I’m at the end of my tether!

[Peelgirl76]

Hello, I’ve been scouring forum posts for some time but this is my first post, and don’t quite know where to start. My husband was diagnosed with early onset Alzheimer’s 2 years ago, with symptoms several years prior. I thought he was depressed as it was during lockdown, he barely spoke and was very passive aggressive, though not physically.

He‘s now 66 and I’m 64. He was an intelligent man, a retired Chartered Surveyor with a part time consultancy. Unbeknown to me he’d simply walked away from his business and I had to deal with the aftermath, contacting customers, dealing with his tax liabilities etc. At diagnosis he was told never to drive again, so I had to drive us home (in his car which I’d never driven as he never let me, I was terrified!). Thankfully he surrendered his licence and we sold his car, but he‘s never stopped reminding me and resenting me
daily. He’s been on Memantine since diagnosis, but I’m not convinced it’s doing anything any more.

Very quickly, while remaining verbally articulate, he lost all executive function. He now cannot undertake the simplest task without me ie getting dressed, showered, cleaning teeth, cooking & preparing meals, grocery shopping, all house diy and admin, literally everything. He’s not even able to make himself a cup of tea, answer or use a phone, or find his way around our house (ironically he did the drawings and loads of diy for our extension 10 years ago).

I’m still working but due to retire prematurely in March, as caring for him while working from home (my employer allowed this special concession) 3 days a week has become utterly impossible. I’m gutted as I love my job and colleagues as they preserve my sanity, and financially I won’t receive my State Pension for another 2 years.

My multiple challenges are (1) his depression - daily head in hands sobbing all day long, doesn‘t want to be alive, please take me to Dignitas in Switzerland etc (2) verbally aggressive sundowning from around 3pm to throughout the night, during which he strides around me aggressively accusing me over and over of stealing his money, house, car, life, entrapping and imprisoning him, swearing, demanding I take him home/to his brother/our son/ to a ‘lawyer’. This affects the later end of my working days when I’m trying to compose and submit reports to a deadline (I’m only sat 2 feet away from him to keep an eye). When I say no to anything as I’m working or it’s the middle of the night, he swears at me and ramps up - I’m going to walk out/I'm divorcing you/demands I leave ’his‘ house/get a lawyer now etc etc Several times he’s actually left the house and I’ve had to follow and persuade him back, even during the night (3) Shadowing me literally everywhere to every room in the house inc shower and toilet, I don‘t have a single moment‘s peace on my own, it’s driving me insane (4) He gropes me sexually most nights and gets grumpy when I gently push him away - it’s just not going to happen as I’m utterly utterly exhausted and not remotely interested.

In early January he was prescribed Mitrazipine to help with depression and sundowning, but within 3 days I had to stop it as he became truly off the wall delusional and paranoid, and I just couldn’t cope with his behaviour. He’s just started on Sertraline this week (he refuses daily so I have to fight/persuade).

I‘ve also attempted daycare several times in the last few months. He hates and resents it, every single time they’ve had to call me to cut it short and take him home.

Last night I crept downstairs in the middle of night to watch a Netflix thriller I like (he hates it) - within 15 mins he’d come down and snapped the big light on, dragged the sofa throw off me and for 2 hours stood in front of me and the TV raging for goodness knows what reason - resentment, jealousy. Yes yes of course I know he has a condition that makes him do this - but where am I in all this? It’s now almost 4pm on a Sat afternoon and I’ve downed yet another bottle of wine. I’ve put 2 stone over the last 2 years and feel my life is over.

Sorry for rambling, I really am at break point.

 

[SAP]

Hello @Peelgirl76 . You really are having an awful time and I wondering if it’s time to ask for help. I’m thinking that your husband may not submit to this but it might be time to speak with social services and ask for an assessment.
The sundowning, walking out and aggression verbal or otherwise on top of all the physical care he now needs may indicate that thinking about carers or indeed a care home is appropriate at this point.
You can find support for yourself if you have a local carers centre .

Support where you live | Carers UK

www.carersuk.org

On another note , is your husband getting Attendance Allowance ?

 

[Blissy]

So sorry you are having such an awful time and totally understand you are at the end of your tether. As suggested in previous post I agree it is time to ask for help. Do contact Social Services as soon as possible you should not be dealing with this alone.

 

[amIinthewrong?]

I don't know if this is going to be sound advise,I do think you should contact social services and say how it's really interfering in your working life,say that you can't give up your job and be a full time carer as well not in these times when prices are going up and up on everything and that you love your job, also that you feel like the prisioner in your own home mention that he is touching you inappropriately and you don't feel comfortable with it at all, and you shouldnt have to be treated that way, really put the point across that you will not be able to care for him, and want to keep your job that way you are making it known to social services that you can't juggle all of it and that they have to do something because you deserve to have a life, I'm sorry you are going though this, you need to consider what you're needs and wants are as well, also you're life isn't over you will how have to fight for what you want and be stern about it which I'm sure you can do it because you have done everything else 💐💐

 

[Buntie123]

Yes I’m in the same boat exactly x. Minus the wine x. The shadowing gets me down. And I do think social services be involved to get the ball rolling for support

I’m sorry your going through this x what a nightmare x. Husband is 67 x

 

[Veritas]

I am so sorry - this sounds totally grim.

If you can cancel your retirement I would strongly advise that you do. You need that job to retain that sense of self that your present situation is destroying.

In any event, your GP needs to get involved so that specialist help can come your way, and social services needs to get on the case with needs assessments for both of you. You are at high risk of burnout; don’t let it get that far.

 

[Sarasa]

@Peelgirl76, make sure you keep your phone on you at all times and if you feel threatened by your husband lock yourself somewhere safe and call the police. It might sound drastic, and I'm sure your husband wouldn't want to hurt you intentionally, but it sounds that that could happen.
I'd also cancel your retirement if you can. Things are unlikely to get better if your're around more, you'll just resent your husband more.
I too wonder if it is time to consider a care home or at the very least some respite. Not all care homes are alike so maybe try and visit a couple and see what you think.

 

[UncleZen]

I hear you, im in a similar position to you. Just retired because of my wife, this annoys me more than anything because I was at the top of my game and loved it. My retirement has not panned out how I had expected it to. Wife has delusions and doesnt recognise me. Honestly i get more sense out of the dog.
On the upside I've managed to get her to attend a demtia cafe once a week.

Just a rant, sorry.

 

[Snooze1]

My husband is the same age as yours and I’m 62, my husbands decline became evident during lock down but was probably bubbling away under the radar for a year or two before. Please get SS involved soon and start getting any help possible. It will help to have you in the system as your husband might take a turn downwards quickly and you need someone on your side. This is a terrible terrible situation and my heart goes out to you. By the way my husband took a fast downward spiral last year and is now in nursing care, without having SS onboard already I feel the process would have been so much harder….. start preparing for the future. Love and positive thoughts x

 

[sapphire turner]

OMG Peelgirl76 that’s a nightmare it sounds very similar to my husband and I have been making noises about mirtazapine as the next thing to try, so I am disappointed that it didn’t help in your case. Everything happening to you seems very mainstream dementia but it is just so awful to live with, especially if you still have to work. Thinking of you and sending love ❤️ xx

 

[leny connery]

This is really awful. I am sorry. No other way to describe it. My dear, what you have to put up with. Please do seek SS involvement. No one should endure that kind of treatment, even if he 'does not mean it, or know what he is doing'. I hope you get help, and soon. Hugggggsss

 

[Violet Jane]

This is absolutely dreadful. Your husband's behaviour is coercive and scary and you shouldn't have to put up with it. You urgently need to get in contact with the health professionals involved with your husband and with Social Services and tell them what's happening. Perhaps a change of medication might improve your husband's behaviour but, if it doesn't, then I think that it's time for a care home.

I also think that you shouldn't give up work. Nobody is going to compensate you for your lost earnings; Carers Allowance is a pittance.

I really hope that you get help soon. Your husband's behaviour is intolerable.

 

[scotlass]

you shouldn't have to put up with this , you're doing what you can for your husband, but you shouldn't be in a position where you feel threatened, you must get SS involved as you can't go on like this, you do still have a life, no one should be expected to be treated like this, If your husband didn't have dementia, and treated you this way, police would be involved.... x

 

[lollyc]

Are there any alternatives to daycare in your area? My mother hated the daycentre with a passion - bingo and jigsaws! - and refused to go back. I did however find other groups, run by Age UK and MIND that she really enjoyed, and seemed to have some purpose. The MIND group had a theme each week e.g. Spain -the food, discussions etc were all based around that. They always did a wordwheel quiz (taken from the newspaper the previous day, so they had the answers!) and had sufficient helpers to just sit and chat if that's what PWD wanted.
As others have said, approach SS, although in my experience, if you are self-funding, they are singularly unhelpful.

 

[Firecatcher]

I’d strongly advise you not to give up your job. You enjoy and it gives you an identity and gets you out of the house. Two years income if you were planning to retire at 66 is a lot of money to lose. Your husband is only going to get worse and that’s the harsh reality. You will be stuck at home 24/7 dealing with everything and social services will happily leave you to get on with it. Please consider what your life is going to look like as your husband could live for a long time with this awful disease given his current age. To be honest if he’s taking about going to Dignitas and has the funds I’d be looking at whether this is possible. If I had this life changing diagnosis it’s what I’d want.

 

[kindred]

All my sympathy. I have been through appalling times too.
Please contact social services asap
Don’t retire yet
Tell ss you can no longer look after him, you are in danger and broken.
Aim for a care home place.
Please be strong. You can escape this but you will need to assert your position and how you can no longer do this.
Warmest, Kindred

 

[KElizabeth]

Words don’t cover it. No one should have to live like you describe. The work dilemma is tough. Work is both a blessing for our sanity but a curse when you’re physically exhausted. It shouldn’t have to be your only source of normality but I share that feeling.
You need help with your husband.
I hope you have a good GP, they can help and get the ball rolling. Take care

 

[Peelgirl76]

Thank you all so much for taking the time to reply. Several of you suggest cancelling my retirement plans, but they are well in place and I finish at the end of March. It really is impossible for me to work with him around me. I’ll get a small pension and lump sum (but nothing like my current salary) and won’t qualify for Carers Allowance. Husband has private pension, state pension and PIP, so there is money available for care. Both he and I have had SS assessments, they say I’m entitled to 6 weeks subsidised respite care a year, even though we’re over the savings limit. I was so relieved but…. the problem is not the money, it’s that he point blank refuses to accept going into respite to give me a break (he says I’m sending him away to the ‘funny farm‘) - and SS say they can’t and won’t force him, which I do completely understand. He‘s the same with my attempts at daycare, he just doesn’t see why he requires it and has zero insight into my needs. I can’t be the only sole carer in this position, but how do you persuade your spouse with dementia to accept outside care?

 

[sapphire turner]

I managed to get my husband to agree to two mornings care by agreeing to book another holiday abroad with him, which I really didn’t want to do. So far the deal is holding. Everything is a cruel deal between us but so far keeping me relatively sane 😹

 

[lollyc]

I'll be honest, I didn't discuss the groups etc. with Mum at all (having learned early on that the answer would always be no) . We simply got in the car and went. Once there I said she could only say she didn't like it once she had tried it - something she always used with us as children! Men in Sheds is not a dementia group, and some here have had a lot of success with that. Perhaps there is one in your are?. All I can say is try, try, try again. At some point your husband will have to accept care from others, whether he , or you, like it or not. Keeping up some sort of social contact may make that transition slightly easier.