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The heartbreaking decision - Carers UK Forum

The heartbreaking decision

For issues specific to caring for someone with dementia.
I haven't been around here much recently. In October, my husband stayed in the care home we have chosen for a fortnight to familiarise him with the place and the people. The respite I was supposed to have was somewhat undermined by the fact that I used some of the time to catch up with some major dental work, so I was not exactly painting the town red. More like lying on the sofa whimpering and taking paracetamol.

And on November 5, he moved in there permanently, to live. I am an ex-carer (except that it doesn't feel like that at all). This first fortnight has been a bit of a nightmare, since he had a slight infection (UTI) last weekend which necessitated a day and a night in the local A&E while they assessed him, and antibiotics this week, which I think make him more confused. Patients with Lewy Body Dementia are very sensitive to some drugs. He has been a bit stroppy and aggressive over the last week, which is so not like him -- in his right mind, he was always the gentlest and most courteous of men.

The path is still not clear before me, and the practical changes are legion: not only the shock of living alone again for the first time for 38 years, but all the bureaucratic stuff, like changing the Council Tax and house insurance payments from his name to mine, informing any number of friends, colleagues and relatives, and so forth. I hate stuff like that, especially anything with a financial dimension, so I shall be relieved when I have worked through it. If I ever do.

And although I know it had to be done, the sorrow and guilt are overwhelming.
It won't be easy. I have been through what you are experiencing.

If it helps at all to know how we survive I can say more. here or privately if you prefer. Your choice.

If I can give just one word of advice it is to keep communication lines with management open at all times.
And to say that I spend time with my husband every single day and after nearly two years, I accept that there was no choice. His needs exceeded my abilities. No shame in that. Sadness always. Xx
His needs exceeded my abilities.

Yes, exactly. It doesn't make one feel any better about it, though. And I know that if I were myself 20 years younger, and trained in, and comfortable with, nursing, I might have been able to carry on for a bit longer. But there is still a turning point. I saw mine approaching about 6 months ago, but it will take me a long time to reconcile myself to the situation.
I have to say that of all the 'authorities' involved in this, the one who has helped me most has been the local Admiral Nurse. He has helped me to see the potential good side of the change, and above all, he opened my stepchildren's eyes to the full situation and enabled them to realise that I was not giving up out of laziness or incompetence, but was doing, and had done, the very best I could, to the limits of my ability.
As far as they are concerned, not much has changed. They see their father for a few hours once a week or so, only he is now living at a different address. My stepdaughter in particular seemed to have no real concept of what the 24/7 caring role is like. My stepson has always been more understanding and generous towards me, perhaps because he has experienced taking care of his father for 2 or 3 days at a time.
Anyway, the change has been made. I hope I shall be able to see some light ahead again one day.
Thank you for your comments and your informed sympathy.

I too have been where you are now, but with me it was my Mum who had to go into residential care - even now 19 months after her death I still feel 'guilty' and often find myself wondering if she would still be alive today if I hadn't given up and had continued to care for her at home.

Pre dementia she was my best friend; post dementia I was, at best, the woman who came in to cook and clean but rarely recognised as her daughter.

On the plus side I can say that at least for the last 6 months of her life we enjoyed a Mother/Daughter relationship again rather than that of Carer and Cared for. I visited her almost every day and we had regular outings to local parks and shopping centres.
Sending you my best wishes

We are in same situation at the moment with father inlaw
He moved into the home 2 weeks ago exactly. This first fortnight has really been a nightmare, but on Sunday and yesterday he seemed a lot better and more 'himself'. I haven't seen him yet today, because his son was visiting in the morning and over lunch. We are trying to space out visits to him to make sure that he sees at least one friend or relative a day, but that we don't overlap unnecessarily.

I can't imagine ever getting used to this or reconciled to it. This slow, living bereavement and loss is agony. And I am exasperated by the things that some other family members say and do. My stepdaughter said this in an e-mail she sent me today: ' I am sure he will settle and become better and stronger, both physically and mentally with encouragement and time'. She is an intelligent woman; why would she say that? He may settle in better in the home, and I hope he does, but he is never going to improve, either mentally or physically. He has an incurable and degenerative disease. He is only going to get worse, and the best we can hope for is to delay his deterioration. It is one thing to 'be positive', but quite another to believe in fairy-tales. This kind of blind optimism, the apparent conviction that there are no insoluble problems provided one is 'positive' and 'proactive' enough, may be helpful for those people who hold it, but it can leave those of us with a more realistic world-view feeling isolated and rejected. One reason that my stepdaughter seems not to understand and sympathise with my despair is undoubtedly her refusal fully to acknowledge the facts.

As I have said somewhere here before, there are differences between dealing with these cruel diseases in a parent and in one's spouse/partner. We expect our parents to predecease us, but we tend to hope that we will not long survive our life-partner, our closest friend. I think my husband's children are a lot more emotionally reconciled to their 82-year-old father's illness than I am, especially as they have not had to care for him for the last three years. He is still able to relate to them in ways that have not changed significantly, and to show vague interest in the lives of his grandchildren and his infant great-grandson. But he can no longer talk with me about the vast range of our common experiences and professional interests. An enormous swathe of what made us a deeply happy and fulfilled couple, a team, namely our academic interests and work, has faded away. I have already lost far more of my dear husband than they have lost of their father.

Huge (((HUGS))) to you. It will take time to realise that there is now no time pressure, that the paperwork doesn't all have to be done in a rush, that you can go shopping, or have lunch in a garden centre, meander round, or do absolutely nothing at all. I have come to accept widowhood, but it's not easy. Your situation is the same in so many ways, in fact ten times worse in many. Now is the time to be kind to yourself. It will take time to trust the home, but think about planning one day a week when you do something especially for you, as a reward to you for all the care you have given. Take care.


This is going to sound dead smaltzy, over the top and just plain American but, after reading all of the above posts, my heart is breaking for you.

This will be of small, if any, comfort to you, but your postings on this tread, have helped me understand my dad more.
I’ve concentrated so much on mum that I’ve kind of left him out. I thought he was in denial about mum’s condition because he’d get dead impatient with her, whereas I never do. Patience, by the way, is not normally my strong point.
I’ll then have a go at dad; I think I’m taking my frustrations out on him.

My attitude before reading your tread was, “You may be her hubby, but I’m her flesh & blood, so reign it in fella, or you’ll have ME to contend with.”

Now I realise I was wrong. Mum maybe my mother, but that’s not the same as a true partnership were these two shared stuff together, good and bad, that me and my brothers can have no conception of.
I have the imagination to realise I don’t have the imagination to know what that’s like, and how my dad losing his lover/best friend/partner/sometimes adversary will affect him.

I now realise he wasn’t in denial (He was the one who first spotted her changed behaviour which we all denied) he’s simply torn. Half of him accepts mum’s condition, the other half refuses to; and who can blame him?

Not me, anymore, after reading your tread.

I think I understand my dad a bit better now, so thank you Sad One.

Quite how I translate that into action is another thing; but it’s a good start. Thank you.
Sajehar. You are a good listener, bless ya.

Tristesa, you are in my thoughts still. When I mentioned Here that I found acceptance don't for one minute think that it came easily or quickly. Don't for one minute think that I don't hate dementia and all that goes with it. Dont for one minute think that I have the answers to help you. Nobody does.

I totally agree with you about how different it is for the children. I too have steps though I also have children of my own. (Complicated!)

All I can say is that I now find myself living two lives. For every 24 hours I live forty eight, in a way. I do other things when I am not with him (married in 1975 BTW) but never travel more than half hours distance from him. I believe I can still comfort him and being with him comforts me too.
From other wives/husbands like ourselves, as well as my own experience, I have learnt that some times a Certain moment happens which changes our perspective of it all. Just slightly. But that is the moment worth waiting for. It might be something seemingly trivial to an outsider but it seems to be something which helps us ....accept ...and stop ... Raging, for want of a better word.

A personal battle for me was what I considered the "immorality" of us being apart, of me handing over most of the care. I am now reconciled to it and aware that were he "in his right mind" he would be more than satisfied with what I did and what I still do for him. My man, in fact, would have expected less and still been satisfied. A kind, gentle man in every sense of the word.

I hope you will be as fortunate as I have been with the tremendous amount of support I have from the managers, nurses and all the general staff where he is.

Tristesa, you have my respect as well as my informed sympathy.

Thank you to all of you. The understanding, sympathy and experience here is an immense comfort, because all too often in the everyday world, people simply don't understand, and even if they mean well, they can say and do things that are really hurtful. Sajehar, I am touched that you found my remarks helpful in understanding your father's position.
I think I vaguely expected some feeling of relaxation once he was safely in the home, once that huge, irrevocable step had been taken. It is true that I no longer wake up at every little sound during the night, worrying that he might have got out of bed and fallen. But I certainly don't feel free or relaxed. I feel as if I am beginning to construct a whole new timetable for my life, which is just as complicated as the one that has been tying me down over the last couple of years.
The next thing I am really dreading is Christmas. I don't know yet what the family arrangements will be, but I shall be glad when it is over.
Again, thank you for your insights and your encouragement, all of you.