Monthly Archives: December 2012

Getting the Belt

As a kid the worst thing to hear dad say is, “I’m getting the belt”  I don’t think dad ever used it.  I do remember him grabbing it and snapping it a few times.  Boy, that would get my sister and I to shape up quick.

Yesterday the PT gave me a gait belt to help keep Gpa on his feet.  Oh, what a big help something so simple is.  My back is so happy.

So in the middle of the night when Gpa got up and was so wet.  I told him, “I’m getting the belt.”  I had to smile because it means something completely different.

I wonder if his dad ever said he was going to get the belt?

We’ll never know.

Holding a Grudge

I have learned a long time ago that holding a grudge hurts the one that is doing the holding.

My dad was mad at his dad for a long time.  His dad died before I was born and it wasn’t until I was an adult that I found out the issues at home weren’t my doing.

There is a family member who has been upset with Gpa since we were kids.  When he first got diagnosed, I told her now is the time to clear the air.  But she hasn’t and she brought up the story again during the holidays.

That’s a long time.

I’m not going to hold a grudge against my friend, but  I am going to set some boundaries.

Exit Strategies

A person I know came over the other day unannounced.  I have unfriended her from Facebook and do not return calls or text messages any longer.

I guess I shouldn’t have been surprised that she showed up.  She was lucky I was home.  Usually I am at watercolor but I was finishing up a Christmas present.

I was not dressed, I was not washed.  I don’t remember the state of the house.

If I hadn’t thought it was my daughter home making  the dogs go nuts, I might not have opened the door.

She came with dinner.  It was just 4pm.  I needed to go pick up Gpa.

I ate a plate and let her catch up on all she is doing.  When she found out I had plans that night, she offered to watch Gpa.  There is no way I’m letting her stay at my house by herself.  And Gpa needs more care than I am comfortable letting her be responsible for.

She had a card for me, it is from the sister of one of her friends.  It is about exit strategies.

Does the rudeness never stop?

This is why I’m not speaking to her any longer.  She insists on talking about Gpa’s death.  I know he’s dying.  I see him slipping away a little more every day.  But be careful if you play the ‘Grab Your Finger” game.  He still has a strong grip.

Last time we talked on the phone she told me, “He’s not always going to be here you know.”  She’s lucky I didn’t hang up on her.

So I looked up the site.  There’s a couple of other people’s stories, in 20 words or less and a forum you can sign up for.

No, thank you.

This is one of the ways this disease is not like having a baby.  You know that sometime within the year of finding out you are pregnant, you will have a baby.  All things being equal.  I know not all babies are born.  And I’m sorry for that.  The longest I’ve heard a pregnancy being is 10 months.

The average for a person diagnosed with dementia after age 90 is 4.5 years.  It’s a good thing we don’t have to wait that long for a baby to arrive.

In a couple of weeks we will be celebrating Gpa’s 6th anniversary.  And with the grip he has, I don’t think he’s leaving anytime soon.

That being said.  I know it is sooner rather than later.  He’s having a hard time bending his knees.

Earlier today, he had gotten himself on the floor.  As I was trying to help him up, I realized he wasn’t able to brace his feet and push against the floor to give us the inch we needed to get him on the chair.

So I laid us across the bed.  “No, no, no, not the bed.”

“I know, but this is the best I could do by myself.”

From there we got to the bedside commode and from there to the wheel chair.  It has a gel cushion that adds 4 inches or more.  Next time he’s on the floor, I’m taking the cushion off to have a better chance of getting him in the chair.

My exit strategy is to learn to be in this moment now.  Enjoy the time we have.  Be glad he is here and call 9-1-1 when the time comes, but not before.


Christmas Carol

When I was younger, I thought that Tiny Tim was asking everyone to bless him and his family.  I wondered, could you do that?

I guess so, for here it is.

It was not until much later that I realized he was asking God to bless everyone, giving Scrooge a chance.

Even a small, simple prayer has a great impact, more than we can realize.

Monday we received word that a dear friend was in the hospital.  I asked Gpa if he wanted to pray that she would be all right.  He nodded.

That was all, a nod.  That was good enough for me.  And later we found out she was released and home for Christmas.

So for this holiday season, Gpa and I say, “God bless us, everyone!”  May the New Year bring you all your hopes and dreams.

A Good Cry

Having the hospital bed has made some things easier and some things harder.

Gpa stays in bed all night long.  I don’t have to lift so much to get him in and out of bed. I can get him to change positions to allow his bed sore to start to heal.

It needs a different size sheet that I don’t have, so there is more bunching and more things get wet.  When this happens, I just change him in the room rather than taking him to the bathroom.

He is stiffer in the morning and had a hard time using his arms to feed himself this morning.

I cried all the way through church.  Mourning the loss of Gpa.  Silly girl, he’s sitting right next to you.  Yes, but this is a letting go, a bit at a time, and I let go a little bit.

He’s been as hungry as a bear and today he was as hungry as a pig. I’m not sure if one is hungrier than the other but he eats a lot.

I don’t think his body is processing much of what he eats,  he’s just skin and bones.

After church, which included lunch and a visit from Santa, we went home and took a nap.

After a good cry and a good nap, I feel better.

Tomorrow we will celebrate Christmas with family coming over.

Today Nietzsche was Wrong

Nietzsche has been quoted to say, “That which does not kill us makes us stronger. ”

This morning, I wasn’t stronger, I became my baser self.

Gpa went into the bathroom, so I followed and started to help him. He was in the middle of pooping.  So there he is standing in the bathroom, hanging onto the towel rack, pooping.  Gravity was doing a swell job and poop was landing on his pants, shoes and floor.

I started yelling at him to sit down and tried to guide him to the toilet.  Gpa did not let go and the towel rack came with him.

I am so glad no one was hurt. I’ve been trying to get a real grab bar added to the order for the hospital bed.  Towel racks are not made for bearing a person’s weight.

He’s happy when he has a cookie, a coffee or a ride.  He is not happy when he is in the bathroom and I am yelling at him.  He isn’t aware of the poop.  He tells me he is never coming back here again.

I am not physically stronger.  Taking care of Gpa has thrown my back out of whack.

I am not spiritually stronger.  It is torture to watch Gpa slowly deteriorate.  He has a bed sore, a sore on the toe of one foot and two toes on his other foot is purple.

I am not mentally stronger.  I am drained.

I am going to bed now.  Hopefully, we’ll feel better in the morning.

We’ll see.

A Moment with my Violin

I have been playing my violin.  It is giving me great solace.  And I’ve mostly been playing open strings.

I’m learning pizzicato and bowing.  It is not an easy instrument to play.  It is not something to rush.

I have discovered that if I take a breath and really pay attention to what I am doing, a beautiful sound comes out of the instrument.

And that makes me smile.

Not all the sounds are nice.  I do make some screeches and squalls.  However, I am learning and I am letting myself stop and self correct.

When I was younger, my parents were so worried about my being tone deaf that my mother would call from the kitchen when I made an error while practicing the piano.

Most of the time when she did this, I already knew it was a mistake.  It could have been my fingers were still not sure of what key to hit.  It could have been I was rushing and missed.  But before I could correct, I was being told I made a mistake.

And now, I am letting myself make some mistakes on the violin, so that I will have the pleasure of making the beautiful sounds.

As I learn where to put my fingers to play the other notes, I know there will be more  self correcting in the next few days and weeks. And it will be well worth the effort.

It already has brought great satisfaction, comfort and joy.

The Thing About Averages

A lot of people put a lot of stock into the average of anything.  But usually the  type of average isn’t mentioned nor the delta.

I looked up the average life expectancy for a dementia patient earlier tonight.

For a man over 90, it is 4.5 years.

Gpa has already surpassed that number.

In January 2013, he will have lived with Dementia for 6 years.

Yay, Gpa!

But that means someone else died within the first year or so after diagnosis.

The average sets up an expectation.  So for the family that lost their loved one after a year or two, the loss would have been more of a shock.  They were planning on more time.

For us, some care givers have already given up on Gpa.  The last dementia care home I had him in wanted to put him on Hospice a few months before he was 99.  It did not make sense to me to put a man who was walking and talking and feeding himself on Hospice.

The reply was, “He’s 100 and losing weight.”

I didn’t put him on Hospice, I quit my job and brought him home.

My back hurts and I’m so tired I don’t know if I left the front door wide open while we were at church or if I opened the door when we got home and went back to the car Gpa.  (Nothing was missing so I guess it doesn’t matter.)  I get so frustrated, I yell more than I would like.

However, I will never regret this time I took to be with Gpa.

A Simple Request

When Gpa was in the hospital, they were able to keep him in the bed by raising his legs higher than his head.

Since Gpa has been falling when he tries to get out of bed, I asked the doctor for a hospital bed.  He agreed.

Monday, the home health nurse came and assessed what we needed.

We agreed, a hospital bed, a tub bench, a gel cushion, and I thought a grab bar.

Someone called to confirm: a hospital bed overlay, did I have a hospital bed?


It sounded like she changed the order.  Told me that insurance won’t pay for the bench, did I want it?  I asked for the dimensions before I decide.  I don’t want to spend the money if it doesn’t fit.

And the gel cushion.  After we got off the phone, I realized she didn’t say grab bar.  I’ll have to mention it when they call back.

We are using the towel rack and it was not made to have someone hold on to it with full weight.  It looks like an accident waiting to happen.

Tues as I was getting ready to leave for juggling practice, an aide called. Her GPS couldn’t get her to the house.  She was on her way now!  She had me stay on the phone until she got to the house.  I had to one handed pick up.

She wanted to bathe Gpa but we didn’t have the bench.  So she changed him for me.  That was weird.

She was supposed to be back on Thursday but she didn’t pick up when I called to tell her I was running late from picking up Gpa from Daycare.  She has not returned my call either.

Friday morning a physical therapist came to check out Gpa.  She asked what the goal was.  Had Gpa do some movement.  The only thing he couldn’t do was put his hands behind his back.  Oh and he has a bit of trouble bending his ankles.

Saturday, a social services case worker came out.  As he was interviewing us, he asked what he was doing there.  It sounds like Gpa’s needs are being met.

I said all of this started when I asked for a hospital bed.  He said he’d follow-up with the nurse that came out on Monday.

My daughter asked me why I didn’t just put the bed on the floor.  Mostly because it will be harder for me to get him in his chair.  My back is not happy with me at all.

Well last night, he kept saying he had to get up and then when I told him I’d help him, he slipped out of bed onto the floor!

So I put the bed on the floor. He couldn’t get up!  I was able to get 4 hours sleep.

I will be happy to tell my daughter that she was right!



1:30 a.m. Barber Shop

I am not a good barber.  Gpa complains when being shaved, so I stopped.  This is probably the first time he’s ever had facial hair.

No I take that back.  I found some old pictures where he had a mustache.  Weird.

I’ve let his beard alone so long, he’s beginning to look like a skinny Santa.

I’ve also been meaning to soak his feet.   He’s got stuff between his toes and his feet are swollen from lack of circulation.  They just look like they’d like a good soak.

The other night, he kept saying he wanted to get up.  Ralph had come to see him.  Ralph comes a lot so I would just pat his arm and say in a little bit, we’ll get up.

Then he said, “There’s Eula! Hello, Eula!”  Eula is his baby sister.

I’ve heard of family members who have passed coming for a loved one.  Gpa reported that Gma said, “There’s Poppa!”  Later we found out that is what she called her father.

It felt strange to have the room filling up with people who have gone on.

Then I thought about his face and feet.  So I got him up and gave him a trim.  He looks so much better.  Not the best as that would have him clean-shaven.

Then I got a bucket and filled it with warm water.  I had to get a towel and while I was gone, Gpa had had a great time splashing his feet in the water.

Water was everywhere .  I had to change his pants,  they were drenched.

He was so happy.

Ralph came again last night but not Eula.

So maybe its just his dementia.