Wednesday, August 30, 2017

Learning more about Dementia Care and still saying goodbye

I should have known.

I kind of knew.

Sometimes I lay out on the bed the clothes that I want George to put on after his shower.  I stay in the shower after I wash and rinse him.  He goes out, dries himself and gets dressed.

So when I laid my pants on the end of the bed, I kind of had a nudge in my brain that that wasn't a good idea to leave them there.



After his shower he put his bike shoes on instead of his tennis shoes.  No big deal.  When I tell him he has my pants on, the words do not register with him.  He just smiles and does his nervous, teary laugh.  He wore my pants for the rest of the day.

On Saturday after our bike ride I got him undressed, glasses and watch off, and into the shower.  Then, like I have done in the past I rush to get things ready for when he gets out.  I might set his clothes out, I get a fresh towel out and place the old one on the floor.  I get myself undressed to get in the shower with him to wash all the places he forgets to wash.

I have to make sure the dirty clothes we take off get in the hamper or he might try putting them back on.

I placed the items in the hamper and turned around and there is George out of the shower already and trying to put his depends on while dripping wet.


He is agreeable, though he looks at me like I am crazy, when I take him back into the shower to wash his head and face, arm pits, butt and back of his legs.  Then a new routine starts.  Instead of me staying in the shower to wash myself.  I follow him out.  We are both dripping wet.  I dry him off and coach him through getting dressed.   I grab a robe and put it over my wet body and take him to the living room.  I set him up with a movie to watch.  Once he starts watching I keep my fingers crossed that the movie plays through smoothly.

Now I can go take my shower.  Whoo hoo!

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Caregiver Training

Each time I go to training I come home with more knowledge and a pile of STUFF!!




My den is getting quite cluttered and when I think I will clean it, I get distracted.  Either with email or phone calls or George saying, "Wanna go do something?"



On Friday last week I paid for a day at the Key Training Center so that I could attend a Caregiver Training. 

George is waiting for the bus to come take him to Adult Day Care at the Key Training Center in Lecanto


Debra Selsavage spoke in the afternoon and I picked up a few tips on dealing with someone with the anxiety or anger that sometimes presents in people with Dementia.

A reminder: Dementia is the name for the symptoms and is like an umbrella.  Alzheimer's Disease is just one file folder under that umbrella.  There are about 110 folders under that umbrella.  Alzheimer's Disease is the one that holds the most papers (patients).

Pointers

1) Never touch the person from behind.  They are easily spooked and can lash out when surprised.  It is better to get in their line of vision (which is narrow).  Get your eyes at their eye level and smile.  Approach them in a friendly manner.   Reach out to shake their hand, but instead of taking their hand take their thumb pad so you are each holding each other at the base of your thumbs. 



Once they know you and accept your touch, you can keep your hands on them. 

Sometimes they can grip but don't get the signal to let go.  I have seen George do this when shaking hands with folks.  He grips hard and doesn't let go.

2) Enter their fantasy.  If they are afraid of what they see, chase that imaginary thing away for them.  Empathize with them.  If they thing someone hasn't come to visit them, and they did visit.  Just agree, don't argue. Empathize with the feeling.

She said that language is on the left and that the left side of the brain shrinks the most.  She said that swear words and music are stored on the right.  George doesn't swear... yet.  He does like music. 

George has lost a lot of his language skills.   I usually give him two choices.  Sometimes I can tell he isn't choosing, he is "parroting" the words he heard.  In that case I choose for him.

I try to keep my requests to one or two words.  "Pants, Down"  "Sit Please" 

A technique I have been using to get him out of the trike is to say "Forward, Forward, Forward" and I place my hand on the back of his shoulder and nudge him forward.  So he bends forwared from the hips.  This takes the weight of his upper torso off his hips so he can lift his hips.  Once his legs are almost straight, he can lift the upper torso.   Debra demonstrated this technique at the workshop.  Hmmm.  

He is still telling people he has dementia.  I was on the phone with our friend, Jane, and George walked in the room.  I handed George the phone and he said, "Hi." and then "I have dementia" and he started to cry.  So he knows, he knows.  My poor friend didn't know what to say. 

The tears and the thought didn't last long.  After the call he was ready to "go do something".





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Debra Selsavage gave out a sheet with "Ten Essentials:"






Never Argue; instead AGREE
Never Reason; instead DIVERT
Never shame; instead DISTRACT
Never say "You Can't"; instead DO WHAT YOU CAN.
Never Condescend; instead ENCOURAGE and PRAISE.
Never say "remember"; instead REMINISCE.
Never say "I told you"; instead REPEAT
Never lecture; instead REASSURE
Never FORCE; instead REINFORCE

And I will add here, Never expect yourself to be perfect, do what you can and take care of yourself.

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Glen Campbell passed this month after living many years with Alzheimer's Disease.  If you haven't seen the documentary about his journey, it is interesting.

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We all got "fidget mats" at Memory Lane a few weeks ago.  A fidget mat is a lap blanket with pockets and zippers and strings, and stuff to fidget with.  Even little stuffed toys are attached with a string and stuffed in the pocket.  In the late middle stages fidgeting is common and this keeps their hands busy and calms them.

In fact, now I have come to the conclusion that I need something interesting to put in George's hands when I am cleaning him up after a messy bowel movement.  It might keep his fingers from spreading the mess.  Something plastic and easy to clean.

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WORK

George stopped doing puzzles recently.  Even the 24 piece puzzle seemed too hard for him at times.
Other than TV and coloring, walking and biking, what can I have him do that doesn't require I sit there with him?  I started asking around and got some ideas.

Jodie (George's daughter) called and suggested a job for George.  There is a video online about a man with Alzheimer's that was worried.  He had to get a job.  He had to get to work!  

So his daughter told him she found a job for him and he would get paid $5 a sheet.  She then placed a sheet of bubble wrap in front of him and told him he was to pop each bubble.  He was thrilled with his job and spent several hours a day popping bubbles.

I have asked our friend, Wilma, who heads up "The Happy Hookers" in our old neighborhood if she had yarn he could put into a ball.  She said she will have "work" for him the next time we visit.

I also have a case with 4 rows of different colored poker chips.  Occasionally I dump them in a bag and mix them all up and then I ask him to sort them out and put them back in the neat rows in the case for me. 

A friend at Memory Lane suggested taking 5 to 7 decks of cards.  Marking each deck with a number.  Mixing the cards up and having George sort them.  Doesn't matter if he gets it right, it is something to do.  So I am trying that, he has a harder time with that than with the chips.  He keeps turning the cards over to look at the face and then getting mixed up.  Maybe next time I will have him put all the aces in a pile, all the kings in a pile, and see how he does.

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Its all about ME!

Not!  However, I have been constantly reminded in caregiver training and with conversations with those who have taken this journey before me.  I need to do things that will keep me healthy and will help me find who I will become without George filling my days.

I am trying to do things to take care of me. 


  • I have started getting a massage every month.  
  • At least once a week I go to the gym when George has home care or is at Day Care.  
  • I keep reaching out to friends.  
  • We still bike and a bike friend offers to stay back with George so I can speed ahead.  We do this on the way out.  Then on the way back I take over and bike with George so the friend can get his workout in.  We are so blessed with great friends. (Thank you again, Zip.)
  • I paid for an online course to get certified as a personal trainer through AFAA.  Though finding the time to study this challenging course is another pressure.
  • I study Spanish on line most days.
  • I do this blog.  Which is not only therapy to see our journey from outside, but it is also something I can look back at and prove to myself that we did the best we could.
  • I attend support groups.
  • I have rented out rooms in our home to enhance our income to cover the extra costs of care and stash some away for the future. 
  • We do yoga and I try to not worry about how George is doing the yoga, I get do it for me and if he is moving it is good.

Speaking of reaching out to friends.  Sunday we stopped in at a friends and we managed to get George in a kayak that I tied to mine and we went kayaking.  I made sure he had on a life jacket.  Who knows if he still knows how to swim.  We saw 3 otter, fish, turtles and birds.

Stretching our calves during a walk.

No wonder I have a messy den.  Time to get off this blog and start to find places for all the stuff I got laying around!

Cloudy morning walk to the lake.
Petrified frog.
Early morning walk to the lake


Thanks for journeying with us.

10 comments:

  1. Thanks for keeping us updated. Love youse and think of you often.

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    1. Thank you, Sue. We all need love sent. You too. Love and hugs.

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  2. Sue, I do the same shower scene as you. Yes, wearing my clothes, and if I am not keeping an eye on him, he will put on up to 5 shirts...or puts on his dress shoes and black socks but leaves on his pj shorts and shirt. Words do not register here either. I do not say "don't"...that word isn't heard, he only hears what comes after that word. 24 piece puzzles gone too, brought back Duplo blocks (large Lego type) from Melissa, he plays with those, and a stuffed animal with a long arms/legs/tail, it is a soothing action to stroke the toy. I will try the yarn and chips. His appetite is not good. I was encouraged to look into Hospice - I had a meeting this morning. They are not the "end of life" 6 months help they once were. They can help with a nurse coming in once a week, volunteers who can sit with him, supply items like depends or other medical, all covered by Medicare. Karl does not qualify because he is still somewhat continent and can feed and toilet himself and is not a fall risk. They do have a baseline for him now and will put me on their 2 week call list from Care Connections. Check into Hospice in your area, ask your doctor for a phone number or call the Dept. of Aging.

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    1. Hmmm, I will see if I can find some used Duplos. But I doubt George could do them. Strange how that part of his brain that he worked all his life is the part that seemed to disappear first.

      I heard there are tests to see if they are ready for hospice. Since George can bike a mile and ride bike 32 miles he is probably not "qualified". I will check them out when he gets less able for sure. This is a way to avoid the expense and horror of a nursing home. Thanks for the info. Hugs to you dear friend.

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  3. Sue, I passed on your blog address to members of my support group here. It has been so helpful to me personally and am sure others will find it too. I too am now in the shower with Russ. He is always resistant as he fears falling. He was missing most parts which I discovered when I walked in on him. Once in and me helping he calms down and we talk and laugh. We still play at playing cribbage most days. It is our together time before dinner. Friends are very important too. Russ has a buddy who will take him fishing on his pontoon usually once a week. He always tries to schedule it when he knows I have something to do on my own. What a blessing. We have friends we eat out with but it gets harder to converse or keep his attention with all the restaurant noise. Our pets have been a blessing. A calming factor for him and me too. Something cute and fun to focus on. I am thankful Russ still has control of bowel and bladder. He is not at all active and if I ask him to do something for me I usually have to be right there with him to guide. Sometimes I get so frustrated and angry with the constant repetitive questions and lack of understanding and then I feel guilty. This is not an easy road but its what is laid out for us and so we will keep trying to look for the good. Thank God that he quickly forgets the bad. Thank you so much for sharing your journey.

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    1. When I get frustrated/angry I try to tell him it is not him I am frustrated with but its my inability to manage at this moment. Then I have to work at getting myself level. Glad to hear you are still playing crib.

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    2. Thank you for traveling with us on this Journey, Audrey. Do you have him sit in a shower chair? I have one stored away that someone gave us for that time. Also be extra careful with the temp. If a patient gets burned the bad experience is an emotional experience that creates resistance to the shower. I have also learned that sometimes their skin gets real sensitive and the shower actually hurts.

      I am glad you have a friend to take Russ fishing. Good for you, good for Russ. Friends are angels that help make life worth living.

      Your anger and frustration at times is you still grieving, still trying to hang on to the life that you had. Be loving and patient with yourself.

      Wonderful that you are still playing Crib.

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    3. We had a walk-in shower with a built in seat and hand rails installed last year. In Fl we have a shower chair. Resistance at first but now comfortable with it.
      One job Russ helps with is dusting the blinds. He's tall and can reach all the way to the top w/o standing on a chair. He does that while I do other housework. He also dries dishes. Likes to be in the kitchen with me.

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  4. Thanks to all for sharing. Some 'job' suggestions (help them feel like making contribution): Familiar house work- I used to have my residents fold laundry- I had a basket filled with bags- match up socks (got old socks from friends), napkins, face cloths, hand towels (hotels get rid of linen regularly, have quilting group make napkins for folding) You can pass them along if & when they no longer work. Basin of silverware to be washed/dried/sorted in tray. Some can be done while you are in kitchen. I got envelopes from phone comp. They cut off the stamps & we sold them to stamp collecting co. Used child scissors. George is past this but we got flyers from charitable org. to fold. Maybe piles of out dated ones could be folded. or unfolded & stacked to be folded later. Used darning needle/crochet cotton to string buttons on or beads from those old car seat wooden beaded kind. Sorting= make flash cards out of colored card stock. 1 side the color, other side by shape.(simple outline of square/circle/triangle.) Bingo chips, buttons,colored paper clips bag of beans & rice (if they don't eat them).
    We would play familiar music & give them a quiet instrument to play along. Drums made out of coffee cans, shakers-Easter eggs& rice (tape shut). Bubble wrap is a great idea- free source is stores- surfboards come in big sheets that can be cut down. An old push lawn mower with dull blades or raised blades and the lawn could be cut every day!

    As to looking after self- I can't always get away so I have set up 'Zen' Spots. little gatherings of things that put a smile on my face- like a rock, or flower(dried)he gave me, some small token I treated myself to... anything. I put them in each room... sometimes 2 or 3 spots. I also created a couple of spots outside that bring me joy. 1 is my whisper scream/cuss/cry spot. Look in 1 direction for that, turn & look at a zen spot than face the world again. You can't look after someone else if you are not in a healthy place. Hope this helps.

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    1. Those are great ideas. I am going to search for a Rock and Roll music with song book thing. I think he would enjoy that and it might be an activity that the Dementia Divas and the Amazing Princes can do.

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