You probably know that I just got back from another trip to see my dad in Arizona. He’s definitely slowly going downhill these days. Once upon a time — just over 22 years ago — he stood tall at 6’2.5″. (This picture is also proof that once upon a time — just over 22 years ago — my oldest son was a bit pudgy! You’d never believe it by looking at him now.)
Yes, I am a P.K. (preacher’s kid). Yes, he baptized my 2 oldest sons, although this photo was not taken on that particular day.
But 22 years have passed. On Sunday afternoon, I was pushing a wheelchair for my dad instead of a stroller for my son. Dad can maneuver about by himself but it is with tiny steps on the floor and tiny rolls of the wheel under his hands. I don’t want to take away his independence but I also don’t want to wear him out, so I had to balance his desire to do it all on his own with my desire to not let him wear himself out. He has advancing Parkinson’s Disease and is still in denial about what he can and can’t do. For instance, he can’t get out of bed on his own… but he still tries, especially at night when he becomes confused more easily. Some of this behavior is due to the dementia and some of it is due to stubbornness. The staff puts an alarm under the bed pad, which goes off when he starts to maneuver his way off the bed. It gives them enough warning to come running before he falls. While I was there this past weekend, he didn’t want me to think that he was incapable of anything, so he transferred himself onto the toilet. He announced that he was going to use the bathroom with such nonchalance that I was fooled; he knew he wasn’t supposed to do it, but he was determined. It was a delicate situation: I was trying to give him privacy and trust… but also questioning him. Eventually, he admitted that he had done something against the rules. This was after he wore himself out trying to get back off the toilet. He could not stand up and was in great danger of falling. He refused to push his call button so I went in search of help.
I won’t go into details, but in the end he was appropriately chided but also given due respect — and we all let him think that I didn’t really know what was going on. Dignity is important to everyone.
I know that he sometimes feels that he is a prisoner because he has voiced it as such. Yes, he is a prisoner of PD in his own body, but he also feels stuck in one place — a very nice place. In the past, I have tried to get him to agree to getting in the car and going for a drive but he declined the offer. Almost 2 years ago, he was in a transport van coming back from an appointment at the clinic when another vehicle rammed into the side of the van. It broke his wheelchair and banged him up pretty badly (like most older folks, he bruises easily). After that, he refused to ride in a vehicle. The nurse and sometimes even the doctor come to see him instead. But with time and PD dementia, he let that detail slip from memory and suggested that I take him for a drive to see the sights around Tucson, entirely forgetting that the safest (and quite nearly the only) way to move him from one position to another is with a Hoyer sling. So instead, I got permission from the staff (who all thought I was underestimating the difficulty) and took Dad for a walk down the long hilly driveway, across the road, and up the steep driveway of the other two houses that make up his assisted living facility complex. He questioned my ability the whole way over to the other houses but clearly I impressed him because he didn’t question me on the way back! The caregivers across the road were surprised and pleased to see him. (Dad couldn’t remember being there before, but I was assured that this was not his first visit. Score again for dementia.) I suspect this was the highlight of the weekend for my dad, being out and about on a lovely day.
What he probably won’t remember is that at lunch on Sunday, when I got up to refill my water glass, he snitched a piece of zucchini bread off my plate. I’d heard from his caregivers that this has been a problem, that he had been doing this to other residents. I had also seen him eyeing things on the kitchen counter (leftover pie, for instance) with full intent to snag them when no one was looking, so I wasn’t really surprised to see my plate empty when I returned to the table. I’d baked a loaf of zucchini bread at home and brought it as a gift for him. It was not a big deal that he took a piece of bread off my plate, but I was pretty sure that he would deny it if I “called him on it.” He had dropped it onto his own plate where it nearly blended in with his own food. (And yes, he had a large slice of his own zucchini bread!)
Lord, when I am old and in a care facility, please don’t let me steal food from other people, the countertop, or the garbage can! [Yes, he does that, too.]
It was just 5-1/2 years ago that he drove himself around the perimeter of the contiguous United States. He spent 30 days in total, driving alone — which scared all of us — and had a wonderful time visiting family and friends in Washington State, Idaho, Wisconsin, Virginia, and Florida before returning to Arizona. The picture here was taken in May of 2008 at my home in Virginia.