Thursday, October 16, 2014

What I dread most these days

Last weekend, while my best friend and her husband were visiting from Virginia, I got a phone call that Dad was being taken to the ER. He was complaining about severe abdominal pains again. (He has constant problems from not getting enough liquids, but that's another rant for another day.)

Bobbie (my friend), my sister, and I spent 6 hours in the ER with Dad. It was a long, long evening (with Dad's sundowning in full evidence) before they got him squared away and released back to his residence. Another lengthy ER visit to add to the very long list. (And don't get me started on the ER physician who walked into Dad's room and asked, "Sir, can you tell me what's going on?" "Um," I said, "you do know he has Alzheimer's, don't you?" The physician frowned and shook his head. Don't they read charts anymore? This is why a dementia patient should never be sent to the ER alone, and yet it happens all the time.)

Ask me what I dread most these days and my answer will likely surprise you: what I dread most is being asked a simple, well-meaning question: "How's your Dad?"

Because the answer is, not good. Time and Alzheimer's march on, and both are deadly to my Dad.

It sounds like I've given up hope, doesn't it. But damn it, there *is* no hope with Alzheimer's. He's not going to get better. He's not going to improve. He's on a downward spiral that will only end when he does. Where's the hope in that?

The best any of us can do, those of us who have a loved one with Alzheimer's, is practice acceptance. I can't change my father's fate. I can't change what's coming for him. The only thing I can do is try to let him know he's loved, that he's not forgotten, that he's being taken care of. Most of the time, I'm grateful for that much.

But there are days, boy, are there days, when anger is the keyword of the day. Why should anyone, let alone my father, have to suffer through this protracted, undignified, unrelenting march through Hell? Why should any family members have to watch this horror play out? It's a fate I wouldn't wish on my very worst enemy.

If you don't know anything about Alzheimer's, please take the time to educate yourself. It's not, as I heard one woman remark the other day, "just a normal part of old age." No, dear lady, this is not "old age." This is a disease that eats away at your brain until all memories and all physical functioning are obliterated. This is a disease that causes your children and grandchildren to have to say goodbye to you every day for the rest of your life, because -- every single day -- they lose another piece of you. Does that sound normal to you?

So, how is my Dad? Thin. And short. He's lost a couple of inches off his height. He doesn't eat unless someone helps him. He can't remember what a fork or spoon are for. Sometimes he doesn't even remember what *food* is for. I can put a cookie in his hand and he will stare at it blankly, then ask me, "What do I do with this?" "Put it in your mouth and bite down, Dad," I say, trying not to cry. He's becoming more and more agitated as time goes on, losing the ability to filter and control his emotions. He yells at people. Often, he thinks he's at his old job, or back in the Marine Corps, fighting a war in Korea. Sometimes he thinks he's still young and living at the old house with his Mom and Dad. When he asks, "How's Mom?", he doesn't mean my mother; he means his.

When I greet him, I always introduce myself. He doesn't often remember me anymore. He knows my name, but not necessarily my face. If I say to him, "Hi, Dad, it's Cindy," he'll reply, "Cindy's here? Where is she?" In his mind's eye, I'm still very young.

No, there is nothing normal about Alzheimer's. And if you had to spend one day with an Alzheimer's patient or their family, you would know this. I pray you never have to know it, but statistics say you will.

Please consider donating to the Alzheimer's organization to help find a cure for this disease.

This is *not* old age. This is Hell.

Thursday, September 4, 2014

They Never Stop being a Parent, Do They

Dad was in a good mood today when I visited. He hadn't eaten lunch (opted for a nap instead) so when I got there at 3:00 I sat down with him and helped him eat his lunch. I'd also taken him a chocolate milkshake so he was content. :)

When it was time to go, I bent down to kiss him and said, "I'll see you later, Dad."

He turned and looked at me, and said in his best parental voice, "Who said you could go?"

Then he smiled. "Nah, it's okay. You can go. I was just kidding."

Sunday, August 24, 2014

Even on a bad day he makes us smile ❤

I'm a couple days late posting this. When I was in to see Dad last
Thursday he wasn't having a good day. He was agitated and worrying about things that were real only in his mind. It's hard to help when you don't know what it is you're fighting.

Our good friend, Mary, was there visiting Dad when I arrived so she sat on one side of him and I sat on the other. At one point, another resident's daughter came by and asked Dad how he was doing. "And look at you, Harold," she said, "You're surrounded by good looking women."

"I know," Dad  said, grinning for the first time all day. "I think I won the lottery."

Dad and family friend, Mary

Saturday, August 9, 2014

Thoughts from a Tired Daughter

We're tired. Fourteen years of dealing with parental dementia, the constant worrying and the daily grieving. There is no let-up.

So, yes. We're tired. Like thousands of other family members who have loved ones that are suffering from some form of dementia, we are tired.

If you have a caregiver in your family, don't forget them. They are walking a path that you can't possibly understand unless you've been through it, too. Take it from me: it's by far the most difficult thing I've ever done, or ever expect to do.

There are days when a kind word of support is all we have to get us through. But you know what? It's enough. So, yeah, if you have a caregiver in the family, don't forget them. Call. Stop by. Send a card. Send a prayer. You have no idea how much you will be helping them.

Update on Dad:

Dad's downward progression this year has been faster than in previous ones. He's much more withdrawn, moody, having difficulty eating. It's really hit-or-miss now whether he will recognize us or not when we visit. He has frequent hallucinations (i.e. talking or arguing with people who only exist in his mind). And he makes less and less sense when he talks.

There's no way to sugarcoat this, nor do I want to. This is an ugly disease. Please consider donating to the Alzheimer's Association to help find a cure.

Before it happens to someone *you* love.

Monday, July 14, 2014

Lots of company today

Took this picture of Dad today when my husband Tom and I went out to see him this afternoon. Our dear friend, Mary, was there visiting with him so I took their picture and showed it to him "Look, Dad, I took your picture." "Yeah," he said, looking at it. "Hey, I'm good lookin'." ❤

I also got a picture of Tom giving Dad a shave. Dad really seems to enjoy the whole process, probably because it is such a familiar thing to men, something they've done every day of their adult life (if clean shaven). Perhaps it's like when women get their hair done: so very relaxing.

He was having a really good day today. I'm so very grateful for every good day.

Tuesday, July 1, 2014

A good day

Good days are getting farther and farther apart, but Monday was a very good day. You can't go wrong with milkshakes and "I love you."

Tuesday, June 24, 2014

Bundle up for. . . summer?

Yes, folks, it was 85 degrees yesterday but Dad was still wearing his wool hat, jacket, and corduroy pants. He's always cold. (He never did like air conditioning, much to this daughter's dismay when she was growing up.)

Some days he looks so tiny and frail, it puts another little crack in my heart. Too fast....time is going much, much too fast.

Then he smiles and winks at me, and I forget to be sad for a while. I love those winks.

Thanks, Dad. ❤

Sunday, June 1, 2014

Say what?

Some days you just have to laugh.

At the Memory Care facility where Dad lives, we've been told for years (and I do mean years) that residents can't have their bed pushed up against a wall; there must be room for access on both sides. We had wanted to try it because Dad was occasionally falling out of bed. We especially wanted to try it when my father fell out of bed and fractured his shoulder. But, "No, it's not allowed."

Guess what greeted me when I walked into his room today?

Some days you just have to laugh.

Monday, May 26, 2014

"That" Smile

Dad has this certain smile. I call it his "lost" smile. It's the one that means, "I have no idea what you just said, but I'm going to act as if I do."

I've been seeing it a lot lately.

Conversations these days are me repeating myself over and over again, hoping to find the right set of words that will click in his brain.

"Dad, are you warm enough?"

"What's that?"

"Are you warm enough?"

"No thanks, I'm pretty full right now."

"Dad, are you cold?"

"Yeah, it's a nice day, isn't it."

"Dad, do you want a jacket?"

"No, thanks. I'm not cold."


Other times, I get the lost smile. And then I change the conversation so that he doesn't feel frustrated or embarrassed by his difficulties.

During our visit Sunday, I told Dad that Monday was Memorial Day. I tried to get him to talk about the Marines, a favorite topic, and I got that smile. The lost smile. And part of my heart broke. His time in the USMC was a big part of his life, a big part of his sense of self. It pains me to see that growing dim.

But, these things are not unexpected. It's what Alzheimer's does. It's what makes it such an insidious disease. It erases a person't existence from the inside out.

And yet....

And yet. We did have a lovely visit Sunday. The day was beautiful, warm with a gentle breeze. I put Dad in his wheelchair and we took a stroll around the property, then sat in the shade for an hour, just being together.

Every so often he'd smile at me, a real one, and  say , "Isn't this nice?"

I could see in his eyes that he was there, connecting with the sunshine, the breeze, the smell of lilac coming from the bush around the corner. Me.

"Yes, Dad. It's wonderful."

And it was.

Happy Memorial Day.

Sunday, May 11, 2014

Trains, Planes and . . . Boats?

These days it's a challenge to have a conversation with Dad as he often doesn't make sense. He knows what he wants to say, but the words just don't come out the way they are supposed to. Still, he enjoys a good conversation -- always has -- so we try to keep up as best we can. In the end, I don't think it really matters to him what we talk about. Just as long as we are there and connecting on the heart level.

And yes, it may be Spring (finally!) here in Pennsylvania, but Dad is still cold, so he wears the cap I bought him to keep his head warm. He reminds me of a lumberjack. ;)