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.

Let’s hear it for the home health aides

Paula bursts into my parents’ house like a ray of sunshine. She’s full of energy and optimism and greets my mom and dad with a bright smile. My dad, who is a man of very few words these days says, “How are you to day?” A regular monolog for him.

Paula started helping my parents as a home health aide about nine months ago. She started by coming two mornings a week to help my dad with his showers and to help my mom with the extra laundry and sheet changing as a result of my dad’s Alzheimer’s and incontinence issues. At first Mom didn’t want to have a home health aide there every day. After two weeks, Paula was coming five days a week, every weekday.

Paula knows how to do everything for my dad now. She pitches in and gets him up out of bed if he hasn’t risen by the time she arrives. She helps him into the shower and monitors him while he’s there. She cleans up any accidents he has or messes he makes in the meantime. She helps him change his protective undergarments, helps him dress, transfers him from his walker to his wheelchair. Pushes him to wherever he wants to sit inside the house. Sometimes she prepares his breakfast and sits with him while he eats. Meanwhile she usually has a load or two of laundry going. Sometimes she does small household cleaning chores like vacuuming the carpet or mopping the floor.

It’s a physically challenging and dirty job at times.

But Paula keeps her sense of humor and her smile in place. She treats my dad with sensitivity and compassion and extends support to my mother who often struggles with her caregiver responsibilities.

I’ve watched Paula with my dad and I believe she genuinely cares about him. She seems amused by him at times in an affectionate, non-patronizing way. She’s respectful of his wishes and treats him as an adult, even though often he is silent in return.

There’s no question that Paula is a significant help to my mother just from a purely physical stand-point. But what has surprised me is how much more than that she is.

When Paula’s there, my mom can rest. Mom often lies on the sofa and puts down her responsibility for my dad for a few hours because she knows Paula will carry it for a while.

When Paula’s there, my mom seems more relaxed. If something unexpected happens she has confidence Paula will know what to do. When we were still taking Dad out to see his doctor, Mom started scheduling the appointments for when Paula could accompany them.

When Paula’s there the whole energy of the household shifts into something much more positive, much more optimistic.

When Paula’s there I feel like we might just be able to get through this.

Even with all of that said, the most amazing thing about Paula is that she has chosen to be part of my parents’ lives for this time. I mean, let’s face it. Alzheimer’s is a heinous slow march downhill to oblivion. We are on the path of a final goodbye with many small endings along the way. Frankly, sometimes I’d like to run as fast and hard as I can in the opposite direction. If I didn’t love these two individuals I call my parents, I’m not sure I’d choose to be involved in their lives. Paula did.

Paula understands the way this gig is going to end. And she chooses to be here anyway. That’s really saying something.

So I’d just like to raise a glass to Paula and to all those other home health aides in the world who truly make a difference in the lives of others.

Cheers.

Paula takes Dad for a walk. August 19, 2011