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I'm so ashamed.

Francy

Registered User
Dec 3, 2018
70
Co Down
Yesterday I totally lost it, I'm so ashamed of myself, I normally manage to cope, but just snapped, I suppose it's been coming for a long time, I'm just so tired. I have not been out of the house for weeks except to keep a hospital appointment, so I'm with JH all day every day, there's no getting away, all my shopping is delivered, we live in a rural village. But since just over a week ago JH decided he can't eat food he needs to chew as it sticks in his teeth, I'm trying my best to please him and give him a healthy diet but he just says no to most things offered, when I ask what would he like, he says he doesn't know as he's not the cook and can only tell me what he doesn't want. Also he won't drink much as he's says it's making him pee too much. So yesterday when I made him a sausage sandwich for breakfast which he usually really likes, you'd think I put something weird and horrible on his plate, well as I say to my shame I just lost it, I don't remember when I last cried so hard or so much, so I've gone from tired to exhausted and he harped on about that sandwich for hours afterwards. I am do not coping with the new turn of events, I was managing OK up until this food thing and it's not as if I can just go to the shops and get something else. Today I hate myself for my outburst.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,881
Merseyside
@Francy please don’t beat yourself up. You’d need to be a saint not to snap at some point.
Do you get any help? Does he go to a Day Centre to give you a break?
 

nae sporran

Volunteer Host
Oct 29, 2014
6,554
Bristol
Sorry you are under so much stress Francy, and at a time when support services are shutting down. You shouldn't be so hard on yourself though, it happens to everyone sometime.
You really need respite I would suggest, and your social services should have emergency places available, so please call their out of hours service and explain how bad it is getting. That would give you time and space to think and to sleep.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,660
Kent
It happens @Francy. All we can do is let it go and try to get some help.

I realise it`s a tall order for those in rural areas and I also appreciate the level of support I received 8 years ago is now almost non existent so you can be excused the odd outburst.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
@Francy please don’t beat yourself up. You’d need to be a saint not to snap at some point.
Do you get any help? Does he go to a Day Centre to give you a break?
No Cat27, my husband has not even been to doctor yet for diagnosis, he is putting it off till after Christmas. There is no doubt he has dementia though, and I think he's had it for at least a couple of years, but the last three month have been a nightmare, he now knows and admits to his problem, which is progress indeed. So I've no help and no family and I am on my own with him. I spoken to my doctor who has given me diazapam to help me with anxiety, but I hate taking them and I also need to take them for a back problem I have,so also need to reply on them for pain relief. Believe me I love my husband dearly, he was and is a lovely man, but sometimes he becomes this stranger. I just need to cope better.
 

Cat27

Volunteer Moderator
Feb 27, 2015
10,881
Merseyside
No Cat27, my husband has not even been to doctor yet for diagnosis, he is putting it off till after Christmas. There is no doubt he has dementia though, and I think he's had it for at least a couple of years, but the last three month have been a nightmare, he now knows and admits to his problem, which is progress indeed. So I've no help and no family and I am on my own with him. I spoken to my doctor who has given me diazapam to help me with anxiety, but I hate taking them and I also need to take them for a back problem I have,so also need to reply on them for pain relief. Believe me I love my husband dearly, he was and is a lovely man, but sometimes he becomes this stranger. I just need to cope better.
You don’t need to cope better. You need help & support. Dementia is a dreadful illness so please contact Social Services for help.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
Yesterday I totally lost it, I'm so ashamed of myself, I normally manage to cope, but just snapped, I suppose it's been coming for a long time, I'm just so tired. I have not been out of the house for weeks except to keep a hospital appointment, so I'm with JH all day every day, there's no getting away, all my shopping is delivered, we live in a rural village. But since just over a week ago JH decided he can't eat food he needs to chew as it sticks in his teeth, I'm trying my best to please him and give him a healthy diet but he just says no to most things offered, when I ask what would he like, he says he doesn't know as he's not the cook and can only tell me what he doesn't want. Also he won't drink much as he's says it's making him pee too much. So yesterday when I made him a sausage sandwich for breakfast which he usually really likes, you'd think I put something weird and horrible on his plate, well as I say to my shame I just lost it, I don't remember when I last cried so hard or so much, so I've gone from tired to exhausted and he harped on about that sandwich for hours afterwards. I am do not coping with the new turn of events, I was managing OK up until this food thing and it's not as if I can just go to the shops and get something else. Today I hate myself for my outburst.
I just want to assure you that you are not alone in snapping under the pressure of living with a completely disconnected person. I do this too when it all becomes too much and I snap. My husband is also a dear man and I grieve for what has gone. You definitely should not feel ashamed, it is only human to react when things get so bad and I think it is a form of release.
 

Spamar

Registered User
Oct 5, 2013
7,066
Suffolk
I remember snapping and losing it completely. He must have understood, cos he was back to his old self for a day or two! Almost as if host mode was directed at me!

You really need to get the diagnosis sorted ASAP, it can take ages. That entitles him to attendance allowance, which helps. I know you are rural, but see if there is anything available that will give you a break. He is not going to get better, but you can get help to cope.

Otherwise you will get carers breakdown and he will be in a home sooner rather than later.

Chin up!
 

Sad Staffs

Registered User
Jun 26, 2018
677
Yesterday I totally lost it, I'm so ashamed of myself, I normally manage to cope, but just snapped, I suppose it's been coming for a long time, I'm just so tired. I have not been out of the house for weeks except to keep a hospital appointment, so I'm with JH all day every day, there's no getting away, all my shopping is delivered, we live in a rural village. But since just over a week ago JH decided he can't eat food he needs to chew as it sticks in his teeth, I'm trying my best to please him and give him a healthy diet but he just says no to most things offered, when I ask what would he like, he says he doesn't know as he's not the cook and can only tell me what he doesn't want. Also he won't drink much as he's says it's making him pee too much. So yesterday when I made him a sausage sandwich for breakfast which he usually really likes, you'd think I put something weird and horrible on his plate, well as I say to my shame I just lost it, I don't remember when I last cried so hard or so much, so I've gone from tired to exhausted and he harped on about that sandwich for hours afterwards. I am do not coping with the new turn of events, I was managing OK up until this food thing and it's not as if I can just go to the shops and get something else. Today I hate myself for my outburst.
Hi Francy
I just wanted you to know that I’m thinking about you. Please don’t hate yourself. You are only human and they test us to our limits.
Everything you wrote I understand, and I experience too. I’m at a similar stage with my husband.
I sometimes feel that it’s just me experiencing this, then I come on here and it’s like a revelation that I’m not alone, but.... I am still alone.
It’s so hard seeing this person you love so much, saying and doing things that you don’t understand and don’t like. It’s just horrible, awful. I wish it were possible for people like us to meet, share our feelings, because you and I, and many others really do understand.
I’m not going to say stay strong, because sometimes it’s not possible.
But I’m sending love to you, I’m here for you.... with love Barbara xx
 

Fullticket

Registered User
Apr 19, 2016
475
Chard, Somerset
This is not a negative comment but a realistic one. I looked after my mum for a long time. When I started out I had no idea what this would entail. Looking back at it, what I was doing towards the end I would never, ever have contemplated at the beginning. I snapped innumerable times and over the 'silliest' things. A sausage sandwich would have been a trigger because, in the scale of things, it is a minor irritant but you can't snap about the larger issues such as incontinence, being unable to hold a thought for more than a second, not wanting to wash. It was also a new symptom and we have to give ourselves time to assimilate and move on.
You need some help and the beginning of the help would be a proper diagnosis. In the meantime, get on to social services and explain to them what you are feeling. Go back to your GP; they should have a carers' champion who will point you in the direction of support for the carer. If you are worried about diazepam intake and addiction, can the GP not give you separate drugs for pain and for anxiety??
We so understand what you are going through and I am sending love and hugs for a better time for you.
 

dancer12

Registered User
Jan 9, 2017
498
Mississauga
Yesterday I totally lost it, I'm so ashamed of myself, I normally manage to cope, but just snapped, I suppose it's been coming for a long time, I'm just so tired. I have not been out of the house for weeks except to keep a hospital appointment, so I'm with JH all day every day, there's no getting away, all my shopping is delivered, we live in a rural village. But since just over a week ago JH decided he can't eat food he needs to chew as it sticks in his teeth, I'm trying my best to please him and give him a healthy diet but he just says no to most things offered, when I ask what would he like, he says he doesn't know as he's not the cook and can only tell me what he doesn't want. Also he won't drink much as he's says it's making him pee too much. So yesterday when I made him a sausage sandwich for breakfast which he usually really likes, you'd think I put something weird and horrible on his plate, well as I say to my shame I just lost it, I don't remember when I last cried so hard or so much, so I've gone from tired to exhausted and he harped on about that sandwich for hours afterwards. I am do not coping with the new turn of events, I was managing OK up until this food thing and it's not as if I can just go to the shops and get something else. Today I hate myself for my outburst.
Hi Francy:
Good for you for getting all your shopping done and getting it all delivered, quite an accomplishment.

Don't beat yourself up, don't be ashamed and definitely don't Hate yourself. You can just do your best and it seems to me your best you are doing. It is not easy. Dementia turns people into different people and that includes US. I strongly believe that it is harder on the carer than on the person suffering from dementia. They forget but we don't. I say many times that my husband has been cloned, aliens have come from outerspace taken my husband, cloned him, kept the original and sent me the copy. Take care of yourself. If we don't who will. :)
 

AliceA

Registered User
May 27, 2016
2,699
Francy, please do not beat yourself up.
Think about getting on to Social Services if you are at the end of your tether, they do have an emergency team.
See your GP, tell your doctor that getting him to eat and drink is a problem. The latter causes dehydration that causes confusion that causes not eating, so on.
I too can never leave my husband, live in a rural area. Like you I shop on line. It is not the same.
Mine is on a soft diet, I wonder whether the sudden dislike of meals needs checking out.
His behaviour could be caused by fear, he has put seeking a diagnosis off, once the outcome is clearer he may adjust better.
People always hit out to those they know they can trust not to leave, rather like children they press your buttons.
Christmas itself throws out routines. It all adds up. Take care.x
 

Guzelle

Registered User
Aug 27, 2016
418
Sheffield
I used to feel my Husband used to goad me all the time I do not think he knew what he was doing but I used to loose my temper with him I don’t think he understood why but it did make him behave better for a while.
 

Guzelle

Registered User
Aug 27, 2016
418
Sheffield
We do go out a lot as we live in a city. We go to singing for the brain, tea dances, dementia friendly ones. Theatre performances which are dementia friendly. We have had a kiss me Kate sing a long this week aswell before we watch the performance in January. He always asks what are we doing this for? As he is still very mobile we go out on health walks 3 or 4 days per week. We used to go swimming but that upsets him now with other people being in the lane.

We go out shopping and stop for coffee when we are out. I don’t know how long we. I don’t know how long we can keep all this up but for now I’ll keep going.
 

Manc70

Registered User
May 30, 2018
119
S. Yorkshire
Just want to add my understanding and support for you, please don’t feel ashamed or hate yourself, it is such a hard, indescribable thing we have to put up with from our loved ones - I can go from love to hate for my husband, who I have loved for 47 years, in minutes, occasionally I feel as though I can’t stand him. I did notice once when I told him in no uncertain terms that I wouldn’t put up with his behaviour that he changed for the better for a while.
Thinking of you, take care, love S x
 

LynneMcV

Volunteer Moderator
May 9, 2012
3,846
south-east London
As others have said, you have nothing to be ashamed of. We are only human and there is only so much we can cope with alone. You have been doing so well but you need help now - and there is nothing to be ashamed of in that either.

I found my local Carers' Group helpful in offering support for both of us, and although I didn't use them myself, I became aware of befriending schemes which would have enabled me to have a few hours of 'me time' each week, had I not found alternative options.

Generally, nobody will offer help or signpost you to useful services until you ask for help, so please do contact social services to get the ball rolling..

If you haven't already done so, I would also use the Alzheimer's Society 's handy search facility to find what support is available locally, as it may flag up possibilities that you are unaware of. I used it for my husband and found it very helpful.

The link is https://www.alzheimers.org.uk/get-support

Remember, we are all here for you :)
 

Agzy

Registered User
Nov 16, 2016
1,117
Moreton, Wirral. UK.
No Cat27, my husband has not even been to doctor yet for diagnosis, he is putting it off till after Christmas. There is no doubt he has dementia though, and I think he's had it for at least a couple of years, but the last three month have been a nightmare, he now knows and admits to his problem, which is progress indeed. So I've no help and no family and I am on my own with him. I spoken to my doctor who has given me diazapam to help me with anxiety, but I hate taking them and I also need to take them for a back problem I have,so also need to reply on them for pain relief. Believe me I love my husband dearly, he was and is a lovely man, but sometimes he becomes this stranger. I just need to cope better.
I had similar prior to diagnosis and wrote to her doctor telling of what was happeneing asked could they instigate a test. She was called in to the doctors who, as I understand it, gave her an informal test which led to her being referred to specialist nurse test and psychiatrist appointment which led to medication and much improvement so don’t give up but be proactive in seeking help, good luck.
 

Andrew_McP

Registered User
Mar 2, 2016
248
South Northwest
Aiming to provide perfect support for someone with dementia is a very noble thing. But expecting to achieve it is foolish. Welcome to the guilt club, membership: everyone! :)

Be kind to yourself, because the only thing you did was run out of patience, and patience is what dementia feeds on. But no matter how much patience you feed dementia, it will always demand more.

I think the only time you ever have to worry is when you stop feeling guilty about losing control. Until then, take pride in what you're attempting to do, because it takes genuine bravery to hold someone's hand as they stumble into the dementia darkness. It is inevitable that a bit of that darkness will get to you; you wouldn't be human if it didn't.

Good luck with jumping through all the diagnosis hoops. It's no fun, but opens doors to benefits and organisations which can help hold your hand too. Until then, there's this place... a forum none of us ever wanted to join, but all of us are glad we did.
 

Francy

Registered User
Dec 3, 2018
70
Co Down
I just want to assure you that you are not alone in snapping under the pressure of living with a completely disconnected person. I do this too when it all becomes too much and I snap. My husband is also a dear man and I grieve for what has gone. You definitely should not feel ashamed, it is only human to react when things get so bad and I think it is a form of release.
Thank you for your assurances, I just keep telling myself this is a sick person and needs compassion. I think you are right,I too am probably grieving for the loss of my husband and yes you've really hit the nail on the head, he is disconnected. I have just never loss control like that before and it was frightening, I wept so fiercely I was hoarse and exhausted. I thank you and hope Christmas is a happy time for you. XXXX Francy
 

Francy

Registered User
Dec 3, 2018
70
Co Down
Aiming to provide perfect support for someone with dementia is a very noble thing. But expecting to achieve it is foolish. Welcome to the guilt club, membership: everyone! :)

Be kind to yourself, because the only thing you did was run out of patience, and patience is what dementia feeds on. But no matter how much patience you feed dementia, it will always demand more.

I think the only time you ever have to worry is when you stop feeling guilty about losing control. Until then, take pride in what you're attempting to do, because it takes genuine bravery to hold someone's hand as they stumble into the dementia darkness. It is inevitable that a bit of that darkness will get to you; you wouldn't be human if it didn't.

Good luck with jumping through all the diagnosis hoops. It's no fun, but opens doors to benefits and organisations which can help hold your hand too. Until then, there's this place... a forum none of us ever wanted to join, but all of us are glad we did.
Thank you Andrew. You are very kind in sharing this with me and others. Perhaps I am expecting too much of myself, sadly today I feel very broken because of my actions, but if I'm true to form I will mend, toughen up and become stronger. I know I have a long road to travel and I am confident my doctor will be of help, he is a very understanding and compassionate young man. And yes I do need someone to hold my hand and TP has been a great help so far.

May you have a very happy and peaceful festive season ANDREW.

XXXX Francy