Fucking dementia

[MegGriffinshat]

I hate seeing my dad waste away.

This time two years ago he was totally normal. Living alone, driving. Nothing wrong.

Today he’s in a care home, confused, talks a lot of shit but mostly just sits staring ahead.

It all came on so suddenly. April last year he started hallucinating and by december he had to live in a home.

He’s not living, he’s existing. He saw his much loved SIL gi through this, he begged me to tell me to kill himself if it started happening to him. It came on so fast he didn’t even know to do that.

Why do we let people exist like this? He’s had moments of clarity over the last year where he’s begged to be euthanised or for them to let him end his life. Their solution was to put him on antidepressants.

I hate this. I really hate it. I’m an only child, my mother died when I was a kid. There’s no other family. My husband does what he can but ultimately, it’s all down to me. Getting him help was horrendous. Selling his home has almost finished me off, there’s been so many problems. He had me later in life, everyone expects me to be in my 60s with grown children, but i’m 42 with a toddler and other young children.

It would have been so much easier if he had just died one day. At least that’s final and I wouldn’t have to watch this horrific, slow torture until he dies.

Every time the home calls for some reason, I pray that they will tell me he passed away in his sleep.

My friend said I was evil for wishing him dead. But he’s not living. He hates this. He doesn’t deserve this living hell.

Im sorry i am just so upset today. He was here today just staring and talking gibberish. That isn’t my dad anymore.

He can’t top fees up with his pension, they can only be topped up by friends/family or a charity, I meant that his pension is classed as income and is taken into consideration when the council calculate his personal budget for a care home.

If he wants to live somewhere more expensive than his personal budget, unfortunately someone needs to top up for the fees for him.

I’d perhaps speak to a charity to see if someone will advocate for you, it’s a lot to deal with.

Also - Ive not been told anything about personal budget. Just that the home charge more than the LA will pay so it will need to be topped up. When I’ve asked the care home, they just keep saying “well. someone will need to top it up”. There is no one but me and I can’t!

When I spoke to SS they said the same and that his pension couldn’t be used, not that it would be enough anyway.

But they said there aren’t enough funded places. So what does he do? I can’t pay anything towards his care, I’m sure few people could afford £1,600 a month out of their own pocket to top up a relatives fees - that’s more than I earn! All the care homes here seem to be £1300 a week.

I feel like I am banging my head against a brick wall.

Will contact some of the charities mentioned, no one seems to want to give me a straight answer.

He doesn’t care where he is.

So it’s not a case of wanting to stay somewhere more expensive. When I called round all the homes here, they all charged £1,300 a week.

Wow I'd not heard this statistic but I don't doubt it.

I get really upset myself visiting my dad in hospital. It's as discussed above - he's there but not-there, apart from little flashes. It's distressing to see the speed of decline, struggling to eat and heading into incontinence. He finds being cleaned very distressing, we're told and I'm upset to think of him being so scared.

It's affected my mental health a lot. I feel like I'm almost shutting him out of my head, because if I think about him for too long I just end up crying.

He's physically quite healthy apart from the dementia and it's scary to contemplate how long this awful limbo will go on for him 😥 .

I’m so sorry. It’s so hard. And I am so sorry she is so young as well.

My dad is so angry at me all the time. “You said you’d never put me in a home and you’ve dumped me here” is what I get.

Unfortunately, we have no other family. He has no friends. So it’s just me and my husband to visit him.

@Kevinyoutwat my dad has deteriorated in the last couple weeks and my mum reached crisis point on boxing day she just can't cope anymore either. I called our social prescriber and she came out and did an assessment and said the crisis team would call a week later we've heard nothing except a call I had from a physio because they were concerned my dad would fall as he was waving his walking stick at us as a threat. I don't know if it's useful to you (but worth a try) we have been told his wandering, aggression and inability to swallow may now mean we can get care/care home for free. I've also been researching continuing health care grant (might be the same funds) and seems that may be a route we can go down. If I find anything more useful I'll report back on here.

Since my dad has been in hospital with Pneumonia he's deteriorated further. He is now shadowing, we have to look things up as they happen. My poor DM literally cannot move for him he follows her everywhere and tries to control what she's doing. DM had a meltdown on boxing day, rang each family member crying and saying she can't take anymore and was going for a walk. DF decided to search for her, went to a neighbours house and demanded to see DM when they said she wasn't there, he walked past and searched the neighbours house.

He was furious that I was taking DM out for coffee and some respite, he wanted to come and we both said no. He wanted to just sit in my car and wait and I said no, besides my car not being practical for 2 passengers I could not risk him getting out and looking for us, risking his safety and my car being left unsecured, plus that's not really a break from him DM needs.

He blocked the doorway to try and stop DM leaving, using his body and waving his stick. He was once again nasty to me, saying I won't do anything for him, I always have excuses and that I don't matter to him. I let it go and took DM out the whole time she worried what he would do as retali6for her going out.

I then witnessed the shadowing for myself, he paced up and down, demanded she sit with him, kept saying "you can go now" to me and lean towards me to try and intimidate me, I was shaking but stood my ground and said no I'm staying with DM, what do I do though, if he does hit me? I don't think it will be long before one of us gets hurt! It's now a week since we were promised a call within 48 hours from the crisis team after we told our social prescriber that he's now wandering and being aggressive! She even said the felt threatened by him!

Im so sorry. I found social care useless.

He was never assessed by anyone until I had to get him into a home, they just didn’t care as he had his own money. It was impossible to get help or I think he could have stayed in his own home with care. no one would help me, I was totally alone in it all. The only thing social workers did was tell me how awful I was, how I should want to help my own father.

My dad doesn’t meet the criteria for chc.

He has no other health needs apart from demetia. He can’t wander as he’s in the care home and he’s only ever angry at me. He never shows any aggression in the care home unless he’s trying to make it all look worse so I will take him home (the pulling down of the xmas tree, he was shouting at me that he gave up overtime every Christmas so I wouldn’t be alone and look what i’ve done to him now). He’s always been very manipulative towards me - I’ve never had a life since I was a child, my mum died when I was small and he’s wanted to be the centre of my life ever since, he’s made my life hell, I’ve never had one really because of him. He used to pretend he was ill, threaten suicide etc to stop me moving or working.

He can swallow, he’s perfectly healthy in every way other than his mind and arthritis in his knees.

There are companies who go though it all with you to see if they can help get it. I’ve spoken to them.There’s not a chance at the moment as he has no real health needs.

My dad first ended up in a care home through respite care after a hospital stay, FWIW.

He was staying with me after he deteriorated quite fast and I had no choice but to call an ambulance one day, he was hallucinating and refusing to drink. GP didn’t care, ss didn’t care. GP actually told me to lock him in a room or to call an ambulance but to get off the phone because what did I expect them to do.

Hosptial didn’t care either but I refused to collect him so they had to find a respite place and then SS had to assess. Not that they were any good even then, they just kept telling me I should want to look after him. One told me it was my duty as his daughter.

But then he was in and I found a permanent place after he was abused in the home he was sent to from the hospital by SS.

Its been a living hell.

@Kevinyoutwat it seems that we are promised so much and they deliver so little. I asked for respite I said my mum needed it, I had a call from SS saying DF was being discharged from hospital or he could go over to another hospital while we waited for the care package. I said we need him to have a care package, my DM needs respite can you take him to the other hospital until everything is sorted. I could tell that was not what SS wanted to hear. By the time I had driven to DM they had rung her and pressured her into having him home. Since then everything has got worse. We didn't have a care package for days after he came out until SS were told I was unhappy and would be calling suddenly within an hour a carer turned up. We should not have to fight for help and spend every waking moment chasing people on top of the care we are giving but it seems we have no choice.

It’s just terrible isn’t it.

The pressure they put on me to pick him up from hospital almost broke me. I said that I was refusing as my baby wasn’t safe with him staying with me.

They actually said they could call children’s services and get a foster placement for my baby if I liked, then I could have my father home! I was bloody speechless, adult social care were pressuring me to put my father above my child just to get him off their backs!

I was told it was people like me who were causing hospitals to be in crisis, that people would die because of my actions. I tried to complain but it was their word against mine, they denied they had ever said any of it even though I had the calls recorded - they told me they would prosecute me for that if I tried to take it further.

He was living alone 3 hours away at the time, we were waiting for his house sale to go through near me when he was admitted to hospital. He went down hill so fast in respite care that he never moved in.

What I should have done was sent him home 3 hours away and let it get to crisis point so SS there would have had to assess at some point. But everyone kept telling me he was fine, even when he was hall hallucinating in front of them, telling them they were aliens. But I was afraid he would kill someone in his car - he was still driving - and guess who everyone blamed and said should stop him from driving? Yup, me again. I was told if he killer someone it would be my fault for not stopping him drive. DVLA didn’t care, just sent him letters asking for medical proof that he couldn’t drive - he was putting all letters in the bin at that point, useless. Police don’t get involved either, if I had gone up there and hid his keys, he would have called the dealership and got new ones fitted.

I can’t tell you what these last two years have done to me, being blamed for everything, no one wanting to help.

I hope you get some help soon. If he goes into hospital again, stay strong. I’m so sorry you are going through this too.

Thats part of the passive guilt I have.

I should have just stopped the house sale, left him in his own home (he was in an over 55s flat he bought, which had a warden and pull alarms but the warden was worse than useless. My dad would phone me, hallucinating, saying that there were people in his flat, the warden would go round and then call me saying he was fine, chatting about his day etc. They would call me saying they had seen him driving erratically- I was three hours away, I used to say what would you like me to do? They would say “keep an eye out” - from three hours away?!

I should have let something awful happen so SA would have had to step in. But then, I was told I would be blamed if he had a car accident because I should stop him driving - how on earth do you do that? I was told to lie and say his car was broken - he would have got it fixed or bought another! I was 3 hours away with a baby to look after.

I thought it would be easier moving him near us, but the house sale dragged on for ten months and by the time he got here, it wasn’t safe. SS wouldn’t help, we tried to pay for a live in 24 hour carer but no care company assess would assess him in the respite care home, had to be in his own home, but he couldn’t live alone in his new home to be assessed, he lasted 12 hours as he didn’t know where he was, didn’t remember that he’d moved - it was a huge fucking mess. No one would help me.

massive, not passive.

And sorry for the rant. I’m just so fed up of being told it was all my fault. No one will help!

Dementia u.k. were no help either. Or age. Or any of the other places you are told to call, I kept being told conflicting things by everyone.

@Kevinyoutwat I had same with the DVLA. I had last been in a car with him in 2017 it was terrifying! My DM had started to refuse to go out in a car with him as she said it was dangerous. Because my DF is basically a bully she was scared to tell the DVLA so I did anonymously and all they did was write to DF ans he signed a form saying he was safe to drive and they accepted it! Luckily he got to fragile to drive but was obsessed with it, he kept trying together me to go in a car with him and I said no.

I contacted the DVLA at least 5 times even after the dementia diagnosis in the summer. In the end i wrote to them and said stop sending letters to a man with dementia whos not telling the truth! They then wrote to him saying they were writing to his Dr who said hes not fit to drive and took the licence. This was after we had begged the Dr to please get the licence removed and they said it wasnt their place!

DF only last week demanded we set up the new computer with word so he can write a letter if complaint to Dr and have his licence reinstated.

We literally have had to battle for months to stop him driving and that included taking his keys. It makes me so angry that everything is put on the families like we are responsible for what the dementia sufferers do! We need authorities to support us and listen! We can't do things on our own.

SS just seem to have an out of sight out of mind attitude. What was said to you is absolutely disgusting!! Personally I would not have let that go and complained, but I get it with everything your having to deal with you don't need to be busy making complaints as well.

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And yet, if you were to post in chat saying your parent was dangerous to drive, you get told “tell the DVLA! Get their license taken off them!” people have no fucking clue how it works, do they?

Its the same people who tell you to make them see their GP - IME, GPs don’t do anything either.

My dad would never have got his licence taken because he had never been. diagnosed with anything. He wouldn’t see a dr, said he was fine. Even when he wasn’t and I was begging, in hospital, the hospital social worker said he was perfectly since when he was hallucinating and talking utter bollocks.

He still wants to drive, still has plans for the new car he’s going to buy. That was another reason he couldn’t have lived at home with carers - he wouldn’t have understood why he couldn’t get in a car and drive, it would have been distressing for eveyone.

I took the complaint as far as I could but it was useless. no one cares about anything.

It’s all on the family and it’s soul destroying.

@Kevinyoutwat I absolutely agree with you. People have no bloody clue, we tried to do things in a reasonable and respectful way first after all they may have demen but they are still people with feelings. That just didn't work which is why I contacted the DVLA and then intended to deny all knowledge when his licence was taken. I thought it was that easy and it certificate isn't! My DF is observation with driving, I wouldn't even be happy about him leaving the house alone let alone getting in a car and driving.

I honestly naeively thought there would be plenty of help. There just isn't. GP now is a bit more forthcoming with help but that is after harassing them and they finally came out and saw how bad my DF is. SS no help whatsoever, months fir assessments because they were concerning he would fall down stairs etc ans said we needed rails, that was July, we got the assessment in December, OT made suggestions of equipment we needed first time he was in hospital, he was sent home with nothing.. the list goes on.

Its exhausting, I live 2 hours away from parents, have a serious illness and I am having to battle on their behalf daily. Its affecting my mental and physical health and my marriage as DH is frustrated and upset watching me struggle, but what can I do? I have no choice but to try and keep going until someone listens and actually acts rather then just make empty promises

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@Kevinyoutwat we have had an awful couple of days with DF. SS came out and were initially offering someone to come and sit with him for 2 to 3 hours a day, that would have been great if he would accept it. While SS were with us DF went nuts, pacing, making threats, waving his stick, abusing myself and DM, racist comments at the social worker. I was actually frightened. The social worker though was fabulous! He agreed DM needs respite, he asked that myself and DM to not be alone with DF as the anger and violence is aimed at us, DF believes we are plotting against him! His rage carried on for about 5 hours, long after the social worker had gone and being sworn at, threatened and berated for that long is horrendous. Other family members were there and it was decided I should take DM away from the situation and they would stay with DF so I took her home with me for the night. Social worker called me and tole me they are aiming for Monday or Tuesday to take DF to respite, I trust this one, he's kept in contact, updated me and he genuinely cares.

Hi, I am so sorry that sounds horrendous for all of you. But I am glad you are finally getting help.

Don’t be afraid to chase them up - one thing I found is they promise you the world then go on holiday/sick/someone else randomly get assigned and you get forgotten about. Keep on top of them but I really hope this will get him the help he needs.

@Kevinyoutwat OK will do, we did have this social workers manager booked to visit, but her son became ill so he attended instead. He said the crisis team will call as well but I've heard that before and nothing came of it. He rang me yesterday so I now have his mobile number rather then then just the social services number so if we don't hear anything by Monday pm I'll chase it. I did make him aware DF held a lighter in my face deliberately on Friday after he left and he's added that too the notes

Reading all your experiences brings tears to my eyes, I’m so sorry to everyone here going through this trauma. Dementia really is a horrendous thing to go through and I don’t think anyone really understands the trauma it causes until it happens to your own family. My mum was diagnosed with Alzheimer’s 6 years ago in her late 60’s (but probably had it for a good few years before that). A year ago she very quickly got much worse, and I feel like the year we have had dealing with her (and all the services that are supposed to help) has left me with ptsd to be honest. She started getting super distressed multiple times a day and would run away from home, my dad, anything and everything. Really she was trying to run from her mind as she knew she wasn’t right and she was so frightened. Seeing her go through so much distress and not being able to do anything has been absolutely heartbreaking. Her GP, social services and the community mental health team were really really awful, too many instances of neglectful care to go into here but I was astounded and appalled that services could be that dire.

After multiple near miss events from her running away, and police repeatedly needing to be called, she eventually got taken to a&e and was sectioned. This feels horrible but is something I would urge family members to consider if they feel their loved one is a danger to themselves or to others. The care once she was sectioned was really great, she finally got her medication sorted out, and she became more at peace. When they are sectioned it is under section 2, and they can be held for up to 28 days. If they need to stay longer (which when sectioned for dementia they generally do) they are then held under section 3. This then means they are entitled to full funding for any care needs relating to the reason for their section ie. dementia, and will be life long. I strongly believe social services try to avoid sectioning at all costs, as they would rather the individual/ family have to pay. But if someone is a risk to self or others this is actually what should be happening, so the sufferer can get appropriate specialist support and healthcare. So push for this if you’re think it’s relevant to your loved one, look into it and go armed with the facts as you definitely need it when you’re up against social services!

Mum is now out and in a nursing home. She is calm and settled, but her condition has declined rapidly- doubly incontinent, doesn’t recognise me, doesn’t really talk much and if she does it doesn’t really make sense. I feel like the grief of losing her is now settling in, where as before I felt in a state of panic, fire fighting and trying to get her help and support. Now I just feel trapped in a grief cycle that doesn’t resolve, only worsens as her condition does. She is gone but still here. Every visit is devastatingly sad, but I keep going and showing my love for her, in the hope she senses it even though she doesn’t know me anymore.

I feel really alone with it all, my dad needs a lot of emotional support from me in his grief, my sibling lives far away and is basically useless. So I deal with the grief of having lost my mum quietly and on my own. Reading these posts has made me realise there’s quite a few of us in the same (rather unstable and precarious!) boat. Solidarity with you all and I wish you strength in dealing with this awful disease.

I’m so sorry for what you’ve been though. People don’t understand how it ruins your mental health

I begged for my father to be sectioned when he was admitted to A&E. He was hallucinating, speaking to people who weren’t there, getting violent with staff.

A&E staff said he would probably be sectioned.

The duty social worker came to see him and all
she cared about was finding out if he had over 23k in savings. I knew what the game was. They didn’t want to have to fund him when he could sell his home and fund himself.

He was a homeowner with no dependents. He wasn’t sectioned.

The next morning, they told me he was fine and to come and get him. He thought he was on a cruise ship and covered head to toe in his own shit - they wouldn’t even clean him up and he didn’t care or know. They let him walk out with me in the freezing cold covered in a thin sheet holding a bag of his shit covered clothes, phone and wallet.

He couldn’t climb into my bath to use the shower (or bath) due to arthritis and I couldn’t take him on public transport 3 hours away to his own home, covered in shit and ranting.

I had to book a hotel room to get him into a shower cubicle and hose him down myself.

When he ended up in hospital again a week later, that’s when I refused to collect him and they had to keep him there and find a respite place. He was still left covered in shit for days as no one would help him wash (we weren’t allowed to visit due to a covid outbreak).

No one cares, do they?

I get infuriated when you read threads where people are concerned their neighbours have dementia and everyone says “call adult social
care” like anyone will do anything!

Even when they are in a care home, it’s still all
about their money. It’s all anyone cares about.

OP - you are not evil and I am in a very similar position... in the last 6 months, I've seen both my in laws go from living independently, to a massive decline (for different/overlapping reasons), requiring urgent full time care, and then pass away.
My own DF has a very restrictive degenerative disability, recent illnesses, and now some dementia and watching him just 'exist' is breaking us.
I'm close in age to you too - DH is a lot older than me.
Anyway, I know exactly what you mean and been thinking the same thoughts as you all the time in recent months.
You're not alone xxx

Hi @chronictonic (this is OP by the way, I had to re register).

I’m sorry you are going through the same.

My dad seems to have been on an even keel for the last 6 months. This feels like it’s going to go on forever to me.He’s 87 but both his parents made 100. Even another 5 years of this will kill me I’m sure.

Which makes me feel shit, I should be glad that he’s been ok, right? He can walk again now without relying so much on a wheelchair (with a frame). And it just makes me feel so shit that I see that as a setback.

Selfishly, I cant see how I will live a life until
this is over. It dominates everything.

I have been told to refuse to take them home when and if there is an issue as the minute you do you are back to square 1 again sounds harsh but you need to say you cant care for them and thus cant come home and repeat
totally agree it's all about the money as well

The treatment you and your dad received is absolutely appalling, complete dereliction of duty from adult social care! He 100% should have been sectioned at that stage, I find it incredible and infuriating that they can get away with treating sufferers and their family members that way. I’m so sorry. The whole thing is horrendous and so very difficult isn’t it, and the behaviour of those supposedly there to help just seems to make it 100 times worse.