sept 21

[Grahamstown]

‘But it is not up to me , and his body kept so strong by years of rigorous walking and hiking, is not going to give up easily. His body is definately weaker, but his heart is still strong I believe. So, I cannot guess when he will be released from this world, which has no quality of life. A sad and reduced existence, for such a lovely man.’

This could have been me writing just over a year ago. My belief is that the centres in the brain which control appetite and chewing deteriorate as the disease eats into them. Similarly taste changes and sweet dominates over everything else. So the body gradually starves and that does affect the heart’s ability to function correctly, muscle mass is lost and together with all the other senses, and eventually life cannot go on.. The cruel thing is that this process is slow and steady but in my experience accelerates as the consequences of not enough nutrition starts to show. Those whose appetite is not affected can live for years with continuous deterioration so I was very thankful that my husband followed that trajectory, and I let him eat what he wanted, never forced him and nursed him as he got thinner and thinner. It’s cruel and my heart goes out to you

 

[Jaded'n'faded]

Hello TP friends,
We are now 5 months into the care home.
I go, Nick doesn't really seem to know me. Some days I am able to be of some comfort, others there seems to be no indication that I am more than another unknown person moving around him.
He seems well cared for. I go in most days for 2 to 3 hours., really turns out to be 5 days each week.
I am no longer trying to take him outside as he does not get any joy from it. He is overwhelmed by noises , the excitement of everyday life. He seems to be least anxious in the enclosed walls of the dementia ward. So, depressing.
So, I just go to his room (very grateful to go to his room) and sit and read or play solitaire or do some written correspondence. I confess I do not try to talk to him, what is the point, I no longer understand what he mumbles and I have nothing to say. It a sad situation for us both.
He is now only eating baby mushy food and drinking protein shakes. He seems to prefer sweet things not the savories. He is extremely thin now.
His perception is very bad and he walks into walls and plate glass windows even when I am right there with him.(I am no longer allowed to walk with him in the halls, I am hoping that will come back soon as all of us get vaccinated) I often find he has shuffled himself into a corner, where he is just standing when I arrive. I have no idea how long they leave him like this. But it happens when I am there too. And the staff have much to do. I do not think they leave him like that for too long.....I hope. But it is tempting as he cannot hurt himself in a corner.
He has some padding on his hips, as he has had a number of falls. Not really falls once again perception problems. He tries to sit down and misses the chair or couch and goes down on to the fall. Or at least that is what they tell me is happening. I am aware that he can no longer sit down on his own as it happens when I am there. The chair recliner we bought at Christmas lifts up and meets him which is good as he no longer wants to sit down, and becoming very afraid and calls out as you sit him in a chair.
I called a friend whose husband is not demented but living in a home as his feet have been amputated and he has diabetes. He has been in a bad way for a long time and in care for at least three or four years. She and I had a good moan last night. In the end is it is still on us to go and support our husbands as no one else will. One good friend of ours did visit Nick two times but was overwhelmed by Nick's condition. The children do not like to go and are too busy. So, it is still my job. I do not have to do it 24/7 which is a blessing and I am branching out a little bit now. Doing a little more with my life, but still so limited due to the virus.
I pray from him to die so that we can be released from this long long long hopeless situation. But it is not up to me , and his body kept so strong by years of rigorous walking and hiking, is not going to give up easily. His body is definately weaker, but his heart is still strong I believe. So, I cannot guess when he will be released from this world, which has no quality of life. A sad and reduced existence, for such a lovely man.

And this is why when I hear talk about 'living well with dementia' it makes my blood boil.

To me it seems cruel to make people (like your Nick and my mum and countless others) continue with this pointless, confused existence right to the bitter end. I'm glad it is over for me and hope it is soon over for you too @PalSal

I absolutely feel for you. Take care.

 

[Bunpoots]

This is the heartbreaking side of dementia @PalSal - the long goodbye that seems so cruel.
Look after yourself as well as Nick.

 

[jenniferjean]

And this is why when I hear talk about 'living well with dementia' it makes my blood boil.

Mine too. Unfortunately this is what gets talked about on the media the most. This is why the general public who are not involved with it directly do not see the real picture.

 

[Duggies-girl]

Such a sad post @PalSal and it is truly the worst thing in the world watching a loved one deteriorate like this. I prayed for dad to die before he got worse. A quick heart attack would have been a blessing but instead the cancer weakened him to such an extent that his body just gave up but to me this was a preferable end than the ultimate advancement of the dementia. I feel awful writing that but it is true and dad would have agreed if he had realised.

I found the physical deterioration quite shocking. Dad must have shrunk six inches in height and his frame was emaciated in the end, such a sorry sight to see. I agree with @Grahamstown that the loss of appetite eventually weakens the body so much that it just gives up.

I am glad you are beginning to branch out even if it is slowly and hopefully in the coming months things will get easier for you as the virus becomes less of a danger to everyone.

 

[PalSal]

Strange but wonderful moment.
After such a terrible day with Nicky on Wednesday. As usual he didn't seem to know me and I was not much help or comfort to him. He walked into a plate glass window and then walked himself into a corner. I was in despair.
I decided to make my visit on Thursday very brief. So, I went in with the intention of just staying a few minutes on my way to meet three friends for fresh air outside Mahjong and light lunch in the spring sunshine. When I arrived at Madle, Nick was very alert. I could understand him for the first time in many months. He said quite clearly ...Your hands are cold and he smiled directly at me focused and clear eyed. I called my friends and said I would be late as I wanted to stay with Nick in this little window of clarity. Then I took him to his room where I gave him a chocolate milk protein drink, and he gave me a couple of big hugs. Then he asked for a coffee! I got him a strong black coffee. When he finished, he clearly told me he was hungry. So, I went to the nurses who provided me with three beautiful pieces of freshly baked bread , butter and honey. I lathered the bread up with butter and honey and cut it into tiny bits so he could eat it. After the first slice was finished, he smiled and said "I'm a Pooh bear'
Unbelievable. He was awake and alert for about 30 minutes then he drifted off into sleep , but was clearly comfortable.

Granted to others, it might not seem like much, but after months for me it was a blessed moment with my lovely Nicky. It was unexpected and much needed for me. I was very grateful to be there when he had this brief moment of clarity.

 

[Izzy]

Oh goodness! How wonderful - certainly a moment to treasure @PalSal.

 

[jenniferjean]

I was very grateful to be there when he had this brief moment of clarity.

Those are the moments to hang on to. I'm so happy you had those brief moments.

 

[Sarasa]

I'm so happy to hear that @PalSal. Those sorts of visits do lift the heart so much.

 

[Banjomansmate]

So glad you were able to make the most of and enjoy that short time “together”. I remember the times when The Banjoman was prepared just to sit and hold my hand and I considered that a good visit.

 

[Grannie G]

A lovely moment. I`m so pleased you didn`t miss it @PalSal

 

[Bunpoots]

So lovely @PalSal . It’s brought a tear to my eye!

 

[notsogooddtr]

A moment to treasure. I remember one time visiting my Dad in his NH, he was at a very advanced stage at this point. As I walked in he was being wheeled along the corridor in his wheelchair, he looked at me and said'That's my daughter' I was flabbergasted.

 

[None the Wiser]

Thank you for continuing to post @PalSal. We are just a few months behind you in our journey, and it all sounds so familiar. My husband is still at home but doesn’t know me. He ‘falls’ several times a day because he has lost his spatial awareness and doesn’t know where the seat is. He walks into walls, mirrors and windows. I’m not able to keep him safe anymore on my own at home, and although we have a Carer coming in it’s not enough. I’ve just started the process of finding a care home that will be able to meet his many needs.
I feel as though I’m treading in your footsteps. It’s really helpful to hear how things are in the home. I feel it will be much the same for us. It will be so strange to be visiting someone that has no idea who you are. The home can’t give the same attention that they had at home, and to think of them being left anxious and confused even for a few moments is dreadful - but there seems no choice.
It felt quite spring like in the South Coast of England today, and Inwanted to spend time in my small garden, but couldn’t because I can’t leave my husband for more than a few moments. I suddenly caught a glimpse of freedom, and felt very guilty.

 

[Justmary]

Oh @PalSal and @None the Wiser - me too! I'd never heard anyone else mention this "walking into a corner ", but my husband started doing this last year. He would stay there for ages until I physically lead him away. It just looks so weird, as if you're punishing a big naughty toddler. And then walking into windows, and then having falls, and then... yes, me too.
He hasn't known who I am for quite a while, so I'm not expecting any lucid moments any time soon, but you never know.

 

[PalSal]

As many of you know my journey with my Nicky has been an usually long one. Coming up to 20 year marker. He was so young when it all began....But it is the slow slow Chinese torture water drip this disease as it robs a person of their life, intelligent, personality. I have always gotten very upset with people minimize this disease. Many are ignorant and think its about it as an inconvenience like lost keys or perhaps some loss of short term memory....but .Alzheimers is total loss of self, for many of its victims (I know this forum does not like us to us the word victim-but what else can we call it -with no cure in sight) Actually,no new approved treatments or successful medications since our diagnosis. That depresses me.
Also, I guess in the early years there were some happy times and moments, but I resent all the happy pictures on the site and advertisements happy smiling faces. My experience is we had to work very very hard for happy and smiles, and now we do not have many smiling moments. I think the site and the charities need to re -evaluate the images portrayed and include the reality of the lost and forsaken who are as this site say affected by Alzheimer's.

That is my RANT today...I am not sure where it came from.

 

[Grannie G]

That is my RANT today...I am not sure where it came from.

It came from the heart @PalSal

It`s so frustrating when people do not appreciate the toll dementia takes on us all. My sister used to tell me my husband needed a `project` because his challenging behaviour was probably due to boredom. There was no point in explaining.

That was nearly 20 years ago and as far as outsiders are concerned little has changed.

 

[None the Wiser]

@PalSal - me too once again! Very, very few smiling or happy moments. People talk about ‘contented dementia’, there is little contentment here for either of us. And yes, I really agree with you about all the pictures depicting happy couples coping well, or joining in with amazing activities etc.
The day to day now is hard, hard work. To be honest, it feels like torture most of the time. I do try to start each day, or even each part of the day, with optimism and energy, but it rarely lasts. Some people say that the experience can help develop you in positive ways. I don’t think that’s what’s happening to me. Most of the time it seems to bring out the worst in me e.g. resentment, frustration, and sadness.

 

[Jaded'n'faded]

As many of you know my journey with my Nicky has been an usually long one. Coming up to 20 year marker. He was so young when it all began....But it is the slow slow Chinese torture water drip this disease as it robs a person of their life, intelligent, personality. I have always gotten very upset with people minimize this disease. Many are ignorant and think its about it as an inconvenience like lost keys or perhaps some loss of short term memory....but .Alzheimers is total loss of self, for many of its victims (I know this forum does not like us to us the word victim-but what else can we call it -with no cure in sight) Actually,no new approved treatments or successful medications since our diagnosis. That depresses me.
Also, I guess in the early years there were some happy times and moments, but I resent all the happy pictures on the site and advertisements happy smiling faces. My experience is we had to work very very hard for happy and smiles, and now we do not have many smiling moments. I think the site and the charities need to re -evaluate the images portrayed and include the reality of the lost and forsaken who are as this site say affected by Alzheimer's.

That is my RANT today...I am not sure where it came from.

I so agree with this and have had the same rant on here many times!

I used to refer to mum's care home as the Home of Lost Souls and the Severely Bewildered.

As you say, it's not the loss of memory that's the problem, it's the loss of self. Once that has gone, what quality of life can there be? We reassure ourselves that they are cared for (which they are) and people tell us they are happy in their own little world. How can you be happy when you don't know who you are or where you are or why?

 

[PalSal]

I wake up negative most days, Daily I practice my prayer and meditation, to attempt to put my mind in the right place. It is difficult to spend time in the room with Nick, he was peaceful yesterday and smiled at me but did not talk. I go to him, but as I said I do not try to talk either. I play music for him and sit next to him, stroking his head and patting his hand. Somewhere there is a principle of love...mostly I feel saddness and guilt, love is there but under these two stronger feelings. I feel the obligation and the guilt we all feel when we institutionalize our loved ones. Life is so quiet anyway, I am not working , my only other commitments are helping with my daughter's children and driving with my youngest, as he finally learns to drive. My life is humble and quiet. I am grateful I have so few problems or drama, grateful that Nick is cared for and that at least I am with him a few hours most days (5 to 6 days a week).

There is hope on the horizon. Things will change and I will have art and music again in my life. The zoo and the museums opened for the first time since Nov. I, yesterday. I am going to go to the Rodin/Arp exhibition at the Beyeler Foundation soon....I will go during the week. I am planning an outdoor Hootananny on March 21 (weather permitting with some of my folk musician friends) It will be outside and,of course, social distance as of yesterday 15 friends and family are permitted to gather outside. I have also committed to 4 voice lessons starting on Thursday. I do not want my voice muscles to atrophy from lack of use. I have been playing my guitar a little in an effort to cheer myself up, and also for the disciple.