How to talk to muddled husband

Some wonderful advice here. I went through this with my mother. One other piece of advice I found invaluable is to join the ALzheimer's Society online forum. Reading others' experiences in precisely the same situation was an almost daily means of support, jnformation and advice. Everywhere else just wanted to give me a handful of leaflets.

There’s some great advice on . My late fil had dementia and we were told to live in his world and go along with him and not correct him . When he went into a home , it was an old house with wood panelling . He thought he was in s hotel he’d been to years ago . When he asked questions like where was his late wife , we’d tell him she was upstairs getting ready . And if he asked to go home, we’d say he still had a few days left of his holiday .
We would try and distract him with stories of the past or discussing his beloved Chelsea

"I was even hoping that with more physio and general rehab , may be he would be able to come back home even if it meant having carers 4 times a day but now I don’t see any solution really"

Op,
There is still a big sense of denial in tjis post.

Please look for professional support

Why not just provide company when your husband, no need to speak?

I looked after my mum when she had dementia but eventually it became too much and she went into a home. She would ask me when she was going home (her house had been sold to pay for her care) and I would ask her if the doctor had said she could go home.
She would look a bit puzzled so I would say 'have you got your key?'. She would spend a long time rummaging through her bag and purse until she found it and I would say 'that's ok then, you will be able to get in'.

Thank you everyone again for your kind thoughts and helpful advice
I am going to be talking to one of the managers but I don’t find them very approachable
The manager in question wants me to be honest with him so she wants me to tell him that he won’t be able to walk any more
I don’t agree with her approach , I think it is better to say a white lie and say we are waiting for the physio to come
Talking of which , do you think I should organise a physio assessment privately ?

Where I live anyone can self refer for physio. Might be worth enquiring .

Notjustaprettyface, I don't agree with the manager if your husband has dementia. However, if there is a diagnosis, the manager wouldn't be asking you to do that.
Please do have that chat to ask for assessment for dementia so that everybody knows what path they should be treading. Also, the earlier the medication given, the slower the descent if it is dementia. For the time being, I would delay telling your husband that he can't walk.

I had the same problem with my Mum who truly believed we were stopping her from walking when she came out of hospital. I just told her that her long hospital stay had compromised her muscles but she'd probably get there eventually. The home were really good and allowed her try to stand when she hated the hoist and eventually she came to the decision that she couldn't actually walk. Occasionally she will get angry when she thinks we are stopping her from walking but she soon settles down.
At the end of the day, it is you who decides what your husband is told. The home may be his carers but they are working for you and your husband. Whilst I wouldn't walk in shouting they must do as they are told, it does give me the courage to say apologetically that I don't agree and would they hold fire for now.

Deepest sympathy for you and very good advice above, I really hope it helps you and your DH.

We also kept the conversation ‘in his world’ when we visited my father who also had vascular dementia. He would constantly ask when he was going home and we would assure him ‘when you are better’ even though the home was long gone. Worst was when he asked when Mum would visit. We would say she was in hospital and would come when she was well enough. We never did tell him she had died. He would have been so distressed but wouldn’t remember when we next visited.

My mother became like your husband gradually as time went by. Vascular Dementia. We managed to keep her at home but rather than try to get her to speak we read to her or sang along together with the songs she used to enjoy. She was free to speak when her poor old mind and body allowed her to. Precious days and memories.

If there’s dementia, telling the truth can be positively cruel.

We first learned about ‘love lies’ as they’re known, when FiL (staying with us one Christmas) suddenly asked where MiL (dead 10 years) was.
At first we explained very gently that she’d died years ago. He was terribly upset and cried - only to forget and ask again 20 minutes later.

So we started saying e.g, that she’d gone to the shops, or to visit Auntie So-and-So - and he’d be quite happy.

IMO people who insist that you should tell the truth to people with dementia (I have been told this by a so-called professional) are simply clueless.

I agree go with the flow of the coversation. If he asks can we go, say ooh yes, now where shall we go ? And then talk about places you used to enjoy going and what you used to do there. He will be far more relaxed reliving memories than trying to keep track of the here and now

In fairness to the home, Witzend, there isn't a diagnosis of dementia. I think it is quite difficult for third party carers sometimes because they don't know what the baseline was for a person before they arrived on the scene. That's why I think it is so important for loved ones to be able to explain where the difference lies. For example, in Mum's last home, they would say she wasn't that bad because she would answer their questions about what she wanted to eat, etc. She never initiated a conversation and so they were quite clueless about how confused she was. They thought it was wonderful she recognised me whenever I visited. In reality, more often than not she thought I was her mother and it was only in conversation I realised that. She was very muddled but didn't like to say to the staff so she would just go silent on them. She would read continuously and they would wax lyrical about how wonderful it was. She was actually reading the same page over and over again for the most part but would later tell you things which, as we knew her so well, made us realise that she thought she was living the page on the book! Thankfully the new home understand Dementia well and I no longer have to fight my Mum's corner in the same way.

When your husband asks "Can we go now?" or "When can we go?" I am afraid you will just have to answer, "No, dear, we cannot go yet. You have to stay here for some time yet."

But does he mean, when can you go home together, or simply when can he go back to his own room?

Talking about something else - something or someone he remembers might work, or might nok.

Try telling him things, like I spoke to the neighbours today about such-and-such, or tell him something that actually has happened,

When my sister was dying of brain cancer which had destroyed her short-term memory, she became very upset when I had to leave, asking how she was to get home, and where her coat was.

She was in a hospice and I knew very well she would never go home. I replied, " I have to go now, M, I'll ask the nurse to come in, she knows where your coat is, and Mummy will be along to fetch you soon." (Mummy was 17 years dead by then, but it worked, consoling my sister.)

It is horribly hard, and you probably hate yourself for lying, but look at it this way - you are not lying, you are trying to join your husband in his world and doing as well as you can, as you have neither road map nor compass.

When my mum got dementia I made her up a photo book with all the people she loved in it, plus photos from her earlier days. This meant staff (if it was a good day and there were enough of them on duty) could go through it with her when we were not there. We also made a video that was put put on as a loop more or less for her once she became bedbound, full of Whatsapps clips of the great grandchildren, plus us and all of our and her dogs, with her favourite music and sometimes just the little ones' laughter and chattering. She'd calm and tap her clawed hands along to her favourite music pieces (hello Beethoven's Fifth and Bridge Over Troubled Water for the nth time!). Definitely don't challenge what he says, go along with it, 'Yes mummy will be picking you up soon' if he reaches that stage. It's sad that the person you loved is not there anymore, and I hope you find methods of diverting him from getting upset. Best wishes.

Notjustaprettyface

Thanks grannygeavy13
I try and do that sometimes but he becomes quite impatient and insistent so then I don’t know what to do ?

My mum had dementia and was latterly in a care home but often asked if 'I'd come to take her home'.
On advice from the home I used to tell her that her bungalow was being decorated and wasn't quite ready. She happily accepted this.

Witzend

If there’s dementia, telling the truth can be positively cruel.

We first learned about ‘love lies’ as they’re known, when FiL (staying with us one Christmas) suddenly asked where MiL (dead 10 years) was.
At first we explained very gently that she’d died years ago. He was terribly upset and cried - only to forget and ask again 20 minutes later.

So we started saying e.g, that she’d gone to the shops, or to visit Auntie So-and-So - and he’d be quite happy.

IMO people who insist that you should tell the truth to people with dementia (I have been told this by a so-called professional) are simply clueless.

I agree. At one care home I visited I heard staff telling an old lady off who kept asking to go home to see her Mother. They were actually telling her if her Mother was still alive she would be the oldest woman in the world. I thought it was very cruel.

My late husband had dementia and the only thing I could do was go along with it as far as possible and then lie. Eg he thought he was late for work so I’d say your office is closed today for xxxxx reason. It’s distressing but there’s not much else you can do

Very true, I work in care. Sounds very difficult for you. Try to keep the conversation light, only mention family if he brings it up.
Try talking about any interests he might have, gardening, jigsaws, cards etc. There are groups for relatives in your situation. Hope this helps
I hope this helps.

I think the evidence is pretty clear (as you have laid out) about his dementia (diagnosis). Your husband ONLY wants to go home.

We don’t know what treatment or kind of care he’s getting when you are not there. These kinds of cloaked statements by the patient can call attention to inadequate or harmful operations in the facility. I experienced that with my mother - and immediately withdrew her after consulting the Doctor and my brother. I took her to my brother’s family home.

I believe you can help him by granting him his wish and doing everything to set up his home life - with house adjustments and in-home care.

It may turn out to be a challenge, but it may turn out to be a blessing.

It actually can be classed as abuse to keep telling someone unpleasant truths, because to them, the trauma is new every time they hear it.

The feelings are exactly as they were the first time.

Reading through these posts, I must admit I am in tears at what caring daughters/wives/partners you all are and how I wish I could turn back the clock. My mum was diagnosed with early onset dementia in the late 1970s at the age of 59. I was in my 20s with a toddler and lived over 100 miles away so the opportunities to visit her were few. Back then, Azheimer's was hardly known and there was very little support/advice available for family carers about how to cope. I recall correcting my mother when she said, or did, something wrong and sometimes getting annoyed when she forgot things so quickly. Mum eventually went into a care home 8 years later (a nursing home which was the only place that would take dementia patients at that time). By then she was very confused and agitated and the care home's policy was to keep dementia patients sedated and mostly in bed in their nightclothes. Sadly, from then on until her death 3 years later, I had virtually no interraction with my mum. We could no longer have any conversation and there was no advice or support from the nursing home so I just held her hand and talked in the hope that she could hear me. Thankfully, 35 years later, the Alzheimer's Society is doing good work and dementia is no longer the "unspoken" illness it was, so other people, like you wonderful Gransnetters, are there to support and advise. I just wish my mum was still here and I could talk to her again.

Gundy, most people don't just stick people in a home but get to the point where they cannot cope any more caring for their loved ones. Furthermore, they already feel guilty and most will have considered the sort of option you handed over to your brother.

When you are not a spring chicken yourself and you are trying to care for someone who has no mobility, it is nigh on impossible without making yourself ill and then you are no good to anybody. Finding in home care is enormously difficult in this country. If you use an agency, it is very often a series of different carers who don't have the time to do everything that needs to be done. If you use a private carer, you have to be an employer who deals with all their tax, NI and pensions. This is really complex when you are trying to care for someone. We had a wages service in the last few months but it was so complicated even with them with all I had to do. With immobility, you need two carers to transfer the patient so double the cost and woe betide if your patient is incontinent and needs changing the moment the carers have left.

Grandmagrewit please don’t beat yourself up, dementia was little understood 50 odd years ago and you did the best you coukd given you had a young family and lived so far away.
Holding her hand and talking to her was the best thing you coukd have done. Forget the irritation you felt, it’s natural, certainly then. You did your best, your mum woukdnt want you to be feeling so bad, times change and we understand more now than we did.
My mum died 11 years ago, and I sometimes, at the start, used to correct her too and confess to having been impatient at times, so I do understand you might feel guilty but don’t. There is no need. We are all human and you did what you coukd. We all do.

Do you have any photograph albums? Sometimes just opening one up and mentioning who are in the picture, where it was taken, or remember when we ....... about the photo can distract for a while. Really difficult situation for you and no doubt you will be trying to comfort your DH and not cause any more agitation than he has already.