How to talk to muddled husband

I’d recommend you start a new thread Juliecymru as you’ve tagged onto an old discussion about dealing with relatives who have dementia/alzheimers,

Just a heads up that this is an old post
We don’t know if something might have happened to the OPs husband and she’s still reading.

My husband is responding well to chemotreatment for secondary bowel cancer. Likely he will have an operation on his liver and radiotherapy in the spring. We have always thought of downsizing partly to pay off our outstanding mortgage but obvs we didn’t see his illness coming.. now he says we should do (move house) it in the next year. We’ve no definite plans of where we would go there are several options but unfortunately we have various family commitments to take into consideration in making a decision. It all seems rather overwhelming to me, I’m sure if I was advising anyone else I would say it was.! And yet it’s something he wants to do….any thoughts?

I found during visits where no conversation could be had, just holding his hand and listening to his favorite music. Also, large picture books, photography books on his favorite subjects. Sometimes I would just bring a book and read outloud.

Pets don't use words and yet their language can say a lot and they can be quite comforting.

My dear MiL has advanced vascular and is in a care home. DH visits around four times a week and each time it’s like Groundhog Day.

She repeatedly asks to go home and when can they leave. He just goes along with it and tries hard not to correct her.

It must be so much more difficult when it’s your spouse and not your parent.

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Try asking in this group, set up during Covid for anyone in a care home. They're amazing full of information and support. Good luck www.facebook.com/groups/RightsforResidents/?ref=share

So very difficult for you Notjustaprettyface, but sound advice from those who have personally experienced this. A diagnosis is paramount, and if dementia is found, then the required professional support to help you both. In the meantime, music, maybe reading to your DH, talking about happy past events and family members,; therapy, such as hand/foot/shoulder massage; looking at old photos, if possible take him outside for some fresh air when the weather is reasonable. Warm wishes. 💐

Aggie's explains our situation, I cared for both my late husband for 11 years and my late mother both with Vascular Dementia overlapping with 2-3 years. both living with me, both wheelchair bound and my mother blind too. I have a 3 bedroom bungalow and every room in the house was used for equipment and storage of pads and medical requirements. My mother was very settled and relaxed just to be with us, my husband often wanted to go home. When I asked him where is home, he would mention his childhood home, but when we drove there, he did not want to be there either, but wanted to go back to our own home. Wanting go to home is when they are anxious about something and not settled and it usually happens at sun down when they are most tired so yes they are sundowning, but it can happen any time of the day or night. Nothing will pacify at that moment, so distracting is everything which you quickly learn to keep yourself sane. There is so much help and support out there now, but in those days there was not quite so much awareness about Dementia and it was much harder to source the support required. St. John's did brilliant courses for carers which helped me tremendously at the time. The enablement unit in the hospital where my husband gradually recovered from his stroke taught me a lot too over a period of the 6 months he was there, before I finally had him home with one carer to help me 3 times a day. The rest of the time I was on my own, you do adapt and make the best life for everyone you can. We went out every single day having purchased a converted car where one rolled in to tieback, sat in the wheelchair, the other could weight bear, so could transfer with help. You can chose to have a carer double up at home or you can choose to be the main carer and just have one carer assisting you, whichever works best for you and your health & wellbeing. If you are self funding you can employ a PA so you have the same person daily, with a second PA covering her time off. Works well for lots of carers. The options are endless but it can be done if that is what you prefer. Good luck with whatever option you chose in the end.

My husband was diagnosed with mixed vascular dementia AND Alzheimers about 18 months ago …although he’s been ‘ill’ for at least 10 years I’d say!
I was looking after him day and night for passed 3 years , and all told for 27 years since the stroke that started it all! At night he wandered the house …falling , sometimes three times a day …with me struggling to lift a 12st man ( who could not help himself one iota!) off the floor. Then waiting endless hours for paramedics to come help me …then the endless tests they would carry out !
Then after / years of sleeping just 3 hours a night in landing chair ( not a bed) I was picking him off floor at midday ( 3rd time that morning) and I had my third stroke .
My kids then said “ enough mum’’
He went into fill time care ( for which I pay) and my relief was palpable. He cannot remember kids:grandkids/me ….but I visit three times a week anyway. I walk as I have no car .Its time for you to realise your husband doesn’t know where he is or who is with him . Give yourself some credit …for what you’ve done already . I gave half my marriage over to caring! It’s now time for me , and YOU to care for ourselves.

The Alzheimer's Society website has some really good, download able advice sheets.

OP have a look at Teepa Snow's Positive approach to Dementia care on You Tube, she is brilliant. Also Alzheimer's Society has fact sheets on every single subject, you can print off or have sent to you. They have a lovely Forum called Talking Point, for Carers and are of great help to many carers.
As many have said a Diagnoses is vital for correct care and treatment, the earlier the better. If you have a Dementia Nurse (Admiral Nurse) in your are she will be your go to throughout all this. Get a referral from your GP ASAP, if not Dementia UK, have a lovely helpline manned by Admiral Nurses. I am sorry you have to go through this, but with the right care your husband can live well with Dementia, both at home and in the care home. I wish you strength to support your husband whichever way you chose to care for him, as someone else said your remain a carer to the very end even when he is in the care home as you are his voice throughout, he is lucky to have you, so many do not have anyone to fight the system for them.

Gunday my Jim used to ask to go home , but he was at home .i used to push his chair into to hall and back again , sometimes that settled him , sometimes not
It was explained to me that it was called “ sundowners. “ and was the effect of evening drawing in
My MIL came to visit me one Sunday evening , her Daughter carrying a suitcase , so I was expected to have her , she thought she was home , but next evening she was really not with it at all , she climbed over the children’s stair gate , tried to get into bed with us ! I hope your Brother had a good helper , it’s not easy coping
We had plenty of space , but I think the lady who started this thread has a very small house , hoists and commodes in your only living room is hard work

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.