Respite...Take 2

Why , Thank You, I think I will take 2.
2 weeks that is.

Last November I brought myself face to face with the need for respite.
Fear of the unknown (read here ) kept me frozen in the decision for respite until I finally just closed my eyes and jumped in (read here ). Boy was I ever glad I did too. It was just a week and I didn't do anything that would qualify as special. I stayed home regrouping and close to the phone for contact if I was needed. It turned out to be a great relaxing week.

So now here it is 10 months later and I took advantage of the respite services that were offered by the VA. Hubby qualifies for up to 2 weeks at a time 2 or 3 times a year or more in emergency if needed. Lets hope we don't need the emergency time :)

I made special plans for this respite.
I called without hesitation and set up the date.
My time chosen coincided with my birthday! Imagine that ;-)
I planned on spending my 50th birthday with far away family and friends. Also reconnecting with my best friend from grade school. We hadn't seen each other in 34 yrs! I also made plans to connect with some on line caregiving friends. People that have become very close to my heart and I've been chomping at the bit to meet.

So I had these plans but was pretty reserved in my excitement for them, and if you know anything about me from reading this blog you know containing excitement isn't easy,  but I did since I wasn't quite sure how Hubby would react to another stay in respite.
I prayed.
A Lot!
I called in the prayer warriors too.
Hey, I'm not shy in asking for help especially when I know I'll get it :)

Hubby accepted the news about respite quite easily. I waited until a few days before hand to tell him. I know that telling him anything far in advance will leave him time to dwell on things and it raises his anxieties. Thus raising mine, so it was comforting that he accepted the information as well as he did. Power of prayer.

I remembered from the last respite they asked that I label his clothing with his name. Since he has a shirt he likes quite well with the name of his ship he served on embroidered on it, a few weeks before I had to pack for Hubby, I had several of his shirts embroidered with his name on them. He loved them. :)
I bought iron on transfers and did the same thing with his undershirts.

The  morning came and I got Brother in Law (BIL) up and off to school.
Hubby got up and I was able to get him ready to leave with no problems.
The ride to the VA hosp was good.

Once we arrived for intake, I took on my Lewy Body Dementia teacher persona.
Nurse and I had a nice visit about it, pharmacist and I did the same.
We went over all the meds Hubby takes and I made sure everyone understood that Hubby only received the meds listed and nothing more. I explained about his hallucinations and that he is not distressed by them and most of the time understands they aren't real so they aren't anything to get concerned about or anything that needs medicated. I must have been a little insistent that they understood that because when I said "He doesn't even get a tylenol unless it goes through me first." I got a "Yes Mam" from the pharmacist. LOL

I made sure they had my numbers and emergency contact numbers.
I had made a list of items packed and worn and gave to the intake nurse.
I also assembled information on Lewy Body Dementia for the staff to read and share.
Education, Education!

Hubby got anxious only once when I was leaving. He didn't know why I was leaving before he was settled in his room. I explained I couldn't stay and the nurse would take care of getting him settled. He was okay with that. He kissed me goodbye.
I walked away and didn't cry this time.
I believed he would be in good hands and I trusted my prayers to be heard and answered with a yes.

I had a day and a half to get myself ready for my own trip.
My excitement for the time was beginning spill out.
I still had BIL to place with his sister but that was a piece of cake since he already has a living setup at each of the 3 homes he lives in.
I also made an executive decision that there would be no "on purpose" exercising. "So Be It" Gavel strike

Now comes the part when I pull out my slides of my trip.
*Dims lights*

Oldest daughter and her Hubby accompanied me as travel companions.

Now I only had plans to do 2 things for certain.
1: Have a gathering on my birthday with family and friends.
2: Finally meet my on line caregiving friends.

Son in law said that was perfect, meet strangers and have a party.
Sounded like college to him LOL!!
Yes, the rest of the trip was just as hilarious.
We laughed the entire time we were gone.

Our first stop brought me to face to face with my newest friend Bette.
Bette cared for her mother, who had dementia, in her home for several years before her mother passed away last July.  My heart ached for Bette, rejoiced with Bette, cried and laughed with her. How could I pass through her state and not find her? Bless her heart for taking the time to come meet and visit with me. It was like seeing an old friend and I hated leaving her when our time was up.

Oldest daughter, Son in law and I continued our travels arriving in NY state, the place I was raised.
We did the typical sight seeing at the Falls and I filled my heart with the joy and love of being with my family and friends. The only bad part about it was that I didn't get to see everyone I wanted to. Fun part was reconnecting with my second grade teacher!

Our next destination took us to the outside of Chicago.

We took the train into the city and rode a trolly through the town. Sight Seeing at it's finest including a trip to the Aquarium and some deep dish Chicago Pizza and

Oldest Daughter, Son in law and I made our way to the Sears Willis Tower for the last stop of our vacation. 1400 ft, 103 floors up and we even stepped off into the glass bottomed ledge.
Confession, I walked in backward looking up and did a lot of nervous laughing.
I had a spectacular view of the beautiful city and to top it all off, I got the sunset. It was a perfect ending to my perfect respite.

We headed home the next morning and I returned refreshed and  rested. Normally in whirlwind travel we can feel tired upon return. Nope, this respite was just what the Dr ordered. I even had a few days before getting Hubby to catch up on laundry, visit the dentist, take our dog Booger to the vet and get BIL resettled into his routine. 

You might be wondering, "Did she even think about Hubby while she was gone?"
Oh yes, I did. Even though I was enjoying my respite time away I still kept Hubby in the forefront of my mind. I called all but 2 days to check on him. He did well and adjusted easily. He had one slide out of his wheelchair without injury and it was reported on one day that he was having some anxiety and was a little irritable. I laughed at that and said he was having a good day then ;-) But overall, his stay was a good one.

The day to get him arrived and as I walked into the wing Hubby was in I saw him sitting in a wheelchair in the hall. He looked good but I could tell there was a decline. He didn't smile at me when I walked in but he did smile at me when I spoke to him. He wasn't ready to leave so we went into his room. We were met by a male nurse and we all hopped in to get Hubby dressed and packed. Hubby needed to use the restroom and had been in there awhile so Nurse stepped in to see if he was ok. I overheard Hubby ask Nurse "Who is that woman?" I laughed out loud! I think that was the first time Hubby has not recognized me. For a long time he hasn't "really" known who I am as his wife, but he has always recognized me as someone he knows or is familiar with even when he gets me confused with the "other" Kathy.
When he came out of the bathroom I had him packed. I handed him his hat and asked him if he was ready to transfer into his own chair and go home. His answer was "Yes, but lets get one thing straight before we do. Who are you?" I explained I was the love of his life and the woman he couldn't live without LOL!!! 

He kept asking me about the "other Kathy".
The nurse assured him that I was the same woman that was there last time he stayed with them. I offered that I had colored my hair to remove my natural highlights so that might be confusing him. He accepted what he was told and came home with me even though I could tell he wasn't quite sure.

We made a few stops on the way home. We had lunch with Youngest Daughter, Other Son in Law and Youngest Grandson. All familiars to Hubby. We stopped to see a friend of Hubby but we didn't stay long as Hubby had physical  meltdown. I finally got him home and settled in his bed.

The next day we had to go back to the VA for a hearing aide appointment. Hubby has complained about hearing for a while and to be honest, even though he does have some hearing loss, I believe it is less his ability to hear and more his inability to process the words. On the way home he complained about the noise and half way home of our 70 mile trip, Hubby had another meltdown physically and mentally. He slumped down in his seat and stopped conversing with me. I got him home and in bed but he was basically worn out for the rest of the day.
Kathy diagnosis : Too much auditory stimulation for his brain to process sent him into automatic shutdown.
He has not worn his hearing aids since.

Hubby's 3rd day home had another Dr appointment scheduled but at the facility closest to us about 20 miles. We finished early enough to take Sonny Boy out for his belated  celebratory birthday lunch. Hubby did well this time but became very needy as the day and night wore on. As soon as he needed one thing I was trying to get  and do for him, he needed or wanted something else. I felt like I was running through myself for him. I stopped and stared at Hubby and laughed. I had just been on an 8 day whirlwind road trip and felt great and Hubby was home 3 days and I was exhausted! 
Life back to normal :)

I learned a few things about myself and life in general on this respite.
The first thing was
NEVER EVER color your hair the day before you travel IF you are using a new brand. You might wind up with an intense color.
Secondly, If you plan on having pictures taken make friends with spanks and do not pack the pants that might fit in the back but cut you off in the middle.
You could end up looking like a sausage with a rope tied tightly in the middle.
And Third, don't brag about your running ability if you can't run faster than the people in Chicago are walking!

Respite, it's all it's cracked up to be :)

LEWY vs PMS

I have worked closely with Hubby's Dr's to wean him from some meds I felt were not contributing to Hubbys physical and mental wellness. For the last few weeks Hubby has had no incidents of falling and he seems to be steadier on his feet and has a little more ability.
I fear that in my quest for Hubby's physical  gains the mental fluctuations have left me feeling like I am dealing with a double edged sword by the blade.

At a recent Dr visit with a mental health professional to discuss Hubby's feelings about his loss of independence, Hubby decided that I am the reason everyone is convinced there is something wrong with him. He is quite capable of taking care of himself and I have turned everyone against him. He then told his Dr that he was going to fix his car and divorce me.

Not a good day.

In Hubby's long silence between words and few word phrases to the Social Worker, Hubby announced, "I just found out about a house I didn't know we had".
The Social worker questioned Hubby about said house and I sat with a confused look on my face.
Asked where this house was Hubby couldn't answer so I asked him, "Do you mean the house we are living in now?"
Hubby answered "Yes"
I then asked "You mean the house we built 15 yrs ago that we are living in right now?"
Hubby looked confused and said "No"
I asked Hubby where said house was.
I gave him separate choices for deciding and each time he answered "No"
I asked what the address of said house was.
Hubby started giving the address but was having a difficult time recalling the numbers except for a couple I recognized so I asked him if they were thus and such and he, enlightened, said "Yes."
I looked at the Social Worker and he looked at me and asked me where that was.
I answered "That's our house we live at now.
Hubby insisted "No it wasn't"

Capgras delusional beliefs that people, places or objects have been replaced  with duplicates. 

After we left the Dr's office we stopped and had lunch and as I often ask whenever we have the opportunity to be out Hubby wanted to stop off at a friends place of business. Allowing Hubby to visit without my presence I sat in the car and waited for Hubby's return. Upon his return the friend told Hubby the tires he just ordered would be in Monday.
Stunned by this revelation and no legal authority to do anything about it, I simmered in my PMS.

Beating myself up for not shadowing Hubby. Refusing to make a stop and just bringing him home.
Then I would be beating myself up for keeping him captive. I feared that more than anything. I never want Hubby to feel like he is a prisoner. Sadly that is how he feels though.

So the double edge sword.
Hubby continued on the meds, stayed unstable sleepy and out of it not knowing who I am.
Not fearful or upset about his situation.
OR
Hubby cuts back on the meds helping him become more mobile and more alert to some things, yet still with a mental decline incapable of making decisions. Anxious and upset about his situation. Feeling trapped and controlled.

Now it gets interesting.

Lewy (Hubby) decides he wants to talk to me about leaving and driving but can't decide what he wants to say.

PMS (me) says that between Lewy's confusion and her confusion she needs to try and sort things out.

Lewy doesn't agree and says there is nothing wrong with him and PMS is trying to convince everyone that there is something wrong.

Gloves On. DING DING

PMS throws a verbal left and then a right jab telling Lewy she doesn't have to convince anyone of anything as Lewy does a good job on his own.  Case and point, house comment at appointment today.

Lewy counters with a series of paused 3 and 4 word incomplete sentences.

PMS continues the verbal assault with another right and a bash with a left and a heavy thud right into Lewy's insistence on how Lewy intends to care for himself .

Lewy leans left to avoid the verbal jab proclaiming he could care for himself like he used to.

In a succession of beautifully placed verbal punches PMS gets nasty and reminds Lewy he can't even care for himself at home, then lists the dirty list of problems Lewy has.

Lewy with his gloves up insists that there is nothing wrong with him and he has every ability to care for himself.

PMS circles the ring asking Lewy why he doesn't do anything on his own then.

Lewy jabs with short stuttered incomplete sentences asking what PMS does for him.

PMS, taking a stunned shot to the head launches a tirade of all the things she does for Lewy from personal care to home improvement for Lewy's safety and comfort.

Lewy stumbles backward into silence for as while then takes a wild shot at PMS
keeping him under thumb, never wanting him to go anywhere or do anything.

PMS  deflects Lewy's hit by reminding Lewy he chooses to stay home and never wants to do anything but stay in bed.

PMS launches an uppercut at Lewy by informing him that he is the one that chose to give up and just die.

Lewy then swings in with a confused glancing blow that leaves PMS herself reeling in confusion as Lewy once again takes off about the capgras house.

PMS is confused and realizes this is a no win battle she grabs her crying towel and both she and Lewy complain with headaches and go to neutral corners.

I am not sure who got the TKO as neither seemed victorious.
PMS surely doesn't feel like a winner.
In Lewy World everybody looses.
And I feel like the biggest loser of all.

How long have you lived here?

Wikipedia describesThe Capgras delusion

 (or Capgras syndrome) is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects.

The 's' is silent.

Ever wake from a dream in the middle of the night and find yourself twisted around in the bed and for just a moment you aren't sure exactly where you are? That has happened to me but I was always able to gather my bearings. Unfortunately this is the only description I can give as to what it might be like to have dementia and feel lost in your own house.

Hubby started having house problems before the Lewy Body diagnosis. His confusion as to where we were was mostly at night but just as easily sorted out when he said it. Hubby was aware he was mistaken and corrected himself, in the beginning.

Then he started asking where we were, who owned this place and how we got here. I told him we were in our own house. I asked him where he thought he was and he suspiciously told me I was trying to convince him he was someplace he really wasn’t. He finally told me we were not at (our address). I tried to reassure him we were but he wouldn’t ever be satisfied with the answers and he got up and slowly walked into each room carefully looking to make sure nobody was here and checking out everything.

He eventually became convinced we are in a double wide. (we live in a 2 story house) He can’t decide where it is located or who owns it. Trailer talk was a nightly conversation

“How does this thing go together?”
It doesn't, it's a house
“Who owns this?”
We do
“What’s in that room?”
The bathroom, still
“How did this trailer get here?”
It's a house and we built it
“Where is this trailer located?”
The same place it's always been for the last 15 yrs
etc etc

Now mix in me. My first episode of Hubby not knowing me came in April of 2008, 6 mo. after his diagnosis.
He was looking at me very hard as if studying me so I asked him if he knew who I was and he said ‘No’
Then he said I was his sister. He went to sleep right after that.I was left feeling alone and sad.

Hubby started talking to me about me. I always find it amusing when he does that for some reason
He once told me that his wife had all the sets of keys to the trailer. I asked him what his wife’s name was and he replied that he had so many he couldn’t decide. I asked who he thought I was and he said Kathy. I asked if he thought I was his wife and he said I fit in there someplace.  LOL! Those are all logical statements as I am wife number 4 and my name is Kathy :)

I think our husband wife relationship took a turn the night in bed he got up, rolled over on top of and sat on me. He looked straight at me and asked me, “What was your name?”  I told him Kathy. He said “I thought that’s what it was but I wasn’t sure.”

I'm sure you have all heard the jokes about that happening but it became my reality and for a second it wasn't funny, just very very sad.

Of course I try to cover negative feelings with humor and although I NEVER said it out loud my thoughts were, It doesn't matter. Just leave the $200 on the table and remember, you're getting the Sr Discount ;-)

 After that incident I found it difficult to be intimate with him. Overwhelming in my mind was the thought he might not know who I am or worse, think I’m someone else. My heart could not take that. My affections have changed to a more nurturing love from an intimately passionate one.

The strange house and the different wife are not scary issues for Hubby. Hubby seems to accept the fact that most of his furniture is here in this strange house. It's seems perfectly fine to him that he has another house "just like this one" but does not live in it. He is OK with the fact that I live here and take care of him and he lives with me. He knows I am his wife but doesn't remember getting married to me and since everyone has told him we are married he just accepts it.

So in looking for the good in these situations I must say Hubby feels safe and content today. He is not stressed nor agitated about these things. He never tries to leave or wander off looking for the other house. He knows if he needs anything I am here for him and that in itself is a blessing.