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. ;)

Sunday, April 20, 2014

More, please?

My visit with Dad on Good Friday was really special. He was feeling good, his appetite was good, and he was very social. We had a lovely visit. Once again, though, he was cold. We had him bundled up with his hat on. He won't stop fidgeting with the hat, so it slowly works its way off his head. Ah well, the best laid plans....

One of the aides told me that the day before, Dad emerged from his room (which is right off of the dining area) and announced to the world, "I feel sexy!" One of the aides assured him that he was, indeed, looking good, lol. He does look awful cute in this photo, doesn't he? *big grin*

It's been a long while since Dad took any pleasure in his old standby: chocolate. He made up for it on Good Friday. He ate a package of Tastykakes (a long-time love of his) with, of course, chocolate milk. Must be the Easter bunny's influence. :)

P.S. Yes, he's got a bit of a shiner. I think he liked mine so much he got one for himself. Not sure how he got it. Memory Care staff thinks it's because he's been rubbing his eye, but that doesn't seem likely from the looks of it.

Saturday, April 12, 2014

Phone Calls, Pizza, and Music: a Good Day

Friday was pizza day in Memory Care. Dad surprised us by eating four slices of pizza, something he hasn't done in a very long time.

Just after eating, Dad was surprised by a phone call from his brother, John. The smile on his face was priceless.

Sis and I also took Dad his new iPod Shuffle and a new set of earphones. I had loaded up the Shuffle with a lot of Dad's favorite songs. We're hoping this will help the aides calm Dad down on those days when he is agitated and hyper.

We tried it out on him, and he seemed okay with it. I think there was just too much going on around us for him to concentrate. Plus, we were there so all he wanted to do was talk to us. :)

As time goes on, we'll see how he does with it. We've got our fingers crossed.

Saturday, March 29, 2014

They think I complain too much

Can someone tell me how to feel less? Care less?

They think I complain too much. All I care about is that Dad and the other residents at the home are taken care of with dignity and respect. At $5000-plus a month, is that too much too ask?

Apparently it is.

So, tell me, how do I learn to not care when:

  • his hair is sticking out in a million directions because it doesn't get combed
  • they don't shave him below the chin
  • they put oversized furniture in a common walkway that impedes wheelchairs and residents who use the hand rails to keep from falling
  • staff is constantly changing so the residents are deprived of one of the most important things dementia patients need: stability

I could go on but you get my point.

When I emailed my concerns about that large hutch in the hallway, they couldn't be bothered to acknowledge my email. Obviously, they do not share my concerns.

So, which of the others is also not important to my father's well being or safety? Which of those should I *not* be complaining about? I'm serious. Tell me. Because obviously I don't know: I think they're *all* important, to my Dad and to every other resident that is affected.

But . . . they think I complain too much.

Monday, March 10, 2014

Holding Hands

Dad's still looking pale and a bit gaunt to me, but he is eating well. Staff at the home say he's been getting more and more agitated lately, so it may be time to check his meds again. I hate it every time this happens, as I don't want to see him over-medicated. By the same token, I don't want him to unintentionally hurt himself or a staff member in a fit of anger. It's walking a very, very fine line.

I took him some lemon poppy seed loaf that I had made and he declared it "mighty fine." That and a glass of chocolate milk made him happy.

*Anything* with chocolate milk will make him happy. ;)

The other residents were "bowling" for their afternoon activity, but Dad declined an invitation to join in. He was content to just sit with me and occasionally hold my hand. I always take the opportunity to pass along some healing and loving Reiki energy to him when he does.

If you know an elderly person in a home, please, go and visit them. You don't have to say anything. Just hold their hand for a little while.

It will be enough, I promise.

Saturday, March 8, 2014

Then there are these moments

On my last visit:

"Dad, can I get you anything?"

"No, thank you. You're enough."

Slayed, right through the heart.

Saturday, March 1, 2014

Braving the Arctic Weather

I've mentioned before that Dad is having a hard time staying warm this winter. Since he can't have a heating pad or hot water bottle (it's too easy for sensitive, elderly skin to burn), I bought him a beanie, hoping that it might keep his head warm.

Took it to him on Friday and the reaction was mixed. At first, he wanted no part of it. But after I explained that it might keep him warmer, and he could even wear it to bed if he wanted, he seemed to reconsider. We'll see. Keep your fingers crossed!

Treading carefully, we are *not*
in the best of moods.

Dad wasn't in a good mood when I arrived on Friday. He was talking up a storm -- to no one in particular -- in the dining room. He was refusing to eat his lunch and seemed angry at someone, or perhaps the whole world, in general.

I let him know I was there and went to put my things away in his room. As I was walking away, I saw him lean towards the resident sitting next to him and say, "Mame {my Mother's nickname}, did you hear that? Cindy's here."

It made me smile and tear up at the same time.

But then, when I got back to his table and tried to encourage him to eat "just one more bite", he pushed me away and said, "I'll crush you right into the ground if you don't leave me alone." I believe he thought I was one of the aides at that point, but still, it stung a little bit. (And yes, I know "it's the disease talking, not him." Still, when it's *your* loved one, it stings.Trust me on that.)

I managed to get him to settle down and by the end of my visit that afternoon he was in a much better place. Even ate part of his lunch, though reluctantly. They tell me he ate a large breakfast, plus insisted on a snack and chocolate milk before lunch, so I'm guessing he just wasn't hungry.

When I left, I told him I'd see him soon.

"I sure hope so," he said.

"Wear your new hat, okay?" I said.

"We'll see if we can put that on the agenda," he said.

Any day you can leave laughing is a good day.

Nanook of the North, trying to  get warm.

Will he or won't he? He looks quite
dapper, though, doesn't he?

Saturday, February 8, 2014

What it must feel like to be a parent

To me, Dad is looking a bit gaunt and pale, but nobody else seems to see it. Perhaps I'm just being overprotective, given what he went through recently at the ER. It worries me, though.

During this visit, he couldn't get warm enough, so we piled on the jacket and a blanket. This being cold *is* very normal for Dad. He's always cold. But I worry that perhaps he's also getting sick.

Do I seem to be worrying a lot? I think I am. Events like what happened on 1/21, when Dad was sent to the ER and family wasn't notified, remind me once again of how fragile our seniors are, and how dependent they (and their families) are on others to take care of them.

This must be what it feels like to be a parent.

With the lack of federal oversight on personal care homes, it doesn't seem to me that the states are doing a good job of taking care of our elderly, especially those with advanced forms of dementia. I hope that this starts to change soon, before the millions of baby boomers who will suffer from dementia start requiring care.

Wednesday, January 22, 2014

How does this happen?

Still reeling from this:

Most personal care homes don't have the staff to send someone along with a resident when the resident needs to go to the hospital. (Which I totally don't understand. When you send a dementia patient to the hospital, how are they supposed to answer questions about how they were hurt? Or where they hurt? Or when their birth date is? Or what types of medications they take? The answer: they CAN'T!) So, hospital staff is left trying to figure out things with the limited information they receive from the EMTs who transport the resident.

Families, then, are totally dependent on the home's staff to notify them a) that a resident has been hurt, and 2) that they have gone to the hospital ER.

Perhaps some families don't care. Perhaps they let their loved ones go through these ordeals alone. I don't know. But I do know that my sister and I DO care, and the thought of my father being alone in a strange, bewildering place that is noisy, and crowded, with people who don't know him, possibly don't even know that he has dementia, is unconscionable. Just the thought of it is enough to bring me to tears.

Yet, it happened.

Yesterday, around 4:30 p.m., my father evidently fell in the Memory Care unit. Because he hit his head and was bleeding a bit, they had to send him to the ER to be checked out.

Guess what time they called to inform us that Dad was in the ER?

Answer: they didn't.

Let me repeat that.

No one called.

Around 10 p.m., one of the night staff called my sister to ask how Dad was doing since he wasn't back from the hospital yet. And that's how we discovered Dad was in the ER.

When my sister frantically called the ER, she found out that Dad was being discharged and would soon be transported back to the home.

For six hours, my father was alone in the ER, with no one to comfort him, or keep him from being unduly afraid, or to explain to him what was going on. No one.

Fortunately, my father seems to be okay. But what if something had happened in that ER? What if it had been much more serious, and my sister and I were unable to be at his side because no one friggin' called to say, "Oh, by the way, your Dad fell and is in the hospital."

I can't even begin to tell you how upsetting this is. When we visited Dad today, all we could think about was what if something had happened to him and at least one of us hadn't been there.

I feel like I've had all the air sucked out of my body. This is so wrong.

Tuesday, January 21, 2014

With nine you get a baseball team

On a recent visit with Dad, we spent a lot of time talking about family. Dad kept trying to remember the names of his siblings, and with eight of them, that's not easy to do -- even without dementia!

At one point, I asked him what kind of games they played as kids, and whether they ever played baseball. Witty as ever, he responded that with nine of them, they never had to go looking for people to make up a team.

Note to my Wills family members: this is worth watching till the end to see what he says when I ask him his father's name. So cute.


Saturday, January 11, 2014

Got Milk?

Me, Dad, big Sis
Friday was pizza and chocolate milk day again in Memory Care. (These pizza days seem to come around a lot faster than once a month!). Very happy to say that Dad was in a great mood and cracking jokes. Sis and I had a lovely visit with him.

It seems all we have to do most days is bring Dad chocolate milk and he is happy. Friday, just as if he were drinking a fine wine, he pronounced his chocolate milk perfectly chilled. (Sounded like a commercial: We will drink no chocolate milk before it's time. *grin*)

His eyes are still bothering him, as you'll see in the video, but it's impossible to keep him from rubbing them. The medication the doctor gave him some weeks ago doesn't seem to help much.

In the midst of our lovely visit, Dad went to drink his milk and suddenly seemed unable to do it. He looked at the cup in his hand for a while, tried to remove a lid that wasn't there, then brought it close to his face, but tried to put it to his chin, then his cheek. I had to gently guide his hand until the cup was at his mouth, then tip it up for him. After that, he seemed to catch on. Alzheimer's doesn't let you forget for a minute that it is always present, always lurking.

Still, Dad had a really good day, and for that, we are thankful.

 The following tale is entitled, "A Man and His (Chocolate) Milk":