My husband has dementia

I find it’s not so much like having a toddler in the house as being simultaneously PA and housekeeper to a very demanding employer. As well as cook and laundry maid.
Someone from our GP practice with a job title I didn’t catch came to the house and did the attendance allowance form for me.

I don’t feel lonely but miss having time to myself - my DH is a retired academic and we used to spend the afternoons in our respective studies. That’s long gone now that he can no longer type two sentences on his computer or read two paragraphs of a book. I weep for him more than for myself but I do feel resentment sometimes and wish he would consider going to a memory cafe or do jigsaws. We’ve never been great television watchers but we do that a bit more now. Life is a brute.

Oh and let no one tell us we are on a journey. Fearful expression when you don’t want to get to the destination. We’re on the edge of a cliff that’s slowly crumbling beneath us.

FishandChips15 I thoroughly empathise with your comment about coping with everything else totally on your own and it’s getting you down. I sometimes feel like everything’s coming at me at once and I can only cope with one or two things at a time - I’m sure you must feel the same at times. Hope you can find what you need to help ease the burden and worry. Thinking of you.

Thanks Monica. Unfortunately I do not live very close to DHs care home and do not know the area very well.

I suppose I do not want the extra work either. Not that I am lazy it is just that I am coping with everything else totally on my own and to be honest it is getting me down.

As suggested I will contact the Alzheimers Society and ask the question.

FishandChips15

My DH is in a care home with mixed dementia amongst other things and is not very mobile.

I feel I would like to meet other wives in this situation, but cannot find a group. They tend to be for relatives who have a dementia partner, are still living at home and attend groups together. Any suggestions please?

FishandChips15 I think you put your finger on a gap.

Could you start one yourself, possibly based on the Care home your DH is in, if they are willing to help, because I am sure there are many like you, and starting with the spouses of those in the same care home is as good as any.

You could also speak to your local branch of the Alzheimers Society to see if such a group exists, or whethe they would run ne locally.

Thank you kittylester.

www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/attendance-allowance/what-to-include-in-your-attendance-allowance-application/

This might help with completing the form

My DH is in a care home with mixed dementia amongst other things and is not very mobile.

I feel I would like to meet other wives in this situation, but cannot find a group. They tend to be for relatives who have a dementia partner, are still living at home and attend groups together. Any suggestions please?

Our local AgeUk have a guide to filling in the AA form.

Thanks MOnica. It has been on my mind as everyone who knows my situation keep asking me if I’ve applied for the Attendance Allowance. I’ll look into getting some official help. Thanks for the advice. Appreciated.

LynW When it comes to completing the Attendance Allowance form, Please speak to someone to get help completing it. Age UK, The Alzheimer Society or other group like that.

I was a benefits advisor with a charity for many years, and the way these forms need to be filled i is arcane. You need to know what words to use and to constantly repeat what you have already answered in previous questions etc. Many people get turned down because they do not understand what the people assessing the forms are looking for. Age Uk, The Alzheiemer's Society etc, all know these forms back to front and can help and advise.

Juniper and Shelflife. I’m in the same situation as you too. Husband diagnosed with Alzheimer's last Nov although I’ve known for a long, long time something wasn’t right. There’s lots of help out there apparently, but at the moment I’m not sure what help I need. We have great family, friends and neighbours but at the end of the day it’s me alone with him. Haven’t applied for Attendance Allowance or reduced Council Tax, not sure I’ll get it! Feel for you both and all the others too. Shelflife I really empathise with you and understand your concerns regarding the driving situation. My husband took the driving assessment last month as requested by the DVLA and failed. Although he was disappointed, he has taken it well and said he wouldn’t want to be the cause of an accident. From my point of view and our sons, the decision has made it easier for us - it’s a definitive decision and we don’t have to worry about telling him he shouldn’t be driving anymore. Lovely people who took the assessment, explaining kindly the decision. Sending you good wishes too and let’s try and stay strong - that’s for me too, so difficult but trying hard to count my many blessings. Let’s try and stay in touch through this thread if possible and support each other virtually.

Juniper1 - Dementia's such a brutal disease which I've seen from start to finish as my mother came to live with us long before she was diagnosed and we lived with it in the home until she died. During that time I found many things that she could still enjoy, and coming to tea dances two or three times a week with hubby and I was one. She would enjoy the music, tap her feet, and people were kind and chatted to her. She made many new friends and had something to look forward to. At one of these tea dances we met a chap and his wife whose side he never left. We learned that she was in a care home because of her dementia but could still enjoy a shuffle around the dance floor in his arms. He made lots of new friends (you said you were lonely) who were all there for him when his wife finally died, and his loneliness during her deterioration was reduced if only a little by being able to still get out and meet new friends with her. I know it's perhaps a lot to ask but if your hubby whistles all the time, try something musical that helps you to meet new people as well as giving him some pleasure.

granfromafar

I would encourage anyone with a loved one who has dementia/Alzheimers to apply for a Blue badge. It was very straightforward and was granted within a week.

Ditto to this. If they are frail but not actually disabled, you can’t e.g. drop them off while you go and park any distance away. At least I couldn’t with my mother - she’d forget so quickly that I’d soon be back and panic.

Once she moved to a care home, the home had BBs we could borrow when taking them out.

Good post welbeck.

Distract rather than argue and try to enter their world rather than dragging them into yours.

The only thing I would say is don't try to correct people with dementia.
Don't argue or try to reason with them. Just change the subject.
It's hard with someone we've known for a long time. We tend to try to reset them to how we've been together. It won't work.

@shelflife
Thank you, have pm’ you, hope you don’t mind

I expect you already have some helpful replies.
It must be so difficult.
This is to say that I often speak to a lady who lives very near me and who had to care for her husband for a few years before he was hospitalised.
I will ask her for any hints. I do know she joined a career club

Hi.
I am in exactly the same place as you. Husband diagnosed with Alzheimer’s April 2024 probably had it since 2022. Diagnosed as early stage but lots of deterioration since then. More obvious to me than others as he is ok ‘ in the moment’. I too feel very alone despite sons family living near by and despite at least adequate support from the hospital and Alzheimer’s society. The truth is that no one really knows what it’s like until they have lived it 24/7
We are already grieving the loss of the person we knew while trying to cope with our new reality. I only wish I had some advice to give but the only thing Zi can say is that we have to try and get some pleasure out of life while we can. In the past my happiness was wrapped up in our shared experiences but now I have to almost selfishly seek moments of pleasure where I can by arranging some activities just for me. At the moment I can leave my husband alone for a few hours so I’m making the most of that while I can.
Good luck. You will be in my thoughts. X

Musiclady you are correct, my DH is oblivious to the chaos he sometimes causes! At time he is illogical and makes ridiculous decisions!!? Juniper, if this happens please remove yourself from the situation - just leave the house for an hour or so. Please look after yourself.💐💐

Thankyou Granmalarkey, nice to know we are not alone - it's not easy is it!?

Admiral nurses are great. Not only for providers a listening ear but also for practical ideas and support.

Juniper1 My DH was diagnosed with vascular dementia earlier this year. It certainly isn’t as bad as a lot of people, I have learned what sort of things trigger an “episode”. Social skills aren’t great, he is much happier if it’s just the 2 of us, so that can be difficult. We tell everyone about his condition, and some people get it instantly so understand if he suddenly doesn’t want to engage.
. I too am frightened of loneliness, I have always enjoyed company, but our local Dementia & Me group are helpful as is Age UK. He has given up driving which I thought would be really difficult as he has been a professional driver all his life, but he is fine about it and has always encouraged my driving. We are aiming to carry on pretty much as always, we have days out doing our Geocaching hobby, and we are still going off in our motorhome.
I think everyone’s different, so we can only try and be the best we can be, but it can get very stressful when they don’t remember what you told them a few days ago!
I am happy if you want to send a PM.

I’m so sorry to hear this. They are definitely different types of dementia and Alzheimer’s and I wonder if your husband had a pet scan to identify exactly what he has because they are different responses according to what area of the brain is affected there’s a difference between vascular and other types of dementia The different types can be identified using the PET scan.

My ex-husband had Alzheimer’s and he was with me for a year plus and then I found an assisted living where he resided for over two years until he passed away. There’s nothing easy about any of it. My second experience is was my cousin Sheila whose husband had vascular dementia and she had him home for almost 4 years it was a terrible terrible four years with a steady decline because vascular effects mobility cognition absolutely everything -there are differences. I found the Alzheimer’s Association to be very good even if it’s just to have someone to talk with about how to deal with the individual one on one. My cousin Sheila relied a lot on her faith to get her through these years they had been married for 50 years and she was definitely committed to having him home. That’s not something that I would be able to do but every situation is different and I respect folks decisions.

I wish you well I would definitely get in touch with all of the recommendations that have been posted to you and to do your best to take care of yourself because this will take a toll.

Thoughts and prayers sent your way🙏🙏

I can't offer any advice as I haven't (yet) had any personal experience of this devastating illness.
I just did not want to bypass your post without sending the very best wishes, your very straightforward post really touched a nerve. You have the most difficult road ahead of you and I hope the advice and suggestions of where to get help from other posters work out for you. Take care.

Shelflife

Juniper it appears we are in the same boat. DH diognosed a year ago but the signs were there long before that. He has just had a driving assessment and passed! Can't believe it , if the assessors saw his confusion and his difficult moods they might not have been so kind. I drive but don't like it!
You hit the nail on the head in your first scentance - it is a very lonely place to be . Family and friends do not see what I see! I too am afraid of the future and if I am honest I am not sure I am strong enough to cope !? We have been awarded Attendance Allowance and I have POA. Its like living with a man child , I am having to think for him
Belting hot day today , we are just about to leave for a family BBQ and DH is wearing a thick wooly jumper that he refuses to take off!! I have done my any years of volunteering with the Alzheimer's Society and thought I had this in the bag - how wrong I was ! Living with it on a daily basis is getting me very stressed . As for passing his driving assessment,! When we do go out I regularly have to direct him even on familiar routes. His assessment would go well because he was following the assessors instructions. I fear if he becomes disorientated when driving that will panic him and an accident is inevitable. He is now insisting on driving and who can blame him. Alzheimer's is changing the balance of our relationship and I feel I am not as patient as I should be. Don't be alone with this Juniper - I really do understand. Private message me if you need to off load.💐💐💐

I’m in your boats too! Right down to the thick jumper- and also no scarf/gloves/buttons done up etc in the cold weather. And there isn’t a lot of practical help really at this stage. ‘Man child’ is an accurate description. I feel so lonely.