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.
Showing posts with label Dementia. Show all posts
Showing posts with label Dementia. Show all posts
Friday, May 29, 2015
Tuesday, March 17, 2015
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..
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..
Saturday, February 28, 2015
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.......
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.......
Monday, February 16, 2015
We are a Team
I often refer back to " The old days". when Bob was healthy of mind. We always had a good time no matter what we were doing. He supported my hobbies, I supported his.. And eventually they blended. It was a "sweet" spot in our lives.
I sure miss his support..his bellowing of " You got this" or.. " People are going to LOVE that".. My rock of support is silent.. I am a forward marching team of one... Even Thou he no longer voices his Support.. I feel it in my heart.. My team leader..
I sure miss his support..his bellowing of " You got this" or.. " People are going to LOVE that".. My rock of support is silent.. I am a forward marching team of one... Even Thou he no longer voices his Support.. I feel it in my heart.. My team leader..
As things Change
It makes me heart sick.. Not just a little twinge that goes away in an hour but a gut wrenching pain that lingers for days. Bob used to have a saying.. What life throws at you can be caught in a glove.. Damn.. I need a bigger glove.
My glove is full..But fast balls keep keeping coming in, as if being shot out of a machine.
The past week has been rough yet we still have found moments of laughter. I dont know how, but he still can bring a source of light and laughter when I am at my lowest.. I love him so much.. Little moments, One day at a time..
My glove is full..But fast balls keep keeping coming in, as if being shot out of a machine.
The past week has been rough yet we still have found moments of laughter. I dont know how, but he still can bring a source of light and laughter when I am at my lowest.. I love him so much.. Little moments, One day at a time..
Saturday, February 14, 2015
Happy Valentines Day
To all of you reading - I wish you a happy Valentines day..Or if you are "single" a Happy Single Awareness Day.
It will go unnoticed here- Just as our anniversary did a few days ago. Not that I didnt make a little bit of effort to tell Bob Happy Anniversary..
When he got up I said, "Happy Anniversary Bob".. and he said... "No-- thats okay"... I'm not sure what he thought I said.. But that was my attempt.. :) and my failure.. sometimes it's better to just ignore the occasions that pop up.. for my own sake..
It will go unnoticed here- Just as our anniversary did a few days ago. Not that I didnt make a little bit of effort to tell Bob Happy Anniversary..
When he got up I said, "Happy Anniversary Bob".. and he said... "No-- thats okay"... I'm not sure what he thought I said.. But that was my attempt.. :) and my failure.. sometimes it's better to just ignore the occasions that pop up.. for my own sake..
Monday, February 9, 2015
Assessment
Sorry for the lengthy silence. I have been struggling with decisions that need to be made and my own personal demons about them.
Bobs decline and current behaviors are ever changing but the last few weeks it has been almost shocking to see the changes. Not being able to communicate anything but the jumbled word salad (as I call it) has made things even more difficult.
He had his home health assessment this past week and I am waiting for the finalized report to give to prospective Residential Care Homes. Bob did not do well on the testing and of course he really hasnt done well on it in a very long time.
After evaluating Bob and testing him they said there were several options available at this time but they highly recommended the Residential Care. Assisted living was decided against because he eats things he shouldnt and also of his toileting problem. They thought it would not be in his best interest to be unsupervised for any length of time. Home care was also an option but the Social Service worker thought the house was much to small for this to be a convenient option. Their theory was that Bob would still be trying to rely on me for help and refuse others if he could see me. Which I know is probably true.
That leaves the residential care home or Nursing Home.. The thought is to start with the least restrictive care of the Residential and then the nursing home if they have a problem with his combative nature.
All of these decisions have left me with a knot in my stomach and a very heavy heart.
Bobs decline and current behaviors are ever changing but the last few weeks it has been almost shocking to see the changes. Not being able to communicate anything but the jumbled word salad (as I call it) has made things even more difficult.
He had his home health assessment this past week and I am waiting for the finalized report to give to prospective Residential Care Homes. Bob did not do well on the testing and of course he really hasnt done well on it in a very long time.
After evaluating Bob and testing him they said there were several options available at this time but they highly recommended the Residential Care. Assisted living was decided against because he eats things he shouldnt and also of his toileting problem. They thought it would not be in his best interest to be unsupervised for any length of time. Home care was also an option but the Social Service worker thought the house was much to small for this to be a convenient option. Their theory was that Bob would still be trying to rely on me for help and refuse others if he could see me. Which I know is probably true.
That leaves the residential care home or Nursing Home.. The thought is to start with the least restrictive care of the Residential and then the nursing home if they have a problem with his combative nature.
All of these decisions have left me with a knot in my stomach and a very heavy heart.
Sunday, February 1, 2015
I cant imagine
Just when I think I cannot possibly be any more tired.. I am.
I am tired of struggling and watching Bob struggle. He is fighting hard to maintain his sense of self but quite often has been forgetting his own name. I am trying to say his name every single time I talk to him in an effort to help him remember. Its not working.....I cant imagine how terrifying that must be in his head.
I am tired of struggling and watching Bob struggle. He is fighting hard to maintain his sense of self but quite often has been forgetting his own name. I am trying to say his name every single time I talk to him in an effort to help him remember. Its not working.....I cant imagine how terrifying that must be in his head.
Friday, January 30, 2015
Walkin'
Oh what a week we have had. Bob is really struggling to stay mobile. He is often off balance and has fallen several times.We will be going to the Dr to be sure that there isnt something else wrong. I'd hate to assume it is just the progression of this nasty disease and find out it was something else that could be "fixed".
He "freezes" in doorways and wont budge or move his feet. You can take him to the bathroom but even now when you are telling him what the toilet is and what he needs to do.. he will try to use the sink, Tub or wastebasket instead.
Even though he is struggling to walk he wants to get outside. We have given up our walks around the block, for 2 walks a day from the back deck to the end of the yard. Me under one arm and a cane in his other hand we seem to be able to get those done. It may be time to consider a walker. I can see that not going over very well as I am not sure he will now what he should be doing with it at this point. It never hurts to try--right?
He "freezes" in doorways and wont budge or move his feet. You can take him to the bathroom but even now when you are telling him what the toilet is and what he needs to do.. he will try to use the sink, Tub or wastebasket instead.
Even though he is struggling to walk he wants to get outside. We have given up our walks around the block, for 2 walks a day from the back deck to the end of the yard. Me under one arm and a cane in his other hand we seem to be able to get those done. It may be time to consider a walker. I can see that not going over very well as I am not sure he will now what he should be doing with it at this point. It never hurts to try--right?
Sunday, January 25, 2015
Anger
I have talked several times about Bobs anger.. but never my own.
I try my best to keep mine in check until I am alone. Boy, is it ever difficult not to succumb to anger. I have to imagine that Dementia is, in some ways, more difficult to deal with for caregivers than other illnesses can be, mostly because the person you're caring for, in many cases has no notion of who you are, your relationship, or what you're doing for them. They don't realize how hurtful they can be, or even acknowledge that you are being overwhelmed with sadness, grief, exhaustion etc.
That being said, the anger is almost always overcome by feelings of guilt and then again the love you feel for the person in your care.
I think the anger is merely an unpleasant by-product of the un-ending stress and caring you perform out of love.
That also being said-- I am so angry tonight I think my head will explode.. GGGGRRRRR...
Lets hope for a reasonably sane day in the near future. I hate this disease.
I try my best to keep mine in check until I am alone. Boy, is it ever difficult not to succumb to anger. I have to imagine that Dementia is, in some ways, more difficult to deal with for caregivers than other illnesses can be, mostly because the person you're caring for, in many cases has no notion of who you are, your relationship, or what you're doing for them. They don't realize how hurtful they can be, or even acknowledge that you are being overwhelmed with sadness, grief, exhaustion etc.
That being said, the anger is almost always overcome by feelings of guilt and then again the love you feel for the person in your care.
I think the anger is merely an unpleasant by-product of the un-ending stress and caring you perform out of love.
That also being said-- I am so angry tonight I think my head will explode.. GGGGRRRRR...
Lets hope for a reasonably sane day in the near future. I hate this disease.
Wednesday, January 21, 2015
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.
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.
Monday, January 19, 2015
Well this is New
Bob's new quirk --is eating items that he finds. A kleenex, toilet paper, a button, a napkin, lint, a marble..if it fits in his mouth he will try to eat it. You have to watch him like a hawk. And NO-- he is not hungry..
He eats food fairly well still. So far he is maintaining a reasonable appetite. Apparently we are adding more fiber.. :)
Do you have any idea how hard it is to "man " proof your house..?
Friday, January 16, 2015
Mr Moose
The last month or so Bob seems to be having more and more trouble with his vision. Or maybe its my perception of his vision. I know Alzheimers affects the brains ability to recognize what is seen.
The Alzheimers is causing damage to his occipital and temporal lobes and these are the areas of the brain that send and receive messages to and from the eyes. Bob sees things, but what his brain is interpreting them as, is totally out of wack with reality. In an ongoing effort to keep his hands busy so he wont shred his clothing or pick at his skin I gave him a "stuffed" moose. Bob has a thing for moose!. For days he has been trying to wear the moose as a slipper or hat..
Which is kind of adorable and sad at the same time... Sigh....
The Alzheimers is causing damage to his occipital and temporal lobes and these are the areas of the brain that send and receive messages to and from the eyes. Bob sees things, but what his brain is interpreting them as, is totally out of wack with reality. In an ongoing effort to keep his hands busy so he wont shred his clothing or pick at his skin I gave him a "stuffed" moose. Bob has a thing for moose!. For days he has been trying to wear the moose as a slipper or hat..
Which is kind of adorable and sad at the same time... Sigh....
Monday, January 12, 2015
Refections of the 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.....
Wednesday, January 7, 2015
Adult care
About 4 or 5 months ago I tried getting Bob signed up for an Adult Day Care a few hours a week. They wouldnt take him because of the "anger and aggression" issues. Well they did once.. but called me before I was even back home to return and get him.
With the help of the neurologist and a change in his Prescriptions we have a handle on the anger.
The last few weeks Bobs confusion has compounded and I have really been struggling to even get the most basic of things done and decided that I would go back to the day care.
Well-- the anger and aggression are gone I thought surely they would now accept him for a few hours a week..
Nope.. apparently not.. Because he wanders.. they are not a locked center so they do not accept Patients that may wander. Neither of the adult day cares in town do...
My frustration level is over the top..
With the help of the neurologist and a change in his Prescriptions we have a handle on the anger.
The last few weeks Bobs confusion has compounded and I have really been struggling to even get the most basic of things done and decided that I would go back to the day care.
Well-- the anger and aggression are gone I thought surely they would now accept him for a few hours a week..
Nope.. apparently not.. Because he wanders.. they are not a locked center so they do not accept Patients that may wander. Neither of the adult day cares in town do...
My frustration level is over the top..
Tuesday, January 6, 2015
Piddle Schmiddle
I just want to address a problem issue a little bit.. Its not really incontinence issue as much as a
where we should go issue.
Bob no longer uses the bathroom by himself and you really need to be with him constantly to prevent him from going where ever he feels like it.
Floors, Closets, shoes, drawers, clothes hampers, garbage cans etc have all seen there fair share of pee around here. I have tried taking him to the bathroom every hour and sometimes even more. I have tried putting him in a Onesie, which he just tore at till the snaps popped off. My next step is the jumpsuits that zip in the back.
Every single time I walk Bob to the bathroom to get him where he should be to do his business.. tell him what, where, how... He looks at the toilet and says "there?" and looks disgusted... I am not sure exactly what Bob thinks the toilet is theses days.. but he sure doesnt recognise it for its intended purpose.
I am tired of cleaning urine... Ugh...
Those jumpsuits will not arrive soon enough.. I am going to try and sew one myself with a sweatshirt, and pants and a big long zipper. At least he wont be able to go without help which will give me a chance to guide him to the toilet and convince him that is where he should be going. Wish me luck.
where we should go issue.
Bob no longer uses the bathroom by himself and you really need to be with him constantly to prevent him from going where ever he feels like it.
Floors, Closets, shoes, drawers, clothes hampers, garbage cans etc have all seen there fair share of pee around here. I have tried taking him to the bathroom every hour and sometimes even more. I have tried putting him in a Onesie, which he just tore at till the snaps popped off. My next step is the jumpsuits that zip in the back.
Every single time I walk Bob to the bathroom to get him where he should be to do his business.. tell him what, where, how... He looks at the toilet and says "there?" and looks disgusted... I am not sure exactly what Bob thinks the toilet is theses days.. but he sure doesnt recognise it for its intended purpose.
I am tired of cleaning urine... Ugh...
Those jumpsuits will not arrive soon enough.. I am going to try and sew one myself with a sweatshirt, and pants and a big long zipper. At least he wont be able to go without help which will give me a chance to guide him to the toilet and convince him that is where he should be going. Wish me luck.
Sunday, January 4, 2015
Hearing Or?
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...
Thursday, January 1, 2015
Happy New Year
I am really struggling to even "like" it this year. I know many changes are on the horizon for Bob and I this year and neither of us have ever liked "change" that much.
Bob's rapid decent into the the dark world of Dementia has left me reeling and Bob in a permanent state of confusion.
I resolve to make his days a little happier if possible and try to dig a little deeper and find some added patience and humor.
A New year is a blank book,
My best wishes for you to convert it
To a beautiful story
Happy New Year to you all!
Tuesday, December 30, 2014
Sundowning
Bob is struggling more then ever with "Sundowning". His agitation and confusion are so bad from about 4:00 Pm until he goes to bed that I am struggling to care for him. The hallucinations although not as frequent, seem to be very intense. He wants something- but does not know what. He stands in the middle of the living room looking lost and confused. He often does not think he is home and becomes very upset if I dont take him to find his house. For a few weeks I could take him for a walk around the neighborhood but that does not work anymore.. Now I have to Put him in the jeep.. drive around for about 20 minutes ..then pull up to the house and say--"well here we are-- home at last.."
Sometimes it works.. Sometimes we have to do this 4 or 5 times a night...
I am feeling a bit tired and rundown. Thank goodness gas is cheaper..
Sometimes it works.. Sometimes we have to do this 4 or 5 times a night...
I am feeling a bit tired and rundown. Thank goodness gas is cheaper..
Wednesday, December 24, 2014
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.......
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.......
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