The Home

Bob has now been in Residential Home care for a few weeks.  He is actually doing better then I expected. He has settled right in. He had gotten to the stage where he was not recognizing any of us.. nor our house as home.. and quite often his own reflection.  I visit him 3 or 4 days a week.  He is eating well, Is happy, and very well taken care of.
The first few weeks were awful , but I'm guessing much more for me then Bob. When I visit I go in the early morning hours as I know that it is his best time. He laughs, giggles and tries to talk.  He is content and comfortable. The ladies at the home are awesome and think he is adorable. He is animated at that time and just reminds me of "old Bob".
  Life is going on.. Adjustments are tough but I'm guessing its more difficult for me then Bob.... I really really miss him.. , His Smile, His attitude, His  Presence..  I think about him 24 hours a day.  I really hate what this disease has done to us.. How it has consumed our life... But my love for Bob has not faltered in the least. I think it has grown stronger as I have become his voice.. Our Journey is different but it is still ours.  I'm guessing that Bob is probably better then I am at this point.. Because I know.. I know what I'm losing..

Withdrawals

The last week has been one of the worst of my life.
Bob is now in a Residential Care home. As he is dropping into the end stage of this horrible disease I found I could no longer do this alone.  His needs are first and foremost and I am sure that the  care he is receiving now is better then what I could ever do alone. He is completely incontinent now, Needs someone to dress him, shower & groom. He also needs help walking  and often cant walk even with help. He no longer communicates or when he does mumble something you usually cant understand what he is trying to say.
The only bright thing in having to make this terrible decision is that Bob no longer is aware of his surroundings or recognizes us the majority of the time. He often does not even recognize his own reflection.
Driving away the day he was moved was the hardest thing I have ever done. I cried for hours and I have done that after every single visit. It is so hard to see someone you love so much, decline  like he is. It is heartbreaking and I feel this tremendous sense of guilt.
I am trying to keep busy but find my mind is often with Bob. Wondering how he is. Is he warm, is he eating, Is he sleeping etc.
When I visit he is clean, shaved and nicely groomed. The ladies at the home are taking very good care of him for which I am extremely grateful.
I miss him. I cant sleep. I am sad. I can't concentrate and I feel lost.
Pretty sure I have a case of Bob withdrawals.......

Refections of the Past

Sometimes its hard not to dwell on our past. 
I think about how blue Bobs eyes are and how they used to smile. They are still blue but now they seem devoid of any pleasant emotion.
I think about Bobs love of the outdoors and the many trips we made to the mountains hiking and the lakes fishing. Now Bob prefers the solitude of our home to outside activities.
I think of the vows we took  “for better of worse” and I know I will care for and love him forever. 
I think of all the time lost on senseless petty arguments and I wish we could go back and do some things over again.
I think of family that wish they could have just a few more moments with Bob while he had a healthy mind.
I think my heart is breaking tonight.....

Spirit

I am having such a hard time finding my Holiday Spirit this year. Maybe its because I cant get out to do my normal activities or shopping. Maybe its because I'm just  physically and mentally  exhausted. Maybe it's because my heart is heavy from having to make decisions I dont want to make.
  I made an attempt to get things started today.  I moved the book shelves to the hall alcove to make room for the tree. My son dug the decorations out for me.  That's as far as I got.
 Tonight I bundled Bob up after Dark and decided to walk around the neighborhood to see some of the lights the neighbors have put up. The whole time Bob just really wanted to go home to his chair.
 I'll Look for my spirit again tomorrow..
Alzheimers/Dementia causes such a feeling of loneliness. It seems compounded during the holidays.
I did get my first Christmas Card of the season ... It was from the Cable Company.. wishing Me ..." Dear Valued Customer" a Very Happy Holiday Season.  LOL.

Fading Memories

The past few weeks Bob's past memories seem to be fading. Things he has always remembered such as trips taken, life events, births, deaths, schools, family, friends etc..
   I have spent the last few years using past memories and photos of events and family to keep him grounded so to speak. Now when I try to use past memories and photographs, Bob just becomes angry and frustrated.  This doesnt keep me from piecing our lives together in little bits of information to remind him of his life. Our life.
 I have been knee deep in my own memories, of a life I loved so much,  The trips we took, the things we've seen. Things we've laughed about and cried about.  The plans we had for our retirement etc...
I'm realizing how alone I am with  those memories now, and how it feels impossible to make new ones.
I hate this disease.

Companion

Friday I had to have our 15 1/2 year old wolfdog Lightning put to sleep.  I had been dreading this as I thought it was going to be a very emotional upset for Bob. Turns out--It has been far worse for me then Bob. Lightning was my evening companion. After Bob would go to bed, I would sit down to "unwind" and Lightning would sit as close as she could with her chin on my thigh. It was very comforting.
 Bob does not even seem to comprehend she is gone. Every hour or so he will walk to the door, or go out to the back yard and whistle for her. I will gently remind that she is no longer with us and he will repy " Oh- I didnt know that" and he will go sit back down.
My evenings have become even more lonely without my dog. Just when I think I have no more tears... they well to the surface.
I am an emotional train wreck. I really miss her.

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.

One Day

I long for a "normal" day. One day, without  the Dementia that we have had to build our lives around. One day,  free of worry, loneliness, and stress. Just one stinkin day...Please...One day.

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.

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.

Silence is not always Golden

I think one of the most difficult issues to deal with in Alzheimer’s patients is their lack of communication. Bob's silence is sometimes extremely frustrating and causes a feeling of horrible loneliness for me. His ability to carry on a conversation here lately has been non existent at times.

I know most Alzheimer’s patients lose their ability to successfully communicate early on during the course of the disease. I just didn't realize how frustrating it can be. With Bobs severe hearing loss we had been pretty good at communicating with hand signals and body language but now it seems that the only time that he even tries to communicate is when he is frustrated or angry or just having an exceptionally good day.

Him not being able to communicate affects so many aspects of our journey — from practical matters to emotional matters. I often feel like I am caring for an infant. Watching his face for signs of pain or emotions. Besides the practical issues that are health related, not being able to hear him  speak also takes an emotional toll on me. I carry on two sided conversations and often find myself trying to force a response or conversation out of Bob. One worded responses seem to be our  new normal. Unless he is upset, or angry.. or may be having a good day. Then and only then does he seems to be able to get a reasonable sentence out.

I miss his voice. I miss his laugh. I wish he used them more often.  I wish........

I sure miss "him"

I miss my Bob.. The man I fell in love with... the man that comforted me if I was sad, boosted me if I was feeling low. Wiped my tears when I was distraught, soothed my fears when I was scared. The man that made my heart race at the sight of him, the man that could grin and make me melt.. I Miss my Bob.

I want to jump up and down, lash out in fury..ANYTHING, to express my anger at what has become of him. His loss of memory of our life together is painful for me to endure, but it is such a small part of the bigger picture that the outside world does not see.

They do not see or hear his confusion, his desperate attempts to grasp onto his old reality. The Sad look in his beautiful blue Eyes as he tries to grasp onto distant  memories. I MISS my Bob!

Time

“Dost thou love life?  Then do not squander time,  
for that’s the stuff life is made of.”
―Benjamin Franklin

Time is something that seems to fly and drag at the same time. How is that possible you ask? Day after day as we deal with this monster called Dementia I waffle back and forth. Some days seem to drag on and on and on. Other days I realize how limited my time with Bob really is and I want time to stand still. In my heart I know I have no control over this, but as I sit on the deck with Bob in the sunlight of the mornings I look at him and see " MY BOB". The man that took my breath away when we first met. In the late afternoon hours when "Sundowning" begins I sit and search for glimpses of "Old Bob" in "New Bob's" face. I realize in those moments that time is not on our side and I need to make the best of each moment. How can just a span of a few hours make such a huge difference in a Dementia patients mind? I will never understand.

Fixing the Un-fixable.

I am not going to go into great detail as that is pointless.  Today both boys stopped by to check on us and to help with a few little things around the house.
 And Today, for the first time ever, Bob was really rude and mean to one of them. I saw the flash of pain on my sons face  and the tears in his eyes, as Bob barked at him and it about tore me in half. And of course I instantly tried to "fix" the un-fixable. My son regrouped but I know he was beyond hurt. He left here with a very heavy heart. I really understand why people avoid coming around.
 I really hate this disease. :(

I miss my husband

I had a horrible day. Everything just seemed to go wrong. I spent a good portion of the day in tears and although I know that Bob noticed several times, he said nothing, nor offered  comfort. His empathy button has been broken for quite awhile.
Maybe its just stress, maybe its this horrible feeling of being so alone these days. But I cried-- alot. And I had no control over it.
 I really miss my husband. I dont know how to explain that. He is sitting less then 5 feet from me staring at the floor as he has every evening for the past month or so and yet he is so far out of reach he may as well be in another country.
Have I said I really miss my Husband? I so hate this disease.