Our Groundhog Day

I made this comment to another Caregiver friend...

Life with Lewy (Lewy Body Dementia) is ever changing.
Just when you think , Hey, I got this! Lewy changes the rules hmmph!

Just tonight I ran into a situation that was new for me.

Hubby and I had a lady friend that passed away last Dec.
Another friend had stopped in to see us and inform us. He spoke to Hubby but at the time Hubby didn’t know who he was. Friend was pretty upset by it.

Hubby and I talked about the passing of lady friend afterward and Hubby seemed to understand.
Like I said, that was Dec.

Tonight, Hubby asked about our lady friend.

Now for the last 2 weeks Hubby has been on the downhill slide, tonight we were somewhere in the middle.

I mentioned that she has passed away and that friend came and told us.
Hubby was very upset. He had not remembered so the feelings were new to him.
It was very sad.

I hope this is not something that Hubby must relive over and over again.

I wasn’t sure how to deal with it so instead of insisting that he already knew and it was a couple of months ago, I just sympathized with him and we talked about her for a while.

Even though the moment was sad, for a brief moment, my husband was visiting with me and that was what I chose to focus on.

Gentle Reminders

It's been an emotionally tough day today for a vast many reasons.

Hubby for the last couple of weeks has been on a downhill slide.
Mobility coming and going at the drop of a hat.
Lots of extra wheelchair rides
and 
LOTS of extra confusion.

But we are gettin through.

My post wont be long, I know, faint, right?

Tonight as I was attending to Hubby he looked up at me and asked me.
"Am I supposed to remember you?"
I answered calmly and matter of factly
"Yes, I am your wife, I am Kathy, and I take care of you.
And if it helps, You love me."

Hubby smiled at me and gave me a kiss.

Hey, I'm just delivering the facts ;-)

Me and My Shadow

What a taxing week we have had, Hubby and I.

It's been one of those weeks where Hubby has been and more confused and lost and falling down more.
This is how our journey has felt.

Hubby lost his map. Insistent that he knows what he's doing he finds himself going in circles and taking wrong turns in the house. Not one to ask for directions he departs for places unknown in search of the familiar.
In doing so Hubby has been stranded in the floor several times with his flat tire.
I have found myself having to get him jacked back up and towed back to safety.
My emotional clunker putters us down life's highway spitting and sputtering at every bump in the dementia road has many days left me out of gas praying for the strength to push us onward. And Onward we go.

I don't know the reason I chose to write a traveling metaphor. It made me smile though, so there it is :)

I bought myself a small piece of freedom :)
When Hubby needed 24 hr care I purchased myself an audio monitor.
I was however rather disappointed in my choices I had. I just wanted a non descript audio monitor so Hubby could call to me if he needed me. All I found were baby monitors with soothing sounds and night lights. I felt a little put out by that. Hubby isn't a baby, OK, granted he can act like one at times and that was even before his Lewy Body Diagnosis. And I can act like one at times but we didn't need soothing lullabies and cutesy lights.
Other types were like walkie talkies, hubby would have needed to understand HOW to use one and with Lewy, learning a new task is so difficult when retaining old memories for tasks are fading anyway.
Price was another factor. SO much money seems to be involved in caring for a person with dementia.

I chose the least cutsey model available with dual receivers. I could walk around the house and outside a few feet and still be able to hear Hubby if he called.
Lewy's progression began to steal Hubby's ability to call out. there were times I would hear thuds and hurriedly go to check on Hubby only to find him lying on the floor as if he was supposed to be there.

At other times I have walked into the room and found Hubby had slumped from his sitting position I had left him in, into an awkward and uncomfortable position that required assistance. Not hearing an alerting sound when that  happened I was unaware of Hubby's situation until I found him because he wouldn't call out for me. There had been no telling how long Hubby had been like that.

One of my biggest fears is that Hubby will get sick and run a fever or that he will fall and break a bone. The latter prompted me to move my computer into our bedroom so I could stay with him and he wouldn't feel so alone and I could keep an eye on him.
Now not only did I feel like I could  not go anywhere without Hubby having a person to be with him, I was afraid to even move around my own home. Little by little my "house arrest" had me putting up bars for confinement. Little by little I began to feel the restricting grasp of dementia's throat hold. I do not like that feeling.

A series of life ups and downs found us without an aide for a month and a choice that I made in an effort to help someone left me even more confined and dependent on others. Add to that the cold snowy weather restrictions; and well maybe you understand  what I'm saying

So what about the freedom?
Ahhhh I have learned to do a LOT of on line shopping. Looking the internet over and over for the latest bargains, decoding the coupons and deciding if they are actual bargains or not. I have many of  daily supplies sent to me from places like Alice.com. I order many food related items from Schwans.com. I am learning more about the advantages of Amazon.com and it was there that I found that little piece of freedom.

Amazon had a daily deal on a video monitor

I bought it and fell in love with it.
Now I feel like my 'bars' are gone and I get to wear an 'ankle bracelet'
I feel comfortable enough to go watch a movie in the living room with Niece, or even go outside. I can now see if Hubby gets up or how long he has been out of camera range. I am so very satisfied with it!

There are a couple of drawbacks though.

One being that Hubby is used to me being there. When he wakes and I am not, he feels the need to come looking for me. This may be the reason for the more frequent falling.
Also
It's a live picture. I need to remember that others can see it if I don't keep it discreet. I say this because Hubby only likes to wear his pull ups, socks and a house coat. There are times he will enter the room from the adjoining bathroom without them. Who knows what kind of show I may be watching on some days!

We all fall down

We have had our fair share of unsteadiness for the last couple 3 days!
Before then, Hubby took a downward turn in cognition but had some 'busy and awake' days.
Those days followed by a sleep crash. Waking only when reminded to use the bathroom or to eat.

Besides the downturn in cognition Hubby has had mobility problems. We've had to retrieve the wheelchair on 2 separate occasions for transport.
On one occasion Hubby made it to the kitchen but on his way back he froze up and was unable to walk. I tried holding him and guiding him but he never could understand that he needed to move his feet.
The other occasion and on a separate day Hubby was able to walk into the kitchen to retrieve a can of chips and toddle back into the bedroom, but through the door was as far as he got before he froze.
Unsteadiness accompanied Hubby and while I was busy in the kitchen, Hubby lost balance and fell forward onto out bed using his hands and arms to support himself as he bridged the distance of 3 feet. I walked in to find Hubby clutching the can of chips and keeping himself supported.
I was able to upright Hubby and balance him long enough to slide the wheelchair under him and get him moved to safety.

I fear we may lose our walking abilities sooner than I anticipated if we continue on this course.
I have made a couple of extra efforts in providing the safest and easiest way for Hubby to rise from his sleeping position but even doing that has proved futile.
For the 3rd time, in as many days, I have found him lying on the floor wedged beside his bed.

I think the most frustrating to me is that the falls are always when I have stepped out of the room.
I purposely moved my computer desk and household bookkeeping into our room so Hubby would not feel so alone upon waking. I practically live in there with him, so afraid he will fall and get injured.
Feeling a little 'captive' I bought myself a camera and monitor. A nice little gem so I can keep an eye on Hubby if I need to step outside or out of the range of  site or hearing. Yet he ALWAYS manages to fall when I am no where around!

Gentle coaxing and demonstration is usually the key to getting Hubby to understand what he needs to do to get up from the floor.
Even at 2 AM when he fell last night. I jolted up so suddenly I made myself sick. Poor Hubby, I got the gait belt and used it as a pull coaxer for the direction I needed Hubby to move and un-wedged and moved him enough to support himself leaned against the bed. Hubby looked up at me as I apologized through the huffing and puffing i was doing. I told him I was sorry for having to tug and pull on him. Hubby's reply. "We have to do alot of that. I may get pulled in two."
He smiled

I did too

Then I excused myself from the task so I could sit down and let my heart and stomach settle and cry for a min.
I don't do that often, maybe I should.

After I was able to get Hubby up righted we tried to walk into the bathroom. His walking ability has declined so much so quickly it seems. He can't move his feet. The best he has done for a while is just about drag one foot. No he hasn't had any type of stroke. He has just lost the ability to know how to use it. His legs want to move and he can 'spring ' up and down a little but moving the feet is a whole other feat. (I just made myself smile so I'm keeping the word LOL)

I'm very tired. I've written and re written this about 4 times already. I tried so hard to give it a positive tone.
But the reality of this day is I can't.
Hubby rests now.
And I have things to do.

It will get better. I will adjust and re group and trudge forward and smile.
That's what I do and I seem to do it well.
Just not today.

Sleep is over rated

Hubby has had several fairly confused days as of late. Staying up day and night with just cat naps.
He wanders around the house and gets lost. One night as we lie in bed I asked him if he needed to go to the bathroom, a through the day habit I have developed. He agreed then pointed to the bathroom door and asked, "Is the bathroom in there?"
After his return he settled back down in the bed and asked me "Where are we?" I explained we were in our home, in our room and in our bed. I stroked his head, it relaxes me, and Hubby accepted that information without question.

The next day brought it's own troubles , lots of sheets to change and more laundry. Hubby's personal care aide came but we could not get him to agree to let her give him a bed bath that day. Perhaps he felt like he already had one after getting cleaned up so many times.
Whatever his reason, sometimes it's best to just let sleeping Hubbys lie.

Later in the day Hubby was standing in the door way. Just standing there. I asked him if he needed something.
He replied, I don't know what I'm doing or what I need to do or how to get there.
Hubby was lost in a Lewy Body thought robbery. I suggest things that might trigger any straight thoughts,"Can I get your walker, are you hungry, do you need a drink, do you want to go back to the bed"...et al.  Usually it works and Hubby fixes on one thing that makes sense and  goes for it. This time was going back to his bed.
Watching him try and walk at times is frustrating. Walker suggestions and retrieval for show and tell help sometimes but many times my suggestions are met with silence or refusal.
Lewy Body is such a mean thing. Hubby is still inside so much of the time, he just can't get out and past Lewy's thugs. I can see him in there through his beautiful hazel eyes when he tries so hard to tell me something and he knows it's coming out wrong. It's heart wrenching.

Hubby's lesser sleep days all crashed in on him yesterday and Hubby slept all day. I woke him every few hrs to ask about the bathroom need and he rose long enough to eat the meals I prepared. But that was all.

Today we started out early. 4:20 AM. 

Actually 4AM as Niece was in the kitchen and dropped an item. Waking with the mental survey of what, who and deciding all was well slipped back into sleep in a matter of moments, so I guess it doesn't really count.

Hubby was fidgeting with his cell phone and the beep beep of the number pads woke me. I asked what he was doing and he told me he was trying to see how wet the bed was.
My non morning brain was able to decode this and I immediately removed myself from the area. (I checked myself for overflow, none, yay ) Hubby started rising and I started removing the blankets and sheets. Threw the top sheet and pillow cases in the machine, started the coffee pot and returned to find Hubby had slid down on his side of the bed with a death grip on his hand rail. His table bed table was leaning over and had wedged itself up on his knee. Hubby's neck was cricked up against the night stand and he was reaching out for me as I rounded the bed to see what assistance I could offer. I was finally able to remove the bed table to give Hubby a little more room to maneuver.
I have learned (the hard way) that physically helping Hubby most of the time is actually no help at all. My best course of action is to try and talk Hubby through the process of getting up even with a demonstration. This does take time to do and requires repetition in word and example but eventually, if he is able to process the information, we can do it. Even if it's in small segments.
By 5:10 Hubby was upright and a body survey revealed a couple of large scrape bruises on top of the already bruised side from a previous fall a week ago in the dining room. The good news, no broken bones :)

Hubby made his way to the bathroom without need of directions, the bed got changed, Hubby is cleaned up, laundry is going and the coffee is ready.

Let the day begin.

Downhill without snow, really long and whiney

Don't you just love it when a day starts down hill?
As a friend reminded me though, It has no where to go but up once it reaches bottom.
I think that was supposed to be encouragement.

Today started off with a straight up strip the bed and wash the sheets before I ever got any coffee.
At least I wasn't wet.
Right there should have signaled the tone for the day. But no, I had to be hopeful ;-)

Frustrations have been mounting for a few days, minor things we don't think about until they stack up high enough that one more minor thing topples them and they spill out and fall on those nearest you.
Between the frustrations with trying to make Hubby understand that he NEEDS to use his walker to prevent falling, yep you guessed it, he didn't and he did with no injuries thankfully, reminding him to let me know if he needs the bed changed instead of laying there and waiting for, I don't know what he waits for. The bed to dry? moving on...
setting the hands on his junk watch for the one millionth time, and the plethora of other small things.

That in addition to my own personal screw ups, forgotten or neglected things.

Now add with it and stir the frustrations that have arrived with Niece.
The breaking point was her choice of shoe wear. Yes shoes!! At 15 I think she should have a little more self care and not need constant reminding about her appearance or personal hygiene. Sadly however, she does. I'm almost at a loss at trying to teach her these things. One step forward and 2 steps back I feel some days and I'm wondering if I actually have the fortitude to continue to teach this.
Not being a quitter I am making lesson plans.

So back to the shoes.
I pick and choose my battles, with my own children as they were growing up even though I chose to battle over something stupid at times.
With Hubby, especially now as I am aware his progression further into his Lewy Body dementia makes him unaware at times of what he is even doing.
With Niece I have tried to do the same. She's a beautiful, giftedly talented and smart when she wants to be, young lady.  She's a pleasure in that she isn't the typical smart mouthed moody hormonal  teen girl. (I have heard stories about such girls as I would NOT have any first hand knowledge and I am SO happy I write this as anonymous as I can so you can not speak to my Daddy regarding this, giggle) Hubby enjoys tormenting Niece and enjoys her presence.

Niece chose to live with Hubby and I for a year. We welcomed the opportunity to have her. Her decision was not due to any behavioral issues, just a desire on her part to live in the South as opposed to her Northern life. We choose to homeschool for 2 reasons.
Hers- It filled a desire that she has had for a while to leave the North. It also filled a desire she has had and asked for to be homeschooled. God allowed her to experience both of those desires.
Mine- Was purely selfish in that providing transportation to and from any extra curricular school functions at various times would be nearly impossible with Hubby's condition. I worried she wouldn't be able to participate in school functions or visit new friends as my own children had, leaving her feeling alone and left out. To avoid isolation from others, a Church friend, whom also homeschools and has a daughter niece's age, offered to pick Niece up and take her to Church and other youth related activities. Thus allowing her the social interaction she would need. What a God send my friend and her daughter are.

But what about the SHOES?! I hear you screaming.
Niece keeps her room in a complete shambles to say the least. She will do anything without complaint if she is told to do it. She will however not do anything on her own.
I woke her this morning to shower and get ready for Church. Earlier in the week we had an opportunity to get out for a little bit and do a little shopping. We found her the cutest sweater dress that fit her to a T! So this morning she put it on, I reminded her to put on deodorant, comb her hair and asked her what shoes she was going to wear. She had a pair of dress flats. Perfect :) She had 30 mins to wait and finish getting ready.
Hubby was wandering around the house clutching everything he could to stay upright (Hubby, walker, PLEASE) and decided the foot of the stairs in front of the door was a perfect place to stand. I reminded him that Niece needed to get by so she could leave as her ride was pulling in the driveway. Hubby doesn't move quickly.
Then as she was headed out the door for her ride I realized she had put on her old black tennis shoes. Wearing white socks and unlaced shoes she started out the door. I asked about her flats. Her response, "I couldn't find them."
I stared at her, and in frustration, sarcastically recapped her remark "You're choosing to wear those black tennis shoes and white socks with your nice dress because you WOULDN'T find your dress shoes?" She started to respond but all I could say was "Go! Your ride is here, just Go." Then I yelled through the door before Hubby closed it, "Tie your shoes!"

Niece walked away with head down, Hubby feeling the frustration of my tone retreated to the bedroom and I went to Nieces room and in less than 5 mins found the shoes and threw them on her bed for her to see when she returns. Staring at the mess I went over the incident in my mind, I left the room feeling like the most horrible person ever. Yeah it's a good Sunday.
Guess every day can't be fun.

Awkward situation

Poor Hubby.

What a down turn we have taken mentally over the last few days.
Hubby gets a word or phrase in his head and for a while that's all that comes out even though he will be talking about something completely different.
This is harder to decipher and much more frustrating for Hubby because he knows what he is saying even though he doesn't realize the words are wrong. To him, I'm the one that keeps getting things messed up.

Hubby has also been on his obsessive kick. Those watches and rings and pieces of scrap and junk jewelry. I think if he asks me to set the time once more on that piece of junk watch I shall hide it from him. (evil laugh)

A few nights ago he had everything all spread out before he went to bed. As usual I went to bed late. I slept in the next morning so the room was bright when I woke and looked over at Hubby. He was sleeping on his side facing me. For some reason I noticed he was wearing his fathers military dog tags, a gold necklace, a bracelet, a wedding band that wasn't his, another ring and a watch. Talk about bling! What a site to wake to.

Caring for a person with dementia is a little like having a child in reverse.
I wouldn't yell at my child for falling asleep in their dress up so why should I be upset about Hubby.
I wouldn't feel bad about smiling at the site of my child. I might even take a picture of it.
I don't feel bad about smiling at Hubby although I wouldn't take a picture of it.
No, Hubby doesn't appear to feel scared or threatened to be here. As long as he feels content and safe I say bling all you want Hubby. just keep your clothes on.

Tonight's obsession is with his cell phone. Hubby insists it doesn't work, so in an effort to "help" I called it from our house phone. I stepped out of the room as we spoke then returned to the room. I said "See, it works." Hubby was staring at the phone.
He said "How do I know?"
I answered, "I just called and talked to you."
He insisted that it was not me he spoke to so I contained my giggling, took a deep breath and called him again.
This time I stayed in the room.
Hubby flipped it up when it rang. Said hello without placing it to his mouth or ear. I reminded him to do that. He said hello again.
Then the following conversation ensued
 I said "Hello"
"Hello"
"See, the phone works"
"How do you know?"
"I'm calling you, see I'll even wave at you."
I wave
I say, "See, I'm waving at you"
Hubby says "Yes, I see her"
Hubby waves and turns back to phone
I say "I love you"
Hubby pauses
I repeat
Hubby turns around to look at me then turns his back to me and says in the phone, "You do? OK Bye"

By this time I'm laughing and can not even continue the phone lesson.
Hubby has no interest anyway after a strange woman just professed her love to him!!

I am SO glad I'm writing all this down.