New to dementia journey

[bowlingbun]

Pet, my mum's nursing home had regular events in the home, and trips out for those who were physically well enough (sadly not mum). Relatives were always welcome to join in, and could have lunch with their relative, at minimal cost. This might be easier than just visiting with nothing much to do or talk about. I always took mum flowers, she loved watching me trim and arrange them, just as I used to before I left home, but in all honesty it gave us time together but with a point to the visit. Once your husband has moved, make sure you allow him time to settle in, by not visiting every single day. Learning how to live alone will be a challenge too, so most of all be kind to yourself.

[Pet66]

Hi. It's lovely to hear from you. We are still waiting for the reply re funding for the nursing home. Hope it's soon. Want to see him settled. Hopefully he will be able to go out eventually. His mobility is quite poor but he does use a zimmer frame. Poss he will go out in a wheelchair.
Lunch would be good from time to time. My daughters still hope he will be home at times but I'm not sure it would be the right thing to do? We will have to see.
I'm struggling living on my own but I do realize that it's best for us both. The whole situation still consumes me as I know it does others in similar situations. One day at a time as is said. I will think of things to take though. Maybe history book of the city etc.
I do hope you are well and at least muddling through. Xx

[Elaine]

Hiya,
Mum hasn't actually been diagnosed with dementia, in fact it might just be that she's very old (99), but she is confused, forgetful and numerous other symptoms, so probably age related. It's just so hard to get a 'yes' or 'no' answer and as for an instant answer, no way.
Conversation-
'Would you like a cup of tea?'
'Have I had one?'
'Yes, but it was ages ago and it's gone cold. Would you like another cup of tea?'
'I must have forgotten it'.
'Probably. Never mind. Would you like another cup of tea now?'
'What time is it?'
'Four o'clock.'
'What time do the carers come?'
''Six o'clock. You have plenty of time. Would you like a cup now?'
'I can drink hot water'.
'Well would you like hot water instead of a cup of tea?
Long pause-------------------
'I would like a hot drink'.
'Which do you want, tea or water?'
'You can make me a cup of tea if you want to'

Whatever happened to a simple 'Yes please'?
Should I just make one and plonk it in front of her anyway instead of trying to let her make her own decision?
Elaine

[susieq]

Should I just make one and plonk it in front of her anyway instead of trying to let her make her own decision?
Elaine

Elaine - simple answer ? Yes !
When caring for someone with dementia it's one of the first things you learn; giving them a choice makes their confusion worse as they've lost the ability to make, a choice so don't ask "tea or coffee ?" just say "here's your cup of tea".

[Pet66]

Hi. You sound like a wonderful daughter. Unfortunately whilst my husband has been hospitalised I've discovered that some people do not have visitors. Their family members have lost the will to cope.Very sad. I'm not being judgemental. Each circumstance is different. I do believe all carers deserve recognition and you certainly do. Xx

[jenny lucas]

Sadly, that might just be because visiting upsets them! My MIL with dementia is in a wonderful care home, but whenever I visit it 'upsets' her and although she loves me to visit and take her out, afterwards she becomes very restless, and starts trying to escape (she's looking for me I assume?). It means I have to limit my visiting. It's not a secure home, and if she tries to escape too much, and too often (worst of all, successfully!), then she'll be 'expelled'. 'Fortunately' her dementia has progressed such that she doesn't really have any awareness of time passing now. I'm told by the (very good) staff that when I'm not there, she settles back into the routine and seems as 'content' as she can be these days.

That said, yes, I'm sure there are some families where care homes are seen as places where old people can be put without having to think about them any more (until the will is read.....!)

Visiting someone with dementia, especially a parent, can be so distressing as well....and 'difficult' in that conversation can be very limited etc. That's why I far prefer to take my MIL out on drives in the countryside - she likes it, and so do I, and I don't have to keep up my stream of 'cheery chat' to her.....

I think it would be different if it were a spouse, though?

Not sure if this might 'cheer' you, but my neighbour's wife developed dementia, and in the end had to go into a care home. When my neighbour visited her, so he told me, she always greeted him warmly, as if he'd only been out of sight a short while, and asked where two friends were, that they used to holiday with. Apparently she was under the impression that they were all four of them on a cruise! I've always thought that rather comforting....

[Pet66]

Hi Jenny. Thank-you for taking time to read my post on forum. Yes it has given me hope that hubby will greet me in a positive way. He usually does, just the odd times when he doesn't. Every one is entititled to a grumpy day! Easy to say when it's not happening. Am waiting for the answer re funding which is rather an anxious time. The nursing home caters for his complex needs and is very secure. Not that he could run with his zimmerframe lol.
Am sure feelings are different with spouse as apposed to others, all are very painful and heartbreaking though. I know my daughter's worry about me as well as grieve for Dad as he was.
Hope your day goes well and will please keep in touch. Xx

[SheWolf]

Should I just make one and plonk it in front of her anyway instead of trying to let her make her own decision?
Elaine

Elaine - simple answer ? Yes !

Susie - classic response! Elaine - classic conversation with dementia ridden parent! So funny from a distance, but so frustrating at the time!

Pet, my father has quite advanced dementia and lives in a care home. He's well cared for and the staff are very kind and patient with him, so he's quite content there. However, I still find visits difficult, as the circular conversations are quite trying and it's difficult when you can't have a meaningful conversation with someone because they can't understand long sentences or remember what you said 2 mins ago. Also, denial seems common, which adds another dimension to the frustration. Don't be too hard on yourself if your patience sometimes wears thin, it happens to most carers from time to time, we're only human.

I hope your funding is agreed soon. Things will be much better for all of you once your husband moves from the hospital to the nursing home. Hospitals can be nightmarish places for people with dementia, but nursing homes can be really wonderful. You are usually allowed to take in bits and pieces to make the room more comfortable and homely, so maybe that's something you can focus on with your hubby now, as a way to look forward to better times.

[Pet66]

Hi Shewolf
Thank-you for your reply.Yesterday hubby was quite confused at the start of my visit.Nothing too bizzare and he did seem to pick up. There had been quite a serious incident at lunchtime and I'm sure it unsettles patients and staff. I happened to mention the new place he may be going to. He knows and the nurse had run photos through on the net. The manager explained it would be good to show him. I asked him if he would like a favourite picture and wallplate of his (he chose these on a lovely holiday we had years ago). He would love them in his room he said. He already has photos of the grandchildren in hospital room and a TV I purchased for him. So we are on the way to making the nursing home as familiar as poss. If we are granted it please God.
I've had another very unsettled night. All sorts of thoughts run through my head. Loneliness kicks in. Oh dear, doesn't that sound woe is me!
I will keep you updated with the decision from panel.
Hope your day goes well xPet66

[susieq]

I've had another very unsettled night. All sorts of thoughts run through my head. Loneliness kicks in. Oh dear, doesn't that sound woe is me!

No Pet, that doesn't sound "woe is me"; you are going through a massive change in your life and you are entitled to feel apprehensive about the future. Most of us caring for someone with dementia have been there and most of us have come through more or less unscathed.

Just take one day at a time, try not to look too far ahead and take some time out - just for you