reinforced by the numbers of complete strangers we met over her last three years who would ask "So you smoked and have emphysema?" Let me note for the record Linda hated smoking. Truly hated it. Her parents both smoked, as did her brothers. She hated the smell, the yellow walls, the ash, the butts, and she felt it may have contributed to her later diagnosis with breast cancer. So being asked if she had caused her own terminal condition (why people have a need to blame anyone when they are clearly struggling is beyond me- does it make them feel superior? Or less vulnerable?) made her absolutely resistant to using the equipment that made her life easier. She needed that stuff so breathe at even 80% of normal, and to be able to make it into a mall or theater. But she wouldn't. There were lots of times I would have to make a quick trek back to the car to grab it because she was so short of breath we could not go any further.
And so here I am again. Casper refuses to be seen using DME (durable medical equipment in English). She knows she's too tired to go very far (that's the LBD effect) and that she could fall (That's the PD in action.) But the wheelchair stays in the car, the walker in the bedroom where I dust it occasionally. As we were walking into Kohl's yesterday I watched her struggling to simply move her feet. Once again "I could go get the chair. We could stay longer. You won't hurt so much." Timing is everything. Just as I said it I followed Casper's eyes to an elderly woman who clearly had PD. She was shaking. She was tiny. She was having to have her walker pulled by her daughter, and her oxygen line went from her nose to the walker basket. Ruh Roh... Casper looked at her for a bit while pretending to look at watches (they were pink and glittery- no way were they something she wanted). Then she said "The time for the wheelchair is coming soon enough. It will be here before you know it."... Wait- what?
Did you just say that to me? Then "This is speeding up. I can feel it. I'm losing more every day." We walked quietly. I pulled her upright a couple of times. We found the sheets. Standing in line was too much- she had to lean on the counter. "There's a chair." "No, I've got it." We struggle to the car, and when we get home Casper can't figure out how to open the door. "Just a minute- it's been misbehaving- I'll get you out." There is no point in telling someone who is already feeling so lost that they have forgotten how door handles work.
And now we have just gotten back from Fairmount Park, and Casper is once again asleep. She awakened as I was blogging and wandered in. She asked if I wanted to go for a walk by the water. We live in Riverside. We have no water. I tried to figure it out without causing pain or upset. "Do you want to go to the park? Or the National Cemetery? We can feed the ducks." (I know- sounds morbid. But I like cemeteries.) "If not a lake, do you want to drive down to the beach?" Casper wasn't sure. "I thought there was water nearby." Big Bear, where we vacationed this summer? North Carolina? Hawaii? Laguna? Sometimes you have to try to follow the thought process you are hearing to figure out what's being said. So we head to the park, and it's hot. Blue blazes hot. The water is green. The bugs- oh, the bugs. But as we walk, with Casper leaning heavily and walking with less and less certainty, she finds people smiling at her. Saying hello. Little old ladies. A cute Muslim family out on scooters. An adorable little girls with dozens of braids fishing with her dad. Casper stumbled and needed to rest. Several folks stopped to offer help. She told me to get her home or we would need help- she could no longer walk. I offered to get the wheelchair, and she said she was afraid she would not get up if I sat her down to go get it. Alone is not a good feeling. It wasn't at that moment.
So we are home. She is confused, hearing voices (that's the LBD acting up) and she knows she's confused. I'm close by. The kids went out to dinner for Sunday supper. And we have a new normal again. Soon, very soon, that DME will join our normal. We will add cup holders and a horn, and lights at Christmas, and we will make the very best of this.
And tomorrow may require calling out for a while to actually go to the beach. Because sometimes you just have to have a nice day. And Laguna is handicap accessible!
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