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.

Tuesday, November 22, 2011

***Time in a Bottle***

Still dancing with the V.A. after a week and still no closer to getting out home health care renewal approved.

Asked family to make a milk run for us and was successful at that.
Had an unexpected and glorious surprise visit from oldest daughter one day she happily ran an errand for us and a Dr appointment had us in town on another day, so a dash into the store for catfood was able to be made.
God's timing is always perfect.

Not having our HHA has placed me back into the role of tending to Hubby's bathing.
Not really an issue. I stepped aside for the HHA to relieve some of my caregiving duties.
Hubby also works easier with HHA and doesn't put her off in the task as easily as he tries to with me.
I think he realizes that HHA is only here for certain lengths of time and he must take care of bathing while he can, unlike me, I'm always here so he can postpone, and does or tries to.

We gave up tub bathing/showering a long time ago.
Hubby had a difficult time getting in and out of the tub even with assistance.
We opted to bed/sink bathe for his ease and it has worked out quite well.
He can sit on the portable toilet chair that has hand rails attached. He doesn't feel like he will slide off. Also the chair can be raised to a better height for Hubby so he doesn't have to sit down as far and struggle to rise.
This has been a good arrangement for us all.

So this is the part that warrants the, Maybe TMI, Title Stars

Respite had been wonderful.
I feel so much more peaceful.
Hubby has suffered no ill side effects from his stay. He is still as confused as ever, still sleeps a LOT, still orders me to do things, still says "Huh?", still accuses and suspects.
Hubby didn't get to escape, even for a short time, from Lewy Body Dementia.
Nothing changed for Hubby in the Lewy life.

The change was in me.
I noticed it a lot right from the reunion.
I noticed it most strongly as I was tending to bathing with Hubby.

I turned on the bathroom heater and made sure the water temp was warm yet comfortable.
I had my cloths and towels placed on Hubby to keep him from getting a chill as I washed him.
The procedure started out as ordinary and robotic.
I washed his hair and his neck and as I held his face in my hand to wash it, time slowed down.
It was if I had stepped out of regular time for a moment and looked at Hubby.
Hubby closed his eyes as I gently stroked his eye lids and cheeks with my hands.
I watched him intently as I slowly glided the cloth across his brow, down his temple, around his ear and down his neck. My hand rubbed against his beard stubble and the sound seemed amplified as if I could hear each hair rising and falling.
All the while gently cupping the other side of his face in my other hand with my thumb on his cheek.

The moment was so slow and I was overtaken by an emotion of pure pleasure.
Satisfied that I was there and blessed to be able to do that for him.
Hubby never opened his eyes as I rinsed out the cloth and proceeded to repeat the other side of his face.

I was looking at Hubby, really looking at Hubby and not seeing Lewy.
I felt so deeply in love at the moment it was almost overwhelming.
I desired my husband and the life we wanted together when we married.

Then another feeling, one of sadness, one that crept in and whispered, This is a goodbye.

But that is what dementia is.
It is a goodbye, every day, to something.

I finished washing Hubby's face in the very slow matrix kind of moment and as if a switch had been thrown, things were back to the norm.

I finished Hubby's bathing, I soaked and scrubbed his nails and feet, applied lotion and assisted with dressing.
We played barbershop and Hubby paid me with a kiss.

Monday, November 14, 2011

Welcome Home Hubby

"Actually, he's been quite pleasant." That was the last report on Hubby before I picked him up from Respite.

My last day was a lazy day intermittently speckled with moments of preparing our home for Hubby's return.
BIL and I made the run to the grocery store and got ourselves some supper.
I turned in fairly early.
All in all it was a nice quiet day.

I'm so happy I surrendered my fears of Hubby's care and took advantage of the respite.
The time away had refreshed me and I was able to put that calm to work right away.

As soon as I arrived to get Hubby he was seated in the day room. I entered and was greeted by looks and smiles and even told by one of the residence to "Come on in!"
Hubby was sitting at a table with his back to me and I walked up beside him. He turned to look at me and I smiled and said hello.
He scowled at me.
I spoke again and continued talking about being ready to go home and gathering his belongings.
He eased up on the grumpy face.

Our ride home was silent until he suggested we get lunch. We did.

We made it home and he is now settled in his own bed.
The evening has been mild, the word exchanges have been few but gentle.
It's good to have him back home.

I was greeted by an unwelcomed phone message when I returned though.
Apparently Hubby's Care Plan with the Home health Agency has expired and the V.A. never renewed.

In best Pooh voice...Oh Bother

I've played this song and dance with the V.A. before.
I actually thought I had one more week before expiration, or at least MY calendar said I did so I just have to jump through the hoops to get it reinstated. Let us all collectively pray that it wont be weeks again before they do it.  

Not to end on a sour note, I am ever grateful to have the service we do receive.
Especially the respite :)

Sunday, November 13, 2011

Today is a good day for Pancakes

We slept in!
It was 8 AM before I ever rolled over and looked at the clock!
I couldn't believe it, even the dog slept in.
I promptly rose, started the coffee and let the dog out. My opening and closing of the door put BIL in motion.

The morning sun was shining bright, always a bad thing until I have had a cup of coffee ;-)

I sat and drank my coffee and went through my prayer list without interruption, especially for this late time of the morning. I wondered how Hubby was.

Another cup of coffee, I called to check. It was reported that he was doing fine. No reports of illness. His appetite was good. No agitation.
I was asked if he owned a walker and answered, Yes he does but doesn't use it properly. He always pushes it leaving me with the feeling that he will tangle up in it like a cartoon character whenever he tries to use it.
Nurse laughed at this mental picture.
They were concerned about his unsteadiness. Nurse reported that she asked Hubby how he got around at home but before he could answer she said "Let me guess, you hold onto furniture or anything around you?" She said Hubby just smiled.
I asked if he was using a walker there but she said No he was using a wheelchair for long distances (I already told them he would need to do that anyway) and clinging to the wall rails (I told them he would do that too).
She said " He is sleeping right now, but as you said, that is his normal".
I agreed and was very happy she remembered what I had said yesterday.
I asked her to tell him I had called again and she reported that when she told him yesterday he kept asking when I called.
I asked her to assure him I would be there on Monday to get him. She said she would.

BIL finally came downstairs from the bathroom as I was pouring myself another cup of coffee. I asked BIL if he would like to have pancakes for breakfast. He excitedly said "Yes Mam!" So shall it be then.
The sun was shining, the call was good, the coffee had spread though the veins enough. It was a good day for pancakes. :)

Saturday activities had to stick to the routine that has been established for BIL so I knew the day was pretty much a busy one for him. The slowness of the day also allowed me to finish the work in the bathroom.
I turned on my TV to a music station and listened to the songs I grew up on while I kept myself occupied with my task I started.
Then I lounged around doing nothing the rest of the day and I'm tired of doing it now.

Feeling a little nostalgic with all my music I began to think about how life would be when Hubby comes home.
I know I can't wish for things to be the way they were pre Lewy but I can still miss them. I do.

I don't believe I waited too late before I took this respite time, I do think I waited too long to take advantage of it. I don't feel like I was ever at the end of my rope but I could tell it was getting shorter and should not have let that happen.
I'm not dreading or worried about Hubby coming home.
I feel renewed in my spirit to be supportive and loving for Hubby.
I am ready for Hubby to be home.
I hope he is ready to be home also.

Saturday, November 12, 2011

Me, Myself and I and BIL

My daily call to check on Hubby verified what I had said about his stomach problem was correct.
I find it funny that discussions of bathroom issues are as natural as discussing the weather.
Hubby was feeling better had risen to eat breakfast and was resting when I called.

There seems to be a calm that has settled on the house.
For the last 2 days I have noticed it in BIL too.
He's more cheery.
He sings while he puts his shoes on for school.

This day I tackled a home repair project that could NOT be done while Hubby was here.
Re Grouting the bathroom floor.
I've been wanting to take care of this over due repair for some time now but have not been able to free up the bathroom for the length of time it takes to do the job.
Hubby being away frees up the bathroom (we have another upstairs I can get to) and allows me to devote my time to doing the job as quickly and easily as I can without distractions.

You might think that this is all boring and wonder why I would choose an activity like this for my respite.
I can assure you that this is something I want to do.
Not rushing into a free for all respite week for me was the most relaxing and mind strengthening I could do for myself.
Taking care of me had to be priority number one if I want to care for Hubby.
Knowing this job will be finished is part of taking care of me.
I really am feeling a little more collected and although this job is tedious I do enjoy it.
It's what relaxes me.

Also, I still have caregiving responsibilities for my 63 yr old Down Syndrome BIL.
It's funny though that I never consider myself as a caregiver for him. I've been doing it for more than 17 yrs. He has always been considered as one of my kids. Perhaps because he is of the age equivalent of an uneducated 8 yr old and his care blended with the kids while they were young.
He still needs care just like my children when they were young.  They outgrew it, BIL didn't
That type of care was just being a parent and nothing more to me.
BIL's needs are met. He is encouraged to do everything he can and sometimes pressed to do what I know he can even when he complains that he can't.
He is always encouraged to try something first before giving up and he enjoys the independence and challenges, most of the time.
He is a true treasure to have when he comes.
His care is shared equally between his 2 other sisters and myself.
I have him for the fun months, Sept - Dec. I get all the good holidays :)
Oh, he can annoy me, just like my own children used to, when he gets stubborn or moves my things around and then I can't find something. He takes FOREVER to do anything and his morning slow and my lack of morning friendliness can clash when he must be pushed to make it out the door to catch the school bus. Or when he turns into a Drama Queen over things.
BIL makes me smile more than annoys me though and I love him and I love having him.

Testing the respite waters in my own way works for me.
Knowing respite is available eases my mind for a plan B.
I don't feel so trapped, if that's a good word to use.
Knowing Hubby has adjusted fairly well to his stay assures me he is in good hands.
Prayerfully turning it all over to God to deal with makes all the changes of the week easier to process.

Friday, November 11, 2011

Now What?

Undisturbed sleep has been welcomed, appreciated and enjoyed :)

I called the VA and asked about Hubby.
The nurse said that his notes showed that he slept all night long, woke to eat breakfast. He appeared pasty and complained about his stomach hurting. There was no report of fever. Overall he was fine though.
I suggested that it was possible that Hubby could be constipated because he always feels like that when he is and generally looks ill.
I surprised myself by not over reacting and allowing the professionals to do their job.
It was a feeling of peace that everything would be okay.

I was making plans in my head.
Plans for things to do while I had this time.
I had a million ideas but nothing definite.
I wanted to lunch with so many friends and family. There weren't enough days for those lunches and had there been, I had already gotten rid of my larger pants vowing to not return to them ;-)
I wanted to spend time with the people I loved. I wanted to share the days with them and soak up the pleasure of their company.
So who and what would be next?

It turned out that I was next.
I spent a day with ME.
I went to the beauty shop and had my hair cut.
I did a little Christmas shopping for my boys.
I bought myself a purple sweater and I took time to wander around in Lowe's just looking and dreaming of things and projects that I would be interested in.

You may find this odd but give me a day to wander in Lowe's and I am a happy woman!
I don't like to be massaged or have my nails done.
Show me tools and let me smell lumber.

Thursday, November 10, 2011

2nd full day

For day 2 I had decided I was going to visit our youngest daughter her hubby and our youngest grandson since it was her day off and they had no plans.

Time in caregiving is a very precious commodity.
I must add that I am blessed to receive 10 hrs a week from a home health service which allows me to run errands and to buy groceries to keep the home running smoothly, or maybe I should say, groceries to keep our stomachs satisfied. Either way it works for me ;-)

Hubby and I live in a rural area so our biggest town for BIG shopping (walmart) is 20 miles away.
Now I wont go into the numbers game for time I'll just say that everything that can be squeezed in needs to be during this gift of aide attendance leaving little left over for personal pleasures like lunch with a friend or coffee, although I do try to work it in if at all possible. I have been known to be squealing tires upon my return to the driveway.

That said, being able to go and visit our children is such a very rare thing and getting rarer every day. Our youngest daughter lives more than an hr away so it was always out of the question to be able to visit with her during aide time. She may as well live a million miles away, I am glad she doesn't though.

So I made the decision I would spend part of a day with her.
I called to check on Hubby and see how he was doing. The Nurse informed me that he was doing well. He was eating well and talking to people. They mentioned that he had been up much of the night and was still asleep when I called. I let the nurse know that was a normal behavior for Hubby and asked that they let him know I had called. I stated that I wasn't sure if calling and talking to Hubby directly was a good idea as I was worried I might upset him but the nurse told me to feel free to call them anytime. I thanked her and hung up.

Then I lollygagged so much that morning that I let time get away from me!! It was close enough to lunch when I arrived at youngest daughters and I was not disappointed with the visit. We all shared a lovely lunch. I carried the baby around (like they had a choice), sent bragging pictures of the baby to my oldest daughter and loved on them all as much as I could. Then returned home.
It was a wonderful day.

After BIL came home from school I took a short nap, fed us supper and enjoyed the quiet of the night.
I also took the opportunity to go out and look at the Moon and Jupiter.

Wednesday, November 9, 2011

Day 1

Just a manic Monday for us.
I got Hubby all packed the night before his respite day.
Added the few misc items and zipped his suit case on Mon morning.

We discussed the weather and coat/jacket options.

I brought him his coffee and breakfast as I made sure that BIL was getting ready for school. While they ate I dressed.
I was always the last minute gal for getting ready. We were never late for anything but I was always a right on time person. I didn't allow for delays, just always optimistic there would be none and we would arrive on time.
Hubby was the complete opposite. He was the early bird.
He constantly reminded me of the time.
The time it was, the time we had left and the time we needed to be anyplace.
This always annoyed me.
Now our tables have changed.
I'm the allow for everything gal. I give Hubby a 2 hr window to get ready to go anywhere. BIL needs the same amount of time.
Now I'm the keep everyone moving and be early gal.

An extraordinary feat in the mornings also ;-)

This particular day BIL school bus wasn't making the morning run so he would be a drop off.
Grandson had left his blanket from the day before and daycare would never forgive me if it wasn't returned to him so errand #2 was on the list.
Dog out, loaded the suitcase, the Hubby, the BIL, and tried to remain as calm and collected as possible fearing another refusal to go was looming somewhere in the Lewy atmosphere.

3 miles down the road, remember the weather conversation? Yeah, me too. I had to turn around and get the forgotten jacket for Hubby.
 Pulled in the driveway, jumped out of the car, opened the front door and the dog ran in.
Chased down the dog and booted her out. Back in the car with jacket in hand and away we went for our 70 mile trip to respite , after 2 errands. No turning back now. I had decided anything else forgotten would be purchased on the way.

Once we arrived we were directed to 3 different places the third being the proper one. (Third times a charm)
We were greeted by friendly staff and seated for intake which was more than 2 hrs.
I had the opportunity to educate a couple of the staff about Lewy Body Dementia. I had also printed off laypersons pamphlets and left it with the Nurse asking her to share with the staff.
She had only heard of Lewy Body but was not familiar with it.
I felt confident that she would read it, I want to believe she did.

Hubby was anxious about everything that was signed. He was double assured about every paper.
Once he implied I was just going to leave him there for good.
Bless his heart I know he had to be scared.

At one point he became angry with me because he had more money than the facility wanted him to have on hand. I offered to bring it home and he told the intake Nurse, "She just wants all my money so she can spend it".
The intake Nurse was kind and tried to explain that Hubby really didn't need that much on hand and I was only trying to help. Hubby was angry and threw his money on the table toward me. I gave some back and promised to put the rest up for him to have when he returned home.
I assured him over and over that I would return on Monday.

Lunch came and they seated him in a small dining room.
I helped him with his tray, and while doing so, 2 of the residents decided to get into an argument with each other.
They were yelling and pushing each other then the staff started yelling.
I wanted to look over at them all, point a finger and sternly tell them that we were company and they needed to mind their manners and shut their mouths! But I didn't, I continued to help Hubby.
Another resident sitting close to Hubby told me not to worry "We'll take good care of him"
I smiled and thanked him.
He then told Hubby that it was better than BootCamp. Hubby laughed.

I kissed Hubby, assured him I would be back Monday and reminded him I loved him.
Walking away seemed like the hardest thing ever.
He will be gone for a week.

I cried that night. I did not sleep well.
I keep looking for him and listening for him.

The next morning I called to check on him. They said he had an anxious night but over all he did fine.

That refreshed me a little to hear. The nurse I spoke with said Hubby was still sleeping and I assured her that was Hubby's normal. 

Tuesday night was still difficult but less so.

My first day I was able to enjoy a leisurely lunch with my sister in law.
We did a little window shopping and didn't watch the clock. 
We laughed and it was like old times.
I had fun.

The night ended and there are no angry words or harsh feelings.
The night ended and I missed Hubby instead of wanting to find a place to hide from him.
The night ended and I trust he was in good hands.

Tuesday, November 8, 2011

Scardy Kat

II Timothy 1:7 For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline

Statistically speaking respite care is  vitally important to the health and well being of the caregiver.

Respite care was scheduled for Hubby and I waited until a few days closer to tell him.
He took it well when I presented it as a week of observation and medication review;
Also an opportunity to have his pain in his back and neck cared for.
Hubby was pleased with this idea and was actually looking forward to it.
He thought about a way of escaping me from there.
He told me buses run and he would probably catch one to go into town if he wanted a day out.
I didn't disagree.

Then Hubby thought about it more and he became frightened and anxious.
Our household was filled with anxiety and suspicion.
Angry words and accusations flowed freely from Hubby.

I tried so many times to walk away, walk it off, run it out.
I wasn't always successful in keeping calm, cool and collected.
Some times the angry words spewed from my mouth while my head was screaming to shut up.
Apparently I don't listen very well or learn very quickly.

I NEED a break, my mind heart and body need a break. So I arranged one.
I fought many fears in doing that.
Fear that the new caretakers would not be willing to understand Lewy and medicate him.
Fear of losing more of Hubby to Lewy.
Fear that Lewy would convince others that what he was saying about me was true.
Fear that Hubby would not want to come home.

I coddled a spirit of fear, timidity.
My biggest fear without really being aware of it,
was thinking God couldn't take care of Hubby better than I could.
My faith was lacking.
For me, that was (is) a hard reality.

Sunday night Hubby was very upset.
To the point that he admitted to me that he was afraid.
He even decided he wasn't going to the Hosp.
I felt like respite time was crumbling around me but I remained calm.
I reminded him of all the reasons he wanted to go but agreed that if he chose not to go that would have to be okay and he could just stay here at the house with me.
Later in the evening our son came by.
Hubby beckoned Sonny Boy into the room and had him close the door behind him.
He asked Sonny Boy about going and Sonny Boy, bless his heart, was very kind and encouraging about his fathers stay in the hospital.
Hubby agreed he would go.

To add relief to the house tension, 6 yr old grandson offered his insight to Pappaw.
Sonny Boy and DIL agreed to run an errand for me. I offered them the use of my car and upon their return DIL handed me my keys.
Hubby, observing this exchange, grumpily exclaimed "I don't understand this! She lets you drive her car but she won't let me!" 
To which 6 yr old Grandson sincerely responds, "Well, That's because you're old." 
I had to hide and laugh as did Sonny Boy, and DIL, turned beet red! ROFLOL!!!! 
From the mouths of babes!!!