My husband has dementia

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.💐💐💐

Should he be driving? What if he kills somebody & you knew he wasn’t fit!

Madmeg

My mum had it, it developed after my DD died and he warned me she was "losing it". I didn't know what he meant at the time.

Her main issue was confusion. She confused day with night and was spotted by a couple driving home late who saw her waiting for a bus at 3 a.m. (she was going to the hairdressers!). The GP was called and he referred her to hospital for six weeks observation. She continued to be confused and the consultant said she would not be safe at home. They also didn't think she would cope with coming to live with me either, so it was a care home. I sold her house to pay the fees.

After a shaky start she settled well at the home, made a couple of friends, loved the staff, and really didn't deteriorate much more. She knew who I was, also my DH and her GDs. When I told her the eldest GD was getting married she said "I'll have to get a new hat". In fact, I saw a new side of her in the Home - I'd always regarded her as quite a boring lady and she became quite chatty and even amusing. She also suddenly asked me if I had had to sell her house to pay the fees!

Sadly, she died suddenly of an unrelated health issue and I was not heart-broken because she had been spared the more dreadful progression of the disease. I was not aware of her having any particular drugs to slow it down. She did ask me if I had seen her Mam and Dad recently (they had died decades earlier) and I just said "no, not for a few weeks", which she was happy with.

I second the advice to try the website Talking Point. You will find lots of lovely people who know what you are going through and will give advice and support.

Just to say that I did not find it to be as stressful as some have found. Both my DD's mother and sister had dementia and now one of his nieces and nephews (children of different siblings of DDs) so it's probably likely that I will get it.

It's a different dynamic of course with a lifelong partner, far more personal and emotional I would guess.

Take care of yourself too.

That was brilliant for your mum & the family that the home your mum went into was excellent care.
We had rubbish care for my dad, three different homes. We thought he was neglected & decided to bring him home & nurse him ourselves, along with a carer Am & Pm.

Mt61 From my 10 years experience as a Benefits Advisor for Age Concern (as was) I can tell you that my experience of people with as many problems and difficulties as your friend, rejection was quite common.

I came to the conclusion that the relatively low grade clerks who deal with these forms, scoring them like credit card applications, are just so unable to cope with, and, I suspect, are suspicious of these claimants.

The other thing to remember is that AA is not granted on the basis of your health issues, but you disability issues. I had clients with no medical conditions diagnosed, who got AA because they were so weak and frail, they needed help because they could do nothing for themselves. Others with more conditions were turned down because they were still managing pretty well - and of course not all disabilities are visible. I had one lovely sunny lady, who seen out withr DH seemed fit and well, but she had Meunieres disease and sometimes was reduced to crawling round the floor because her vertigo was so bad and once fell against her lit cooker, setting her wig on fire, she had alopaecia, and starting a house fire.

The AA questionnaire also requires cetain words to be used and certain concepts repeated that unless you know the rules, makes success with the form a problem. Never fill in a form with out help and advice from Age UK or Citizen's Advice or other similar organisation.

My friend’s granddaughter does her shopping & showers her before she goes off to do her full time job. Life is such a struggle for her. I put all that on the form- tbh I found it a struggle as there was pages & pages, very confusing questions.
Thanks Monica. I will get her to book an appointment with Age concern to do the forms properly.

Mt61

My friend’s granddaughter does her shopping & showers her before she goes off to do her full time job. Life is such a struggle for her. I put all that on the form- tbh I found it a struggle as there was pages & pages, very confusing questions.
Thanks Monica. I will get her to book an appointment with Age concern to do the forms properly.

Btw Monica, who would be the best body to help me fill forms for a blue badge?
I struggle with hip & knees (getting my knee op soon). Or can you only get one if you a on a benefit?
Also I need to be near the loos as I have incontinence issues.
I have reports from both urology & orthopaedic surgeon- would these be enough? Thanks oh 60 btw.

Just want to say how concerning and touching these interchanges have been to read. Whiff you have been a heroine. I think it was you that said you would would want to be put in a home and not visited. After all you have done! But I understand completely. Aging and shuffling off face us with so many new challenges, previously unimaginable and yet all part of life.

kittylester

Different types progress differently.

OP, have you applied for Attendance Allowance?

and a reduction in your council tax. Dementia sufferers do not pay

People living with dementia are eligible for a reduction in Council Tax if they have a confirmed diagnosis and are claiming (or eligible to claim) Attendance Allowance.

Mt61 Unfortunately I hve never done a Blue Badge application and I think conditions for getting it can vary from Local Authrority to LocalAuthority, but again, Age UK (as Age Concern is now called will be able to help.

Poppyred

My mother regressed to childhood over a 6 year period. Didn’t recognise her own children. I don’t think it makes much difference what label you choose to call it, it’s a horrible way to end your life. I didn’t cry when she died, she had died a thousand times before then.

I am so familiar with everything you said so perfectly in your post. <hugs>

Juniper1, I am so sorry to read your post and hear of your loneliness. It is a scary place to be - I know - my husband has some sort of dementia and is in a care home now. This isn't something I expected at his young age but I am strong and will get through this and make sure he has all of the things to keep him healthy and happy, while possible. You might find your husband able to do some activities early in the day but afternoons and evenings can be a quiet time of no stimulation and some rest or reading, tele, etc...

You will be in my thoughts and prayers.

M0nica

Mt61 Unfortunately I hve never done a Blue Badge application and I think conditions for getting it can vary from Local Authrority to LocalAuthority, but again, Age UK (as Age Concern is now called will be able to help.

Thank you will give them a ring tomorrow.

Marmin

Music can be a big help. Music he knows and likes.

I noticed Whiff mentioned her mum singing songs her dad had taught her, so have a look at playlistforlife.org.uk They have had great success by compiling a playlist of music which is meaningful to the person. It was started by Sally Magnusson, daughter of Magnus, when her mum had dementia. Good luck.

My Dad has vascular dementia and he quite often sings and warbles away!
I commented on how nice his singing was one day and he said,
"I'm serenading you." 🥰

I’ve just looked at the Playlist for Life website, and see Sir Alex Ferguson is a great supporter. I see him pictured with Frank Dunn, who was a top cardiologist in Glasgow. His prescription of a ‘wee dram’ on a Saturday night was very popular in his wards!

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.

It is something we dread getting and worse I think for the carers. Do hope the experiences of others will help you Juniper. It must be so lonely and as a widow I understand that but you have the added worry of caring and getting older so it does become more diffucult and perhaps there are benefits you could get to help..

Mt61, I appreciate your concern regarding my husbands driving and to be honest I am disappointed he has passed the assessment. He had already been given the all clear to drive from DVLA and this assessment was in addition to that. The assessment is linked to DVLA. I am in a difficult situation because he has been deemed fit to drive. He manages the car well, disorientation is the main problem. I instigated this assessment ( unbeknown to my husband) because as you say if he were to cause a serious accident I would be devastated! However he is legally fit to drive. Without going into detail I have done everything possible to stop him driving!! I saw our GP and got the distinct impression he thought I was being overcautious! He has another assessment on the horizon. Apparently people with dementia are often allowed to drive because driving is a skill they learnt many years ago and is deep rooted in memory, learning new skills is very difficult for them . Dementia is a very complex condition!

So sorry x seems we’re hearing of more cases than ever ..

Hi, I'm so sorry to read your post; my dad had Vascular Dementia and it was so hard for my mum.
Depending on your location - and if you have a spare room - you could also look into 'homeshare', which is a very low-cost way of having someone live in your home, in effect as a helpful friend. It's low cost because it's not a job (they go out to work) but they commit to giving 10-15 hours/week in a mix of practical help and company. I know Share and Care Homeshare supports a lot people with Dementia, including couples where one has dementia and the husband/wife could do with some friendship and moral support, and a little respite.
The Alzheimer's Society also has a wealth of information and support options, including speaking to a Dementia Advisor about your specific situation.
Good luck, and wishing you all the best.

I know how sad it is. My late DH had Lewy Body dementia which caused psychosis, which was hard to live with. He latterly had two days a week at a day centre, which helped. As others have said, check the aforementioned websites. Take all the help you can get. That doesn’t alleviate the loneliness of not having his ‘ company ‘, of course. Concentrating on home based hobbies and interests helped a little. It’s definitely worth going to the dementia cafes. It is most definitely something that changes your lifestyle and choices. Wishing you health and strength to manage this stage.

Juniper1, I do hope you get all the help and support you need and deserve. 💐

I know little about dementia.
My family mostly suffers from heart failure and strokes, but some years ago I had wonderful elderly neighbours. Pauline developed dementia but was still able to play her piano brilliantly. Music seems to be a huge help for people suffering from dementia, even if they don't play an instrument. Sorry I can't be of more help, but my heart goes out to you.

Re Blue Badges, I used to have one when diagnosed with scoliosis in my thirties and I was a self-employed accountant dragging boxes of client's papers to and from offices to home. I never abused it, parking normally wherever I could. At some point (maybe ten years ago) I had to re-apply and had an over-the-phone interview. One of the questions was "Can you cross a road at a pelican crossing before the crossing signal changes?" and I said "usually, unless I am carrying a heavy bag". I was denied the badge.

I am going to try again for my DH who has severe walking problems and recently a spinal fracture. He can't cross the road in time, is always holding up the traffic. But I fear there will be something else that causes him to be declined.