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Caregiver: Entertainment Engineer, Snot Cop

Wednesday, October 18, 2017

This week the Divas and Princes asked me about the specifics.  They want to be ready when their time to deal with incontinence arrives.  It will come. I was going to include instructions and tips here in this post.  But I have decided to create a separate post entitled Dementia Doodoo Diva.  What do you think?

Instead I will talk about keeping George active and trying to satisfy his "go and do" urge.  This "go and do" need is something that is not uncommon among persons with dementia.

In our support group there are persons with dementia that want to go and do and there are persons with dementia that don't want to go anywhere or do anything.  I am lucky that George wants to go and do.   Though sometimes it drives me nuts that he sometimes just can't sit and do nothing, I would much rather he want to go so that I can go.

Since we returned from our Hurricane IRMA escape trip we have biked and walked and visited folks and gone to meetings and parks.

We continue to ride bike.  George seems to still enjoy it.  He gets the bikes out and is anxious to go.  Folks that know George from his days at the Floral City bike shop or on the trail chatting with folks will yell out, "Hi George!" as they pass.  He waves at everyone.

When we ride, he keeps up sometimes, and sometimes he lags behind and I have to turn around or stop to wait for him.  Many Tuesdays and Thursdays for 1/2 the ride, our friend Zip rides with George so I can enjoy the ride without having to watch my rear-view mirror.

Most of the time George doesn't shift gears on the trike in preparing to stop or climb a hill.   I asked at the bike shop about an automatic shifter....  They can't put one on his current trike.  So I would have to buy a new one.  $7,000 for the trike and shift package!   Oh my!  I guess I will just keep trying to help him shift at the intersections.  Or maybe I will send him to adult day care once in a while so I can ride longer and faster.  It will take a lot of day care to use up $7,000!

The worry is that crossing intersections he can be very very sloooow.  I and others are telling him, "Pedal George, Pedal!"  But he is usually in the wrong gear and pedals verrrry slooooow.  I tell myself that if he gets hit, it's a better way to go than this slow fade he is living through.  But of course it would be tragic and it might not kill him, just hurt him.  That isn't good.

So if anyone one out there knows of a cheaper solution to the shifting problem, let me know.  I though about a tandem trike.  Those are way expensive also.

****************

Though we came out without damage to our home from Hurricane Irma, our next door neighbors had a tree land on their roof causing the tiles to break.

I was supposed to be watching over their house and I somehow felt like a bit of a failure.  Before they arrived home, George and I scooped up the debris.


RESPITE

On Tuesday and Thursday afternoons I have a woman coming in to provide respite care.   Her name is Jean. Jean is pleasant and positive and we like her.

Jean isn't as fit as George and so when she takes him for a walk she thinks going around the block is a long way.

Next time she comes I am going to give her better instructions on how to deal with George's toilet.  The last two times I got home from my time away and George had pooh in his disposable diaper/pants.

She asks him if he wants help and he refuses.  I will instruct her in how to do it in a take-charge matter-of-fact way.  "Let's go into the bathroom and clean you up."  

What do I do with my respite time?  I often feel I need to get as much into and out of these hours as I can.  So I feel a little pressure to use that time wisely.

The fall has been VERY hot.  During respite time I have to find indoor places to hang out away from the heat.

Often times I have taken my computer over to the neighborhood clubhouse.  I spent $400 on the course to get re-certified as a fitness instructor, personal trainer, senior fitness specialist.  But so far I haven't gotten through much of the training materials.  Sometimes I do that during respite or while George is watching movies.  It isn't so much time chunks as it is priorities and energy and drive.




Some of my fellow Dementia Divas stay home while their relief help is in the house.  I do my banking online at home but then I want to get away so I don't hear it.  I am always listening for his movements and his needs.  I want to be able to shut down that part of my brain for a little while.

Activities for me during Respite include:
Socializing with friends
Time in the Gym lifting weights
Walking (though in the heat that wasn't an option)
Blogging
Catching up on calls and emails and paperwork
Getting my hair cut or nails done
shopping

Activities for George:
Movies
Going places (with me)
Eating
24 piece puzzles
coloring
sorting different colored poker chips, cards, things
sorting coins
build wooden block towers
walking (with me or Jean)
Yoga (with me)
Exercises (with me)
Visiting others who are home-bound (with me)
Sometimes Glen comes and takes George to the bike shop or the hardware store with him

We just went to a social gathering and there was food out.  I handed George the pistachios and he was content to shell them and eat them.  I didn't think about that.  Maybe I can buy a big bag and have him shell nuts.  It is also an activity for him while everyone else is chatting.  He wasn't grabbing so much to eat when he had the nuts to shell.  Cool!

The other day when I picked him up from day care he was working with one of those kindergarten toys.  Oversized screws and nuts of different sizes and colors.  Putting the nuts onto the bolts.

Jodie tried to interest him in one of those boards with different latches and locks.  It didn't seem to keep his interest long.  But maybe we can watch the thrift shop for toy tools that work.

Someone suggested stringing Cheerios for the birds.  I got the Cheerios, then we ate them. I never got the string and big needle.

He used to play games on his ipad.  But now, even easy ones have things that pop up that get him off in other places on the internet.

This week he turned 70.  He got a lot of wonderful greetings on Facebook.  Since he never looks on Facebook, it was time for me to end his account.  They only offer the option to delete it if he is dead.  So I said he was dead.


A BIT BONKERS

I think I am going a bit crazy.  I mean I would never have spent money before on getting my nails done.  The nails is another sign I am going a bit toward the nutty side of the sliding scale.  But my nails were breaking easy and with all the rag squeezing and butt cleaning I didn't want to deal with breaking nails and such.

Which reminds me.  I removed my wedding ring the other day.  While squeezing a rag I gouge a knuckle yet again.  Enough, I don't want open wounds on my hands with the stuff I get into.

Another sign I am not acting logically... today I signed us up for a fundraising walk for an organization that helps caregivers by giving them small grants to pay for respite care.  The fundraising walk cost us $50, almost the cost of a full day of day care.

And the other day I sat eating cookies while reading instructions from my doctor on how to lose weight.

I don't mind being a bit off center.  It gives me permission to do stuff differently... maybe with a bit more pizazz.

I was commiserating with a fellow Dementia Diva about worrying about the money lasting until we women die.  Then I told her my sister said, "Don't worry, it is only money." and "It will all work out just fine."

I said, "well, maybe I will get dementia and it won't matter." 

She responded: "You are my sunshine - such a kick! 

So the light at the end of the tunnel - could be the darn train!!"

It is great to have these fellow caretakers sharing their journeys with us.

And the folks with dementia too, sharing their experiences.  Herb Terry had an article on the front page of the Citrus Chronicle (local newspaper) about his experience with dementia.  It really hit me how very aware he is of what is happening to him.




George isn't very verbal, so the only clue we have that he is aware is his teary laugh and his self-introduction, "I have dementia."


MORE HAPPENINGS

It only took a couple weeks after our return before the piles of brush from the downed trees and limbs were removed from the sides of the road.

Our biking friend, Zip, continues to volunteer to ride with George on our bike rides so that I can zip ahead if I feel like that.


We walked around Cooter Pond by downtown Inverness to see if the water level was up after Hurricane IRMA.  I was amazed at the amount of vegetation that had grown since we had last walked there.

I drive us closer to the pond.  We used to walk the three miles round trip from home, but now that is too far for George with out lots of long bench sits... which drive him nuts..."ready to go?" he says over and over.
Our friend, Regis, had given George a coloring book of hot cars.  George seems to enjoy coloring them which keeps him occupied while I cook or make calls.  He says, "See?"  and then "See?"  and then "See?"  and each time I try to come up with an original comment in return.

"Wow, look at that!", I say.  "What kind of car is that?"  I ask.  "Is that my car?"


After returning from our IRMA escape trip, we looked forward to breakfasts with our bike group.  They greeted us warmly.  We are so blessed with their on-going acceptance and inclusion.  One of the hazards for caregivers and those with dementia is social isolation.  Not for us!  Thanks to George's smiles and quiet, cooperative demeanor and their love.  Thank you!


After breakfast one Saturday we biked south on the trail with Debra and Glen.  We saw hundreds of tiny frogs jumping on the trail.  Debra and I winced as we rode through...  we didn't want to squish them.


We stopped at Townsend park to see how high the water had risen.  It was interesting, Hurricane IRMA came through weeks ago and yet the river just peaked a few days before in this area and will peak a few days after this picture further down stream.  Some people in neighborhoods along the river are still wading and boating to reach their homes.


I was glad to see that our favorite tree in Townsend Park was still standing, and there is an old oak nearby that survived the storm also.

On our way back to town, George and I turned off onto the ramp that would take us up to 44 and the sidewalk to Winn Dixie.  The ramp had not been cleared yet.   I stopped and tried to pull things off the trail, but all I did was gain an appreciation for the volunteers and staff that did all the work to clear branches entangled with vines all along the trail and roads in Citrus County.

On Sunday the drum circle was going on at Fort Island Beach (on the Gulf near Crystal River).   I picked up our friend, Jerry, that loves these things and we went to do a little drumming and dancing on the beach.

Some people are dressed in costumes and belly dancing outfits.

I was surprised when we arrived to see one of the Dementia Divas and her prince enjoying the music.





George likes to watch movies on the big screen.  I don't have headphones that work with our big dumb TV.  The noise makes it hard for me to concentrate on tasks I want to attend to.  So sometimes I bring George into the den with me and use the headphones with his ipad.  Nice and quiet.  At least until his movie ends... or messes up... or loses his attention.
One of the people renting a bedroom from us got sick and had to return to her Parents home.  The day she moved her things out she left me a beautiful bouquet of flowers and a thank you card.  Thank you Lydia!
 


I decided to leave that bedroom open for a few months because I want it available for family and friends that are coming to visit this fall and winter.  George's daughter is coming to visit for a couple weeks so she can assist me in caring for George.  I am looking forward to having some time to sort through some stuff and clean and organize the garage and attic and closets.

Debra and Glen drove us to the Villages for dinner and dancing on the square.  The music was by The Clint Barrio Band.  They were awesome. After we got home Debra investigated and found out they were playing again in the Villages on November 25th.  We made plans to go see them again.

George's daughter, Jodie, will be visiting then and we will take her along.  She can help watch George and dance with him too.

While we were at The Villages and I was up dancing without George, I had to keep one eye on George.  He got up a couple times and started walking away, attracted by the vendor booths around the square.  I took him for a stroll then around to see the vendors.  I thought it would satisfy him.  One of the vendors was selling belts and it just so happened that George had just outgrown his belt.  So I got him a new one that should grow and shrink with him.  He has grown from a 28 waist to a 34 waist.  As he grows I put his old shorts in a pile in his closet.  He will someday not eat so well. and his waistline will shrink again.




SNOT COP

I have become the snot cop.  Watching for the dribble and the dangle so I can remind him to blow his nose or catch it with something myself.  This is another milestone that I have to wrap my mind and heart around.  My old man with a snot dangle, oh my.  Poor George, losing more and more of himself.

He usually dribbles in the morning at breakfast.  I am thinking I will get tissues and keep them close to the dining table.

He used to have a very distinct sound when he blew his nose.  If I lost him in a store or a crowd it wasn't for long.  He would blow his nose and I knew which way to go find him.  Now his blow is quiet.

I have a theory on the nose drip.  The runny nose is because he has this forest in his nostrils that collect the moisture from his lungs until it can't hold anymore and it drips out.   He has slept all night without blowing his nose, so he drips in the morning.

Sometimes during the day I have to remind him to blow his nose.  If he is real foggy I hold the hanky to his nose and tell him to blow... no horn blow now.  

POOP POLICE

Oh my!  My sense of smell is playing tricks on me.  I can't trust my nose anymore.  I smell pooh so I check and there is nothing.  I don't smell pooh and do a periodic check anyway and there is pooh.

Even so, I guess among the Dementia Divas and Princes, I am looked to for information.  Probably because of this blog I am now looked at as the one with experience and expertise on how to deal with incontenence.  I am still learning.  My method works on George, it might not work on anyone else.  Each person with dementia travels a different journey with different behaviors, abilities, and emotions.  Each caregiver comes to the task with different talents, abilities, and issues of their own.

The trajectory for Alzheimer's puts bowel incontinence closer to the end stage.  George isn't near the end stage yet.

George's brain damage has occurred so that he doesn't sense he has a back body anymore.  It is evident when he showers and only the front of his body that he can see gets washed and dried if I don't assist him.

Rarely does he go to the toilet to pooh, though it does happen on rare occasion.  He goes pee in the toilet about 1/3 of the time.

I have wondered if he has no sense of his anus and backside, then he could poop while I am cleaning him.  Well, since that thought occurred, it has happened.  I am wiping and wiping and not getting to the end.  It is like a magician pulling all this stuff out of a hat.  I keep scooping.  "Hold still, I am not done yet."  .... "Not yet, there is more to clean."

This week I finished cleaning his bottom and put him in the shower while I got undressed to join him.  I step into the shower and see him standing with his hand full of pooh and more on the floor of the shower.  He is totally unaware of what is happening, he was just trying to rinse the stuff off his hands.

"Whoops!  Stay, don't move." I said, and stepped back out of the shower and got some wipes and the waste basket to clean up.  As I clean him I try to comfort him, "This is just the journey we are on."  If he is aware at that moment, he needs comforting.  If he is aware he won't be aware for long.  That thought comforts me.

I now have him face his sink while I clean his bottom.  I keep having to remind him not to move.  "Not yet, I am not done yet."  The other day while I was cleaning his bottom he picked up his toothbrush and tooth paste and brushed his teeth.  Ha ha.

I have a couple objects I toss into his sink and tell him to play with them.  But they don't keep his interest.  Maybe I should get some of those oversized plastic bolts and nuts...

So, anyway.  I am going to do a separate post dedicated to toileting.  I hope it either helps other caregivers or at least provides someone a laugh or a giggle or a smile.

******************
If you enjoyed this post, please click the join button so you can be notified when Susan posts again.  This blog post is part of the book Alzheimer's Trippin' with George - The Journey Continues.  The second book in the Trippin' Series by Susan Straley.


Comments

  1. Replies
    1. Thanks Sue. One of thousands (millions?) of women and men who care for loved ones with Dementia and other progressive diseases like MS and Lou Gehrig.

      Delete
  2. You are my hero. My difficulties pale in comparison

    ReplyDelete
    Replies
    1. Ha ha, my difficulties are easy compared to your challenges this month and the next few months. (for our readers who don't know Connie... Connie broke BOTH ankles while having the challenges of working full time and watching over her husband who has gone blind recently)

      But you are one powerful woman, Connie. An inspiration to me and many others.

      Delete
  3. Some things in life cannot be fixed. They can only be carried. - M Devine
    You take each day and negotiate each one with a commitment to "carry on" the best that you can for George and yourself. <3

    ReplyDelete
  4. Remember that you used to call me “Superwoman”?
    YOU ARE A REAL AMAZING SÚPERWOMAN!

    ReplyDelete
    Replies
    1. Thank you Elizabeth. I am so very proud of you. Single moms are superwomen and you with learning to overcome the language barrier. That makes you a Super duper woman. Hugs to you and the kids.

      Delete
  5. I am so glad you found the time to blog again. I was checking every day. You are doing such a good thing by sharing your experiences. I have learned a lot from you. We will be heading back to Fl starting next Thursday. I am a little anxious about the trip but I keep you in mind and choose to view it as another adventure in our journey in more ways than one. Look forward to seeing you both.

    ReplyDelete
  6. Hi Audrey, I am surprised you have to check. I send out an email to let folks know. I will add you to the list. Otherwise, if you have a google account you can follow me and it will notify you when I leave a post. May you find the trip peaceful. Hopefully you have something for hubby if he gets agitated. Take your time, don't go too far in one day, allow time for the movement of husband and animals into and out of the motels. I am waiting with a big HUG for you and a scratch behind the ear for Charlie.

    ReplyDelete
    Replies
    1. Sue,
      I don't know how you do it. I would not have the patience. Hope to see you soon.
      Jane

      Delete
  7. Wow! Mom, this is hard, but for you doing it with pizazz suits you! Love you and dad. Keep up the great work!

    ReplyDelete

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