Despairing shared

[Dutchman]

Hi Fellow forum posters

I’m sitting once again on my own after my wife has gone upstairs to bed at 15.00 taking a picture of herself as company. She doesn’t want mine. Even to lie on the bed next to her for a short while she refuses. I’m not her husband anymore and I’ve tried all sorts to convince her otherwise.....pictures of us, talking about together memories, etc. Nothing affects her. So I try to convince myself that I don’t mind but deep down I wonder if I’m up to coping with what’s bound to happen in the future. Life can only get more bizarre and upsetting and I just don’t know what to do anymore.

I’m a untrained, inexperienced, ordinary bloke who lurches from one upset to another and I get angry, depressed, shout, say horrible things to her. No wonder carers get ill and go under. And I know with a rawness that’s painful that it’s the dementia that doing all this so I’m stuck with guilt that I sometimes treat her badly, an unrealistic need for some comfort from one who cannot give it and that dark thought of wanting to be free of it all. This isn’t living, it’s more of punishment.

Did I do something in the past that was so bad that this is my comeuppance? Silly I know but then this drags out these types of thoughts. If I went upstairs now and she’s passed away I’d miss her presence like crazy but, on balance, she’d be at peace and I would just go on. After all what would I be missing anyway? I don’t get comfort anymore, no support, no physical attraction, no shared memories, no planning together and no warmth. Nothing that makes a relationship.

 

[marionq]

How right you are.

 

[canary]

Of course you havent done anything wrong in a past life @Dutchman but I do believe that you are reaching carers breakdown.
Seriously, is it time for a care home?

 

[maryjoan]

Hi Fellow forum posters

I’m sitting once again on my own after my wife has gone upstairs to bed at 15.00 taking a picture of herself as company. She doesn’t want mine. Even to lie on the bed next to her for a short while she refuses. I’m not her husband anymore and I’ve tried all sorts to convince her otherwise.....pictures of us, talking about together memories, etc. Nothing affects her. So I try to convince myself that I don’t mind but deep down I wonder if I’m up to coping with what’s bound to happen in the future. Life can only get more bizarre and upsetting and I just don’t know what to do anymore.

I’m a untrained, inexperienced, ordinary bloke who lurches from one upset to another and I get angry, depressed, shout, say horrible things to her. No wonder carers get ill and go under. And I know with a rawness that’s painful that it’s the dementia that doing all this so I’m stuck with guilt that I sometimes treat her badly, an unrealistic need for some comfort from one who cannot give it and that dark thought of wanting to be free of it all. This isn’t living, it’s more of punishment.

Did I do something in the past that was so bad that this is my comeuppance? Silly I know but then this drags out these types of thoughts. If I went upstairs now and she’s passed away I’d miss her presence like crazy but, on balance, she’d be at peace and I would just go on. After all what would I be missing anyway? I don’t get comfort anymore, no support, no physical attraction, no shared memories, no planning together and no warmth. Nothing that makes a relationship.

Oh, how I feel for you.... you are saying my thoughts - it is so sad that we are so unhappy, and stressed. You are untrained, inexperienced, and so are so many of us - trying to do something about which we know very little.

We sometimes do it wrong, sometimes get it right, but no one tells us.

My OH is stuck with this stoma and bag, which happened at the same time his dementia was diagnosed - he doesn't understand it - I find it totally revolting for too many reasons to go into here.

I had a thought today - not for the first time

I fostered a little boy with cerebral palsy - he died after 13 years.
I fostered a little girl with spina bifida - she now lives elsewhere.
I brought up 2 stepchildren with autism - they are adult now.

BUT
each one of these children had always been how they were - I could accept that and deal with it, awful as the spina bifida was, and wearing as cerebral palsy is.

My OH has NOT always been like this - I fell in love with a different man - and I want him back.

How wretched is this disease.

 

[rhubarbtree]

Feel for you Dutchman. I have not been the best carer these last few days. Much shouting. These boring, extra long weekends get me down and I broke a tooth.

 

[Antipat]

Feel for you Dutchman. I have not been the best carer these last few days. Much shouting. These boring, extra long weekends get me down and I broke a tooth.

All you carers out there, give yourselves a break, what you are doing is the hardest job on earth. To feel like your loved one doesn't care, doesn't want you or whatever it is , is so nasty. I just took my husband to the care home this afternoon, and I couldn't even complete the mountain of paper work for the tears... I got home and closed the curtains and locked the doors... I didn't even want to see anyone. But it has been about 3 hours and I am going to sit in my nieces garden for a while... need to heal in the sun... As hard as being the primary care giver was, it was torture to put the man I loved and had such great adventures with into care .. He was not just my husband , he was my best friend. And to make it work my twin sister died a bit over 3 weeks ago.... But I am trying to get into a more positive frame of mine...
I hope all you care givers who are feeling inadequate will take a minute to think about the tremendous job you are doing... If you got paid for it by the hour you would be millionaires …
I just survived the long weekend knowing it was my last weekend with my husband home... and no help for the last 10 days... I shouted once or twice, but the last two days I was so nice I am sure he knew something was up …

 

[Philbo]

Hi @Dutchman

If we were playing cards, I'd have screamed SNAP in an instant!

Over the last 5 years or more, I seem to have been able to get through the turmoil of emotions of watching the person I adore, slowly disappearing before my eyes. But what eats away at my soul relentlessly, is the awful feeling of loneliness.

I am not alone (we have 2 sons living nearby), but like you, I've lost the person who used to be there for me. The one who would bring me a cup of tea when I was grafting at some DIY task - the one who would scratch my back - the one who would share my worries - the one who would support me, no matter what!

I have just bought a new car. I only went in to get a tyre/wheel problem sorted out. It's dangerous to leave me unattended in a car showroom for an hour and for once, my heart ruled my head. It was a rare selfish "something for me" moment and it felt great, but oh how I miss sharing my delight with my dear wife. After I had picked it up, I collected her from the day centre and I don't think she was even aware that she was getting in a different car.

I applaud all of you lovely carers out there - we are in an exclusive "club" that none of us signed up for.

Best wishes.
Phil

 

[Agzy]

Hi Fellow forum posters

I’m sitting once again on my own after my wife has gone upstairs to bed at 15.00 taking a picture of herself as company. She doesn’t want mine. Even to lie on the bed next to her for a short while she refuses. I’m not her husband anymore and I’ve tried all sorts to convince her otherwise.....pictures of us, talking about together memories, etc. Nothing affects her. So I try to convince myself that I don’t mind but deep down I wonder if I’m up to coping with what’s bound to happen in the future. Life can only get more bizarre and upsetting and I just don’t know what to do anymore.

I’m a untrained, inexperienced, ordinary bloke who lurches from one upset to another and I get angry, depressed, shout, say horrible things to her. No wonder carers get ill and go under. And I know with a rawness that’s painful that it’s the dementia that doing all this so I’m stuck with guilt that I sometimes treat her badly, an unrealistic need for some comfort from one who cannot give it and that dark thought of wanting to be free of it all. This isn’t living, it’s more of punishment.

Did I do something in the past that was so bad that this is my comeuppance? Silly I know but then this drags out these types of thoughts. If I went upstairs now and she’s passed away I’d miss her presence like crazy but, on balance, she’d be at peace and I would just go on. After all what would I be missing anyway? I don’t get comfort anymore, no support, no physical attraction, no shared memories, no planning together and no warmth. Nothing that makes a relationship.

Dutchman, many of us have or are having the same issues, thoughts and feelings of guilt. Sharp retorts are often my defence to but I’ve found that they dont help her or myself so I’ve managed to bite my tongue more often just as the Psychiatrist who diagnosed the Alzheimer’s told me I would learn to do. I’m lucky in that my sons are my best friends and golf, karaoke or just a quiet pint with them helps so much. Try not to broood alone, it doesn’t help really.

 

[Baker17]

Hi @Dutchman

If we were playing cards, I'd have screamed SNAP in an instant!

Over the last 5 years or more, I seem to have been able to get through the turmoil of emotions of watching the person I adore, slowly disappearing before my eyes. But what eats away at my soul relentlessly, is the awful feeling of loneliness.

I am not alone (we have 2 sons living nearby), but like you, I've lost the person who used to be there for me. The one who would bring me a cup of tea when I was grafting at some DIY task - the one who would scratch my back - the one who would share my worries - the one who would support me, no matter what!

I have just bought a new car. I only went in to get a tyre/wheel problem sorted out. It's dangerous to leave me unattended in a car showroom for an hour and for once, my heart ruled my head. It was a rare selfish "something for me" moment and it felt great, but oh how I miss sharing my delight with my dear wife. After I had picked it up, I collected her from the day centre and I don't think she was even aware that she was getting in a different car.

I applaud all of you lovely carers out there - we are in an exclusive "club" that none of us signed up for.

Best wishes.
Phil

What you have said about your new car resonated with me, I’ve just bought myself a new one and I felt the same, my husband was never into cars like I am but always loved my new cars, I did tell him when I went to take him out for a coffee and he said he was impressed but had forgotten immediately, it feels sad that we won’t enjoy our trips out in the same way.

 

[Helly68]

I watched something similar to Dutchman describes with my parents. My Mum (mid to late stage dementia) started saying that this man, she didn't know (my Dad) had "taken her in" and it was very kind of him, but she wasn't sure why he had done that.
My mum has had issues with severe mental health all her life and my father has been her carer for longer than she has had dementia through some very tough times. All of that has gone, as far as my Mum is concerned. Heartbreaking to watch and it has affected my father greatly.
This disease progression and the casualties it causes among families and carers is the cruelest thing.

 

[Fullticket]

It's like we have been asked to take in a stranger and provide all care needs. Would we do this in normal circumstances? No we wouldn't. But because it is a loved one we do it - we do it for the person they were, probably not for the person they have become. I learned to bite my tongue on the basis that the only person getting upset was me. All I can say is it worked for me...
Seriously, you sound like you have reached carer breakdown; get SS involved, get your GP involved (for you!). Reach out for what help is available and give yourself a break. You have done what is needed, you have gone beyond what is needed and you have nothing to be ashamed about. Don't dwell on the immediate past but get some help and then remember the woman she was with fondness; let someone else take the strain. A care home may be beneficial to her as well as you.

 

[jenniferjean]

I learned to bite my tongue on the basis that the only person getting upset was me.

That is so true.

 

[silversea2020]

It’s a terrible illness to have to witness & deal with, I think of my MIL who was a lively & intelligent lady who succumbed to this illness. Her husband took such good care of her at home for quite a few years & he coped remarkably when I think back BUT, he reached his limits when her mobility became less & less, he just couldn’t cope any longer being on 24 hour duty. I don’t think anyone can be ‘humanely’ expected to yet so many do for a whole host of good reasons & sometimes there isn’t a choice because there isn’t the support... I think isolation is the worst thing for the carer plus everything else one has to deal with....once my FIL arranged for MIL to go into a care home his life ‘lifted’ ...I’m not saying it was easy but he began to socialise again & he began to live a little, he managed to achieve some kind of balance in his 80’s & it was so good to see him happy once more

 

[Just me]

I’m sure you have said what lots of Carers have felt and are feeling Dutchman. It’s so hard on so many levels to look after someone with dementia and I often feel (and know) I’m not equipped to deal with it.
I hope all the heartfelt replies have helped in some way.
This truly is a supportive forum x

 

[Philbo]

What you have said about your new car resonated with me, I’ve just bought myself a new one and I felt the same, my husband was never into cars like I am but always loved my new cars, I did tell him when I went to take him out for a coffee and he said he was impressed but had forgotten immediately, it feels sad that we won’t enjoy our trips out in the same way.

Yes it certainly takes a bit of the shine off what should be a happy moment☹️

I took my wife out for an extended drive to give the car a run. Although a wasted effort, I tried to show her all the gizmos available on the digital dash/displays. Blank stare, but it’s the sort of thing I used to do before dementia. Sad, sad, sad

 

[Lilac Blossom]

Dear Dutchman - every word that you have written I could have written too. Like you "I'm once again sitting on my own .......... " The agony of loneliness is so great at times; the longing for companionship which will never return is so hard to live with.

 

[Baker17]

Yes it certainly takes a bit of the shine off what should be a happy moment☹️

I took my wife out for an extended drive to give the car a run. Although a wasted effort, I tried to show her all the gizmos available on the digital dash/displays. Blank stare, but it’s the sort of thing I used to do before dementia. Sad, sad, sad

Yes it is very sad, one thing that keeps me going is that at the moment he still knows me, I dread the day that changes. I’m still getting to grips with all the technology myself!

 

[Dutchman]

It’s Sunday and I hate it. Every week we have this anxiety about going to the shops but, of course, it’s Sunday and she can’t understand that shops open two hours later so she wants to go out at 8.00 because she doesn’t understand the concept of 2 hours and is sitting in the car waiting. Last week we got to the car park at 9.00 and just sat there. Not even the store people were there. She gets irritable and then angry and then I get frustrated and raise my voice and then I’m tired of trying to explain. In fact I just hate everything about how she can’t handle stuff now and I’ve realised that it’s the unpredictability and bizarre nature of her actions that gets me down.
None of her actions can be anticipated so I’m constantly on edge. Why can’t she just be asleep all day. That would be easier. I don’t mean that but just some easy time would be nice.

 

[Rosebush]

It’s Sunday and I hate it. Every week we have this anxiety about going to the shops but, of course, it’s Sunday and she can’t understand that shops open two hours later so she wants to go out at 8.00 because she doesn’t understand the concept of 2 hours and is sitting in the car waiting. Last week we got to the car park at 9.00 and just sat there. Not even the store people were there. She gets irritable and then angry and then I get frustrated and raise my voice and then I’m tired of trying to explain. In fact I just hate everything about how she can’t handle stuff now and I’ve realised that it’s the unpredictability and bizarre nature of her actions that gets me down.
None of her actions can be anticipated so I’m constantly on edge. Why can’t she just be asleep all day. That would be easier. I don’t mean that but just some easy time would be nice.

Hi,Dutchman, it's only a thought, but can she still tell the time, would it be worth changing it, like I said it's only a thought. L.

 

[Dutchman]

No she doesn’t understand time