Husband has Young Onset Alzheimer’s - aagh struggling!!

[Peelgirl76]

Is there anyone on here in a similar position to me (64)? DH diagnosed with Young Onset Alzheimer’s in June 2022 (67 now). Our lives completely turned upside down, retirement plans (camper van, travelling, renovating our house) obliterated. I reluctantly gave my job up in Feb this year and am now DH’s full time carer. He can’t be left alone and trails me everywhere, and my life is now a repeated daily drudge. Today I discovered I could order cigarettes on uber eats along with my regular wine order. I haven’t smoked for years, but slipped out onto the patio while cooking for a cig and glass of wine. I felt utterly thrilled! But now I feel so so lonely.

I have absolutely nothing useful to say, @Peelgirl76 ... apart from yep, it's shit, and I feel as though I'm not allowed to say that in real life. MrG is considerably older (82), but went from perfectly fine to ... er ... very much not fine very quickly. On the bright side, he still goes out for walks on his own - always the same route. But if I say I'm just going into the village for milk, it's always "I'll come too". He gets twitchy if I stop to chat with anyone and the only people he really engages with are other people's dogs, all of whom love him!

MrG and I are in England. His children are in Canada. I have no children and my only sibling is in NZ. It is a lonely business.

I'm currently half way through a bottle of wine ... cheers!

@Peelgirl76 & @Gonners, so sorry you are both experiencing this, it truly is utter shite and you both have my sympathies, truly. I work in a job with much exposure to the difficulties facing family carers and it is relentless at times and a whole new language to learn.

Please reach out to all the support groups that are out there, and there are many nowadays. Day centres for some respite for you, and also check out the NHS website for signposting to support https://tinyurl.com/4rjmn6w. Good local support can make all the difference to your own mental health in navigating this truly difficult path.

Much love to you both x

Thanks, @Goin4Gold - there is definitely support out there, even if it's limited. We had a home visit (optional, but obviously I went for it) from a community mental health nurse, who was clearly here to assess the home situation. I would have liked 5 minutes with her on my own, but that didn't happen.

She did, however, tell us that there is an NHS-run group called "Living Well with Dementia" and that we could opt in or out of it. I immediately opted in, ignoring MrG's look of horror, and she said that was a very good thing as otherwise we'd be deleted from the system, whatever that means.

Our first group meeting (of four) is on Wednesday. I am confident that MrG will simply tune out and not listen, and that people will rant rather than listen or discuss.

I'm so sorry, it really is shit. My ex has young onset Alzheimers, hard to say at what age it started as it was undiagnosed for many years, but I reckon around 52-53.

We were together for 25 years and had two young children. She was always easy to love, difficult to live with, but her behaviour spiralled and it felt very abusive. Looking back, I reckon she was scared and confused and masking like mad, always lashing out and denying things we had agreed, and insisting I was an impossible bully. I was totally gaslit. She retreated into herself, got fired from her job, gave up her friendships. I worked full time, did all the childcare and housework and became enormously resentful of her.

We did try relationship counselling but it was useless - she could never retain why I was unhappy and this felt to me as her not caring enough to listen. Eventually everything crashed in - I developed severe depression, had to quit my job, couldn't pay the mortgage. The children were getting really affected and so I finished the relationship and sold the house. With the proceeds I bought two small flats in the same street, so the kids could retain both parents.

Without my support she spiralled fast. I began to suspect dementia but it took a long time to get her diagnosed. Since then - 5 years now - I have been her carer. (Not quite the fresh start I was hoping for!) It has been very hard, and there is very little available for this small group.

It has been the saddest thing watching her decline, and exhausting supporting her and our kids through it.

Thank you for the opportunity to get it off my chest...

So sorry you and your DH are going through this, OP. I know a few others in a similar position and it is very, very difficult. I'm a carer for my DM so not the same at all but I do have some insight into how tough the day to day can be and I really feel for you. Sending you love and strength.

I'd also recommend getting in touch with this organisation:
https://www.raredementiasupport.org/

They are awesome and have supported me since DM was diagnosed with Lewy Body Dementia but they also offer a lot of expert support (online and otherwise) to families affected by Young Onset Alzheimer's.

My brother has early onset; he’s now 59 and has had it for several years. It’s difficult to find anything locally for him as most groups are aimed at older people and he is reluctant to attend. He’s also losing his speech more noticeably now so think he finds it hard to engage in anything social.

I wish I could say there’s lots of support out there but that isn’t our experience in the area we live in.

My brother largely spends his time watching TV as he is no longer able to go anywhere alone (gets lost) or do much for himself other than making a cup of tea. I do take him to a social event once a month but it is largely older people there. It’s good to get him out of the house though and he enjoys it once he’s there even though he refuses occasionally.

I don’t care for him full-time but think I will be doing at some point in the future. It’s very difficult. Do you get any time for yourself? Any respite? X

Thankyou for your kind and heartfelt responses, you all have my utmost sympathy! And apologies for not replying sooner. I had a thick head this morning from yesterday’s wine 🤣 and was up during the night with DH (wanders around the house in the early hours, I have to make sure he doesn’t escape out of the house again). After getting him showered, dressed and breakfasted this morning, I took part in an online workshop for people with young onset dementia and their carers. I was in tears recounting my experience of navigating life after his diagnosis. Which is proper shite as you all know. My DH refuses to go to any daycare activities, he was never a group person anyway, preferring solitary outdoor activities such as mountain biking, rock climbing and hiking in the Yorkshire dales. None of which he can do anymore due to lack of spatial awareness, cognitive function and motivation - lethargy and lack of initiative being a common symptom of this cruel disease. He can’t even make a cup of tea, or use his phone/ipad anymore or even use the tv remote. Keeping him occupied all day is a massive challenge and frankly mentally and physically draining. Meanwhile I feel my own life has completely stopped in its tracks, and shrunk to endless nothingness….. I buy a few hours care in each week so I can go for a coffee with friends or to the shops. The worst is I can’t see an end to it all any time soon.

This is such a good book.

Losing Clive to Younger Onset Dementia: One Family's Story https://amzn.eu/d/7I7G34P

Op, I have no experience of young onset dementia - but my dm had the same experiences with my df.

i just wanted to extend my empathy towards you, it’s so hard and it sounds like your dh is quite far into the journey and quite quickly.

Remember to not feel guilty about mourning the life your thought you’d have, or be resentful for the circumstances (not the person), I am sure your friends don’t fully understand, it’s very very difficult. The person you loved has changed, through no ones fault.

so if you need the occasional cigarette- it’s the little wins - you do what you need to do. Those with no experience of dementia can judge but you are very welcome to ignore them. I haven’t walked in your shoes but I’ve seen someone who has and it is heartbreaking.

on a different note, do you have a long term care plan? Have you looked at potential homes?

(It was a tough watch but Louis Theroux did a wonderful doc on dementia)

My heart goes out to you peelgirl76.

It's very difficult to get support when the person with the dementia is reluctant / refuses to attend groups. All I can tell you is my parents experience. My DM was a night waker / wanderer and at the risk of scaring you - this is a major factor in deciding on care home placement. You can't be awake 24 hrs per day.

Have you been assessed by social service as a carer - important to get on their radar for all sorts of support, so I strongly urge you to make contact with them. You can get a reduction in council tax too.

Local groups differ, but it's also worth making contact with your local Alzheimer's society group. They don't get hung up on the type of dementia and can be a brilliant source of information and support for you, even if your DH isn't interested.

Try and find a care agency which does companion care. They are fantastic for giving you a couple of hours respite a week and as he gets worse it will be invaluable. I cared for my FIL who had early onset and it kept my sanity while DH was at work.

Ours took him to the gym, or for a bike ride and he loved it. If it was bad weather they’d sit in a room with him and just chat, leaving me to get on with other bits.

Dont be afraid to ask for help and assistance

Hey
yep, same boat
my dh has yod.
it’s a very lonely place.

sadly I have recently discovered his dil has been stalking my posts here. So I am now completely limited to what I can say.

(thanks for stealing my safe space, which I have used for 23 years)

but I can be reached on DM.

DH has Alzheimer's, getting slowly worse, though at moment he can be left on his own during day or evening. He gets confused and mixes up names, and misunderstands things people tell him. My biggest problem is trying to be patient and not get irritated, because I know it's not his fault. I often go out of the room and do a silent scream in the kitchen! Sometimes it's like living with a stranger.

What a sad situation.
Can I make a practical suggestion. If you have any joint savings, put them into separate accounts now. If you have a joint account where both your incomes are put, again separate these. At some point he may need residential care and it’s so much easier if finances are separated. My DM did this after my stepfather was diagnosed with dementia on the ad ice of their bank. He became reckless with money and spent £100s a week on crap until the bank put a spending limit on his card. A monthly standing order was set up to pay a set amount from his account into my DMs to cover half of all bills. When he did eventually need care at home, she could show the figures to the financial assessment team and they took his costs into account. Also, if you own your own home consider making the ownership at Tenants in Common, although if he does need residential care they can’t use your home for care costs as you’re over 60.

How utterly, utterly shit first you. You don't have to feel guilty about how you're feeling. You're probably grieving for the future you had planned as well as grieving for your DH.

Have you had a Carer's Assessment yet and has DH had a Care Needs Assessment.

I do agree with the PP though who said that you can't be awake 24 hours and usually when they need care at night, it's time to start looking at Care Homes