Suggestions for Down Days with Dementia

 

My author friend, Julie B Cosgrove knows about my challenge with my own health issues, as well as our daughter Shelley. Julie has dealt with her personal illnesses. She's been homebound for a year.

She sent suggestions. Things she's done in her life to help her attitude.  I think these suggestions will help anyone who is a caregiver to a loved one with dementia or Alzheimer's.  Here are her suggestions.

If you are in chronic pain, I get how easy it is to sink into depression. Sleep deprivation is real. Doing the simplest things become frustrating. Here are some things I have done that have helped me adjust my attitude.

 1. Listen to Christian music. A lot. Keep it going in the background.

2. Join an online Bible study or regularly view one on You Tube. I like Brandon Robbins’ series. He has several. He is scholarly but down to earth and relatable.

3. Sandwich your day in prayer. Start out praying in the morning, interceding for yourself and others, but be sure to allow some still, quiet time to receive God’s response. If that doesn’t come, have the faith that it will during the next day or so. Watch for the ways He “speaks” into your day. At night, thank Him for the things that went well that day.

4. Breathe deeply. There are several “spiritual” breathing exercises on You Tube as well as physical ones like seated Thai Chi. When anxiety begins to bubble up, stop, go to a quiet place, and deeply breathe in, then slowly count to six as you breathe out through your mouth. Repeat until you feel more relaxed. Then thank God for His mercy.

5. Someone quite some time ago told me to “never let the devil steal your joy.” I took that to heart. I posted positive quotes on my bathroom mirror and fridge. One said, “God’s grace in enough for whatever we face.” Another said, “God doesn’t give us what we can handle, He helps us handle what life gives us.” And of course, I have purchased a few more mugs to inspire me because, like any writer, I seem to always have a cuppa on my desk!

6. Post positive, uplifting scripture written on post-it notes around as well.

7. Develop a hobby to keep your mind active whether it is writing, word games, painting, knitting, or like me, going online to view houses for sale in your area and then “redecorating them on a budget”, by finding things for sale online. Anything to move creativity up and push negativity down.

Julie B Cosgrove

Gay says,

 I'd love to hear from you. How do you help yourself during the dark days of dementia?  Leave me a note, and please follow my blog.

---Gay N. Lewis

 

My Happy Girl

 It has been three weeks since I last saw my sweet Shelley. And she remembered me and was thrilled to see me!

Talk about one happy momma and a happy daughter. It was a good day.

I had surgery and couldn't go see her. Her dad went in my place and sent me pictures.  He filled in well. He sang with her, just like I do. Several of the aides told me he had a wonderful voice, and he does, but they don't mention my singing abilities. 😉😉😉

Shelley loves music. In fact, most dementia patients do. They can recall words to songs when they can't recall how to talk.

Babies relate to music.  It's one of the first things they do, and I think responding to music is one of the last things people with dementia do.

Sing to your loved one!  It doesn't matter if you have a good voice or not.  Take a keyboard if you play. Dance with them to the radio. Don't be embarrassed with a lack of musical talent.  When we sing, dance, or play piano for our loved ones, it is for them, not us.

Travel to Yesteryear

 If you could time travel to yesteryear with your loved one who has dementia/Alzheimer’s, which year would you choose?

If I could prevent the disease, I’d choose the baby years and do whatever was necessary to keep our little daughter from getting it. But science doesn’t know what causes it or how to prevent it.

Yet. We hope and pray it will be soon.

Since I can’t prevent the disease in earlier or later years, I’d choose to go back with her in time to when symptoms appeared. We didn’t believe the little clues had anything to do with horrible dementia.

About 7/8 years ago, I noticed she’d changed her signature. She’d written “Shelley Mc~~~~."  The first name and last name initial looked like her beautiful script.  The last part of her name was a squiggly line.

I said, “Shelley, what is this?”

She laughed and said, “That’s my name.” She gave me that, “What’s wrong with you” look.

I decided she’d changed her signature and dismissed it.

It was the first symptom something was wrong.

A bit later, we attended a graduation ceremony. She couldn’t find her cap-and-gown daughter in the group.  We kept telling her to count ten rows back from the people seated and thirteen people in from the aisle. She couldn’t do it.

I thought she needed glasses.

Little things begin to be weird. She forgot how to operate the microwave oven. She left candles burning.

She received two lumbar punctures that showed "no Alzheimer's."

 Her dad and I continued to deny a serious disease. We thought she was on too much prescription medication for anxiety. 

And in some ways, we became impatient with her. We insisted she could change, and we took her to doctors to get her off the meds—even to a rehab.

Now that I’m on this side of the diagnosis, I’d go back to the early stage and be kinder.

I often suggest to people who are in this boat with me to forgive themselves for what they didn’t know or understand.

I’m working on it.