This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Wednesday, November 6, 2013

Respite Act 3

When I was a young girl I used to love to visit the local park. The playground had a merry go round there. Not the carousel type with the horses but the colorful one that had the rut all the way around it where we ran while holding on to get it to spin, then we would jump on for the ride.
If we were lucky we could get an adult or another person to spin it and all we had to do was hold on for the ride.
Learning how to ride without feeling sick or falling off, took practice.

As a self spinner you could the circle jump on and gently ride out the fun until it stopped.
When another person and their force took over, that could sometimes be another story.
The slow spinners allowed us to sit on the edge and we could bring it to a stop by putting a foot down on the ground, another reason for the rut around it.
The faster spinners left us with little no control so we learned how to ride. For me, it only took one fall off during a spin to learn what centrifugal force was. So to prevent being spun to the outside edge and off, I needed to hold on to the metal bar tightly.
I also learned the many ways that metal bar would be my riding friend. I could sit straddle of it. Arms and legs wrapped around it with a death grip. A little braver, laying down with head toward the center and a foothold on 2 of the bars and hands clutching the bars near my head. Sometimes I could let go.
Learning to stand came with it's own challenges but you learn to crouch and grip, then stand and grip, and eventually you find a center of balance and realize, you can move toward the center where you find the ride isn't so dizzying. There is where you can extend our arms to the sky and feel like you conquered the ride. Just don't let anyone or or anything distract you or you find yourself on your backside getting swung out to the edge. It's also there that you can extend an arm to assist another trying to make their way to the center.

This is my caregiver merry go round.

So it's been over a year since I had a chunk of respite time. Granted, I get an aide for 10 hrs a week. I can get a few errands run during that time and if I have any 'free' time I usually try to get in a workout at the gym I am a member of. Lately that hasn't happened though.

Hubby has been very, very needy. I have been “Honey!”ed so much that I suspect bees will begin to follow me around!
My lack of presence seems to set off some sort of internal distress. Even running the vacuum in another room feels like a luxury. So mainly I sit with him, play a computer game to escape from the reality and mentally shut out everything I don't have to contend with.
Caregiving is weighing on my heart and mind. Everything feels like its sliding to the edge of the merry go round being turned by life and some days I wonder, “Will I be able to hang on without falling off and getting hurt?”
I keep trying to maintain my balance as I work my way to the center. Clinging to Jesus with arms and legs wrapped and locked on. I know once I get there I can find some peace from the struggle as I stand with arms lifted and watching the world spin. It is also there I can reach out to others to help them reach the center and hopefully a center of balance.

One of the things that threw Hubby and myself of center was the start of Hospice. Don't get me wrong, I am VERY grateful for them and so happy to have them. It's just... I don't know.
Hospice started with Hubby a little over a month ago. He continues to deteriorate physically but the odd thing is cognitively he seems 'better' (?). Oriented to place and person. Ahhh but “You aren't fooling me Lewy, I've seen your tricks before and I'm not falling for them!” So even though Hubby seems more his old self trying to communicate (very s l o ... what?), I maintain a distance in my mind and heart so neither will take a hit when the decline slams us again.

Now it's time for respite and I had scheduled 2 weeks.
Hubby's anxiety shot up as respite neared. I waited a while before saying anything to him for that reason and as the days got closer the anxiety increased. His behaviors worsened and his attitude towards me worsened and honestly I prayed SO HARD for the Lord to keep my mouth closed. Eyes straight ahead and just get through one day at a time. For a wile I didn't know if he would even go as he stated he would not. He tried to pick a fight with me the day before we were to leave and spoke very mean, vulgar and hateful things. I promise it took a great deal of emotional strength to remain calm and not respond. I prayed for a steal vault around my heart and a clamp on my mouth. I forgot to ask for protection of my mind because he got a few shots in that made me think, I would be glad when he was gone. Truth.
The morning came and although he was reluctant he was at least cooperative in getting ready. I allowed plenty of time and never rushed him to do anything. I packed almost everything the night before. One mistake I made was doing the packing in our bedroom. I could tell he was getting upset as I started gathering his clothes, so I stopped, waited for him to need to use the bathroom and while he was occupied, moved everything to another room and packed a little at a time until I finished.

This particular respite time I wanted him to try a stay at the VA contracted nursing facility instead of the VA Hosp. My reasons, all logical to me, were, since he had already expressed his dislike of the VA hosp I thought a different place and perhaps atmosphere would satisfy him more. There would be more people, men and women. More visitors in and out. He might be more engaging with them and actually better emotionally. He would be closer, 45 miles instead of 65. The drive is better and I don't have to fight big city traffic. Side note, I was not familiar with the town we were going to so I pulled out my map but Hubby had been there and through there many times in his car dealing business days so he told me how to get there :) Other reasons I chose this facility was he can take his Hospice services with him so if he needs anything at all, supplies, meds, they will provide it. Also the thought that IF I would ever need a permanent place for him, this is the facility I would use so I wanted us both to have some feel for it.

The facility is lovely from the outside. It looks like a remodel was done to it at some point and it was decorated for the fall. The inside was very clean and the front gathering area was large and homey. Residents were watching TV, conversing or playing dominoes with one another or just sitting. One item of interest was a very large display that had actual birds in it. SO pretty.

The room Hubby is in is roomy. He shares with another gentleman. A very nice and quiet man. This is much better to Hubby's liking compared to the noisey one he shared a room with at the VA hospital. The rooms are older though, painted concrete block walls and connecting rooms share a half bath. So 4 residents share a sink and a toilet. Immediately there was an issue with that. The bathroom was tiny and a wheelchair wouldn't even get wedged in the door. There were no grab bars and the toilet wasn't the raised type. So Hubby was offered a bedside toilet.
Another thing about the room is, compared to the VA Hosp which is completely furnished, this respite room is more like a dorm room. Except for a bed, completely EMPTY! They were kind enough to scramble and bring him a night stand. They rustled up a rolling bedside table too. The gentleman he shares with said Hubby was more than welcome to watch TV with him. The rooms don't provide TVs. So day one of my respite was spent getting Hubby settled in and then making a list of items he might need that I hadn't thought about or making sure he was stocked up. Day 2 was spent gathering those items and taking them to Hubby. ahhh Respite, so glad I get a break from caregiving! LOL!!

I'm not worried about Hubby per se, I do hope he engages with the others. Unless his Lewy Body Dementia lets up though, I doubt he will. Lewy put him on the downward slide. Although Hubby has been more vocal at times, his mobility is shot and for the last few days had to be total assist with transfers. He also gets hit with unresponsive or barely responsive. I do not contribute this to medication. It fluctuates too much. Another Lewy Body symptom.

One last thing to share, Hubby is very convinced that he will pass away while he is in respite. I asked him to wait until it was over. He agreed so I'm holding him to that ;-) but the best thing was his mushy sentimentality and expression of love for me.
As we were getting prepared to leave for respite, Hubby said “Well, if I don't see you anymore, it was nice knowing you.”
LOL!!!! I'll take what I can get :D

1 comment:

  1. Hi Kathy! I came to visit from the Caregiving Progressive Blog Party. I'm so sorry to hear about your difficulties as you prepped and take this respite. But what a grand example you are setting to share what you are going through - even the tough times - and how you are clinging to Jesus in the midst of it.

    When my senior dad was put on hospice, we went through a few extremely difficult weeks when his behavior went down hill dramatically and sundowning was long and awful. It turned out to be the medication and eventually they were able to figure it out and, while things weren't perfect, he was again able to recognize me as his daughter before he went home to be with the Lord. I still remember how hard that was and it sounds like you are having something similar for a much longer period of time. I hope your respite went well and am praying for you and your husband.


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