Who has stolen my husband?

Sad Staffs

Registered User
Jun 26, 2018
696
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My OH needs his set routine to get him through the day too. We cant go away on holiday now and I think having builders in would produce the same results here too :rolleyes:. Heres to building work finishing and back to peace quiet and routine!

BTW, Im sure sure you know that

is Host Mode, but it is hard to get your head round it. When you see it, its easy to convince yourself that he could be like that all the time. Really, though, you know he cant. Host Mode takes our PWD so much effort that they cant maintain it for long and it leaves them exhausted and grumpy
Thank you. Host mode has become obvious. He changes before I have shut the door! It’s so quick, I don’t have chance to get back into loving carer mode!
How I would love a holiday. We have had some fab ones over the years, but now impossible to go anywhere, except hospital, GP, supermarket. We have a 3 hour incontinence pad time frame. Can’t go over that. That’s it.
We do have the occasional lunch in a local pub. But I get indigestion rushing and worrying!! B x
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
It's important for both of you to socialize. It's so hard with incontinence issues. Could it be he is so talkative to the social workers because he needs the interaction. My husband is exactly the same I believe in the Garden of Eden Eve was created to communicate with Adam and so the story goes.:) Good Luck & All The Best.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
When we go out its usually hospital @Sad Staffs staff - we have seen a lot of different departments recently! I cant take him to supermarkets, he wanders off and gets lost. Its like having a 2 year old! Anywhere what has a lot of people and/or noise is too much for him - he gets stimulus overload. I can see his eyes glazing over and he gets so confused.
Could it be he is so talkative to the social workers because he needs the interaction.
I think its more the need to hide symptoms and appear normal - quite often I think its subconscious. When its just OH and me he really doesnt want me talking to him. I get lots of huffing and puffing and accusations of trying to tell him what to think :(. I spend hours and hours sitting with him in silence and he is perfectly happy. He is just constantly sitting with his android, reading stuff on facebook, twitter and the news . That is all he wants.
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
It's important for both of you to socialize. It's so hard with incontinence issues. Could it be he is so talkative to the social workers because he needs the interaction. My husband is exactly the same I believe in the Garden of Eden Eve was created to communicate with Adam and so the story goes.:) Good Luck & All The Best.
I don’t think he wants anyone except me. He suffocates me.
Yes he needs interaction with others, but I’m not sure he would go to any Alzheimer’s groups, etc. In fact he doesn’t want to do anything, or go anywhere. He has never been sociable, so it’s not going to start now. It’s no wonder he is depressed, as you say he could do with socialising.
It’s destroying me, slowly but surely.
Take care xx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
When we go out its usually hospital @Sad Staffs staff - we have seen a lot of different departments recently! I cant take him to supermarkets, he wanders off and gets lost. Its like having a 2 year old! Anywhere what has a lot of people and/or noise is too much for him - he gets stimulus overload. I can see his eyes glazing over and he gets so confused.

I think its more the need to hide symptoms and appear normal - quite often I think its subconscious. When its just OH and me he really doesnt want me talking to him. I get lots of huffing and puffing and accusations of trying to tell him what to think :(. I spend hours and hours sitting with him in silence and he is perfectly happy. He is just constantly sitting with his android, reading stuff on facebook, twitter and the news . That is all he wants.
He does come to the supermarket, but we go to the cafeteria for a ‘buttered bun’ as he puts it and a pot of tea. That done, he goes and sits in the car puts the radio on and somehow stops everything else from working properly (every time!!) while I shop, struggle to pack, pay, put bags in the boot, drive home, unpack car, he comes in, I put shopping away, make a cup of tea, and he reads radio times,
What would happen to our partners with dementia if we carers said ‘NO, enough is enough’, I want a life? xx
 

kindred

Registered User
Apr 8, 2018
2,937
0
My OH needs his set routine to get him through the day too. We cant go away on holiday now and I think having builders in would produce the same results here too :rolleyes:. Heres to building work finishing and back to peace quiet and routine!

BTW, Im sure sure you know that

is Host Mode, but it is hard to get your head round it. When you see it, its easy to convince yourself that he could be like that all the time. Really, though, you know he cant. Host Mode takes our PWD so much effort that they cant maintain it for long and it leaves them exhausted and grumpy
I think I used to go into host mode when I was an adolescent. Then was exhausted by effort of being sweet and pleasant and went back to being dark and hostile! I'm not joking ... love and best, Kindred.
 

kindred

Registered User
Apr 8, 2018
2,937
0
He does come to the supermarket, but we go to the cafeteria for a ‘buttered bun’ as he puts it and a pot of tea. That done, he goes and sits in the car puts the radio on and somehow stops everything else from working properly (every time!!) while I shop, struggle to pack, pay, put bags in the boot, drive home, unpack car, he comes in, I put shopping away, make a cup of tea, and he reads radio times,
What would happen to our partners with dementia if we carers said ‘NO, enough is enough’, I want a life? xx
That is interesting because we have a right to do that, we have a right to refuse. No adult has to look after another adult. The system keeps going because we don't do this of course. We would have to go through the financial business, splitting assets as they would presumably have to go into a home. So yes, of course it can be done, it's simply the equivalent of a self funder putting their partner into a home.
If you can't self fund, then the LA would have to take them on, but there would be a lot of blackmailing argy bargy as you can imagine!
with best love, with you all way, Geraldinexxxx
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
When we go out its usually hospital @Sad Staffs staff - we have seen a lot of different departments recently! I cant take him to supermarkets, he wanders off and gets lost. Its like having a 2 year old! Anywhere what has a lot of people and/or noise is too much for him - he gets stimulus overload. I can see his eyes glazing over and he gets so confused.

I think its more the need to hide symptoms and appear normal - quite often I think its subconscious. When its just OH and me he really doesnt want me talking to him. I get lots of huffing and puffing and accusations of trying to tell him what to think :(. I spend hours and hours sitting with him in silence and he is perfectly happy. He is just constantly sitting with his android, reading stuff on facebook, twitter and the news . That is all he wants.
Hi Canary:

How do you do it? I take everything personally. I just don't get it, if he can talk to others why not me. I don't think I'm an awful person. Is what you trying to tell me is just to leave him alone. His PSW came today and she asked him HOW HE IS? He said better now that you are here. How do I not take that personally?

Thanks, maybe one day it will make sense.:)
 

kindred

Registered User
Apr 8, 2018
2,937
0
Hi Canary:

How do you do it? I take everything personally. I just don't get it, if he can talk to others why not me. I don't think I'm an awful person. Is what you trying to tell me is just to leave him alone. His PSW came today and she asked him HOW HE IS? He said better now that you are here. How do I not take that personally?

Thanks, maybe one day it will make sense.:)
My beloved husband flirts outrageously with the nurses who flirt outrageously with him. I can't get quite such an excited response, mind you I am not a natural flirt. Please try not to take it personally, I don't want you to keep getting hurt by this sweetheart. With love, Kindred. xx
 

Rosebush

Registered User
Apr 2, 2018
1,478
0
He does come to the supermarket, but we go to the cafeteria for a ‘buttered bun’ as he puts it and a pot of tea. That done, he goes and sits in the car puts the radio on and somehow stops everything else from working properly (every time!!) while I shop, struggle to pack, pay, put bags in the boot, drive home, unpack car, he comes in, I put shopping away, make a cup of tea, and he reads radio times,
What would happen to our partners with dementia if we carers said ‘NO, enough is enough’, I want a life? xx
I know what you mean about shopping except we haven't got a car anymore so most days we catch the bus to pick up bits and pieces as we can't carry much,I hate spending so much time on the bus as there is always somebody coughing or sneezing:eek:, but today I managed to get to Currys to order a new dishwasher and not the cheapest this time as now I am in charge of the spending OH was always in charge so it was always the cheapest because he was so tight. Lxx
 

Lady M

Registered User
Sep 15, 2018
298
0
Essex
@scaggymag just read your post and some of the reply’s.
I, like you am a new member!
After two years still awaiting diagnosis!! I have no doubt!
After an emergency admission to hospital with DKA the result of forgetting his insulin I was told by the diabetic nurse, it now my responsibilitiy!!!
Sitting in the silence, here now , which he seems to like, I was thinking apart from that I have had to take responsibility for everything for years!!!
I don’t know what is the future!
I am just glad to have found this forum!
I trust we can both learn for it and face the unknown!
Hugs in post x x x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
I shop, struggle to pack, pay, put bags in the boot, drive home, unpack car, he comes in, I put shopping away, make a cup of tea, and he reads radio times,
That caused a wry smile of recognition. It is just so typical of FTD.

I have just had a phone call from daughter to say that her aunt (my sister in law) is in ICU in the local hospital with internal bleeding and they are going to do emergency surgery within the next couple of hours. Daughter is going over to be with the family and I have phoned to find out what is happening and to offer any services that I might be able to do with OH in tow. OH, meanwhile just nodded when I told him the news and is more concerned about his dinner..............
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi Canary:

How do you do it? I take everything personally. I just don't get it, if he can talk to others why not me. I don't think I'm an awful person. Is what you trying to tell me is just to leave him alone. His PSW came today and she asked him HOW HE IS? He said better now that you are here. How do I not take that personally?
Its not easy and takes a while to get from your head to your heart. I still havent mastered it. It probably sounds as though I cope better than I really do. If you read my thread Carer Breakdown? you will know that Im not coping very well at all ATM
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
Its not easy and takes a while to get from your head to your heart. I still havent mastered it. It probably sounds as though I cope better than I really do. If you read my thread Carer Breakdown? you will know that Im not coping very well at all ATM

Hi:

I think my biggest worry is failing. Everything is on me these days. I have to make all the decisions. I lived with my parents and they took care of me, if I made bad decisions they were there to help. From living with my parents I got married and if I messed up my husband was always there to pick up the pieces and fix everything. Now there is nobody to pick up the pieces if I fail. After a lifetime of saving for retirement I might end up homeless. These days all it takes is on bad decision and I'm terrified.
The dementia isn't as terrifying to me as failing. One way or another I can cope with the dementia but letting my husband, my son & myself down is a different story.
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
I know what you mean about shopping except we haven't got a car anymore so most days we catch the bus to pick up bits and pieces as we can't carry much,I hate spending so much time on the bus as there is always somebody coughing or sneezing:eek:, but today I managed to get to Currys to order a new dishwasher and not the cheapest this time as now I am in charge of the spending OH was always in charge so it was always the cheapest because he was so tight. Lxx
I love it... buying the one you want, not the one that they want! This must be carer power x
Hope you have a good nights sleep, take care, love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
That caused a wry smile of recognition. It is just so typical of FTD.

I have just had a phone call from daughter to say that her aunt (my sister in law) is in ICU in the local hospital with internal bleeding and they are going to do emergency surgery within the next couple of hours. Daughter is going over to be with the family and I have phoned to find out what is happening and to offer any services that I might be able to do with OH in tow. OH, meanwhile just nodded when I told him the news and is more concerned about his dinner..............
First, I hope that your sister in law recovers well from her emergency urgent.
Thinking of you. xx
Second... I now know, but hate, that if it isn’t about my husband or for my husband, then he’s not interested. Where has their care and compassion gone? They just care about themselves... so selfish.
Yes, I realise it is not his fault, it’s his dementia.
But it’s not my fault either and I don’t deserve this.
Love B xx
 

Rosebush

Registered User
Apr 2, 2018
1,478
0
I love it... buying the one you want, not the one that they want! This must be carer power x
Hope you have a good nights sleep, take care, love B xx
Thanks B, hope you have a good nights sleep aswell, just hoping OH has a shower tomorrow, had to cut his toe nails today as I think he has forgotten how to, don't know how long since he last did them they were just like claws. Love Lxx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Hi:

I think my biggest worry is failing. Everything is on me these days. I have to make all the decisions. I lived with my parents and they took care of me, if I made bad decisions they were there to help. From living with my parents I got married and if I messed up my husband was always there to pick up the pieces and fix everything. Now there is nobody to pick up the pieces if I fail. After a lifetime of saving for retirement I might end up homeless. These days all it takes is on bad decision and I'm terrified.
The dementia isn't as terrifying to me as failing. One way or another I can cope with the dementia but letting my husband, my son & myself down is a different story.
I hear what you say, and so understand.
I too was looked after by wonderful mom and dad, got married at 18, had two boys by the time I was 22, got divorced after 11 years, and remarried within 2 years, and a happy 40 plus years of marriage and I had a wonderful career.... until recently,
and although my husband is still here, he is only here physically. And it’s such a lonely stressful existence.
I’m thinking of you, take care of yourself, love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Thanks B, hope you have a good nights sleep aswell, just hoping OH has a shower tomorrow, had to cut his toe nails today as I think he has forgotten how to, don't know how long since he last did them they were just like claws. Love Lxx
I’m so proud of you.... cutting his toe nails. My husband did his own, made them bleed, so now I too have that job. I think other people’s feet, whoever they are, is above and beyond the call of duty!!
But I guess I will, next time, otherwise he might lose a toe!
Love B .... Zzzzzzz tonight xx
 

MaddieJ

Registered User
Sep 1, 2017
60
0
Dear @canary I also relate to your post, especially the bit about fighting you and accusing you of taking him over.
I’ve always been capable but now I’m learning skills I don’t want. I don’t mind, I just want someone to tell me I’m doing it right, and to say well done. I wish I didn’t have to worry about him and everything else in our life.
He can’t use his computer, and he was the computer geek of the two of us. Trouble is he gets angry that I’m watching him making sure he doesn’t buy something or open something he shouldn’t.
Do you ever stop worrying! I lie in bed and think ‘what sort of life is this, and it will get worse’. Then I have a good cry, get cross with myself, and think just get on with it, what is the alternative?
Thank you for your post, love B xx
Me too! Days are only tolerable but evenings are hell. I look at him and feel his pain as he cannot understand where he is or whats happening to him. I comfort him and ask him to trust me, I tell him I love him, I tell him he is safe. It doesn't work and I get told I am no help. It goes on repeatedly until I con him and tell him were staying here tonight. His mood changes then I am someone else yet the same. Tomorrow will be the same. I miss him so much even though he is here.I want to scream.