Severe Dementia Questions.

Questions About Severe Dementia I Receive Now That Mom Is Getting Worse

I don’t know how long Mom will go on, and I really don’t know how long she has been suffering from dementia. She and I were so focused on Pop until he passed in 2016, I know she was starting to show signs—and hiding it from me—around then. Before his death, Pop told me as much, and made me promise to get her some help as soon as I could.

By the time she fell in 2020, she was already suffering moderate dementia. The fall and the long recovery process did her no favors, and she was diagnosed with severe dementia shortly thereafter. Loyal readers know she has recently been getting so bad she doesn’t always recognize me, which is a huge step down that slippery slope. 

So, am I in the “home stretch” of dementia? I don’t know. Maybe. Research says about ten years from diagnosis to death, but Mom hasn’t followed the “rule book” up until now, so who knows.

But with Mom’s sharp decline, the questions I receive via email have become more targeted, and frankly more passionate, than those I answered last year. I thought other people might benefit from hearing what others are concerned with, so here is a recent list of questions I’ve fielded:

What Is Your Visiting Schedule?

My visiting schedule has changed dramatically from when Mom first moved into the facility. During the first months of her living there, I made it a point to visit at various days, and times all around the clock. I suggest you do the same. It gave me a great perspective on how she was spending her days and her nights, what the routines of the location were, and how the nurses were interacting with her.

And, honestly, I didn’t want them to know when I might pop in. 

At this point, I’m very comfortable with the care Mom is receiving, and have settled into a somewhat more predictable pattern. Creating a loose schedule has helped me mentally, too, because I can better plan my own time. 

The answer to the question is between three and four times per week. Three is the norm, with two afternoons during the week (Like Tuesday and Thursday) and one morning during the weekend. Some weeks I do four times, generally every other day starting on Monday, but that tends to throw off the next week, so three times a week is much more common.

How Do You Stand “That Place”?

I put Mom in the nicest, best facility that I could find. It is in the middle of prices that I looked at, and is exorbitantly high. They have a dedicated entrance for visitors, and it’s a short walk to her room or the common areas.

But, man, can it be a soul-sucking experience.

To be completely honest, I take a deep breath before I open the door to The Facility with my eyes closed. I remember my “Why?” and paste a smile on my face. It’s better when we are in her room, because it’s just me and my mom, but entering The Facility really isn’t easy on the soul. 

It’s really, really hard on my family. Sweet Husband never complains, but I know every time he visits it reminds him of his own mother’s passing. The idea of my kids going to The Facility, though, just hurts my heart. They don’t complain either, but I know it takes a toll on them to enter that place, especially when you never know what you’ll find inside the door.

My best advice is this: Set your own schedule that is comfortable to you. And never forget your “Why”—it will carry you through. 

Severe Dementia Questions: Do You Need More Help Now That It’s Worse?

I actually need less help now than I have for the past 16 years I’ve been doing The Job. Moving Mom to The Facility was a difficult decision, but it absolutely has allowed me to have a semblance of a life. For years, while Pop declined and then Mom started to suffer, I could barely leave the house on weekends, and vacations were a Herculean effort. Now that I have hired full-time professional help in an in-patient facility, I am free to continue my relationship with Mom on my terms, and without the added stresses of being her primary caretaker.

I will never regret the years I cared for my parents in my home, that’s for sure. Now, though, I am free from the burden of asking my loved ones for help in ways that were difficult and uncomfortable for them.

How Do You Handle Financial Or Legal Matters Now?

I’ve written multiple blogs about stabilizing your loved one’s medical, financial and legal matters before things get too bad, and I am living the benefits of that now. Having all of her papers in order, I am able to act freely when it comes to every aspect of Mom’s life. 

There is absolutely nothing more important to the success of being Mayor than preparing all of the proper documentation as far in advance as possible.

Just one more thing to thank Pop for. 

How are your kids handling the decline?

Pretty freaking badly, I must say. 

I think it’s easier on me because I am there on a regular basis, and have watched the decline first hand over the years. Or maybe I’m immune to feeling any worse than I already do, who knows. 

Last week, LeeLee went to The Facility alone, without mentioning it to me. It took a few days to tell me Granma didn’t recognize her. At all. I can picture the scene in my mind, and it breaks my heart and brings tears to my eyes. Sweet LeeLee, who always brings sweet treats for Mom, was still welcomed, but that light of recognition never went on in Mom’s eyes. It must have been quite painful.

I do think my brothers are handling things pretty well, though. They get visibly upset when they visit, definitely, but I feel confident they have come to terms with what is happening, and what is inevitable.

But the loss of yet another Granma? The last grandparent? I don’t think my kids will ever be ready.  

Severe Dementia Questions: Do you still bring your dog?

Luna Belle is a frequent weekend visitor to The Facility, and she is welcomed joyously by all of the residents. When Sweet Husband brings her, he inevitably has to walk all around the common area, so that Luna can lick everybody’s hand and make them all call out in surprise and tell him about the pets they have loved. 

I recently did a blog about Luna the unprofessional therapy dog, which apparently struck a positive nerve with many readers. I believe wholeheartedly in the healing power of pets, and encourage you to keep your family pets in your care team, either at home or in a facility. While I would never have added a pet during these difficult years at our house, I am extremely thankful that Luna was in place when we needed her the most. 

Are there any physical changes now?

Mom is getting thinner and thinner, no matter how many treats LeeLee brings, or how much fast food I bring her for dinner. She’s lost her appetite for just about everything else. She bruises so easily now, and those bruises turn to open wounds due to her skin becoming so thin. But everything she is suffering from is actually normal for aging. She is, at 93 ½, the healthiest person I know, with no medications still.

And she doesn’t complain about a single pain in her body. At all.

She’s Bionic Granma.

What do you ask the nurses?

I’ve worked hard to cultivate a good, strong, and positive relationship with everyone at The Facility, and suggest you do the same. They smile when they see me at the door, and freely share the good and bad parts of Mom’s day with me immediately. 

For my part, I don’t overreact. A new bruise doesn’t bother me, nor does it when she sleeps past breakfast or refuses dinner. I recognize the difficulty of their position, and how difficult Mom can get as she sundowns.

So what do I ask? Start with “How are you doing, nurse?” and watch their faces relax.

Severe Dementia Questions: How can she be THAT healthy?

If I could answer that, I would bottle it and be rich selling it.

Frankly, I believe part of her longevity is genetic—her mom died at 90, but her dad died when Mom was 18, so it isn’t on both sides.

However, I think the real reason is hard living through the post-Depression era United States. Mom had nothing, and had to work for everything she got in life. That type of grit and resilience is a hallmark of her generation, and I think what makes them virtually indestructible.

Unfortunately, the body was never designed to last forever. 

Do you REALLY stay that positive?

I get this question in my real life, too. And it cracks me up! Then again, most things crack me up!

Yup. I am really that positive.

In my house, we call it Big Pretzel Energy, and our positivity and general joy with life has carried us through many ups and downs. It is a conscious choice—every minute of every day—but it has served me well, and I will never change. 

Life is good, my friends.

Remember your “Why”, and you’ll be just as positive as me.

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about severe dementia questions!

Hey, since you’re here! You may as well check out creating a memory book, here, or if you’ve read that, check out managing medicine strategies, here! Or maybe you want to hear more about Pop, here. Or, check out our other topics here! Either way, I appreciate you!

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