Tag Archives: Alzheimer’s

September 19, 2012 · 8:05 pm

Sitting in Dad’s chair

Since I’ve been living with Mom for the past couple of weeks helping to take care of her as she recovers from surgery, I’ve been spending a lot of time sitting in “Dad’s chair.” It’s nothing special. It’s an old burgundy-covered recliner that’s a little wobbly so sometimes it makes my vertigo kick in.

Dad’s favorite chair.

But it was Dad’s favorite chair in the house. He sat in it for countless hours, watching classic movies on TV, reading the newspaper or a library book, and enjoying a pint of beer in the evenings.

So even if the chair is not the most comfortable it reminds me of Dad being comfortable and in his element, before Alzheimer’s robbed him of those simple pleasures.

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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 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 18, 2012 · 8:15 pm

What Dad was reading

I came across a receipt for a book that Dad checked out from the library in July 2010. That was just a few months before he became sick and then went to live in the memory care unit of the assisted care facility. His dementia had progressed quite far by this point; he was wandering and unable to accomplish many simple tasks.

The book was “Children of the West: Family Life on the Frontier” by Cathy Luchetti. Despite the disease progression, he picked a book that was in one of his all-time favorite genres: history. It’s a bit of a relief to know he wasn’t checking out unauthorized biographies on Justin Bieber, ha!

Still, I wonder if he actually read any of the book or if he just looked at the photographs. Did he comprehend any of it at all, or was checking out a book just a vaguely familiar task that he still was able to indulge in? I guess I will never know. I do know he never read at the care center he ended up in, at least that I know of. The staff asked us what his hobbies were, and reading and walking were really the only things we could come up with.

Sadly, the ability to read is stripped from many of those afflicted with dementia. So instead, Dad wandered up and down the hallway of his memory care unit, a man who had lost one of the greatest pleasures of his life.

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August 17, 2012 · 9:01 pm

Finding the hidden gems

Dad was such a packrat. He was like that long before the Alzheimer’s, but it got much worse once the disease progressed.

A Mum’s boy!

I just went through several grocery shopping bags full of Dad’s papers. Most were thrown under the bed, hanging out with the dust bunnies. Most of it was junk mail. There were dozens of cards and letters addressed to family members that were never sent. Lots of address labels that will never be used, and old bank statements.

But tucked deep into some of that junk mail were gems. Like this photo of Dad, as a teenager, with an inscription on the back: “To the sweetest Mum a Son could have. God bless you Mother. From your Loving Son.”

If I had not been very careful and deliberate, if I had rushed and not went through ever page in those bags, gems like this photo would have been lost forever.

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August 13, 2012 · 12:22 pm

Memory takes a hit with illness

With Dad, he was already in the mid-stages of Alzheimer’s when he developed gallstones and had to have major surgery. It was hard to tell if his mental state suffered from the anesthesia and slow recovery period. His “new normal” mental state was already compromised.

With Mom, she was showing a few signs of mental decline, but now it’s hard to know whether it was related to the cancer creeping up on her or actually the beginnings of dementia. Her mental state actually has improved quite a bit, I’d say she’s 80 percent there. She does complain about holes in her memory, especially during the time when she became so ill and through the surgery period when she was in the hospital.

I get an update today on when she will be released home. She wants to go, but her memory of home is fuzzy now. Hopefully, all of the familiar items will bring her comfort once she’s settled back into her “new normal” of a life with a colostomy bag.

And perhaps those glitches in her memory are a protective mechanism. There’s a lot in the last two months that I would like to forget! Maybe Mom is better off with the cloudy memory for now.

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August 11, 2012 · 6:48 pm

The loss of reason

I feel bad for Mom being surrounded by dementia patients who remind her of Dad. There is the man who eats hurriedly as if someone is holding a gun to his head. Dad ate like that too. Then there’s Theresa, who wanders constantly down the hallways of the nursing home. Dad’s wandering at home worried Mom half to death; he continued to wander when he was in the dementia ward at the nursing home across town, but at least he was in a secure facility and Mom didn’t have to be his security guard 24/7.

Recently, Theresa tried to break out of the facility by trying to push open the security door. Mom had to yell at her to get away from the door before the alarm sounded.

Mom is still trying to keep others safe, just like she did with Dad.

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August 9, 2012 · 7:30 pm

Trouble at the nursing home

From my experience, it does seem that specialized dementia wings are better for residents overall than mingling the mentally incapacitated with the physically challenged. Dad lived in a secure wing of a facility, a wing dedicated to Alzheimer’s patients. Now he still had his troubles there, wandering into people’s rooms, etc. I don’t think those issues can be eliminated without heavy-handed medicating, which the nursing home did engage in from time to time.

But Mom is in a skilled nursing wing of a nursing home, which is also co-ed and houses both patients with physical ailments and dementia. There are a couple of male residents who come into Mom’s room because her roommate smokes and they help themselves to her cigarettes. When I visited yesterday, one of these guys pulled up in his wheelchair right next to Mom at the dining room table, which was already full with other residents. He bumped into her, then mumbled an apology. But he spent the next several minutes rocking back and forth in his wheelchair, almost bumping into her again each time while she was trying to eat. Finally he took off.

We saw him after lunch and he tried to wheel up right behind Mom as she was slowly making her way down the hall in her wheelchair. I literally had to step behind her to give her space, and I could feel the guy’s wheelchair nipping at my ankles. I heard him mutter, “I’ll let her have the back.” I didn’t realize nursing home residents divided up territory like gang members!

One resident was so fed up she had staff put a bright, yellow sash across her door (connected with velcro). It said, “DO NOT ENTER.” Did that stop the man being passive-aggressive with my mom? Nope. I heard this loud rip and there he was tearing the blockade down!

Today Mom told me the man was moved to another facility. I think that was the right move. The man is suffering from a disease where he can’t control his actions, so he can’t really be blamed, but the safety of all of the other residents is of paramount importance.

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August 1, 2012 · 10:50 pm

What makes one give up?

With my dad, Alzheimer’s robbed him of the will to fight back. I watched my dad pitifully try to hang on to his personality, only to return a few months later and see a drugged-up zombie in his place. It was heartbreaking, but I’m not sure if those with dementia realize when they are crossing over to the dark side, so to speak.

With my mom, her personality has survived the major surgery, the setbacks and the recovery, and even the nursing home stay. But I know that Mom often puts on a cheery front for the medical staff. They all compliment her on what a great patient she is. And that is true, she’s very good about following orders and not complaining.

But with me, the tears come readily.

I went to visit her local bank the other day to let the manager know about Mom. The manager had helped my mom with a lot of financial issues, and she was sad to hear about Mom. She said that she wondered if at some point, my mom would just give up. “She misses your dad so much, and she’s so lonely.”

Mom already tells me just about every day about how sorry she is for being such a burden and that it would be better if she just let go.

And the honest truth is, it might be.

But then again, the nurse that tended to my mom through a special procedure today said she can tell what kind of spirits patients have just by working with them for a few minutes. She said, “I can tell your mom is a great person.”

And that’s the honest truth as well.

So that makes things really tricky. I don’t want my good-hearted mom to suffer needlessly, but the world could use a bit of her sweet spirit for as long as possible.

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June 20, 2012 · 7:09 pm

Six months since Dad died

Today is the longest day of the year, in more ways than one for me. On a positive note, while I did not actively participate, I fully support all of those who took part in The Longest Day event sponsored by The Alzheimer’s Association. The stories are so inspiring.

On a sadder note, today is the six month anniversary of my father’s death. It’s hard to believe so much time has passed already. I still think about him often, and not just when I’m writing on this blog. There are still regrets and pangs of guilt to work through.

My parents long ago, before disease caught up to them.

But now, the bad news. My mom has been very ill for over a week now. Symptoms include vomiting (with brown flecks), shortness of breath, bloating and distended stomach, shortness of breath, fatigue, loss of appetite and extreme heartburn. My mom has been in very good health (other than depression and grief over Dad) so I’ve been very concerned. Finally she had some tests done, and per my mom, the doctor said there was a problem with her colon. Since the tests were just xrays, I guess the C-word couldn’t be used until Mom gets a colonoscopy, but of course, my mind is racing to the likely conclusion that she has colon cancer. I hope it turns out to be something more treatable, but it looks like surgery may be in her future.

What’s most troubling is that she couldn’t get an appointment to see a specialist until July 12th. Mom hasn’t been able to keep any food down for over a week. She says her regular doctor is supposed to follow up with her regarding nutrition. I hope so!

(I tried calling her doctor but Mom hasn’t filled out the form that allows me to get information so I’m barred per HIPAA from knowing anything. I’m all for privacy rights but at the moment it’s frustrating.)

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