The list of my dad’s ailments, challenges, or disabilities is daunting at times.
He’s had urinary incontinent since he received radiation treatment for prostate cancer ten years ago. More recently his incontinence has expanded to include occasional bowel accidents. I understand it is possible this too could be a result of all that radiation years ago. It also could simply be a progressive symptom of his Alzheimer’s.
Dad has difficulty walking. He has arthritis and had knee surgery years ago. Some of this could be attributing to his difficulty walking. He can use a walker for short distances if he is monitored.
My mom has to help my dad get in and out of bed. He seems to lose his coordination or strength and is no longer able to sit on the side of a bed and lie down. Mom discovered that the best way to get him in bed is to have him crawl up from the foot of the bed. He likes to sleep on his stomach, so this removes the problem of getting him to roll over in a small space. When he gets up, Mom has to encourage him to roll across the queen-sized bed from his stomach to his side. When he is on the opposite side of the bed, she helps him get his legs down to the floor and lets him pull himself up by holding onto her hands as she stands bracing herself against his pull.
It’s not ideal, but it works.
Part of the problem appears to be that Dad has lost strength in his left side. In fact, we are becoming more and more convinced that in addition to Alzheimer’s, Dad may have also suffered a small stroke at some point leading to the loss of strength on his left side. When Dad initially went to the doctor with cognitive problems in the middle of 2008, he had an MRI that ruled out a stroke. But he could have had one since. A stroke could also be contributing to the fact that Dad cries very easily and fairly often now. It could be attributing to Dad’s problem with eating and swallowing food and the fact that he sometimes “pockets” food in the side of his mouth during a meal.
I suppose a stroke could also be responsible for Dad’s seeming inability or reluctance to speak.
Who knows? How would you tell if his problems are stroke or Alzheimer’s related? What difference would it make?
Mom also believes Dad is depressed and has been for some time. I would be too.
Sometimes when we try to get help for Dad I feel like we are a ball in a bumper pool game. One professional evaluates and then bumps us to the next.
We started with a visiting physician because it has become so difficult to get Dad in and out of a car. Visiting physicians come on a monthly schedule. They don’t have time for unscheduled visits. So if Dad is sick it has to be handled through phone calls or some other way. We recently suspected Dad had a urinary tract infection, which is common with the elderly, and almost a chronic condition for Dad as a result of the side effects of his prostate cancer treatments. We called the visiting physician’s office who asked Mom if we have a visiting nurse.
After a few phone calls and a house visit, we now have a visiting nurse who will stop by and check on Dad weekly. The nurse who assessed Dad’s needs told us she thought he might benefit from therapy: physical, occupational, and speech. She talked about therapists coming three times a week at first. Three therapists, three times a week, a weekly visit from a nurse and a monthly visit from a physician is quite a lot of visits, especially when you consider my dad takes a lengthy nap in the middle of the day.
Mom settled on having just the physical therapist come for now.
The therapist happened to come yesterday to evaluate Dad’s needs when I was visiting my parents . The therapist thinks they may be able to problem-solve Dad’s getting in and out of bed issues and also help him some with his walking.
Here’s where the expectations come in. While the therapist was here, Dad was able to speak one-word answers to most of her questions. I start hoping. I think, maybe most of Dad’s problems are stroke-related. Maybe he can greatly improve with therapy.
And then the therapist started asking him questions: What’s your name? When is your birthdate? Who’s the president? What’s today’s date? How many children do you have? What are their names?
Dad did surprisingly well with many of the questions, although he had to use his little calendar reference to answer the date question and he couldn’t tell her the year. But he didn’t know how many children he had. And at first, he could only give the therapist my sister Annie’s name, who he refers to by her full name, Diane. When I stepped back in the room and he saw me, he was able to tell her my name. I suggested that he start with the oldest and tell her all our names.
“Who is your number 1 daughter?” I asked. Dad used to refer to us by our “number” if he was introducing us to someone. I’m the number 3 daughter. Dad got my oldest sister’s name correct, but was stumped when I asked, “Who’s next?” He struggled for a while and said, “Is Jerry next?” My brother is the youngest. With some additional prodding and some clues, he eventually was able to name all five of us.
Here’s the thing. I can’t allow myself to be falsely lured into believing that Dad is going to get better in more than an incremental way. I have to keep my expectations realistic and under control. I’m not going to get my Dad back.
Maybe therapy will help my dad get in and out of bed a little bit better, but it’s not going to help him always be able to remember my name.
Christine M. Grote 