No one knows

[Thethirdmrsc]

No one knows, except on here, what life is like. If my OH was “normal” I would be in whats considered a coercive or abusive relationship, and would be encouraged to leave. But because he has Alzheimer’s, I am expected to suddenly acquire a medical degree so I can find out his triggers and deal with them. I am weary, and becoming hard and hateful, and very unhappy. Changes will have to happen.

 

[jennifer1967]

when ive asked for help, it was well this is a difficult situation and never got any answers or the promises that were pie in the sky, never to be spoken of again. all i hear is he has capacity which makes it worse as they are saying he has capacity for a reasoned argument as to if he wants to do things. i would have thought that would illustrate the point very well.then they hand bag the responsibility back and tell you to get on with it.

 

[Grannie G]

Heartbreaking posts @Thethirdmrsc and @jennifer1967

You can both make changes. All you need do is let go of the guilt and decide on residential care. What is being asked of you is too much for anyone and you do not have to continue living like this.

 

[Lawson58]

No one knows, except on here, what life is like. If my OH was “normal” I would be in whats considered a coercive or abusive relationship, and would be encouraged to leave. But because he has Alzheimer’s, I am expected to suddenly acquire a medical degree so I can find out his triggers and deal with them. I am weary, and becoming hard and hateful, and very unhappy. Changes will have to happen.

I know exactly how you feel and so often there seems to be no way out.

My husband is quite capable of looking after his personal hygiene and preparing simple meals so unlike many other people with dementia, he is a long way off needing residential care. I need him to go into respite for my own mental health and welfare but that is not going to happen yet.

For me, it's not having a way out and not knowing how long it will be before it comes to the point of being able to move him into care.

We made a decision years ago to stay together because financially it seemed to be the sensible thing to do. If I had any idea of what my life was going to be like, I would have fled. But dementia is a creeping disease, it sneaks up on you or your partner with the warning signs being insidious and before you know it, you are suddenly a 'carer' without knowing or understanding what you are in for.

I hate it when people tell you that you have a choice. I made one a few years but now I feel trapped. The thought of what I would have to do for me to escape is mind boggling. Some people will tell you that you have a choice in how you respond to these events in your life but after years of living with this, you lose the ability to react that way.

From someone who knows, you have my sympathy. I hope that you can find ways to make the changes you need.

 

[jennifer1967]

i agree with you @Lawson58 my husband can do most of his personal care and cooks easy dinners so as far as they are concerned, he is independent and has capacity. he has been asked by mental health and social worker to give me a break and he refuses. he is allowed to control everything with his capacity. he will be LA funded which is another can of worms. the worst part of all this is , they dont believe me if they dont, im going to have an uphill struggle in housing and benefits. i have to be careful that i dont leave and make myself intentionally homeless therefore they wont rehouse me because they will want to see evidence if OPMH and SS dont believe me, there is no evidence.

 

[Lawson58]

i agree with you @Lawson58 my husband can do most of his personal care and cooks easy dinners so as far as they are concerned, he is independent and has capacity. he has been asked by mental health and social worker to give me a break and he refuses. he is allowed to control everything with his capacity. he will be LA funded which is another can of worms. the worst part of all this is , they dont believe me if they dont, im going to have an uphill struggle in housing and benefits. i have to be careful that i dont leave and make myself intentionally homeless therefore they wont rehouse me because they will want to see evidence if OPMH and SS dont believe me, there is no evidence.

I was talking with my wonderful GP a few days ago and we discussed the idea of respite but he acknowledged that my OH would never agree at the moment. It seems that the carer has to collapse in a massive heap to get help if the PWD can still function at a superficial level.

I have PoAs for both Health and Welfare and Finance but in Australia, they operate differently to UK. OH wouldn't agree to doing them unless I gave him identical powers so I have now changed mine but his has conditions which have to come into being before I can use them.

I don't have the same issues you have with the potential difficulties about your financial security so I am fortunate. People often don't appreciate how complicated caring for a dementia patient is because it can go for years and they can cover up their problems for so long. You have a double dose of problems to deal with so I feel for you.

 

[Jaded'n'faded]

No one knows, except on here, what life is like. If my OH was “normal” I would be in whats considered a coercive or abusive relationship, and would be encouraged to leave. But because he has Alzheimer’s, I am expected to suddenly acquire a medical degree so I can find out his triggers and deal with them. I am weary, and becoming hard and hateful, and very unhappy. Changes will have to happen.

Whilst most of us would agree that a vulnerable person with dementia should be protected and their rights respected, it should not - must not - be at the expense of those same rights for a spouse.

It seems so wrong that you (and @jennifer1967 and @Lawson58 and others) are treated with complete disdain and disregard for your health and wellbeing. No one says to your spouse, 'Well, you may not want to go into a care home but tough - you're such a complete and utter nightmare to live with that you'll just have to put up with it.' Yet you have to live with the fallout and have no choice. Nothing will be forced upon them but you are forced to be a carer. No one respects your choices.

As you say, you're expected to morph into a trained nurse/carer and forget any life for yourself. And it's no help saying, 'You can always leave'. Yes, in theory you could but extricating yourself from a long-term relationship - with all that entails - when your other half has dementia is virtually impossible. (And maybe that's not the solution you are looking for.)

I cannot imagine how hard it is for you but can only think you are really suffering and desperately heartbroken. Not to mention angry and incredibly frustrated. All I can do is listen and offer my support but what I really want to do is wave a magic wand and get you (all) out of this nightmare.

Utmost admiration to you all. It will end/change, I just wish I could tell you when.

 

[Little moth]

I don't mind what I do to help MH but this weekend has dragged me down, I've cried so much. Things were brewing and last night I had to stop him phoning BIL, an elderly neighbour and the police to find out where I am. What would the police have done I wonder.
I phoned an emergency duty no. I had been given, it turned out to be a SW, who was very nice. She is going to leave messages for the medics. I put the phone down to see a furious husband of 56 years accusing me of lying. He picked up my phone numbers, Admiral nurse etc, and told me to get out. I wasn't going to get any of his house, not have his money,
I was between sobbing and anger,. Everything is about him while I am crumbling, I am tolerated as I do washing etc. I know he wouldn't be able to look after himself if I left. Where would I go, we wouldn't get enough from our house to buy 2 homes. It's hellish.

 

[DesperateofDevon]

No one knows, except on here, what life is like. If my OH was “normal” I would be in whats considered a coercive or abusive relationship, and would be encouraged to leave. But because he has Alzheimer’s, I am expected to suddenly acquire a medical degree so I can find out his triggers and deal with them. I am weary, and becoming hard and hateful, and very unhappy. Changes will have to happen.

Get your GP to document this please , put it in writing & send to the surgery .
send a copy to your husbands consultant , & social services .

please get advice from the help line
age concern - someone
x

 

[Thethirdmrsc]

I don't mind what I do to help MH but this weekend has dragged me down, I've cried so much. Things were brewing and last night I had to stop him phoning BIL, an elderly neighbour and the police to find out where I am. What would the police have done I wonder.
I phoned an emergency duty no. I had been given, it turned out to be a SW, who was very nice. She is going to leave messages for the medics. I put the phone down to see a furious husband of 56 years accusing me of lying. He picked up my phone numbers, Admiral nurse etc, and told me to get out. I wasn't going to get any of his house, not have his money,
I was between sobbing and anger,. Everything is about him while I am crumbling, I am tolerated as I do washing etc. I know he wouldn't be able to look after himself if I left. Where would I go, we wouldn't get enough from our house to buy 2 homes. It's hellish.

I am so desperately sad for you, and would give you a hug if I could.

 

[Little moth]

Yesterday was very strained, he wanted his phone back, I had hidden it, so I gave it back to him. He wanted to phone his sister, me sat next to him, while he wanted to know where I was. A strained day. I managed to do an email to the Admiral nurse, hopefully he got it, and I know he is in touch with all to do with my husband.
An emergency doctor phoned , MH came and sat near me, and she asked how things were. MH started talking so I asked him what was wrong, he knew my name was Joan but not his wife, when will she come back from holiday. The doctor understood what was happening and I can't remember what she said, messages for medics.
I just couldn't cook a meal, did a salad and things calmed a bit. I said I didn't want to leave, shall I stay until Joan comes back, he said yes.
This morning, depressed, where is Joan. He had slept badly, I persuaded him to go back to sleep after his PD tablets and a cuppa. I'm hoping I will get a phone call from someone.
I feel a bit stronger today, I can look at the garden and see beauty, yesterday, I felt nothing.

 

[DesperateofDevon]

Yesterday was very strained, he wanted his phone back, I had hidden it, so I gave it back to him. He wanted to phone his sister, me sat next to him, while he wanted to know where I was. A strained day. I managed to do an email to the Admiral nurse, hopefully he got it, and I know he is in touch with all to do with my husband.
An emergency doctor phoned , MH came and sat near me, and she asked how things were. MH started talking so I asked him what was wrong, he knew my name was Joan but not his wife, when will she come back from holiday. The doctor understood what was happening and I can't remember what she said, messages for medics.
I just couldn't cook a meal, did a salad and things calmed a bit. I said I didn't want to leave, shall I stay until Joan comes back, he said yes.
This morning, depressed, where is Joan. He had slept badly, I persuaded him to go back to sleep after his PD tablets and a cuppa. I'm hoping I will get a phone call from someone.
I feel a bit stronger today, I can look at the garden and see beauty, yesterday, I felt nothing.

Virtual flowers for you with love xx

 

[Thethirdmrsc]

I have been in touch with a local care home today, looking for a weeks respite. I can’t visit for a look, but that doesn’t matter. Just waiting for the funding to be approved. This is a full time job. What happens if he says he’s not going In though. I wasn't going to tell him, just take him on the day

 

[Banjomansmate]

As Mr. Punch would say “That’s the way to do it!”

 

[Bettysue]

I,too, am waiting for approval of funding for a week’s respite. My partner is generally not difficult but is capable of digging his heels in if he doesn’t want to do something. I won’t be telling him what’s happening until we’re in the car. I worried about the isolation required on admission from the community but I’m so fed up I’m going ahead regardless. One of my friends said that she thought he’d be fine if the carers were nice to him. To be honest they’ll probably be nicer to him than I am!!

 

[Thethirdmrsc]

I,too, am waiting for approval of funding for a week’s respite. My partner is generally not difficult but is capable of digging his heels in if he doesn’t want to do something. I won’t be telling him what’s happening until we’re in the car. I worried about the isolation required on admission from the community but I’m so fed up I’m going ahead regardless. One of my friends said that she thought he’d be fine if the carers were nice to him. To be honest they’ll probably be nicer to him than I am!!

Luckily there is no isolation, touch wood, but he needs a PCR test. Just another hurdle, but I’m becoming a world class hurdler.?

 

[Banabarama]

Oh how awful it all sounds. I too am having a rough time and am wondering is it possible to feel any more down. At what point does one just give up, do the caring and just forget everything else. I am struggling with housework, the garden is a mess and I drink too much wine and eat lazily and badly (although I promise that OH eats very well). Have cut my working week to 3 days (i have carers when I’m out) thinking that would help but It hasn’t I tell myself to pull myself together but that is easier said than done as I guess many of you will know know.

 

[silkiest]

I fee so desperately sorry for those of you living with partners with dementia. I find it hard enough looking after mum and MIL when I can get a break by going home. I don't think I could cope with24/7 care.

 

[Lawson58]

Oh how awful it all sounds. I too am having a rough time and am wondering is it possible to feel any more down. At what point does one just give up, do the caring and just forget everything else. I am struggling with housework, the garden is a mess and I drink too much wine and eat lazily and badly (although I promise that OH eats very well). Have cut my working week to 3 days (i have carers when I’m out) thinking that would help but It hasn’t I tell myself to pull myself together but that is easier said than done as I guess many of you will know know.

I think they call it 'carer's burnout' and even though I have had a beautiful garden, I am afraid it is looking very forlorn. It is trying to tell me that spring is coming and to get out there and do something.

My husband spills stuff over the floor and the cupboard doors and I feel like throwing one of his endless cups of tea at him. But then I would have to clean up another mess.

I am retired so don't have to drag myself off to work but I do force myself to get out of the house so he can't argue with me. He has now started getting up in the middle of the night, waking me up and leaving lights on all over the house. I think at some stage, especially if you have been a carer for a number of years, then it feels like hitting a brick wall.

I have no answers for you. The things that use to get me through don't work anymore.

 

[Cariad 42]

I feel like screaming "this is way too difficult" and you are so right, unless you are living this life "no one knows ".
Each day is fraught with some emotional challenge and it's exhausting. On the outside my OH looks well (although look more closely and there is a distracted/vacant look), on the inside however is someone:
- who has no idea of day/time,
-doesn't eat unless prompted,
-cannot prepare food or drink (apart an occasional cup of tea),
-confuses me with another woman of the same name who lives in our house,
- needs constant reassurance that I love him, and sex as a means of showing this
- needs to be right next to me stroking me all the time (this drives me insane),
- needs to be occupied constantly,
- moves things around the house (and when I mistakenly say out load "where is ....", we have the full denial - it's not my fault response). Of course it's not dear ?
- needs help to go to the toilet,
- hardly ever wants to do anything I suggest
- tells me daily, "let's be nice to each other today"

.....oh I must stop here as the list is endless.
We do get some help - for two hours, three times of the week. Like others we are not yet at respite stage, but really, how long before I actually go insane.

Love to you all in this same situation.

Note to self, don't have a glass of wine in the evening otherwise you'll be up again at stupid o'clock ?