ANYONE CARING FOR SOMEONE WITH A NEW STOMA AND DEMENTIA???

Tell us a bit about yourself here.
I know I have expressed my upset,anger, frustration etc etc etc so many times before, and you have all listened to me and offered very valuable advice.... but.. is there anyone on this site who is caring for someone who is not their life long partner/spouse/parent of their children, who has rapidly advancing dementia and a new stoma that they cannot deal with?????

If you are there, I would like to hear from you - or am I as alone as I feel? :S :S :S :S :S :S
Oh, Mary - you sound very down! I know I don't fit the profile you're looking for (93 y.o MIL with advanced dementia in a care home for 4 years - and likely to be so for quite several years longer I strongly suspect)(sigh, poor soul), but just wanted to 'root' for you....

I know this isn't what your topic is about, so ignore as you wish, but do you feel you have a 'forward plan' for, say, 'up till Xmas', and then a longer term one for say the following six months, etc etc?

what do you think your situation will be in a year's time, and what would you LIKE it to be?

(ie, given that it is 'unlikely' that your ould man' (!)(as you rather sweetly and affectionately call him!) will have died)(sorry to use that word, but, in the end, it is all that releases them, and us, from this sad caring situation....)

wishing you better than you have - KR, Jenny
PS - I think you've said, in earlier posts this summer, that you feel a care home is the 'eventual' destination, but that he's 'not quite ready' for that yet, and you want him to stay home with you as long as it's possible for you to cope with the situation. Do you feel that is still so?
Hi Mary. Have you had a look over at the Alzheimer's Society Talking Point Message board? Lots of different people dealing with lots of different types of dementia and other conditions there. Perhaps someone there is in a similar situation to yourself?
I am very down...

The local services do provide a counselling service for carers - but you have to be on the waiting list - which I am.

I can't get my head above the parapet at the moment.

The dementia tells him he does not want to shower - I tell him he must, because he needs better levels of hygiene because of the Crohn's and the cellulitis.

He showered this morning - fine, but the bloody bag came off his stoma !!

I go to sort it for him, as he can't do it himself - and find myself thinking this used to be such a loving, caring, intelligent man, and here I am cleaning faeces off his once sexy body !!! Grrrrr!!!

back track to only yesterday...

The nurse was here to advise - and they do their best -changed the sort of bag he needs, and sets it up right for him. But he doesn't want it ( that's the dementia - doesn't like it) I ask him where are the ones the nurse set up for him - and he has put them on the top of his wardrobe - he is 6'2" - and he knows I at 5' can't reach... Grrrrr !

day before...

Can't pay the rent, because he has spent the money, and worked his account up to it's limit. Explain to him as though he is a 5 year old, that I will have to take his debit card off him, and give him pocket money - not sure if he understood.

The nurse said yesterday that it is the dementia that is the worse of his problems at the moment, because that is impacting his attitude to everything else....

Trying to arrange for him to visit his daughter, so I can have a break. Phoned her surgery 200 miles away to register the poor ould fella as a temporary patient - and ask for a form and they say they cannot post it out to me, he has to go in there when he gets up there - I explain about the dementia, I explain that we need the stoma care in place from the day he gets there.... no joy. So I have written today to the practice manager to ask her to intervene.....

add all this to the fact that I am trying to work as well albeit from home...... oh bless us all, I know there are people in a much much worse situation - but at the moment it doesn't feel like it.

This time last year we had none of these worries, and we had a car to get about in.... now we have a life that is miserable, frustrating and worrying.... I am ranting, and will I press the submit button and pass on all my unhappiness to you all???

probably

but then you all have your own problems.... :o

bless you all for being there... I am going to have a coffee and watch a bit of mindless daytime TV while he has toddled off with his enabler to buy his yoghurts from Aldi 12 miles away :woohoo: :woohoo: :woohoo:
Mary, what you are describing is Stolen Life Syndrome.

It's what 'intensive carers' like you experience.

The nurse is right that the worst is the dementia. It dominates everything else. Excacerbates everything else.

Dementia doesn't just steal the life of the person who has it, but your life too, in having to care for him.

It totally and absolutely takes over completely - your entire time is just 'coping with his dementia'....day after day after day. Whether it is the gruesome physical stuff you described so 'horrifically' (is THIS what he's come down to?????) re the shower, or wrestling with the imbelicities of the NHS etc re the GP surgery/temporary patient etc.

I asked in my earlier post what you are thinking now of the next 12 months. I know that when one is 'firefighting' on an everyday basis, it's hard - and of course scary and daunting - to look too far ahead, if at all.

But it has to be done, doesn't it?

How long can you keep going like this?

I suspect, you know, that when you do, finally, manage to get him to is daughter's and you get a respite break, that that break will, in fact, slam home message to you that you CANNOT bear to have him back....

Maybe I'm being a bit too extreme, and I apologise, but in a way, when I used to get my respite breaks from MIL, those two weeks were SUCH 'heaven' that they really, really slammed into me that I couldn't BEAR to have MIL back with me again. When I drove up to get her, the prison doors just closed behind me.

Once, I went off the motorway just before Glasgow, and parked the car in the middle of nowhere, and just sat there for 20 minutes, pleading with God not to 'make' me have to go and get her. I would have given anything at all to be able to turn the car around, and head back south - to freedom.

I know my situation is quite different, because this is 'only' my MIL, not someone, like you, whom you thought you would 'grow old together' with.

And that's the final, 'steal' of dementia, isn't it? That it hasn't just stolen your man's life, or your life, now - it's stolen the future you thought you would have......that can never be.

no wonder you are rock bottom -
HUGS Mary, you know we talk here about NEEDS not WANTS.
Usually it's in relation to the caree, but I can hear the desperation in your post. It's also about what you need and want. Partnership is about a balance, and now your life has been totally overwhelmed by his, and you simply CANNOT cope with this any more. You NEED a break, not want, you need it, for the sake of your own sanity.
Yes, you'd like to be able to cope, you want to be making love to the man he used to be, not changing the damn bag on the man he has become.
It sounds like you have reached the point of being a Clapped Out Carer, given all your life and it's still not enough for him, and sadly, will never be.
No one seems to be listening, you need help now, not put on a waiting list.
Yes, you could probably manage if it was just the dementia, or just the stoma, but it isn't, and things are never going to get better, only worse, that is the brutal truth.
Have you told his GP, or yours, that you CANNOT cope any more? Would he support you if you said he needed a nursing home, now? You know you can't be forced to care for him. If you can't get him to his daughter's for respite (and actually I don't think she would be able to cope with him either) then you have surely reached to point where residential care for the man he is now, not the man he used to be, has become to only option left? Can the GP ask Social Services arrange emergency respite?
It's really sad that he has no insight at all, but then that's the dementia.
What would it take to unravel your partnership. Who owns the house, him or you, for example?
Tell me if I've got it absolutely wrong,
(I tried and tried to support my mum, but one day a voice came into my head(and I'm not prone to voices) and it said "I can't do this any more". I knew then that had to be the end of the line for me. Residential was the only workable option. I know just how heart wrenching this whole horrible business it is).
[b You and Jenny have got it absolutely right. I cannot remember the last time I had a jolly good laugh at something through pure pleasure rather than at the situation I find myself in.[/b]

BB - we do not even own our house - we rent it, we have no savings, nothing..... I am a professional person, but I have had a terrible life, and ended up with less than nothing. I once owned a lovely Edwardian 5 bedroomed house, had a cleaner, mother's help etc etc but life changes and so do fortunes.

I doubt if I can afford to stay here if the poor ould fella goes into a home, I have been looking at alternatives, even a cheaper part of the country. - but so much upheaval and I don't know if I have the strength of character to do it - we have only been here 2 years and I love where we are.....

Oh well, at least we are not in the path of Irma, so we have to be thankful......

thanks again for everything.... I do realise where this is going, it's whether I can make myself do what is needed ..... that's the problem...

:woohoo: :S :woohoo: :S