New to dementia journey

[Anne001]

And he has people caring for him who are rested, get regular breaks and have the skills and equipment to help him. However much you love someone, there comes a point when that is not enough to keep him safe.

Sadly, guilt and mourning become part and parcel of our lives. But I guess we do what is best for our loved ones and that is the price we pay.

In time there will be positives to him being in care too. You will be rested and more able to help him and the home get to know each other.

Anne x

[Pet66]

Thank-you for lovely comments. Today's visit wasn't bad. My daughter and myself took him round the grounds which are very pretty. Ist time he's had fresh air since 7th November. He enjoyed it. Got a little cold even though we put cardi and a blanket.on. Later on he asked when are we going home. That's hard to take.
I've noticed I'm using the forum such a lot. Maybe too much?
Hope you are OK today x

[Elaine]

Course not 'too much' Pet. Even if people don't always answer each of your posts we are still reading and wishing you and your husband well.
This will sound like an insensitive question but is asked out of a wish to learn. What happens if when that question, 'When am I going home?', is asked, the reply is 'You can't come home. You are really poorly and have to live here now'. Does that ever have the effect of settling someone's mind, does it cause distress or is the answer forgotten by the next visit and the question asked again? Does it entirely depend on the individual? I'm asking because if ever Mum is in a nursing home, I am dreading that very question. It must break your heart every time.
I hope hubby enjoys his tv Pet and glad you had a lovely walk around.
x
Elaine

[Pet66]

Hi. To answer your question re going home. My hubby has it is in head sometimes that he's only a fortnight at the nursing home. I don't at the moment say " this is your home now" I think he would despair. I explain that he still needs nursing after his stroke and where he is is a nursing facility. I try never to say the word home. When I'm leaving I tell him have to go will miss the bus, and if needed I say to the house. It may be me who struggles with the word home but I feel it's kinder to him. Today I asked 1 of the staff if they would keep him company while we left. He seemed reasonably happy with that.
I believe you will find the way round to the dreaded words one way or another. As my lovely younger daughter said, if we get it wrong it's still come from the right place. It's an awful learning process that's right one time and wrong the next. So very painful for us all. It's still new to me. Someone said it gets easier to cope but I can't see that. Maybe we get a thicker skin. Mines very thin!
You take care as much as you can xx

[jenny lucas]

Oh dear, just tried to post, and it bumped with Pet's latest post!

I'm sorry that the idea of sleepovers is impossible. I do, though, quite agree with your policy of not calling his residential home his 'home'. I've said, in the past, to my MIL 'where you're staying'...not implying that this is 'for ever'. I do agree that it's kinder to let him think it's just 'while he needs to be here'...which really is true, when you think about it.

Glad today's visit went a little less painfully. It will, slowly, become what we who live in Cancerworld came to call 'the new normal'. So, so sad.

(Apologies for getting his age wrong - I obviously read the post incorrectly.)

[susieq]

Yes, you have to side step the question "are we going home now ?" or "when are we going home ?" - it's definitely kinder that way. To answer the way you suggest Elaine would definitely cause distress. There will come a point when he will cease to ask, but you can't put a timescale on it as it differs with each person.

I used to tell Mum that she was staying till she got better but it was hard and I'd often leave feeling like a rubbish daughter and full of guilt. In about a month (if you're anything like me) you will have a strong urge to take him home and then you have to be strong and remind yourself that the care home staff are better able to take care of him.

For your own sake it may be better to reduce your visits for a little while - give him and yourself a chance to adjust to this new way of living. Sadly as his dementia gets worse he won't remember whether you visited today, yesterday or the day before.

[Pet66]

Yes I often get the strong urge to have him home. My heart wants that but my head tells me it wouldn't be fair to him and impossible for me.
I have read several posts about people living with recurpussions of cancer. I do understand some of the feelings and my parents and hubby's parents lost their fights to it and all young. These illnesses are very cruel. Just want you all to know that my heart goes out to everyone using the forum for whatever reasons
Xx

[Pet66]

Oh dear. I feel am using the forum far too much. Find it such a help.but maybe I should refrain for some of the time. Wouldn't want to be overtaking even though I want to be there for others as well as get the lovely support have been receiving xx

[Elaine]

That's what the forum is for Pet, to be used as much as you need, when you need it.
Hope you get some refreshing sleep tonight.
x
Elaine

[susieq]

Oh dear. I feel am using the forum far too much. Find it such a help, but maybe I should refrain for some of the time. Wouldn't want to be overtaking even though I want to be there for others as well as get the lovely support have been receiving xx

not at all Pet - visit and post as often as you want to ! I'm just glad that you find our support helpful and I'm sure, in time, you will be supporting others