Tag Archives: dementia

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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Love from the librarians

As I have mentioned before, Dad loved the library. I visited the local library today and asked if I could use his card.

The librarian’s face lit up. “Patrick was such a sweet guy.”

I caught her up on Mom’s medical situation and it turns out her Mom had colon cancer as well. Small world! She said her Mom refused to deal with the colostomy bag as well.

She also told me how towards the end, before Dad went to the nursing home, he would sit down at a table and take all of the contents out of his wallet. They would gently encourage him to put everything back.

Dad kept going to the library even when he probably forgot what the place was for.

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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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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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Reminder of Dad

I visited Mom at the nursing home during lunch today. The spacious dining room is bright and airy, and looks out on the bird-filled courtyard. Still, there is much sadness in the air. The residents vary in degrees of sickness, and the ones with mental issues are mixed in with the ones with physical issues. Today at Mom’s table, there was a man that appeared to be in his 60’s. He had white hair, and appeared to be quite tall, though he was hunched over in his wheelchair. He had on a t-shirt that said something about grandpas.

He had pushed himself a few feet away from the table, and was gnawing with great intensity on the piece of fried chicken served with lunch. The entire time we were at the table, he continued to eat that way, as if he were obsessed with it.

When Mom and I ventured out into the courtyard after lunch for some fresh air, Mom said the man reminded her of Dad. She ate with Dad a few times while he was in the nursing home. He had a great appetite, but would eat in a rushed manner, like the man my mom now dines with.

There’s a woman with dementia in Mom’s wing. She rolls herself up and down the hallways in a special walker that is connected on all sides, I guess to prevent falls. The confusion in her eyes is the same look I saw so many times in Dad’s eyes. Today she was looking for the bathroom. The nurse was a bit short with her (I’m sure it was probably the 50th time she had told the resident where the bathroom was that day). “Your bathroom is in your room. 107!”

The woman mumbled 107 as she took off down the hallway again. Mom was slowly rolling herself in the wheelchair back to her room. We encountered the wide-eyed woman again.

She looked at me, pleading. “Where is the bathroom?”

I repeated what the nurse had said just a minute before. She looked relieved and made it into the bathroom in her room. Later, as I was leaving, she was trying desperately to get into a locked room.

I hope Mom doesn’t have to live here permanently, but I know that it may be a valid option.

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Handling the curveballs of life

After a three-day respite back home in Atlanta, I’ve returned to Roswell to be with my mom, who is still in rehab at the nursing home. I had a “small world” moment while talking to the cab driver that picked me up from the hotel. It turns out that his wife’s father had dementia and her mom had colon cancer, just like my parents.

I figured it was a good moment to get some feedback on the cancer treatment options in the area from a local. His mother-in-law was diagnosed in the latter stages, but survived two years. She did the chemo treatment, and had good days and bad days. All pretty typical.

What wasn’t so typical is how the wife’s life changed when she moved from the family home in Texas to be with her mom in New Mexico. No doubt it was a hardship and a struggle for the family, but when her mom eventually went into hospice care, the hospice staff were so impressed with the wife’s abilities that they offered her a job! She now runs her own private caregiving agency.

Now, I don’t expect that kind of ending for myself. As I’ve said before, I’m not comfortable in that kind of role. However, could my dad’s dementia and death and now my mom’s illness be creating a new path in life for me? Perhaps. It’s at least worth an exploration. I may end up with no choice but to be a caregiver for my mom. But the attitude and perspective I have in that new role? That is all up to me.

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The need for companionship

First of all, it’s my 200th post! Thanks to everyone who has followed the ups and downs of my strange journey this year, as I explore my father’s death and legacy and now my mom’s serious illness and brush with death.

Mom was finishing up lunch today when I came to visit her at the nursing home. She ate everything but the main dish, which was veal. That’s not something she ever ate at home, so I can’t blame her for skipping it. It seems that in the hospital and now in the nursing home, the menus are very meat-centric. I wonder when my generation (and the future generations) get old if the nursing homes and hospitals will be forced to serve up healthier food, vegetarian options, etc. I guess they are going for comfort food that will be appealing to the masses but all of it ends up looking like mystery meat to me.

It’s also sad to see so much food wasted at these places, when there’s obviously people starving all over the world.

Now Dad was quite different when he lived at the nursing home. Up until the last few months of his life, when he lost the ability to swallow, he would clear his plate every time. The nurses would joke about not being able to keep him filled up. I’m sure he would have wolfed down Mom’s veal cutlet!

There’s also another major difference between Mom and Dad. With Dad’s dementia, he withdrew more and more. He would be brought into the dining room to eat, but would do so alone at a table, not talking to anyone. Dad was a bit of a loner before the dementia but he had that Irish charm and could strike up a conversation with a stranger quite easily. I’ll never know if he suffered at mealtime, or if he was content in his own little world.

Mom, on the other hand, is a social butterfly. She’s already been adopted by the others into the “dining room family,” as Peggy, another resident explained. This nursing home “mafia” collects any salt and pepper packets not used and puts them in a community tin. So I guess I know where to go if I run out of salt and pepper!

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Losing pieces of dignity

My mom had a pretty good day. She started rehab and took a few steps, so that was important. I remember how difficult it was for Dad to get up out of the hospital bed after he had been bedridden for a week. He never walked on his own again.

Mom had her catheter taken out today, which is also a good sign. However, instead of putting a diaper on her, they just put a pad on her. Before the surgery, she was able (with assistance) to move from the bed to the chair-toilet at her bedside. Now, post-surgery, she is too weak to do that. She ended up wetting herself a couple of times today.

Finally, they wised up and put a diaper on her. I never thought I would say I was happy to have my parents wearing diapers, but in this case, it’s the lesser of two evils. Mom still remembers wrestling with Dad to get his diapers on him when he still lived at home but was already suffering from mid-stage dementia.

Mom is a model patient, so no fighting from her.

Still, it’s scary and amazing how quickly one can lose control over their basic bodily functions. For Mom, a diaper is more dignified than not wearing one and wetting herself. It’s these small but important details that are sometimes overlooked when caring for the elderly.

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A tour no one wants to take

So it’s pretty clear that Mom won’t be able to go back home immediately after discharging from the hospital. She’s going to need some skilled nursing care, in a safe, secure environment. If we were rich (maybe if Mom had won a million dollars instead of $100K) I would gladly hire a private nurse to stay with my mom 24/7. But that’s not the case. Mom is a bit confused and thinks she can stay at the hospital indefinitely. The hospital will be booting her out as soon as she meets the minimum requirements for discharge. So she’s okay with staying in a facility for now, because even she understands she’s not in shape to go home just yet.

So today was the tour of skilled nursing facilities, aka nursing homes. It’s a depressing journey, but at least there is only three in town to look at. With Dad, he was simply placed in one that had availability, so we didn’t do a tour of them, but I couldn’t help but think of Dad as the facility representative mentioned the special unit for dementia patients. I saw a bit of Dad in many of the patients that were parked in the corner of a hallway, or eating listlessly in the dining room. There were also some residents that were ambling about quite well and were friendly. And then there were a couple that were screaming. It’s all part of the typical nursing home environment, and it’s where Dad spent the last year of his life.

I don’t want the same fate for Mom. She will be going into short-term care, with the plan being to get her strong and stable enough to return home with a minimal amount of supervision. Mom is tough, and loves her independence. She’s also good at following directions, something Dad of course could not do due to his dementia. So I have hope that this move will be a positive one, and that she will be out of the skilled nursing facility in a week or two.

Home. That is the goal.

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The diagnosis

So Mom has colon cancer. It wasn’t unexpected news, but hearing it from the doctor makes it very real. The good news is that they were able to surgically remove the tumor, and it had only spread to one lymph node. And right now, Mom has a major surgery recovery to focus on. The cancer will do what it must until Mom is strong enough to fight it.

Mom is tougher than she looks!

As one gets older, it seems that life often comes down to one diagnosis or another. I remember worrying so much about Dad when he had to be whisked away in the ambulance with stomach issues not so different from my mom’s. His turned out to be a fairly benign gallstone. But there was no surgery or cure for the disease robbing him of his mind. Over the course of the last year of his life, he was diagnosed with a medley of infections, and taken on numerous ER visits for falls. Like many elderly, it was the pneumonia that put him closest to death’s door. His body, weakened by the infection, eventually shut down.

The doctors are keeping a close eye on Mom and are trying to help her avoid pneumonia at all costs. Of course I see her weakened, frail body and can’t help but be reminded of Dad. But Mom still has her spirit, and her sense of humor, which sadly Dad lost due to his dementia. I hope this means Mom will have a better chance at getting and staying on the road to recovery.

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