Hospice

It has been a very long month. Bob was put on Hospice this past week. He is losing weight rapidly even thou he is eating fairly consistently.  Food does just not want to "stick to his ribs" these days.  He is a shadow of his former self. The nurses can lift and carry Him like a child.
He hasnt spoken much at all the past month. He cannot hold his head up so spends much of his time in bed. I feel so lost watching him go through this.
I visit him almost daily now and sometimes twice if he was asleep during the early visit. I often wonder if he even realizes I am there. We watch TV and I carry on a conversation as if he was answering my chatter. I miss him so much.
We carry on in this ugly Alzheimers world. I hate this diesease.

Visitor

Today one of Bob's old hunting buddies Chad stopped by for a visit.  Someone that he spent a lot of time with over the last 15 years or so. Hunting, target practice, fishing, sports etc...
 Although Bob was curious, he really had no idea who Chad was.  Bless Chad's heart for the visit. He is one of the few of Bobs friends that has stopped by occasionally since his diagnosis. Chad talked to him about general everyday things without trying to pressure Bob to remember him. I could tell he was disappointed that he didn't.
 Bob couldn't really talk and the few things he did mange to blurt out made no sense and I could tell that Chad was shocked to see the huge decline since his last visit. I felt bad for him.
He visited for about 30 minutes, got caught up on news of his kids, wife, work etc.. Chad said his goodbyes with a promise to visit again soon.
After about 5 minutes Bob blurted out. " Did he fix it?"
I said " What? Fix what?" He said the  " The rock"
Not knowing what to say  I said " Not this time, maybe when he comes back"
Bob simply stared out the window with a little nod.

Hearing Or?

Bobs speech has pretty much gone silent again. I guess I shouldnt say silent.  He will say three or four Jibberish words that make no sense. I try to decipher their meanings and as hard as I try most of the time I dont figure out what he is saying before he gets angry. Rather then deal with his anger I will quickly say.   "Thats Interesting", or maybe if it seemed like a question "I'll say I'm not sure". Something to let him know I heard him.  He also has been slapping the table next to him in some form of communication that I havent figured out yet.
 Bob has been 100% deaf in one ear for years and has lost 85% of the hearing in the other. They think.
They really are not sure if he is responding correctly to the hearing tests right, so it is making it impossible to get a proper adjustment on his hearing aid.
Not that he will wear the darn thing anyway.. He hates it.
It is very hard for them to figure out if he is not responding because he cant actually hear them or if its the Dementia. There have been many times I have been right in Bobs face (speaking in a voice loud enough for the people at the end of the street to hear me) and he still looks at me as If I havent said a word.
I'm guessing a combination of the two...

Conversation

Today as I was trying to get a few things done for tomorrows Christmas dinner I was carrying on a One sided conversation with Bob. I would say something. Bob would say something obscure back that had nothing to do with what I said. I would say something else and Bob would say what I call Jibble jabble...words that are made up or are nonsensical.
 He was "conversating" in his own way but not really communicating. He was happy thou and would often let out a Laugh or chuckle.
 It has been a really long time since we have had a meaningful conversation and its one of the things I miss the most. But It was nice to have a morning where he tried to participate in his own way and was happy doing it.
 I think he may finally be recovering from his Cold which makes for a Huge improvement in attitude and confusion. At least in the early hours of the day.
  As late afternoon and evening set in I know it will be back to Mass confusion and him not knowing our Home or me.
I'll take what I can.......

Guilt

The last week has been one of pure frustration and angst.  I think I told you that about a month ago the neurologist told me I needed to get Bob on a waiting list for a nursing home. That the wait can be rather long and at his rate of decline I really really needed to do my research and find a place.
 Well, Of course I had that attitude of. "I am handling this okay for now.." And then Boom-- Out of the blue things started really changing or maybe I should say Bob started changing...rapidly..
 The incontinence, the hallucinations, the confusion.. I am not really sure I would say it is incontinence. I do have depends on him  " just n case". But so far our issue is not wet pants.. but wet everything else. You cannot leave Bob alone for even one nano second..the minute I do he is urinating somewhere.. even after just going.. The clothes hamper, the closet, just the floor.. he even tried to do it in the aisle at a store. And when I tried to stop him he started screaming that I was "stealing" him and yelling for help. People were staring as if I was conducting my own personal geriatric  kidnapping.
My first thoughts were- Possible bladder infection so I took him to the doctor. Nope-- all clear..
A few days ago I had to run to the basement for a load of laundry and before I went down the stairs,  I said.. Do you need to go to the bathroom?... NO-- I'm good. Come on lets try real quick... NO_- I DONT have to go.. I ran down grabbed the clothes and ran back up just in time to see Bob standing in the hallway and peeing in towards the bathroom. Not even trying to use the toilet once again- just shooting urine into the bathroom from the hallway...
 For the 20th time in just a few days time, I got him washed and settled back in a chair and went to the bathroom with cleansers, mop and rags... I sat there on the bathroom / hallway floor scrubbing walls, floors, cupboards etc and bawling my eyes out.
 Last nights Hallucinations had Bob thinking there was someone across the room that wanted to hurt him and in his words " is staring at me through that hole"... He also has had an episode where he couldnt walk nor hold his head up very well.
So Yes. I did finally visit 6 Nursing homes.. I made the best educated decision I could from what I saw and learned at each place. I put him on a waiting list.. I received the mounds of paperwork and have been filling them out and getting all of the required documents copied  so I can get it all sent in.
I thought I would feel some sense of relief in having this step done.. But I dont. I feel this horrendous sense of guilt. I know Bob will be on this waiting list for months yet. And By the time they do call me to tell me his room is ready he will no doubt be even worse..But I still feel guilty.. And I am still bawling my eyes out. Did I say I felt guilty? I hate this disease...............

Communication

Bob is really struggling with speech again. I try to keep questions short and to the point. One question or phrase at a time. Bob either wont answer or he answers in his head without actually speaking the words.
 Today I asked him a question and was waiting for a response. Nothing. I repeated it a few more times. Still no response. I asked him yet again and said.. Are you understanding me?
 He said "Yes- MY answer is still the same"

I married my Best Friend

Today I was cleaning out a cedar chest where I have been storing all kind of odds and ends.  Blankets, gifts,  baby clothes from my now adult sons, My Memories and...clothes that  dont fit me anymore.. Or do they?  I found several pair of Levi 501's and was trying them on...  I HAVE lost 25 Lbs after all....
 Bob said.. " I think those DONT fit you".
I said.. "If I lay like this-- wiggle like this- I will get them buttoned."
Bob said.. " I dont think that will work.They probably aren't yours."
Oy.. way to stroke my ego babe...
Yep-- spoken just like a best friend...

One for the Records

 This morning I had Bob help me move a few odds and ends out to the shop in the back yard. It was 16 degrees and with the wind blowing the wind chill was probably about 4 degrees.
 Bob said " This is probably one for the record books".
 I said "Whats that Hon?"
He said " I don't think Its ever been this cold in June before".
:)

What's in a Name?

It was a strange evening here tonight. After dinner we had settled in to watch TV  and Bob looked at me and said " Are you going to "dump" me.
 I said "Why on earth would you think that or ask me that?".
He said " I have been trying to remember your name... I can't".
Its strange- He has not been able to remember my name on and off for quite awhile now so I'm not sure why it was bothering him.  Apparently he had been trying for several days. When I told him what my name was he said- " I would never have guessed that"
 I told him him.." Hon-- If you don't remember something- Please just ask-- Trust me-- Its not worth stressing out and worrying about it."
 Subtle changes--- that are starting to seem not so subtle.

Envious

Its been so long since things were "normal" that I think I have forgotten what it is like. Today I watched a couple walking hand in hand down the sidewalk, laughing, chatting and really enjoying each others company. Another thing Alzheimer's has robbed us of. I really miss heartfelt conversation with Bob.. Hell-- I now miss meaningless conversation too....
I was envious.. and then I was in tears......
I hate this disease.

Shadows

Bob has found his shadow. Its a little like the man in the mirror that he talks to.  He waves at it. He does things a child would do.  He takes steps and giggles as his shadow does too.  He flaps his arms like a bird then soars like a plane.
The sun was shining bright when we went to the store a few days ago. The people in the parking lot received quite a show from "The Shadow".   :)

A strange beast

The Alzheimer's mind is a strange beast. One minute it is "okay" and the next it is scrambled and jumbled.
 This morning Bob was doing pretty good and even got out some of his leather work and was messing around with it. I could see he was struggling but he knew what it all was, and which tool did what.
 After an hour or two he got up to go to the bathroom and then the kitchen to have a snack. When he came back to his desk he  wanted to know-
 " Who left all this smelly crap on my desk and why..."
Yes-- the Alzehimer's mind is a strange beast indeed.

Why Yes!

Bob speaks so little anymore I have started speaking for him...

   I will ask him if needs something to drink.. he will just sit there.. so I will say." Why yes dear- that would be lovely". Or if I ask him if he would like to go outside with me and he doesnt answer, I will say. "Why Yes dear-- I would love to partake of the fresh air with you"

So tonight after he ate I asked- Did you get enough to eat?-- as always-- no answer...

So I said. "Why yes my Love-- And might I add-Your culinary abilities are only surpassed by your beauty.

He sat there looking at me for about 5 minutes... Then he said- " I would never say anything like that"..

Aww-- He does speak! :)

Challenged

Today, as usual, I was carrying on a one sided conversation. Yammering on about all the things I needed to get done before it snows.
  Every now and then Bob would nod, but as usual didnt offer much of a verbal response.
  I was on the side of the house talking about winterizing, more to myself then Bob, and I said,  I think I will have to Mow a few more times so I will leave the Mower out but I need to get the some of this other stuff put away...
  Bob said... "Thats a stupid move"
I said "What?"
He said " The ground is about to thaw out- you will need that"..
Bob is a little seasonally challenged right now..

That's Why

Today, Bob flushed money down the toilet.. Literally.
 Why you may be asking?
Because- " Its my damn money and I'll be damned if anyone else is going to use it."
Thats why!  :(

Silence

I follow several Alzheimers/Dementia Blogs and I seem to always see the same "notes"  about the lack of conversation. As much as I know its a common thing amongst caregivers and  their loved ones its one of the things that drives me the craziest.
Bob no longer communicates, even when you  ask him too. If you push him he gets angry. I know he is hard of hearing which is part of the problem but the lack of conversation is almost ominous.  The silence is almost overwhelming.  I talk and talk, carry on two sided conversations and often wonder--- what is he thinking, why isnt he responding- when will I get through to him?
I'm guessing it will be for a moment.. one day- down the road.. when I least expect it..
I feel so alone.....And yet Bob seems content. I guess that's a good thing.
( I call this pic the "Elephant Rock"... ) Taken at Riverside state park. Spokane.

That's Not It

This morning I decided to go get a much over due haircut. I have wore my hair pretty long for quite a few years. Bob liked it that way.
 So today, My almost waist length hair was cut.. To about shoulder length. Wowser- does my head ever feel light.
 When I got home I was expecting some kind of protest from Bob. NOPE.
 He knew something was different but he couldn't figure out what. He said. "Is that a new shirt?" I said  "No- I've had this one for quite awhile".
As he is sitting there looking at me trying to figure it out, I flipped my hair around a little to see if it would dawn on him..  He said. " Well somethings different"
I said. "Youre right" I got about 15 inches of hair cut off."
He said. " No-- that's not it"   :)

Descisions

I am so tired of making life decisions all by myself.  Especially when it affects more then just me. When You are used to having your spouse give you feedback or an opinion, and that feedback just "stops",  but they are still involved in the outcome.. Well--It sucks.. I worry and I stress about things that should be so simple. Its even worse when I think Bob is having a good enough day to try and communicate with and I get some obscure comment that had nothing at all to do with what I was asking.
I need a supervisor. Or maybe a coin to flip. This journey through Dementia/Alzheimers sure is a lonely one. I hate this disease.

There It Is

Bob does not handle the "heat" of summer nearly as well as he used to. Which is a little hard to understand because before he had to quit working , he was out in the heat of the day, all day.  I am beginning to think that any heat in the summer--is too much,  and any cold in the winter--is to much.
 Now he sits in a chair that is directly in front of the air conditioner vent and still seems to be "hot" all the time. A few days ago I gave him a cold wet cloth  to wipe his face and neck down. A few minutes later as I was watching him from across the room I see him looking for something.  He is searching his chair, the floor, around his chair, the end table etc..
I said  "What did you lose Hon?"
He said " That cold rag...?"
Ummm... "Its on top of your head"
Bob- "Oh-- There it is"
 :)

Miscommunication

Common words seem to evade Bob these days.
One of the neighbors came over to see our son who was working in the basement with me.
When he came to the door He said. " Is Brian here? and Bob replied " He is in the hole"
 A neighbor was talking to Bob while he was in the front yard and asked "Where's Lori" .  Bob replied "She's dead".  Which I am assuming he replaced the word "gone".  At least I Hope that's what happened. The neighbor was kind of freaked out.
He refers to the toilet as. "The Pee Hole"
He refers to a Gas Tank on the jeep as  the"Car Bomb".
He calls his shoes "Kickers"
His watch is a "Calendar"
He has so many replacement words for everyday items. Some of them not so nice so I wont put them here. :)
I'm glad he is still trying to communicate- But sometimes it takes a little bit to figure out what he is trying to say. It's a Puzzler for sure!