Moving Day

I don't know how or why it happened but Lewy's lid boiled over splattering everywhere and leaving me an emotional mess.
I did something I didn't think I would. I moved out of our bedroom.

I moved for a couple 3 or 4 reasons.

In Hubby's reality he does not remember me as the woman he married.
He has knowledge that we are married because everyone says we are but he doesn't remember the event or the feelings that he had toward me at the time.
Hubby doesn't want to acknowledge he has problems.
Heck, if you ask him he will tell you he has none and some days, he can sound so logical and do something he hasn't been able to in a long time, even I wonder if he is better.
But reality is, he is not and it only takes a short visit with him to realize he has problems.

I awarded myself a much needed respite about a month ago.
I spent the time with me regrouping and that regrouping came in handy right out of the gate when I picked Hubby up from the V.A. facility.
Hubby, on the other hand, didn't get the time away from Lewy.
No matter where he goes or what he does, Lewy is a clinging shadow for Hubby.

Since Hubby has been home he appeared calmer, or maybe I was the calmer one.
Either way there was calm, but was it the calm before the storm?

Hubby feels isolated and has nobody to talk to or visit with besides me.
Until yesterday, our aide, thanks to the slow moving process of the V.A., had not been reinstated . This was week 3. So Hubby hasn't even had a chance to visit or complain to her.

One morning I woke with a minor headache, you know, the kind that doesn't require meds and at some point will go away completely. It was at this point during the course of our regular routine of accusatory and hurtful remarks from Hubby that my reaction took a dark turn and my mouth ran away with itself.
I won't go into the details and I have beat myself up over it plenty. I couldn't find a stopping point, only a reprieve when Hubby would choose sleep.

Did I shake it off? Did I tell myself, It's not Hubby, It's the disease? Did I walk away and regroup?
No I didn't.
I allowed myself to wallow in the hurt and frustration.
Poor, poor me, what a terrible strain on me, woe is me.
If he would just be more cooperative things would be fine.
I allowed myself to become a victim.
This went on for a few days.
Finally I told Hubby that since he didn't want to be with me and was trying to find a way to leave me I decided I was moving out of our bedroom, and I did.

Oldest daughter came by for a visit.

Side note: Our children are very supportive of us. They understand as much as they can about Lewy. They  love us both and want the best for us both. They let either of us talk if we need to and offer words of comfort, truth, hugs and prayers as necessary.

I was whining to telling Oldest Daughter about my hurt feelings and how abused and taken advantage I was feeling. I said I was moving out of the bedroom.
I said that the continuous anger Hubby has towards me and my increasing frustrations and defensive attitude were not a good environment.
Oldest daughter agreed moving out was a good idea and made a simple comment about it that struck a chord, she said it couldn't be a good environment for either of us.

I chewed on that for a while.
I was so busy wrapping myself up in myself and trying to fix things that I lost sight of Hubby.

Hubby's Lewy Body Dementia has stolen his memory of me as his wife. I have said this before.
Even though he knows we are married, he has no memory of that happening and he has no memory of the feelings we had for each other. Most of the time I am a stranger he is married to.

He has nobody to be angry at for his dementia. His mind is slipping and even though he won't REALLY admit it, he does know.
He sometimes speaks of his death hoping it comes soon. Sometimes through man tears.
This breaks my heart for us both but oddly I understand.
How would I feel if I were him?

I have tried to make our union work by trying to remain physically close to Hubby.
I moved my comp into our room and rearranged the furniture so that he would not feel so alone.
A  feeling he himself expressed at one time.
I was close at hand in case he needs anything or wants anything.
In case he needs assistance with walking or balance.
In essence I have chained myself to him and perhaps I am suffocating him while trying to silently persuade him that we are a married couple.
But this relationship is not the 'norm' for what Hubby believes a marriage should be so he rebels.

Maybe his anger is directed at me because even though I am all he has, I'm the one reminding him of what he can no longer do, like driving, or living alone.
Maybe I need to step back to make the situation easier.

My caregiving friend Bette, who care for her mother with dementia, made a very insightful statement about her mothers care in her blog post
She wrote
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."

In our home it is time to ease the anger, from us both so we can move forward in our dementia life.
This disease is robbing us both of precious time and we are wasting it by being angry and argumentative.
I can't fix it, so I must learn to manage the situation for us both even if it means being apart to do it.

I'm still close just not in constant view.
I keep my video monitor on so I can see Hubby .
He knows I am  just around the corner from him so I can hear him if he needs me.
He is ok with this situation.

For me the situation is heart hurtful. I don't like it one bit but I can't fix it, so I think for now, this is in our best interest as we mange Lewy Body Dementia.
So I shall repeat Bette's tender and gentle words,
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."

***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.
sigh.

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.

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 :)

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.

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.

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.
Ahhhh!!!

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.