Living with a Thief named Lewy Body Dementia

Treading Water

2012-02-16T21:55:00.000-06:00

Feels like Hubby and I have been treading water for quite some time now.
Although we are still moving along in the Lewy Body Dementia waters at least we are not being sucked into it's undertow.
That's a good thing.

We still have cognition problems.
Just last night Hubby asked SonnyBoy where we were.
Hubby was obviously concerned and SonnyBoy got concerned about his father's state of confusion and obvious fear and relayed it to me.
Since I see this so much I suppose it's a normal question to me.
I went to Hubby and asked if he needed or wanted anything, meaning I give him yes or no questions.
Do you need a blanket? Can I bring you some water? Lemonade? Would you like cheese with crackers?
Are you feeling ok?
Hubby can answer these types of short sweet questions.
He asked me where we were and I assured him we were at our home.
Hubby's response, "That's what I thought. (SonnyBoy) didn't know where we were and I didn't know if maybe we got kidnapped or something."
I laughed and so did Hubby, then I hugged and assured Hubby nobody had been kidnapped and retrieved a snack for him.
All was right with the world again.

Mobility is getting worse.
Hubby struggles more and more with walking but is still able to get to and from the adjoining bathroom. He has limited the number of times he goes though. That reminds me, note to self, buy more laundry detergent.
Sitting up is also very difficult for Hubby. He falls over because he cant sit still.
The Parkinsons type symptoms of his Lewy Body have increased to a frustrating degree for Hubby.
Unfortunately the meds in the past we have tried for Hubby's shaking have not worked.
So he must live with the shaking. In order to combat it, he stays horizontal; even when I wake him to eat.

I think this activity stresses me a little for choking possibilities and I have expressed my concerns about it so as a compromise, Hubby lays on his side to eat and drink.
I even tried to get him to let me raise the hosp bed for him but he doesn't like the bed up, sigh.
Since there is no serious issue, pick and choose your battles with dementia.

I feel fairly confident to say that we may have been able to get Hubby's back pain to a manageable level with the increase in meds. He still has pain but at least he isn't complaining as much.

Hubby hasn't been trying to figure out ways to get away and his attitude toward me is softer. Even very dependent at times. There are times I will hear him call out to me in a distressed tone. I will hurriedly go to him only to learn he didn't know where I was and got concerned. My presence eases his distress for which I am thankful. Of course that isn't to say he doesn't get cross and suspicious, just not as much.

So here we are, treading water, staying afloat for the time being and every now and then, I can touch the bottom and stand up to rest.

More Boys

2012-01-26T22:35:00.001-06:00

Last night Hubby needed and asked for assistance with his bed covers.
As I was hovering over him he asked me if there were people in the house.
I answered no, there were not.
This question is common but it came with a different tone for Hubby.
He then stated that he hears a lot of background talking.
I stopped fussing with the blankets and assured him that nobody was here.
I reminded him that hearing voices was a symptom of his Lewy Body Dementia.
I also said that hearing voices or even seeing things like people or animals could happen.
Hubby didn't care for my explanation too much and scowled at me.
I fussed with the blankets some more and made sure Hubby was covered up and warm.
I suppose I was taking too long when Hubby announced that my doing that was bothering him for some reason. He didn't know why or what but it was really bothering him.
I think it was from the scowling.
I backed off and gave Hubby some space and a concerned smile.
The rest of the evening was calm.

Tonight Hubby called for me and when I entered the bedroom he was sitting on the side of my bed.
He had a look of confusion so I asked if he was ok.
His reply was no, yes, I think I just saw grandson.
Hubby asked me if the boys were here.
They are not.
Hubby was very convinced he saw one of them and I assured him that I believed he really did think he saw them and I explained again about his Lewy Body and its ability to make the brain believe something was there when it really wasn't.
Still obviously upset, I asked Hubby if he was okay?
His answer was that he was trying to get a snack from the kitchen but seeing the boy in the bedroom made him have to sit down and make sure of what he saw.
I asked Hubby if he was frightened by it.
He answered no, just confused.
I offered to get a snack for Hubby and he happily accepted.
I asked Hubby to always tell me if he sees something and has questions about it or is frightened by it.
He said he would and shuffled off to his bed.

Auditory hallucinations have been around for a while here.
Some visual but Hubby has always been able to shake them off as, that can't be real, or, tricks of the eyes.
Last night and tonight they had a very real presence to him.
I pray that I will always have the words to assure Hubby and make him happy with an offer of a snack.

Except for these incidents, things here have been fairly smooth and steady.
I like smooth and steady.
Hubby has been in good spirits and calm.
Little to no anxiety.
New pain meds seem to be helping with no serious or odd side effects. A little more tired perhaps.
I have no complaints
And neither does Hubby
WAIT-
On second thought, Hubby with no complaints? Maybe a few odd side effects but I can live with them ;-)

This is all about me.

2012-01-20T20:31:00.000-06:00

I'm a caregiver statistic.
I eat poorly,
I haven't seen a medical Dr in 5yrs maybe more,
I don't exercise regularly,
I put my own self care last or completely ignore it until it screams for attention,
I was 4 yrs before I used any respite time that the VA had available.

I do not suffer from depression, and I try to avoid it in all forms, but I do have some anxiety at times. Especially when significant and sudden downturns come.

I can tell I'm a little snappier in my responses to others.

My mental health is hanging on. For now.
My physical health is another story.

I'm a terrible self motivator.
Just take one look at me and my house and you will see that.

I've tried the home exercise and home hair cuts and home cooked meals.
I use my stability ball as a seat, I think I can rock a pony tail and since I found Schwans home delivered food, well, need I say more there?

I feel bad when I can't stay on course for myself.
I feel bad when I wish for more time away from Hubby so I could do some things I want.
I have learned the value of time. It is a precious commodity when it's in short supply for yourself.
As a 24/7 caregiver all the time is Hubby's except the 8 1/2 weekly hrs I get through the V.A. for an aide.
in this 8 1/2 hrs errands must be run groceries must be purchased, travel to and from must be included and where we live its a 20 min trip one way to our largest store, etc etc. I must find a way to fit in all the things I HAVE to do and still find some time for me in there. Occasionally I get a lunch with a family member or friend. Hurriedly of course but I still do it. Think about the expression, Eat and Run :)

Now this all sounds mighty whiny of me. But that isn't my intent here.
I am very blessed to have this time.
I know what it's like to have none, especially when the VA doesn't renew Hubbys Aide service for a month! breathe in, exhale slowly ahh

Available family have filled in for important things and run errands if I ask, so again, I appreciate the knowledge I can call when I have to.

But I don't like being a statistic. It's happening though and I can tell.
I thought of all the ways I could prevent it. I started doing small things, walking/jogging in the driveway.
A dual trip to the eye dr, Hubby was there so I squeezed in too.
Much needed dental work. (Remember the neglected self care and screaming, almost losing a front tooth due to neglect is a screaming issue ).
And just the other day, after much consideration and serious thought, lots of praying, mostly consisting of please let me find a way!, Weighing all the odds and planning the timing more than once, it occurred to me, I can start working out again! The gym I was once a member of had relocated several months ago. Their new location is ideal for me and my errand needs. Grocery store, drugstore and place to get my oil changed all within a stones throw! I am SO EXCITED!
Today was my first day back in 4 yrs! I was able to get my workout in AND pop in at the grocery store (right next door) with time enough to get home and not feel like I was running through myself :) it was a glorious feeling.
A funny thing happened at the store, I grabbed a cart, made a quick run through produce, went up the soup aisle rounded a corner and BAM wobbly legs got me and my knees buckled. LOL! I didn't fall down and was able to upright myself in plenty of, save myself from embarrassment, time. Good thing for shopping carts! I thought it was funny and I can't wait to get back to my workout Mon!

Now if a hairdresser would move in close by...

Conversations

2012-01-15T15:08:00.000-06:00

Conversations around here can be hilarious at times.
Our struggle can range anywhere from unfinished sentences to incorporating parts of other conversations in the present ones.
For instance, when I passed by Hubby's bed, I reached over to get a small blanket and he flinched saying he thought I was going to touch him with my cold hands.
I assured him "I'll give you advanced warning before I do that".
Then I asked him what he wanted for lunch and went down the list, one at a time, of yea or nays.
No, was the word of the day and when I got to hamburger he said , "I need advanced warning".
After a moment to process this, I took this as a no and offered PB&J, it was yes.
I wonder if he doesn't like my hamburgers. Hmm LOL!!!

Blub blub blub

2012-01-06T16:52:00.000-06:00

Day 6 in the new year and I we are holding our own.
Hubby seems more content, less agitated. These are VERY good things.
Yet, I keep waiting for the jack in the box to jump out and scare me.

The Holidays came and went with little fanfare.
We kept it simple in many ways while still enjoying our family.
Hubby even participated in the family Christmas Eve gathering this time :)

New Years Eve came and I was a day behind wondering why everyone was celebrating early.
Half of the day was gone before I realized why. LOL
Hey, in my defense, all the days are the same around here.

BIL's time with us was over and he left to stay with his other sisters. He will return next Sept.
He is always quiet and when he isn't in school you would hardly know he was in the house but when he is gone, there is a hole left behind. We will of course see him as often as possible but his absence is felt in our home.

The Shaking that comes with LewyBody has increased enough to cause Hubby more neck and back pain.
In the past we have moved slowly and sparingly with pain meds.
I always fear meds because they seem to have a negative effect on Hubby's cognition.
In the past, fear has kept me holding off more aggressive treatment in pain management. Although I still have concerns I wonder, What I was holding Hubby back to? The tug of war of emotions to hang on or let go is emotionally heartbreaking. I had to decide that Hubby's quality of life was more important than my desire to "keep" him. Helping him stay as pain free as possible became top priority and the best care I could give him.

Meds were changed I am still watching for side effects but happy to say I haven't noticed anything distressful. YAY!!
Downturns still come but I have not necessarily contributed them to the new meds as they have been coming all along anyway.
Words are difficult to find. Hubby confuses easily.
Word recognition is diminished more.
Conversations are harder and sentences must be kept shorter. I struggle with that. :/

Hubby has started drinking his coffee in a laying down position. and eating his breakfast in the same manner.

Last night Hubby had mobile meltdown. Around 3:30 AM Hubby opened our adjoining bathroom door. He has done this a million times but this time, the sound woke me. I only stirred enough to see the time and be annoyed at being awake at that hr but something else said, something is wrong. Sure enough, I saw Hubby standing in the doorway, clutching the frame unable to move.
God has perfect timing and an acute alarm clock.
The longer he stood there the more he leaned forward and fear of him falling pushed me out of bed and to his side for support. It took all we had to walk (drag him) the few feet (6, I measured) to his bed and get him in it and settled. He couldn't remember how to walk.

Today he is struggling to sit on the side of his bed and I was able to convince him to let me raise the hosp bed to sitting up and placing his table in front of him.
So far, it's working.

The biggest change in Hubby has been a noise he now periodically makes.
quite loudly he will make a sound that is familiar to a fast "BLUB BLUB BLUB"
He makes this noise on occasion and mostly when I am busy in the room.
Perhaps a way of releasing frustrations and at times a way of getting the attention of our grandsons as they enter the room.
Sometimes I find it amusing and other times not so much when I'm trying to watch something on TV.
I do always ask if it helps him feel better to get that out :)
Somehow it reminds me of his mother. When we cared for her, she would make noise similar to that of a goat bahhh. Given a choice of sounds, I'll take a blub over a goat ;-)

Not every change is bad though.
The best change in Hubby has been his attitude toward me.
I can't say if it is because if Dr Neuros straight talk with him, or our straight forward talks here at home.
Whatever it is Hubby has been kinder toward me to the point of making an extra concerted effort to come and give me a kiss goodnight each evening.
And closing on the best note, One night we lay in the dark, in separate beds I said, "Goodnight Honey, I love you."
He replied, "I love you too, more than you know."
PRICELESS!

No sick days

2011-12-22T20:13:00.000-06:00

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.

BIG MISTAKE!

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!
NEVER LEAVE THE CHAIR BEHIND!
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.

Good News / Bad News

2011-12-15T12:29:00.000-06:00

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. :)

The Best Worst Dr Appointment

2011-12-09T19:24:00.001-06:00

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.

Moving Day

2011-12-06T17:44:00.000-06:00

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

2011-11-22T13:40:00.000-06:00

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

2011-11-14T19:29:00.000-06:00

"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

2011-11-13T19:21:00.000-06:00

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

2011-11-12T19:15:00.000-06:00

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?

2011-11-11T20:02:00.000-06:00

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

2011-11-10T20:28:00.000-06:00

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.

Day 1

2011-11-09T18:03:00.000-06:00

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.

Scardy Kat

2011-11-08T21:19:00.000-06:00

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.
Until,
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!!!

The Days of our Life

2011-10-25T10:23:00.001-05:00

Thought I would share a few smiles that came our way over the last couple weeks.

While talking on the phone with our youngest daughter one evening, Hubby decided to talk to me too. He saw me with the phone to my ear and even asked who I was talking to. Our daughter sent her love which I forwarded and he returned. He continued talking and asking me questions about nothing in particular until I finally told our daughter I had to let her go so I could concentrate on what Hubby was saying. When I hung up, he said in a disgusted tone "Oh, you hung up on me!" then he stopped talking!

~~~~~~~~~~~~~~~~~

Hubby is completely shocked one night when he learned my last name is the same as his but he thinks I'm pulling his leg! ROFLOL!!

~~~~~~~~~~~~~~~~~

You know you're a caregiver when you let your 3 yr old grandson help take care of Pappaw by holding and trading off care supplies . When the job is finished, you tell your grandson "Good Job!" and the two of you High Five as he exclaims, "That's Teamwork!"

~~~~~~~~~~~~~~~~~

Very early one morning I was trying to get a cup of coffee down when Hubby gave me my "orders" for breakfast. When I walked in the room with the sausage biscuits I noticed he was sleeping. The thought crossed my mind it yell very loudly "ORDER UP" but enough of the coffee had kicked in to combat that feeling. #lovemymorningcoffee

~~~~~~~~~~~~~~~~~

FINALLY decided to paint the wall in my bedroom today! Now Hubby and I are watching paint dry and seriously, it's the highlight of our day because we noticed a spot I missed :)

~~~~~~~~~~~~~~~~~

Interesting evening here. Hubby thinks it's morning and try as I may he will not be changed. Oldest daughter called and even she tried to speak to him on the phone but he told he he didn't like to talk that early in the day. LOL!! He thinks it's funny that I served him supper instead of coffee and breakfast. He's even asking if Brother in Law thinks it's funny to have soup before he goes to school.I believe that to Hubby, it's funny and he is humoring me in my mistake ROFLOL!!!

~~~~~~~~~~~~~~~~~

Completely agitated at myself for putting something in the oven, setting the timer and walking outside getting occupied!
No burn up when time dawned on me but the timer was beeping like crazy and Hubby and BIL were just standing in the doorway. I nearly knocked them down to get to the oven sputtering that nobody came to get me!
Hubby, after saying "huh?" several times, didn't know why he needed to get me and BIL just started at me.
Frustrated I barked, "Didn't you hear the timer?!"
Hubby said "No"

I asked why he was standing in the door.

His answer, "I didn't know where you were.
I still sputtered as I removed the food. then Hubby annoyed with me said "I don't know what's wrong with you."
AGAIN I repeated my frustration and walked away from them.
Hubby called me back and said "Honey, I love you"
All I can do is laugh. ROFLOL!!!

~~~~~~~~~~~~~~~~~

Trying to get me (limited coffee) BIL (Mr slow poke) and Hubby (Mr "Huh?") all corralled into the car for a Dr appointment this morning was like being in an episode of the 3 Stooges. Finally got BIL to school and Hubby to the Dr.
By the time we got there Hubby was wound up and acting silly. He asked for extra assistance to get out of the car so I reached in and took hold of his hand while I braced the wheelchair. He leaned forward, gave me a sly look, let go of my hand and fell back into the seat. Then proceeded to whine like a child "Ohhh she let go of me and made me fall back, she's abusing me" then started laughing like a little girl!
I started laughing and tried to help again but my laughter made me lose my grip and then he did fall back into the seat.
More "Whining" about a "boo boo on my finger" and more laughter.
MAN what a morning!! Came home and took a 2 hr nap!

So you see, it's not all bad around here :)

Anniversary ..of sorts

2011-10-20T09:23:00.000-05:00

Oct 18 was our anniversary.
Not the wedding type, the diagnosis type.

4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.

At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS.
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia.
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.

You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.

Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.

I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<

So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.

That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.

One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.

My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)

A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.

Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.

I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!

Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.

The possibilities are many.

Should I feel bad that I feel good about this?
I'm conflicted.

Then there is the flip side.

I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.

Should I feel anxious about this?
I'm again conflicted.

So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!

Is this the party to whom I am not speaking?

2011-10-11T18:32:00.001-05:00

I think I'm sick.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.

CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).

YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.

I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.

What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?

And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,

again.

I don't know if my heart could stand it.

This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.

Still kickin

2011-10-07T09:53:00.000-05:00

The passing of Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.

What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!

The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.

I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.

During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.

Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.

But wait! the party didn't end there.

Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.

Anyway,

I prayed for Hubby to just go to sleep, I prayed for the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.

My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and peaceful.

Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.

It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.

Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.

I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.

Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.

I haven't blogged for what feels like an eternity. I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.

On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)

A few funnies that happened I shall share from my FB status

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you"
He says "What?"
I repeat, he says "What?" Through laughter I say it one more time.
Huobby says "Oh, she's like me, huh?" LOL!!

I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what?
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!

Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :(
Got out of bed at 4:20
poured coffee at 4:30
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)"
My response, "Yes I need to get them to the cleaners"
He asks, "You need to get what to the cleaners?"
I stare at him thinking, seriously?!
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since.
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally

It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do."
Seriously Hubby?!?! I love you too!! LOL!!!

See it's not all bad :)

Hubby's Personal Loss

2011-09-24T19:15:00.000-05:00

On top of all of Lewy's problems that plague Hubby, Hubby has had some personally difficult days.
Hubby and I went to see a friend who was gravely ill in the hosp and after they moved friend to the Hospice wing. Time constraints and other responsibilities prevented us from visiting one more time, then it was too late.
Why do we always think we have one more day?

Hubby has taken the loss of his friend hard.
I'm at a loss to be able to console Hubby because his delusions have kept him angry at me.
Why would he want the comfort of someone that keeps him 'trapped' and 'steals from him'?
So I look at him sympathetically and speak soft and kind words.
It's the best I can do.

The visitation and funeral have been a lot for Hubby to process.
Tonight he is very very confused of day and time.
As I brought Hubby his supper he asked what day is was.
He repeated my "Saturday" response with a questioning tone.
I confirmed he was correct, it is Saturday.
He wanted to know why it was Saturday.
It just is, was the only answer I gave.
When I set his plate down, he couldn't understand why we were eating.
I explained it was time for supper but was having a difficult time getting him to understand what supper was.
Eventually he clicked and ate his supper

It breaks my heart that Hubby feels confused sad and alone.

I am in hopes that he will follow through on the advise of his social worker and attend the Sr Center and participate with others. Our plans to do this have failed twice. The most recent time, Hubby woke, ate breakfast, conversed with me and I gathered his shirts for transport to the cleaners. Hubby likes his shirts starched at the cleaners. He dressed and laid down and wouldn't wake up in time for us to leave.
Oh well, better luck next time.

If at first you don't succeed...

Thank You Hubby

2011-09-20T19:58:00.000-05:00

Listening to the radio in the car with Hubby today made me think back.

Shortly after Hubby and I met, We decided we wanted a different life path for ourselves.
I wanted it for me as well as for him.
Have I always been the most perfect wife?
(insert laugh here) No!
Has he always been the most perfect husband?
No, and if you need details let me know ;-)

But I can honestly say, I don't know where I would be had I not met him.
I know my life is better than the choices I was making and I think I am a better person because of him.
And sometimes in spite of him.
Even with our ups and downs and deep pits he is still the man I love beyond reason.

Wanted, Dead or Alive!

2011-09-17T16:15:00.000-05:00

For the last few days sleep has been fleeting during the night for various reasons.
Cool temps, crick in my neck, staying up late, Hubby's busyness, worry that I would not wake on time for something so I watched the clock all night, sleeping with my hand curled up under my chin putting it to sleep and then at some point moving it and it wakes up (I don't know why I started that sleep habit), etc
That makes for long days and nights and leads to mental and physical tiredness.
Oh, I'll eventually catch a nap for "a few mins" and find I've slept like a rock for a few hrs. A couple of times like that and I'll be all caught up.

Last night was no exception but I slept/didn't sleep for a longer stretch of time. Headache tired put me in bed before 9 PM and I finally crawled out at 8 AM. I argued at the clock every time I opened my eyes and looked at it. "I am NOT getting up!" I guess I told it! hmmph!

Dreams were crazy too! I will chalk this up to a 3 hr trip to a funeral. The sheer emotions of everyone and the 3 hr trip back and the car conversations. I dreamed that everyone I encountered had to hug me, no, embrace me. The long, clinging, tight, don't want to let you go, kind. Sometimes the embrace was very sensual.
(Note to self, stop watching so many back to back episodes of "Bones" if you want to keep the men out of your dreams)
I woke while packing backpacks for those going on a trip. I didn't know where they were going but apparently they needed hamburger meat in patty form.

Our son, SonnyBoy, stayed with Hubby so I could attend the funeral. I tried to make it as easy, comfortable and convenient as possible. I made Hubby hamburgers the night before for his lunch (that's where that thought came from).
I made SonnyBoy a time sheet to get BIL on the bus for school.
BIL is Hubby's 63 yr old brother with Downs syndrome. Our annual 4 months of his care began the first of Sept. Hubby's 2 sisters and I share BIL 4 mo of every year. We have done this for several years now. It's funny but I never considered having BIL as caregiving. He is just "one of the kids" and I have always considered it a pleasure to be able to have him. He makes me smile so much and is a treasure.

So SonnyBoy takes over the duties and for the first time in more than 3 yrs, I am a vast distance from Hubby. I just wish the circumstances had been different.

Back at the ranch...
I woke fully from my sleep and looked over at Hubby.
I hear his breathing, not labored and I could see his chest rising and falling in rhythm.
He was sleeping calmly.
I need coffee.

For the last 2 days I have had something rolling around in my head.
The words of another have stirred deep feelings.
I'm NOT jumping on a lynch mob wagon but I do need to get MY feelings out.

By now everyone has heard about the advice Pat Robertson gave.

Mr. Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the incurable neurological disorder.

"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Mr.Robertson said.

He also stated he wouldn't "put a guilt trip" on anyone who divorces a spouse who suffers from the illness, but added, "Get some ethicist besides me to give you the answer."

When asked by Terry Meeuwsen, Mr. Robertson's co-host, about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."

The answer Mr. Robinson gave was :

"If you respect that vow, you say `til death do us part, but this is a kind of death."

As a spouse to someone with dementia this is how I (emphasis) feel about this.

From the worlds perspective as opposed to my beliefs and faith I first understood when he basically said, if you were going to find a relationship outside of your marriage then you should get a divorce BUT make sure the ill spouse had a caregiver.
I understood it as much as I understand the thought, If you're going to continue to have an affair (whether your spouse is ill or not) you might as well get a divorce.

I also understood when he said he wasn't going to put a guilt trip on anyone who divorces an ill spouse.
I know it is very hard to be alone and have the same desires and needs, physical and emotional and not be able to fulfill those with your spouse.
Neither am I going to judge anybody for their actions. This is not my place. I don't know how they feel or what they are experiencing. I only know me and my experiences. We are all different with different needs wants and desires. Some people, for whatever reasons, can not be alone.

In his final sentence, I tried every way to re read into what Mr Robertson said. Maybe I misunderstood. Perhaps he meant something else, but there was no further explanation. I can only think Mr Robertson's answer was based on a worldly view. (Again, as opposed to my own beliefs and my faith).
A view that can give us excuses for what we want to do or not do.
But what I do not understand, either from a world view or my own beliefs is how Hubby can be considered dead. I can find no excuses to lead me to accept or believe that Hubby is dead.
I even looked up the medical definition of death here.

I watched and listened to Hubby breathing all on his own this morning.

Lewy Body Dementia can be kill many things I think.
Hubby's mental loss as it continues is like a slow death but he is not dead.
Lewy takes away many of hubby's daily living activities.
We must make adjustments to make what is left of Hubby's life more comfortable, convenient and provide for him the best quality we can. He is still alive.
So alive he ordered breakfast this morning.

Does he remember who I am? No not really, He knows I'm Kathy, he knows we are supposed to be married, he knows I take care of him but he does not remember we got married almost 30 yrs ago.
He does not remember that the things he talks about in our past include me.
He is always surprised when he talks about something and I say, Yes I remember that. He wants to know how I remember it LOL :)

He remembers our children.
He knows I am their mother, but he can't connect us together with them.

He doesn't believe he lives in his own home.
He keeps talking about moving and going to his Mother's home.
It is one of the last places he remembers living at.

He can't walk far, just a few feet, we use the wheelchair quite often.
He sleeps much of the time.
He complains that I am stealing from him and keeping him trapped.
He says me and Kathy and the other one whom he can't remember, are tricking him. (Me myself and I)

Does he always know what he's takling about?
No and neither do I.
He gets anxious and sometimes he cries.
He talks about his death and sometimes I have no idea what to do for him so I hold him for comfort.

All of these things are done by a living and breathing person.
He isn't dead.

The funeral I attended, the man in the coffin, he was dead.
I did not experience the rhythmic breathing from him.
I'm pretty sure of it.

Is dementia easy to live with?
No.
I whine and complain about it too.
Do I have the same relationship with Hubby as I had before?
No.
My partner and I can no longer have the same intimate relationship.
We can't plan for the future like had once did.
I have no sounding board for concerns and there is nobody to turn to for physical or emotional comfort.
I have no pillow talk friend.
My help mate isn't able to do simple things like bringing home a gallon of milk on his way home.
My chauffeur is retired so my back seat driving has turned into actual driving.
My security from car problems is now unavailable.
My scary thing hero can no longer kill the bugs and chase away the opossums.
My protector now needs to be protected even from his own choices and mishaps at times.
I have to think for 2 and react for 2 and care for 2.
All of this and much more has been lost.
I get lonely for my husband.
I miss his physical touch and the fulfilling of our desires for and with each other.
It might feel like someone died sometimes. Grief can creep at every loss.
Yet Hubby is very much alive.

For me, I made a vow, a promise, not just to my spouse, but to myself and to God.
I choose to keep my word.
I don't do it because I have to, I do it because I want to.

Lewy's Anxiety or Mine?

2011-09-13T11:38:00.000-05:00

I sometimes wonder if the additional anxiety belongs to Hubby or if it's mine.
Mine, because I'm anxious to lessen Hubby's and have thus far been unable to do.

I've sought out advice and council from the experts (Drs) and the experienced from the trenches (other caregivers)
I meet Lewy head on at times with his bullheadedness and uncooperative attitude and mine with my continuous prompting (could also be construed as nagging).
Some how I need to find a solution. I'm thinking along the lines of less nagging.

My preferred "go to" site for Lewy Body support and advice is the Yahoo spouse group
I am NOT saying that any experience or advice that other (non spousal) caregivers can offer isn't appreciated or valued. it IS! I just know that caring for a spouse is different compared to caring for a parent, grandparent, other family member or friend.

But, I'm grasping now for a place to turn to make it better for Hubby and in the end result me.
This is the question I posed to others.

"Would a social worker or counselor be of benefit?
I'm afraid of new meds and their side effects but is there something others have
found beneficial I can ask about? I worry he will be fast forwarded with meds
but what am I actually holding him back in?
Do I just let the change occur and roll with the punches?

I'm really conflicted and feel like I'm in a circular room with a revolving
floor and lots of doors. No corners to hide in and no way out but through one
that isn't locked. Yet I keep trying the locked door :( "

In one answer I was asked if the Dr knew about these changes and if meds had been introduced.
My answer is...
Seroquel is not a med that Hubby takes and yes, his Dr has been notified of his
behavior changes. This behavior is also not the result in any med changes.
Illness is also not a factor ie: Fever (always first thought), UTI...etc
Just seems to be a natural (that seems like an odd choice of word) part of the
progression.

I've prayed but honestly I'm not sure what I need to pray for.
I'm open for thoughts, feelings, suggestions, magic spells (kidding!)

I'm a firm believer that love concurs all, in this case I think it needs some backup.
I don't care for this, helpless to do anything, feeling.

Living with a Thief named Lewy Body Dementia

Treading Water

More Boys

This is all about me.

Conversations

Blub blub blub

No sick days

Good News / Bad News

The Best Worst Dr Appointment

Moving Day

***Time in a Bottle***

Welcome Home Hubby

Today is a good day for Pancakes

Me, Myself and I and BIL

Now What?

2nd full day

Day 1

Scardy Kat

The Days of our Life

Thought I would share a few smiles that came our way over the last couple weeks.

~~~~~~~~~~~~~~~~~

Hubby is completely shocked one night when he learned my last name is the same as his but he thinks I'm pulling his leg! ROFLOL!!

~~~~~~~~~~~~~~~~~

You know you're a caregiver when you let your 3 yr old grandson help take care of Pappaw by holding and trading off care supplies . When the job is finished, you tell your grandson "Good Job!" and the two of you High Five as he exclaims, "That's Teamwork!"

~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~

FINALLY decided to paint the wall in my bedroom today! Now Hubby and I are watching paint dry and seriously, it's the highlight of our day because we noticed a spot I missed :)

~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~

I asked why he was standing in the door.

His answer, "I didn't know where you were. I still sputtered as I removed the food. then Hubby annoyed with me said "I don't know what's wrong with you." AGAIN I repeated my frustration and walked away from them. Hubby called me back and said "Honey, I love you" All I can do is laugh. ROFLOL!!!

~~~~~~~~~~~~~~~~~

So you see, it's not all bad around here :)

Anniversary ..of sorts

Is this the party to whom I am not speaking?

Still kickin

Hubby's Personal Loss

Thank You Hubby

Wanted, Dead or Alive!

Lewy's Anxiety or Mine?

Time in a Bottle

His answer, "I didn't know where you were.
I still sputtered as I removed the food. then Hubby annoyed with me said "I don't know what's wrong with you."
AGAIN I repeated my frustration and walked away from them.
Hubby called me back and said "Honey, I love you"
All I can do is laugh. ROFLOL!!!