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They don't tell you these things...

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Everything you have said is so true. I feel you should publicise the
"dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx
You have every right to feel miserable Casbow :( I wish I could help practically, but all we can do on here is share and offer support. I hope you have at least some help in the form of care at home, day care, respite, that kind of thing?

Massive (((hugs))) to you

Lindy xx
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
Everything you have said is so true. I feel you should publicise the
"dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx
Hi casbow.

Don't be sorry, we all have our down days. Your story is a duplicate of mine. Life is sad living with D. One of the reasons I come on TP was because everyone is so understanding, supporting and helpful. Try visiting Positives for our daily chats. It's about anything, shopping, the weather, our gardens decorating. I know it doesn't alter anything, but, we are all in the same boat and help each other, and we don't feel quite so alone.

I have come to accept the situation over the last 14 years. I just take it a day at a time. I try to look at the good things left for me. I am grateful OH is still with me. The little things are treasured, smiles now and again. The times when he wants to hold my hand, gestures for a little kiss or a cuddle, the very occasional I love you, even though he doesn't know we're married, but, I firmly believe deep down they still have their feelings for us, even if they can't remember.

Take care, TP is here for you. Have a peaceful night. Hugs M xxx :)
 

chick1962

Registered User
Apr 3, 2014
11,282
near Folkestone
Everything you have said is so true. I feel you should publicise the
"dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx
Good morning casbow, I am sorry you are feeling lonely and isolated. It gets to all of us at one point or another . This disease is just so difficult to deal with as we can't do nothing to stop it . I echo what Mal says and I also live day by day . Treasured moments keep me going, a smile , holding hands and the love which is still there just in a different form . I also have a son, who finds it difficult so don't hear or see as much of him as I like too . Boys are never as good talking about things as girls . They keep a lot in . Hoping today is a little easier for you?! Sending hugs your way and keep on posting xxxxxxxx


Sent from my iPhone using Talking Point
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
Everything you have said is so true. I feel you should publicise the
"dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx
I'm right there with you, Casbow. Lived all of it. The abandonment; isolation; fear; anger; tears; hopelessness. It's a dreadful experience.

One book I had said that our isolation is similar to those who get put into solitary confinement in prison. Don't know how long they get, but for me, it was six and a half years. Plus being called a liar, virtually, in my own home; being threatened, (not by husband, I might add), and finding the whole asking for help thing far too harrowing and frightening, in the end, so I just stopped asking.

Apart from that - when hubby finally got put into full time care five months ago, he's since been thriving. It took a third crisis to get there, but he's being looked after, now. The fact he's been diagnosed as not having capacity almost made me laugh. I could have told them that four years ago. But thank God, a lot of the agony has now been lifted. I can only hope someone eventually sorts your situation out. Please feel free to PM me if you need a bit of company and support, xxxxxxxxx
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
I'm not even sure if this is going to the right reply. You're right they don't tell you a lot of a lot of it wouldn't be believed if they did. The testing does not have a baseline for the intelligent just for those of that age and education. It's geared to when the person is well down the path and we can get lost in the meantime. I'll leave as short story I wrote in hope the literary sense strikes the heart like the words of a song are nothing without the notes. It basically tries to bring all the "they didn't tell me" to the impossible process and the possibilities. If it makes sense I hope it does

Restoring by Remaining- A short story to describe the indescribable patient's trek

All of this is more difficult than I had imagined. I wasn’t given a choice. It was given to me. Now I, and I alone, will attempt to save what I can before time makes it worthless.

When you look at my task you see a large old cedar trunk that needs to be restored. In my heart’s eye I see a closing mind of dementia, and my task to appear the same. The large cedar chest still has worth, and the amount of value will depend on how well I can remove the stain.

I walked around it several times. Why? I don’t know. It was the same chest of my youth. I had walked by it each day as I went to work or to play or to visit family. You would think it would be familiar, but before it was just there and served its purpose without notice. It stored the trinkets of my childhood, the athletic medals of my youth, and the essays of my work.

Somehow the lock became jammed and the most skilled locksmith have tried but failed to retrieve its treasure. The value is inside but unreachable. My task was to make the outside as pretty as possible so someone, not knowing the treasures inside, won’t come and throw it as trash or place it in the dusted back room of an antique store with other such chests.

I stopped walking and got on my knees to feel the once fine wood. My fingers could feel more than eyes could see in the darkened room. The wood smith, creator of the chest, had skillfully lathed the wood so the corners were softly rounded unlike any other chest. This wasn’t just another chest. It was specially made, and I had to restore it.
My fingers felt the normal small dings of any old chest, but then they fell into deep gashes which years ago had almost split the wood.

I had forget those marks, but the creator made the chest strong enough to weather the wear. Then I remembered what left the marks more vividly than the moment. I saw the marks and forgot the beautiful rounded corners.
I wanted to get up and leave the marked chest. It disgusted me now. Then I remembered my task that only I could do. I needed to leave something of beauty for others to see.

At first I wanted to putty the marks to hide that they ever existed. But they did and they had, and if I was to restore the chest I wouldn’t hide what it was.

So I worked and polished and restored what could be restored. I soon found my hands were clumsy and I didn’t follow the needed steps. My efforts were futile but the more I worked the more my hearts saw the treasures inside. And I remembered.

Soon I knew others would still see an old chest, but I, but I, would know the treasures inside. I worked on for that day and now today to make what I can of that chest for others to see. Yet, it is not what others see that will measure the beauty of that chest. It is the treasure I know lie inside, and the warmth of knowing the Creator has made a chest whose beauty will never fade, and He one day will restore in even greater beauty what had been and what will be.

Finally my work made it clear. My task could not be completed by "me and me alone" but by me and Him who had created and His Spirit who does restore. I am too weak but He is strong and forever near.

That's beautiful.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
My husband is in tears because he says nobody wants to talk to him. He woke me at 03.15, almost twelve hours ago, and. I've been right beside him ever since. Even when I was going to the toilet he wanted the door open so that he could know here I was. I'm exhausted, bodily and mentally, from trying to run the home and life where we shared the tasks, but now I must do everything. And because I've been looking at my iPad, he says no one wants to talk to him, no one visits, and no one cares. We see people almost every day, we've been out today, I 'm probably too tired to drive but I must, I think of entertainments every day, but none of that is enough, because he lives in the NOW, and right now I'm sitting quietly and he thinks nothing has happened today.To quote from the song, Life is a Cabaret. And the show must go on.

So when am I supposed to find the time or energy to ask for anything?
 
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Mal2

Registered User
Oct 14, 2014
2,968
Enfield
My husband is in tears because he says nobody wants to talk to him. He woke me at 03.15, almost twelve hours ago, and. I've been right beside him ever since. Even when I was going to the toilet he wanted the door open so that he could know here I was. I'm exhausted, bodily and mentally, from trying to run the home and life where we shared the tasks, but now I must do everything. And because I've been looking at my iPad, he says no one wants to talk to him, no one visits, and no one cares. We see people almost every day, we've been out today, I 'm probably too tired to drive but I must, I think of entertainments every day, but none of that is enough, because he lives in the NOW, and right now I'm sitting quietly and he thinks nothing has happened today.To quote from the song, Life is a Cabaret. And the show must go on.

So when am I supposed to find the time or energy to ask for anything?
Oh Anne,

I'm sorry you are having such a bad day. It is so hard, I don't have the words to put it right. Stan likes me to sit with him, hold his hand or give him a comforting cuddle, if I go out of the room he is calling my name, then when I ask what he is calling me for, he looks at me quizzically. If only we knew what was going on inside their minds.

I hope hubby settles, and you manage to get some well earned rest. My thoughts are with you. Lots Huuuuugggs M xxx :)
 

Summerheather

Registered User
Feb 22, 2015
160
It's a horrible lonely disease. Today my Mum fell again, and has broken her wrist - again. This morning I found the toilet covered in poo, the floor, mat, basin. Her bedroom door was open, she was sat in her chair whilst her bed was covered in, yes, you've guessed it poo. So before I had to leave for work at 7am I had to sort it all out.

Then I had to leave early after hearing that she had fallen again.

It just doesn't seem to end.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
It's a horrible lonely disease. Today my Mum fell again, and has broken her wrist - again. This morning I found the toilet covered in poo, the floor, mat, basin. Her bedroom door was open, she was sat in her chair whilst her bed was covered in, yes, you've guessed it poo. So before I had to leave for work at 7am I had to sort it all out.

Then I had to leave early after hearing that she had fallen again.

It just doesn't seem to end.
Oh Summerheather,
What an awful start to the day. Perhaps you could get your Mam to wear pull ups at night, at least they stop 'it' going everywhere. I don't know what kind of facilities you may have or if you have help, but, have you spoken to your Doctor to see if a carer could come in? I do hope your Mam is ok after her fall, so sorry she broke her wrist again. Could your local Dementia centre offer help in the way of advice? Sending you many hugs. M xxx
 

Summerheather

Registered User
Feb 22, 2015
160
Oh Summerheather,
What an awful start to the day. Perhaps you could get your Mam to wear pull ups at night, at least they stop 'it' going everywhere. I don't know what kind of facilities you may have or if you have help, but, have you spoken to your Doctor to see if a carer could come in? I do hope your Mam is ok after her fall, so sorry she broke her wrist again. Could your local Dementia centre offer help in the way of advice? Sending you many hugs. M xxx[/QUOTE

Yes, we do all of that. I don't really want anymore advice from any dementia centres, I've really had my full up of 'advice and sign posting and nice glossy leaflets.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
Oh Summerheather,
What an awful start to the day. Perhaps you could get your Mam to wear pull ups at night, at least they stop 'it' going everywhere. I don't know what kind of facilities you may have or if you have help, but, have you spoken to your Doctor to see if a carer could come in? I do hope your Mam is ok after her fall, so sorry she broke her wrist again. Could your local Dementia centre offer help in the way of advice? Sending you many hugs. M xxx[/QUOTE

Yes, we do all of that. I don't really want anymore advice from any dementia centres, I've really had my full up of 'advice and sign posting and nice glossy leaflets.
I can understand that. Why don't you joins us on 'Positives' where we can give you hugs and support. Hope you have a restful night. M xxx :)