Dementia Update

 

 

Shelley and me before her ten day quarantine.

Shelley and me today

I haven’t written a recent update about our daughter who has early onset dementia.  Some caregivers find it easier to share than I do. I’m not sure why it’s hard for me. Perhaps it’s because I’m afraid readers will find my stories about a suffering daughter an uncomfortable read.

I participate in a group of caregivers whose loved ones have Alzheimer’s or dementia. We ask for advice, encouragement, and sometimes we vent frustrations, but we understand each other and make no judgments. We’re all enduring the same heartache.

I've missed our daughter. I haven’t seen her in about twelve days, but I saw her today. Yay!  I was excited.

After my last visit, she tested positive for Covid, and the facility had to quarantine her. She had no symptoms, and for that, I’m thankful. Six people were placed into isolation, and she was one of them.

I doubt she understood why she was moved, and what happened. I’m sure she missed me. I visit  three or four times a week. She knows who I am, although she gets terminology mixed. Instead of mom, she calls me Daddy.

I’ve called to check on her. They tell me she’s fine and doing well, but I needed to see for myself.

When Covid was new, we had to visit through a window.

Later, I was designated as an Essential Caregiver, and I was permitted inside her room.  I couldn’t go into other parts of the facility, but I could visit her in her quarters. For that, I was happy.

It’s heartbreaking to see a loved one slowly diminish.

She’s a tiny thing. She always has been. She’s stands 5 feet tall these days. As a full-term baby, she weighed a whopping 4lbs and 4oz. She stayed in the hospital for ten days, and I brought her home at 4lbs and 13oz. I think the doctor got tired of me badgering him to let her leave the hospital. He’d said she could leave the hospital at 5 lbs, but I wanted my baby home with me. I wanted to take care of her and make sure she was okay.

Now, decades later, I want the same thing again. I want her well and at home.

Dementia is a sad disease. It steals the mind and robs the body.

She remembered me today and our songs. And get this! She called me Momma several times! Joy of all joys! We sang together. After my absence, I was afraid she would have declined and not remember me or our songs.  It was a blessing to see her recall.

She sleeps a lot. When I went inside to find her, she was asleep on the sofa in the community living room. I woke her and took her to her room. We visited for about forty-five minuets and then she fell asleep while still talking to me.

I continue to hope someone will find answers to the diseases under the Alzheimer’s umbrella.

In happier days. Before dementia.

Cherish the Moments

On Friday, February 26, 2021, Hubby and I experienced a few sweet seconds to cherish for a lifetime.

In a moment of clarity, Shelley, our daughter with dementia, clasped her hands in prayer mode. She said, "I want to tell y'all something. I really appreciate y'all taking care of me, and I love you."

I cried.

Her sensible sentences are rare these days. I think she understands more than she can express. She says, "I love you" over and over when we see her. And we see that as true in her eyes.

I sing to her, "You Are My Sunshine" and she joins me. Her words aren't always there, but she can carry a tune. Once, we could harmonize together, but not these days.

She has no idea how much time and emotional effort goes into taking care of her.  And that's okay. Once a mom and dad, always a mom and dad, at least it is so with us. I suppose some people are not as fortunate as Shelley. Not all parents, (or children) continue to love and support a loved one with a disease.

In her former facility, the director told me how a resident had died. She tried calling the son for three months to tell him his mother had passed away. He never answered. He finally called one day to check on her and heard the news.

Shelley has family and friends who no longer want to see her.  They think it's scary to visit with her. It isn't scary, it is sad, but life requires us to do what we sometimes don't want to do. Go where we don't want to go. Sacrifice. 

There are residents living in her present facility who seldom have visitors. Can you imagine how these homes might be if no visitors ever darkened the doors? I fear abuse would be rampant.  Neglect is abuse. Too many times, I see a few aides sitting and doing nothing. When a visitor arrives, they hop up to do their job. However, many are caring and loving to the residents. I thank and compliment them, and I'm sincere. Just like us, they need encouragement. 

I once visited nursing homes to play hymns for the folks.  I'd go in unannounced (before the pandemic) and play.  I don't play all that well, but they don't care. They love the attention. My dad lived in one after a stroke, and I enjoyed playing for him and them. Every time I visited, the folks would see me and beg me to play for them.

I never dreamed I'd have a daughter in one.

These dear ones with dementia may not remember a visit from a loved one, but they cherish the moments a visitor spends with them. It brings one joy to brighten the lives, even if it is temporary for them.

Drop in a facility and visit a friend or loved one. They need it, and so do you.

Both of you will cherish the moments.

Family is important.

Update: Two Ambulances, Three Hospitals.

 A month has galloped by since the incident with our daughter. 

A bruise on her face remains, but she is healing. She doesn't remember the incident--or the male resident who attacked her. Forgetting, in this case, is a blessing.

I reported the incident to the State of Texas in several recorded phone calls and via email. Inspectors spent two days at the facility and gave them ten days to make changes. I have no idea what happens after ten days, but we will see.

One of the good things is that everyone keeps an eye on our daughter.  Even the residents!  I saw Shelley wandering off one day, and a resident brought her back before I did. 

That week was a crazy one. Shelley's incident occurred on a Saturday. The following Wednesday, I took my hubby to the hospital for a day procedure. Then, on Friday, he became ill, and we hurried to the ER. The physician diagnosed him with pneumonia. I once more rode in an ambulance.

I feel like Job in the Old Testament. One surprise after another. And none of them were good or happy. Who could guess I'd be in two ambulances and three hospitals in one week.

Hubby is recovering, so that's a good thing.

I haven't intended to neglect my blog or my writing, but I've been busy helping with more important issues. I've missed all of you.

We don't know why God allows storms in our lives, but we trust Him. For individual and nations, God allows good and bad to take place. Perhaps He does so to bring about knowledge. Knowledge about Him, as well as ourselves. Perhaps He gives people and nations circumstances to generate repentance. He only allows us so much sin before He intervenes. Perhaps He plans glory to Himself. If we suffer well during ugly circumstances, others can see God. 

Who knows?  Not me, that's certain.

However, I believe this. When I can't understand the reasons for my pain and sorrow, I can trust His heart