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.

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Author: CMSmith

I enjoy reading, writing, gardening, photography, genealogy and travel. I have opinions about many things, but am trying to age gracefully and not continually tick people off with them. Sometimes I can’t help myself.

35 thoughts on “We’re doing okay — Living with Alzheimer’s”

  1. Hi Christine .. I’m sure these posts will be invaluable to so many at some stage .. and so pleased that your mother is coping with you and the helpers around – makes all the difference .. it’s very sad .. but those reassuring words must make the world of difference to your Dad – good for you in doing the best that you can .. with thoughts Hilary

  2. It’s wonderful that you are there for them, Christine. I need to find some easy recipes. I used to like cooking, but now I like anything easy, yet, it needs to taste good. There are few pleasures in life for the afflicted, and good food is one of them. Blessings to you…

      1. My hubby had a stroke, and afterward he could not swallow as easily as before. He struggles, mainly with swallowing liquids. He seems to be able to chew, although not as well as before. His tongue, and the entire right side of his body, and his speech, were affected by the stroke. I need easy recipes that taste good. He loves to eat. 🙂 I may take a look at this interesting book. Blessings…

  3. I’m so glad there is outside help available, a good support network. Maybe it’s a good thing you have the work on your book to give your mind somewhere else to be from time to time. I, too, am glad you are able to share this time with your parents, as hard as it is. You are a blessing to many, Christine.

    1. Yes. My book has been a blessing and a curse. I had no idea how stressful it would feel. I think if it were fiction, or something not so dear to me, it would have been a lot easier.

      Next time.

  4. Been there, done that, miss my mother terribly. I used to tap her tongue gently with the spoon to get her to swallow her food. You are a wonderful daughter to them. Touch is an amazing thing for them and us.

    1. As hard as it is, I am grateful for this time with my parents. I’ll bet you do miss your mother. It sounds like you gave her great and gentle care.

      It’s good to know there is life afterwards.

  5. There is life afterwards that’s for sure but sometimes I feel this void. I miss both of them but am happy they are back together now. I just have to calm myself at times when I forget things. Thank you for tweeting the link.

  6. It takes courage to live in this bittersweet world of Alzheimer’s and then allow other people a glimpse – I applaud you Christine. My friend Gord, whom I hiked the West Coast Trail with, just a few short years ago, was diagnosed with this damned disease at age 58 and I now spend a couple of days a week as his caregiver. The bulk of this responsibility falls to his wife but she needs a break and this time provides fodder for a book I am contemplating.
    I am sure there is something cathartic about chronicling your journey with your Dad, but the inspiration you share with your readers makes a difference in our lives too. Good luck to you and your family.

  7. Whatever you’re enduring seems so counterpoint to the smiling picture that is your gravatar. Sometimes it’s hard to imagine that you must be crying…looking at your happy face. But I’m sure you are…

    and my heart always goes out to you… 😉

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