We’re doing okay — Living with Alzheimer’s

The menu for meal preparations on Friday at my parents’ house included Sherried Beef Sirloin Tips and Potato-Vegetable Bake, two new recipes from a book I purchased recently called Easy-to-Swallow, Easy-to-Chew Cookbook by  Donna L. Weihofen, JoAnne Robbins, and Paula A. Sullivan.

I try to make or bring a meal or two for Mom and Dad every couple of weeks or so. It gives my mom a break and one recipe typically makes enough food for two or three meals. Mom usually freezes the leftovers to microwave for an easy meal later.

When I arrived at about 11:30, Dad was taking a shower with the help of his home health aide Paula. Mom and I sat at the kitchen table cutting meat and slicing mushrooms for the Sherried Beef Sirloin Tips. Paula pushed Dad into the kitchen to join us when he finished with his shower. He helped scrape the cream of mushroom soup from the can, dump the dried onion soup from the package, and pour the water and sherry into the baking pot over the top of the vegetables and meat. It was a group effort.

I took orders for lunch. Mom wanted a hamburger from Burger King. Dad gave his order by nodding affirmation when I asked, “Would you like a regular hamburger?”

He nodded.

“Do you want mustard and pickle on it?

Another nod.

“Would you like some french fries?”

Nod.

When I came back with the food, Dad was sitting in his wheelchair at the table, nodding his head with his eyes closed.

“Are you asleep?” I asked.

No answer.

Dad often takes a nap after his shower and typically doesn’t eat lunch until he gets back up at 2:00 or a little later.

“I think Dad needs to go back to bed,” I said.

Mom was a little disappointed that Dad would be missing having lunch with us yet again, especially after we had gotten food for him. It’s been a while since the three of us have had lunch together.

Paula helped Dad back to bed before she left at 12:30. Mom and I had lunch.

Mom was expecting the visiting nurse sometime between 1:00 and 3:00. The physical therapist was also coming to discharge Dad from therapy. Dad had completed seven therapy sessions at home doing sitting and standing leg exercises and walking around the house a couple of times with the therapist. The last time the therapist was there Dad got very short of breath and did not do well with his exercises. Mom said Dad did better the first day than later days. It’s sort of hit or miss with him and whether or not his brain is communicating well with his muscles.

“Well, at least you have some exercises you can do with him to help keep his muscles stronger,” I said. “I think it’s good we tried it.”

The nurse came at about 2:00 while Dad was still in bed. His name was Chris. He said Dad could stay right where he was, lying down in bed, while he took his vital signs. Mom talked to him a little about water retention. Sometimes Dad’s feet are swollen. They discussed things like congestive heart failure, the sound of a wet cough, when to call the doctor, and DNRs. I think the visiting nurses will add a sense of security to the situation and help give Mom confidence in caring for Dad at home.

The physical therapist came before Chris left. Her name was MaryAnn. She came in the bedroom and wanted Dad to get up so she could see him walk and do his exercises. When Mom started helping Dad roll over from his side to his back and start the process of getting out of the bed, Dad started crying.

“Don’t worry that he’s crying,” Mom said. “He cries often and easily. It’s not because of anything you said.”

Dad seemed pretty upset to me, as he sat on the end of the bed.

“It’s okay, Dad,” I said. “You’re doing fine. We’re doing okay. Things are okay.”

Dad stopped crying. He might have stopped anyway, but I’ve found in the past that it seems to reassure him if I tell him, “We’re doing okay. It’s a hard situation for you and for Mom, but we’re all helping. And things are going okay. We’re going to be okay.”

Amazingly, just saying the words out loud makes me feel better too.

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.