Managing expectations — Alzheimer’s ups and downs

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.

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11 thoughts on “Managing expectations — Alzheimer’s ups and downs”

  1. Christine, Thank you for sharing the day to day struggles with your father. I know that each day brings new challenges and it is hard for loved ones to be a witness to the decline day after day. This is fresh in my mind due to just losing my sweet father in law. While he did not have Alzheimers which robs the person of so much–he did have a lot of other physical things that you describe with your father. We, too, suspected he had a mini stroke a couple weeks before his death. We were blessed to have help through the VA with Comfort Keepers who came twice a week to do light housekeeping and companionship. Then when Hospice got involved it was a lot of daily contact with nurses and aids which usually wore him out but it was a good thing for all of us. As the disease robs your father of the ability to recognize you and speak your name you will have a lot of emotions, I am sure. Hang in there. I am praying for you. Thanks for sharing this honest post—we all need to be more sensitive to what others are going through and you have helped me today to understand a bit more. Thank you. 🙂

      1. We are doing pretty good–just lots to do!!! You have much much more on your plate at the moment that we have, that is for sure. I really enjoy reading your posts and the one today was especially touching. Thanks for sharing. It is not always easy, is it? But I find that writing helps. Hugs.

    1. I agree with Patti…my heart hurts for you.

      a little Buddhist prayer/wish – om mani padme hung.

      Wishing you love and compassion. And many hugs.

  2. Christine – we went through similar things with my grandmother as the strokes took away her abilities. At one point, we thought she’d had another stroke because she’d gotten suddenly weaker and lost ground again. When she got better a few weeks later, my aunt realized that Grandma had been sick instead, most likely from a flu. But since Grandma couldn’t communicate, we had no way of knowing at the time that she was sick and not just getting worse.

    Nancy
    http://www.dogear6.com

  3. @Patti and Debra,
    Thanks for you support and prayers. I never turn down prayers.

    I’m out of town and working on my iPad which has a few glitches in working on blogs and blog comments.

    Sometimes I wonder if I am being too down about my Dad’s stories. It’s interesting to me how many others share some of my stories. Getting old is just bad news. It seems like there should be an easier way out of this life.

  4. @dogear6 — Thanks for sharing your story. You’re right that it is very hard to tell exactly what is going on with people who are limited in their communication abilities. Sometimes I think Dad is getting better too, but I’m afraid to set myself up for a fall.

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