Tag Archives: dementia

On Still Alice

I watched Still Alice last night. It came out in 2014.

Gpa died in 2013.

It has taken this long for me to be brave enough to watch the movie. I’m glad I did.

Everyone did a fantastic job. All the emotions and struggles we went through were on the screen. And the joy’s. The years I cared for my grandfather will always have a special place in my heart.

Each day was a precious gift where I spent my time in the moment, in his reality and I lived to see the twinkle in his eye as he interacted with me and other people I brought along on our journey.

Not only do I miss him, but those who met him as he slipped away. They too mention of the loss of the delight of who Gpa was even as he became more and more child like.

It’s hard to imagine that it’s been 3 years since he died. As the days go by, I feel the memories slipping away, anchored in place in the moments they happened.

But as I reflect on Still Alice, I think about the going forward. There will be a day in the future. Where we will meet again and that thought takes a bit of the edge off of stepping away from the years Gpa and I had a grand adventure.

Until we meet again, I’ll have to gather other’s who will venture forth on this crazy ride called life. Thank you for letting me share.

Celebrating at JJs

Celebrating at JJs

Boulders in Life

When Gpa was first diagnosed with dementia, a co-worker told me about a pastoral counselor that was helping her family.  I went and she was great.

After sharing my experience and frustration, the counselor observed that it was like I was told to push against a large rock and I thought it meant to move the rock.  But this rock was so large it would be impossible to move.

This insight helped me tremendously then and even now.  When I get frustrated with the way life is going, I stop and ask myself if I am trying to move a rock that won’t.

This weekend I went on a women’s retreat and had a chance to walk a labyrinth. The path weaves back and forth making a circle, doubling back several times, making a lovely Celtic pattern.  Though in life it isn’t as much fun doubling back time and again.

However, later, I had a thought about that rock. The one I tried to move by pushing.  The thought is this, maybe I am just supposed to stand next to the rock.

Just stand next to the rock.

Just stand.

The Rock and I

When Gpa got diagnosed with dementia, a co-worker told me about some pastoral counseling near by.

I started meeting with the counselor every other week.  It helped tremendously.

Once after I had shared a bit, she remarked, it was like God had told me to push against a huge boulder and I was getting upset because I wasn’t moving the boulder.

Oh.

Maybe he just wants me to build up my muscles.

Oh.

That helped.  Though I didn’t like pushing against the boulder.  Watching Gpa diminish was one of the hardest things I’ve ever done.

In the last 2 months I’ve lost 2 people I care for and I’ve been thinking about that boulder.

There is nothing I can do to prevent death, it’s a part of life.  There is nothing I can do to change what has happened.

However, I don’t think God told me to push on the rock.  The rock just happens to be a part of my path. It is what it is.  I’m going to stop pushing against the rock and just stand next to it awhile.

I’ll let it be what it is and I’ll be what I am.

Clinical Lying

I hate the term – Clinical Lying. Mostly because it has negative connotations. There is a certain resistance to lying to a loved one.  And yet, it isn’t lying at all.

It’s a form of going down memory lane.  Who doesn’t like to sit and reminisce the good old days?  It’s hard when a loved one doesn’t realize where they are right now, but where they are is someplace they have been before.

That’s a memory, not a lie.

Gpa grew up in Kansas.  As a weatherman, he moved all over the United States and retired in Ft. Worth.  When he would ask me if we were in Kansas, I would say “yes.”  Sometimes he’d ask about Ft. Worth.

When I did say “no”, it would confuse him and my explanation only confused him more.  No need to go there.

Kansas and Ft. Worth aren’t such bad places to be.

If he wasn’t tapping into a memory, he’d be asking me if we were on Mars or someplace he had never been.

And even then, I wouldn’t have considered it a lie.  I would have considered it imagination.

A friend who is currently caring for her father pointed out a good thing about the condition of dementia.  Her father is always excited to see her.  Every time. She’ll be pushing him in his wheelchair and look around to check on him.

“Oh, hello! Good to see you.”

I’d have to say that I liked that part of spending time with Gpa as well.  Who doesn’t like to be greeted like a long lost loved one?

A Sparkle for a Couple of Pretty Ladies

Carl comes to the garden with his daughter.  They are in a similar situation that Gpa and I were in.  She was worried when I gave her some of Gpa’s clothes, that it would hurt to see Carl in them.

“Oh, no! Quite the contrary.  It will do me good to see someone else making use of his things.”

He has recently broken his hip and they had to buy a wheel chair.  If we hadn’t been renting ours, I would have given them that as well.

Yesterday, I ran up to the garden to have lunch.  Boy, do I love working from home!

We were wrapping up when Carl and his daughter came in.  He sat across from me and I waited until he looked up.

When he did, I gave him a big smile.  He does remind me of Gpa, and then again he doesn’t.  He is his own person and a delight to be around.  He saw my smile and shyly smiled back and ducked his head.  Then he looked at Becky and she gave him a big smile, too.  And boy did his eyes twinkle!

His daughter told him Becky had asked him a question.  We both told her that he responded.

The best things in life can be had when we stop and be with each other.  As far as I’m concerned, a sparkle from the eye is better than many diamonds.

 

Halved Horse Blanket

There is an old folk tale where a man asks his father to let him have the farm now and not wait until the old man dies.  Especially since the older man was getting too feeble to work the land.

The old man loves his son so much he agrees.

The son then tells his father to sleep in the barn.  The old man complies and goes to the barn.  After the old man leaves, the weather turns cold.  The son tells his son, go take a horse blanket to the barn.

The son cuts the blanket in half.  The father asks, “What are you doing?”  The boy replies, “I’m cutting it in half so you can have something to keep you warm when you are old.”

I am concerned that if we are not careful we as a society will make choices like the man responding to the age of his father.   Especially as the need increases.  Who will be caring for the elderly?

Gpa has had some great care givers and he’s had some that I suspected of abuse.  What happens to the people who don’t have an advocate? Who will be their voice? Especially those who have Alzheimer’s or dementia and cannot advocate for themselves?

Will we seek a full solution or will we slap a half-hearted, half-baked, half-horse blanket on it and be done?

One Size Does Not Fit All

Not all situations are the same.  So one solution isn’t enough.

People are individuals and want different things.

Just because retirement age has been set to 65 does not mean all people retire at 65.    Some look forward to early retirement.  Some enjoy what they do and choose to continue working.

My dad was still working at 67 when he passed away.  Boy, was that a mess with the insurance companies.  I had correctly filed primary and secondary.  Then someone calculated his age and didn’t tell me why they thought I had filed wrong.  I would have told him he was still employed if they had told me.

So I re-file.  Then someone else asks, “wasn’t he employed at the time of his death?”

‘Yes”

So I got to refile the refiling!

As far as I know, Gpa retired at 65.  He continued to be productive.

Gpa drove his car until he was 97.

Even with dementia, he was able to interact and endear himself to others.

Yet st 99, even though he was walking and talking and feeding himself, someone wanted to put him on hospice!

Let’s not get caught up on numbers.  Let’s not force people to do

 

A Hero’s Journey

I am listening to a book on tape.  “A hero’s journey’ has been mentioned a couple of times.  I think that if you ask the hero when he/she started out, maybe even when they are done, they never felt like a hero.

They just did the next thing that needed to be done.

When Gpa first got diagnosed with dementia, a friend told me about a family counselor that was free.  So I’d go on my lunch hour.  Oh how I needed this.  But then the woman got promoted and I graduated me.  Said I wold be fine and really I was doing much better than most of her clients.  I felt fired.

Once when I was there telling her of the struggle, she asked, what if God were just asking you to push the obstacle but was not expecting you to move it? Well, that would be something then.  I could just stand their and push and not be frustrated that I wasn’t getting anywhere.

My daughter tells me that when Gpa and I fell, I yelled, “Why is this so hard”  I had thought I just thought it at God.  But that is what got my daughter in the room to help us up.

I’m thinking maybe it’s been hard pushing so long because the sign says pull.

And I’m going to have to go through the door without him.

A Change of Plans

Yesterday the following is what I wrote down to get done:

Hospice 10ish
Library
Hair cut 1
? truck
practice music
look up about copyright

The only thing that got done was practice music.

It had snowed in the night and there was 2 inches in the back yard.  It was funny to see  the dogs reaction.

Because of the snow, hospice called and asked if they could come at 11.  Sure, we weren’t going anywhere.

Because of the snow, the stylist asked if we could move the hair appointment to Wednesday.  My daughter said, I could also see about a different day.  So I said I would wait and call to reschedule, if that was OK with the stylist.

Because the truck wasn’t ready, we didn’t pick it up.

I cleaned off the car because I didn’t yet know we wouldn’t be leaving the house, started laundry and gathered my music to play for Gpa.

I changed him and shifted his position.  Got settled myself and began to play.

I played, “In the Garden”, an admitted favorite.  Then went on to other church songs that he grew up with.  I finished with songs the band I’m in has written and plans to record next month.

I was playing the ukulele and had planned to practice the violin next.  I looked over and Gpa wasn’t breathing.  Or was he?  I had put him in plaid pajamas and couldn’t tell if it was the look of the pattern or if he was breathing very shallow.

I went to ask my daughter if she thought we should wait for hospice.  She asked about his pulse.  Oh, yeah, I had forgotten we can check that.

No, no pulse.

I called hospice and they asked if I called 9-1-1.  No, I wanted to know if they still wanted to come out.  No, they said to call 9-1-1, so that if they could do something to revive him, they could.  I replied that he has a DNR.

She had never had this happen before so she put me on hold to discuss with her supervisor.  I’m not surprised,  Gpa is a one of a kind type of guy.

She said to call 9-1-1.

And the rest of the day was filled with taking care of Gpa, then talking about Gpa.

Not that Last Ride

Last Wednesday, I had decided that it would be the last time Gpa went to daycare.  He had gotten to the point he could not stand on his own.

It was a cold and rainy day.  I almost said never mind and kept him home.  But I had a couple of things I needed to get done before becoming housebound.  And I had made plans to have lunch with a friend that I didn’t want to miss.

On the way to daycare, I was sad that this would be his last ride.  He loves them so much.

But I was wrong.  It wasn’t his last ride. On Friday, a beautiful sunny day.  Thank you Texas weather! My daughter needed a ride to her car.  I told her I could do it if she helped me put Gpa in the car.  She asked what about when we got home as she would go to work after dropping her car at the shop.

I told her that I can get him out of the car better than I can get him in the car.  As it worked out the home health nurse wanted to meet about that time and she helped me get him out of the car.

The nurse had the “H” word talk with me. So over the weekend I looked up a few hospice companies and one is coming tomorrow.

In the mean time, the truck is still not fixed and my daughter loaded up Gpa into the car yesterday and we had another lovely ride.  Sure he slept through it but he’s been doing that lately.  It was nice to be able to give him another ride.

But I don’t know it I’ll learn not to say this is the last time for …. or not, we’ll see.