Tag Archives: dementia

September 20, 2012 · 7:26 pm

9 months since Dad died

It’s hard to believe that it has been nine months since my dad died. So much has happened this summer, and so many of the events have reminded me of Dad.

I never would have thought that I would be taking care of Mom now, who is facing serious illness herself. I had hoped for a respite from illness, for both myself and especially for my mother. Alas, that was not really meant to be.

One of my favorite photos.

Even though I have been so busy tending to Mom these past few months, I have been keeping up with all of the Alzheimer’s events taking place this month in honor of World Alzheimer’s Month. Now that I’m spending so much time with Mom in my parents’ home, memories of Dad are everywhere. Mom still misses my dad dearly and talks about him every day.

So even though Alzheimer’s disease separated Dad from us over the last year of his life, he is still in our hearts and memories every day.

I’m keeping all of those who have dealt with Alzheimer’s in their family in my thoughts.

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September 14, 2012 · 9:26 pm

Disease a hitchhiker

I’ve been following Kathleen Cohn on the Cowbird storytelling community as she writes about her husband’s cancer journey. I started following her stories before my mom was diagnosed with cancer, but now it hits even closer to home. Her writing is eloquent, honest, heartbreaking and hopeful.

The way their doctor described her husband’s rare cancer really struck me, and seems to apply to other diseases as well:

“Along the way we picked up a hitchhiker but managed to lock him in the trunk.The goal was to keep him in the trunk. Sometimes he may get out of the trunk, and into the backseat, but we needed to keep on top of it so that he didn’t get in the front seat and grab the steering wheel.”

Certainly that can apply to cancer but also to Alzheimer’s disease. Dad had his good days and his bad days as he tried to keep control of that steering wheel controlling his life. But eventually, that dementia demon escaped the trunk, crawled over the back seat and took control of my dad’s life.

Mom doesn’t drive, but she is the world’s worst backseat driver, so I wonder how she will fare against her hitchhiker.

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September 12, 2012 · 8:19 pm

The surprise at being called a caregiver

When Mom took care of Dad at home those first few years he had dementia, I don’t think Mom considered herself a caregiver. She was simply being the dutiful, loyal wife, taking care of her husband of almost 40 years. It was automatic, no title necessary.

I feel the same way now. I’m just a daughter taking care of her mother in need. I guess since I quit my job to take care of Mom, if someone asked me what I do for a living, I might say “family caregiver” since I’m living off of Mom for now. 🙂

So today it was odd when I received a discount for being a caregiver. It’s nice to know that caregivers are recognized in this local community (even if was just a dollar or two of savings.)

So yeah, I guess I am a caregiver. It still sounds odd, but I guess I will grow into the title.

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September 11, 2012 · 9:06 pm

Dad the foam sipper

Mom was telling me today that even after Dad’s dementia had progressed, Dad would still request a beer at night as had been his nightly habit since he was an adult. (Well, back in the day, after putting in a long day at the trucking company, it would be a few beers.)

Old habits die hard, but dementia can alter old habits just the same.

Mom said Dad would just sip the foamy head off the beer and then forget about the rest of it.

He would wear a moustache of beer foam, like a confused clown, until Mom would help him wipe it off.

Poor Dad, robbed of even the smallest of pleasures.

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September 9, 2012 · 7:27 pm

Losing confidence as you grow older

One of the earlier signs of dementia is when a person loses the ability to do tasks that were very simple for them before. For Dad, this included things like ordering at a fast food restaurant or making correct change at the grocery store. He would accuse the clerks of trying to rip him off, when handing them a $10 bill for something that cost $15.

Mom doesn’t have dementia (that we know of) but she has been through a major surgery and has had anesthesia for three different procedures. She’s also been away from the routine of her life for two months. Today she wanted to order Pizza Hut and have it delivered to the home, something she had done dozens of times over the last few years. Today she waffled, almost wanting to give up at the thought of the task. I gently pushed her and she ended up doing just fine placing her order, even remembering a tip. 🙂

She also was not happy with the cordless phone I bought. (Her old phone was dead.) I thought it would be safer for her, so she wouldn’t try to move too fast to answer the phone and fall. But instead she thought it was too high-tech. We compromised. I ordered her one of those old-fashioned desk phones for her bedroom and we will place the cordless phone in the kitchen, so if she’s in there and the phone rings, she can answer it easily without having to run through the house.

Of course, you don’t necessarily have to be older to have these moments of uncertainty. I’ve also been away from the routine of my life for two months now, and have nightmares about forgetting the code to my home’s security system!

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September 8, 2012 · 9:35 pm

When parents wear diapers

As I said previously, I’m getting a taste of what Mom went through with Dad. I’m not sure what’s more difficult to bear: when a child has to care for a parent or when a spouse has to care for a spouse (with dementia).

Now Mom asks me whether her diaper needs to be changed. We grow as close as the mother-daughter relationship can when dealing with the colostomy bag.
When you’ve dealt with that, well, you’ve earned your dutiful daughter sticker. 🙂

So far I’m hanging in there, though I do worry the stress of today will catch up with me tomorrow or next week or next month. But if my mom’s cancer or my dad’s Alzheimer’s has taught me anything, it’s to be here today.

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September 6, 2012 · 8:01 pm

A parent comes home

Well, Mom is home. There were times when I thought I would never write those words. We have been through so much in these past two months.

Dad was never able to come home, but then, with his dementia, home was lost to him. It was lost to Mom as well for awhile, but happily she seems comfortable being back at home.

Of course, I know more dark clouds probably lurk on the horizon. Is there still cancer in my Mom’s body? That’s the next bridge we have to cross.

But today was a good day. And that’s what matters the most.

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September 4, 2012 · 8:44 pm

Things to think about when you get older

After seeing Mom today at the nursing home here in Roswell, I was waiting for the bus which was running late as usual. An elderly lady came up and set down with me. She would peer over her book periodically to see if the bus was coming. Finally, she sighed and said, “Well I was going to catch a movie today but now I’m not going to make it.” She wished me a nice day and shuffled back down the sidewalk. It was 100 degrees outside.

Sure, she could have called for a cab but they are really pricey in this town.

It’s too bad that a town with such a large elderly population doesn’t have a better transit system. Even the small town my parents retired to has a more reliable, door-to-door shuttle that only costs $1 each way. Each year, the transit system there has to fight to keep their government funding, because local politicians don’t want to throw a few dollars their way. It’s a clean, reliable service and is a lot cheaper than the town’s cab service. There’s also a sizeable elderly population and a lot of tourists.

Anyways, the poor old lady who just wanted to see a movie made me think about how important it is to think about things like transit options as you grow older. Luckily, my parents had options when Dad had to give up driving due to his dementia. It’s important to have these resources so that you can still get out and enjoy yourself, even if it’s just a trip to a movie theatre or local restaurant.

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September 2, 2012 · 8:49 pm

Another ER visit

I never was with Dad on any of his emergency room visits. By the time I flew in from Atlanta (if my presence was recommended), he was already in ICU. Dad had several ER visits in the last year of his life, while he lived in the care center. None of these trips involved Mom or I being by his side. He would fall or have some other minor issue, and the nursing home would send him to the ER, then pick him up when he was discharged.

Today, Mom was sent to the ER for what turned out to be yet another blood clot. (That would be #3 if you are keeping track. I know I am.) Luckily, Mom still has most of her mental capabilities and knows why she was brought to the hospital. She can interact and joke with the staff. No one enjoys visits to the ER, but Mom can maintain her good spirits throughout the ordeal.

But I thought about Dad today, and all of those ER visits when he was in the latter stages of Alzheimer’s. Was he frightened? He was no doubt disoriented. He could name some of the staff members at the care center, the ones he liked the most. (Well, he would get close enough to their names, say Ronnie for Ricky.) All of a sudden, he was whisked away to a new place with new people. Perhaps it didn’t faze him that much at all. It’s just one of those things I’ll never know.

I’ll also never know the degree of loneliness that Dad felt, if he felt any at all. The emergency room is a lonely place to be, and you usually have plenty of time to sit around and think about it, as long waits are legendary. Did Dad yearn for human companionship of some sort, even if he couldn’t remember his family any more? I don’t know.

But I am glad I made the decision to be with my mom now.

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August 23, 2012 · 8:42 pm

Dad’s story being shared

If there was a way to warn hospital staff members about Mom, I would. If you say hi to Mom, you are in for at least a 15 minute conversation.

Today she told Dad’s tale of dementia to at least three strangers. While it becomes repetitive to me, it is therapy for Mom and her way of spreading awareness for this terrible disease.

Mom, the accidental activist.

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