Any ideas folks?

Share information, support and advice on all aspects of caring.
My partner wants to go on a visit to his daughter's 200 miles away - to spend time with her and to give me a break.

He has dementia which is not too advanced at the moment, but he has a stoma and bag which he cannot change himself. We have carers who come in each day to do this for him. This is for complex reasons to disassociate me from it, as he will take notice of 'official' people in uniform.

Our local care agency is independent and does not have branches in the area my partner wishes to go to.

I phoned care agencies in Melton Mowbray and they said that by the time they had done 'risk assessments' my partner's visit would probably be over. I asked if once a risk assessment had been done, would it be OK for him to go up in 6 months, 12 months and they said they would have to do another assessment. I phoned the local hospital and asked if they had a stoma nurse - they did not - and referred me to the local health practice. When I looked up their details the Care Quality Commission had very recently designated them as 'inadequate' - so I was not inspired.

Any further ideas?
Mary, am I right in thinking that you could (ie, would be capable of) change his stoma bag yourself, but that because of the 'cooperation' (or lack of it?!) issues, you hand that over to 'professionals'?

If that is so, then could your step-daughter not learn to do it herself? Bit horrid, I know, but there it is - the grim realities of physical infirmity.....

Do you think your partner would not 'cooperate' with his daughter either? (Or maybe if she knows she has to do it her invitation to her dad may be revoked!!!!)

One 'sideways' thought as an alternative. Does your stepdaughter have a car? If so, I was wondering whether you could check out nursing homes near to her, where other patients might have stoma bags, and then ask whether your stepdaughter could 'drop by' daily, and pay (privately) for one of the nurses/staff there to change the bag for your partner?

That said, the whole assessment business sounds daft - what on earth do a care agency need to 'assess' before having one of their care-workers come into change a stoma bag for heaven's sake!

Also, have you tried phoning your step-daughter's own GP surgery? Your partner could sign on maybe as a temporary patient, and then possibly one of the nurses there in the surgery could change the bag daily??? You might have to pay, but at least it would be done.


I do think it's vital for you to get this break. It's great your partner seems to be coopeating, and it would be really wretched for it to be impossible just because of the damn stoma bag!

Will you be driving him up to his daughter's?
Hi Jenny, as usual , you are able to see the things I can't see.

Let's see if I can get this into perspective -

Partner's son - does his bit
Partner's daughter - is in denial as to the extent of Dad's problems - she has not issued an invitation - partner is going to try and talk her into it. She definitely would refuse to change the bag - she is not a people person at all, her dogs are her 'people'.

The idea of the local surgery co operating is brilliant! I will look at that.
Or a local nursing home - that would be a good idea as well - so I will look at that.

I will not be driving him up to Melton Mowbray, as we no longer have a car - he sold it when his license was revoked!! So everything will have to be done at a distance.

To be quite honest, you can see by the number of times I am reaching to this site for help, I am floundering and fed up with my situation. I don't think I have ever felt so out of control of my life, or been as unhappy, since one of my children died.

But thanks again for you good words and your help......
Dog people can learn new skills- there speaks the voice of experience ;)
Yes Mary it is vital you get a break. Jenny is very good at seeing things from a distance and I always listen to her advice. So good luck with the local surgery and nursing homes.

I do feel for his daughter but if she loves her father, then cannot see why she cannot learn as it would only be for a few days.

I can understand how unhappy and trapped you feel. You are in a very difficult situation and are obviously a caring person.
helena_1512 wrote:Yes Mary it is vital you get a break. Jenny is very good at seeing things from a distance and I always listen to her advice. So good luck with the local surgery and nursing homes.

I do feel for his daughter but if she loves her father, then cannot see why she cannot learn as it would only be for a few days.

I can understand how unhappy and trapped you feel. You are in a very difficult situation and are obviously a caring person.
Thank you so much, Helena. Yes, I do feel trapped. My whole life has imploded, my business which stood the test of the recession, has gone under, I am no longer meeting people, appearing on the radio, or doing any of the things I love. I miss the man I had, I don't know where he has gone, he doesn't exist any more, and I am left with this vulnerable old chap, who needs me and who I still love, but not in the same way. I grieve for what he has lost, as well as what I have lost.

This time last year, I was planning his 70th birthday surprise party, with a holiday in Scotland as a gift. We had moved to a lovely, slightly remote village, but that was fine as we had the car, he did voluntary driving work, whilst I had my work. Now we no longer have a car, as he decided to sell it when his license went, and we use the voluntary service that he used to drive for to take us places - how weird is that? We have no future and just bumble along from day to day... I know so many other people do that too, but I feel as though I want to wipe my brain clean and start again feeling more positive.

I tried counselling, but it brought up all the other awful things that have happened in my life, and that only made me feel worse, not better. My 'poor ould fella' was my soul mate and we were going to have some happiness at last, and grow old together, and look after each other...... I know I am strong enough to come to terms with this, just like I have other things, it is just taking me longer this time, probably because I am older and just so bitterly disappointed at how things have turned out.

As I said last Friday, everyone, who take the time to read my ramblings on here - have a good weekend, despite the English weather ( which I love :woohoo: ) and look after yourselves and each other.

xxxx
Mary, come back here whenever you like, I think all of us here have had our own crisis/I can't cope any more times. I certainly have.
Do you think his daughter doesn't want him to visit? Is that going to create yet another crisis? If he's developing dementia he's also losing the ability to see anything from anyone else's point of view. Could she come down to see him instead, maybe staying at your place while you have a break? I would have thought that any nursing agency would be delighted to get paid just to change a bag.
Your counsellor sounds useless, find another one.
The counselling should have focussed on what your immediate problem was, how to manage your partner's developing health problems and whether, ultimately, you stay, or go.
I understood that a key principle of counselling should be never raising a subject unless the counsellor has time and ability to support you through the exploration of your feelings. By the time you approach retirement age, I think most people have had both good and bad parts to their lives. A bit like a bag of shopping, you need to deal with items one by one, not tip them out all over the floor to fall over!
Counselling is supposed to be about helping you to work out what you really want, and what support you need to achieve/manage it.

Would it be safe to leave your OH alone at home with support so you can go off for a break? Then he could have his usual carers to change his bag and the same agency could make additional visits perhaps. Could the daughter come down to stay locally in your area, rather than him go up there?
I'm sure you've thought of some or all of this before, but often by going round and round in circles you finally find a solution.
Has he ever been in the forces, a civil servant or similar where they have a convalescent home or similar available? Am I right in thinking he was a Rotary member. Would they be able to help on the quiet, in some way?
Mary, in a way, you are in what could be called 'virtual widowhood' perhaps - do read Pet's ongoing thread about how she, too, is experiencing the 'loss' of her husband, even though he is still physically alive, for I fear that is the same situation as you are now starting to experience.

Widowhood - whether virtual, like yours, or 'actual' like mine - is to my mind beyond all things (except one - the loss of a child, and you say you have already walked that anguished path) the worst thing to experience. At a stroke we are 'cut in half' - I used to say I feel my life has been 'amputated' and that I was a 'ghost in my own life'. We mourn not 'just' the loss of our partner, but the loss of the future we thought we'd have, which you describe so moveingly. All the things we dreamed of doing 'later'. I still feel that absolute and total kick in the guts when I watch those 'Escape to the Sun' programmes about retired couples buying a lovely holiday place in Spain or whatever, and sitting on their terrace watching the sunset over the Med, etc etc, and I really want to howl that they have it, and I don't, and can't, and never will.....

In a way, I would argue that any counselling you get should include 'bereavement counselling' as well as anything else - and in a way, you know, I could argue that in some ways, being 'widowed' by dementia is actually worse than the real thing, not just because the suffering to the partner is still ongoing (even if hopefully mitigated - we mourn for them, too, that THEY have been cheated of their 'good old age', and in a way their continued existence becomes a bitter 'mockery' of life - at least my poor hubby is 'safely dead' if you see what I mean - no more harm or distress or suffering can come to him now, it's all 'done'), but also of course because you, the 'virtual widow' have to continue looking after them (even if it's to organise their care elsewhere eventually) and you have all the stress and worry.

In a way, my life is 'easier' outwardly now because I don't have a 'sick husband' to look after. My life is 'my own' - sad, but my own - and I can 'do what I want'.

In a way, therefore, those like you have the worst of both worlds - you no longer have the companionship and partnership of your spouse, yet you have all the 'burden of care of them' upon you as well.

Any counselling should address both these grievous, unbearable sources of grief and stress.
jenny lucas wrote:Mary, in a way, you are in what could be called 'virtual widowhood' perhaps - do read Pet's ongoing thread about how she, too, is experiencing the 'loss' of her husband, even though he is still physically alive, for I fear that is the same situation as you are now starting to experience.

Widowhood - whether virtual, like yours, or 'actual' like mine - is to my mind beyond all things (except one - the loss of a child, and you say you have already walked that anguished path) the worst thing to experience. At a stroke we are 'cut in half' - I used to say I feel my life has been 'amputated' and that I was a 'ghost in my own life'. We mourn not 'just' the loss of our partner, but the loss of the future we thought we'd have, which you describe so moveingly. All the things we dreamed of doing 'later'. I still feel that absolute and total kick in the guts when I watch those 'Escape to the Sun' programmes about retired couples buying a lovely holiday place in Spain or whatever, and sitting on their terrace watching the sunset over the Med, etc etc, and I really want to howl that they have it, and I don't, and can't, and never will.....

In a way, I would argue that any counselling you get should include 'bereavement counselling' as well as anything else - and in a way, you know, I could argue that in some ways, being 'widowed' by dementia is actually worse than the real thing, not just because the suffering to the partner is still ongoing (even if hopefully mitigated - we mourn for them, too, that THEY have been cheated of their 'good old age', and in a way their continued existence becomes a bitter 'mockery' of life - at least my poor hubby is 'safely dead' if you see what I mean - no more harm or distress or suffering can come to him now, it's all 'done'), but also of course because you, the 'virtual widow' have to continue looking after them (even if it's to organise their care elsewhere eventually) and you have all the stress and worry.

In a way, my life is 'easier' outwardly now because I don't have a 'sick husband' to look after. My life is 'my own' - sad, but my own - and I can 'do what I want'.

In a way, therefore, those like you have the worst of both worlds - you no longer have the companionship and partnership of your spouse, yet you have all the 'burden of care of them' upon you as well.

Any counselling should address both these grievous, unbearable sources of grief and stress.
Bless you Jenny, you are such an inspiration for us all on here. Thank you again, your thoughts are so objective and clear... helps a lot. Virtual widow - makes absolute sense - thanks again
Mary I feel for you and can so relate. I too for a short period of time was an 'expert' in my subject and I did local radio, and even Radio 4. I find the loss of status as a carer for my much older husband very hard to take. I also find it hard to be so home bound. I would love to do vol work again - local community hospital asking for volunteers, local library want people to run there 'Make Friends with a Book ' sessions but dare not leave him alone. I love dressing up and going out and hate being so housebound. I also love meeting people and would if I was alone, throw myself into the local Rotary events........

My husband is much older. I am sorry to hear about your business. No advice but if you could manage to find some vol work it would at least get you out and raise your self esteem? For me it is reading and taking care of my cats. But I am no saint and at times really resent my husband as he does not help himself. Also feel the years of heavy drinking has contributed to the brain atrophy. Basically I stay as a carer/cleaner so I can keep my home and my beloved cats but yes I did once love my husband very much and after 27 years still care for him. The ambivalence which shines through in your post(s) is I feel very normal and it is good you can talk to us here as you are under a huge amount of stress.

So you are not alone and rant away - many of us will relate.I think some resentment is quite normal also some grieving for the life we hoped we would have. Sending hugs x