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.

Thursday, December 22, 2011

No sick days

Caregiveing, at least in my house, has no sick days.

So what's a gal to do?
I suppose whatever it takes, and take whatever you have.

Seems like a cold attacked me and beat me up.
I've been fighting it with all I have.
Day meds, night meds, allergy meds, cough meds, whatever it is I hope to conquer quickly.

Caregiving has been pretty lax though. I'll pick it up later, Just wipe the shirt off, it will be fine etc.
We eat sandwiches and soup. Easy fixes but filling.
Needs continue and must be met.
They seem at times petty needs though, "Really, you called me in here to help you find something that is sitting right in front of your nose?" But those thoughts only got expressed silently.

Before the attack of the cold, Hubby and I promised to run an errand. It was going to be a spur of the moment type so we needed to be prepared for the call. When the call came we were close but not completely ready for walking out the door.
BIL was finishing his lunch and had to leave it mid bite to put his shoes on.
I helped Hubby put on and button his shirt.
While Hubby made a bathroom run and I started the car for warmth, retrieved his coat, placed the wheel chair outside the front door for Hubby to ride in to the car and told BIL to get a coat.
Hubby came out of the bathroom and shuffled slowly to the front door.
We managed to get in the car and head off to our errand.
I chose to leave the wheel chair behind as this was just a "quick" errand.
Hubby agreed.


Seems that once we reached our destination and I took care of our errand, as we were pulling away, Hubby decided he needed to use a bathrom.
silent medicated screaming: YOU HAVE GOT TO BE KIDDING ME?!
We pull into a gas station and it dawns on me, I have no chair.
more silent medicated screaming: GREAT KATHY!
I remind Hubby we have no chair
Hubby thinks he can walk and he can, about 5 ft and then has mobile meltdown. UGH!
Mental meltdown wasn't too far behind.
BIL was in the car, I suppose waiting for directions to get out, Hubby began to worry that his brother was in the car.
Trying to help Hubby walk and stay on task was proving a challenge.
Hubby complained he needed to get inside, yet every time he talked about BIL he stopped walking and then started just staring.
We were getting nowhere fast so I told BIL to get out of the car.
Hubby then wondered what BIL was doing.
I'm almost pulling at this point and told him not to worry about BIL I had it taken care of.

Shuffle, stop stare, shuffle stop stare, urgent need expressed, shuffle stop stare.
The walk seemed like forever
I told BIL to sit in a booth and wait for us.
God bless BIL for being so obedient and patient.
Even though I had a vice grip on Hubby, he held or tried to hold everything in his arms reach.

A short hallway found us blocking another gentleman from getting in, we yielded the way and met the man again on his way out.
At this point Hubby had a need to explain to the gentleman that he usually has a wheel chair to use but it is at home.
I try to encourage Hubby to keep walking and holding tight to me or using the wall for support.

Mission accomplished and now the long trek back to the car.

Just read the above story backward.

Once we got outside BIL headed to his side of the car to get in.
It was then I noticed,
BIL had on 2 right shoes.
Now it was time for me to stare.
And you know what?
I didn't even care.

The up side to this is that BILs shoes both belonged to him.

Thursday, December 15, 2011

Good News / Bad News

Good News- Hubby got a hospital bed to make life a little easier for him/ Bad news -We have progressed to needing a hospital bed.

The V.A. supplied the new bed AND a bed table / The bed requires special sized sheets

They make special sized sheets!! / They don't sell them at Wal Mart, bummer.

They sell special sized of sheets at Penneys!! / They only had girly style in stock for that size.

It's fun to see Hubby sleeping on what I consider teen girl sheets / Hubby doesn't have a "cute" blanket to match ;-)

I can order more solid color sheets that are more fitting for a 74 yr old man / They will be dull.

Finally rearranged the bedroom furnishing enough times to make room for everything and safely move around/ Rearranging threw Hubby into a state of serious confusion. : /

Told Hubby I would move back into the bedroom for sleeping. He was very pleased with that decision and said he was lonely sleeping in there. /   No bad news here. :)

Friday, December 9, 2011

The Best Worst Dr Appointment

Lewy had a Neurology appointment the other day.
Just a follow up.

We took the 70+ mile trip in morning traffic.
I really dislike early morning appointments. It takes a GOOD 2 hrs to get us ready to walk out the door. Then There is the car loading of Hubby and wheelchair. The weather was just chilly but I brought along heavy coats , just in case. Double checked we haven't forgotten anything. I keep a duffel bag of undergarments, extra clothes, handiwipes, paper towels and water in the car at all times but I still check to see if it's there.

We made it with plenty of time for the pit stop and be on time for the appointment.
Of course WE have to be on time but the V.A. schedules so many appointments at once we never seem to get in to see the Dr on out scheduled time, even if it is an early morning appointment.
We are very good at hurry up and wait.

Neuro Dr, whom we really like, comes out to greet us and escort us to his examining room.
Once inside he begins asking Hubby how he is, making comments about his appearance and asking about Hubbys life in general.
The appointment started off slow and easy enough and I was thinking this appointment would be the same as all the others. Hubby would pull it all together and pull a "showtime" move, but instead, the appointment  quickly degraded when Lewy went into his diatribe about how he was being taken advantage of and I was stealing from him...in essence, Hubby acted in the same way towards Dr Neuro, that I must live with every day. Hubby became angry with Dr Neuro when Dr explained that he believed Hubby was getting the best care.
Dr Neuro was very very kind and compassionate towards Hubby but very forthright about Hubby's Lewy Body Dementia limitations.
Dr Neuro told Hubby that he wished so much that Hubby would stop expending so much energy on anger and concentrate on enjoying the rest of his life.
Hubby was having no part of it and the angry words continued.
Dr Neuro looked at me and I said, it's like this every day.

Hubby complained about his life and about me and he told Dr Neuro that as soon as he got home he was packing his things and moving.
I lapsed into silent tears.
Then, Dr Neuro made a statement that made me have to stifle a laugh.
He agreed that Hubby could go home and pack but "All you will accomplish is having your clothes in a suitcase."
Dr Neuro told Hubby that he believed Hubby was getting excellent care. He said he was neatly dressed and well groomed ( gold star for me and I liked it) He appeared well perhaps had a little "biscuit poisoning" going on in his belly as he reached over at Hubby. I of course turned my head, sat up a little and sucked in my gut to hide a little of my own biscuit poisoning. ;-)
Dr Neuro let Hubby talk as long as he wanted yet all the while assuring him that he (Hubby) was being well cared for and we were all doing everything in the best interest of Hubby.

Did I mention how much we like Dr Neuro?

Dr Neuro also told Hubby that there were only 2 choices for Hubby.
Stay where he is, or go to a nursing home.
He asked Hubby if a nursing home was what he wanted. Hubby said no.
He then clasped Hubby's shoulder and said, You should appreciate what you have. Go home and think about these things, it's the best for you.

He asked Hubby to do a few things and tested reflexes and limb movement.
We discussed meds and agreed that we are as far as we can get with meds.
I expressed my thoughts about Hubby's difficulties rising from bed so we, Dr Neuro, Hubby and I, all agreed a hospital bed would be a good idea.
They should deliver one in a couple of days.

Dr Neuro also decided that at this point physical exams are no longer necessary BUT they would stay on call if I felt we needed them. They would be happy to help us in any way possible.

I was sad that Hubby had such a bad time at the appointment .
I was happy that Dr Neuro got to see Hubby as he really is.

I was glad to know I would not have to get Hubby prepared for such long trips for appointments.
I was saddened that we had reached this point.

The ride home was silent.

Tuesday, December 6, 2011

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."

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.