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.

Like a lot of people I wasn’t able to be with a parent with dementia throughout Covid. Missing that close contact for 15-16 months was awful. But she (my mum) was oblivious to the passing time. When I finally got to spend time with her she acted no differently to if I’d seen her the day before.

She was diagnosed summer 2018, went into care that Christmas and eventually died this May. The decline was frightening but unpredictable and right up to a month or so before there was no way of knowing if she’d last another six months, twelve, two years. That not knowing is torture. You don’t know whether you’re looking at two years or ten.

One thing I will say regarding the OP is you should feel no guilt about wanting this to be over. Looking back, if my mum could have just died in her sleep or from a stroke in 2018 I would take it like a shot.

She was well cared for, I can’t speak highly enough of her carers. But there were precious few happy moments and most of it was grim or worse. Seeing her distressed, crying out for her mother, asking me over and over ‘Where’s John? Where’s your father?’ when he’d died in 2010 and then accusing me of keeping it secret from her. Just awful.

Don’t feel bad about wanting it to be over. It’s completely understandable.

You are not evil, people that have never had to deal with dementia close up have zero idea.

With so many other illnesses and conditions there are treatments and ways of managing symptoms - there's hope. With dementia there's nothing other than enduring it until death.

I hear you OP. I've been there.

we have recently reluctantly put mum into a home. She is doubly incontinent struggling to walk and cannot remember things from 5 minutes to the next. This is from a diagnosis of dementia just 18 months ago
Previous to this we had carers coming in gradually increasing it to 20 hours out if 24
Whilst they were great carers and did everything they could for mum they were not dementia experienced she began having lots of falls and toileting accidents we still had to organise medication food shopping drs hospital district nurse visits etc
Now she is in a care home that specialises in dementia and whilst we hated putting her in there she always said never put me in a home the pressure is off us and she is well cared for and safe and well looked after by people who know what they are doing and everything is now organised for us.
We visit her frequently hard at first as she was crying asking to go home etc but 3 weeks on and she has forgotten and not asking any more she still calls out and cries as she gets tired into late afternoon about anything and everything has been doing this for a while but they calm and re assure her All the staff there seem lovely
We had her down at first for one of these all singing all dancing new ones posh ones waited 3 months then when they assessed her they wouldnt take her !! Guessing she was too far gone shocking really shame on them
This one isnt as posh bit older bit tattier but all the patients seem clean and well cared for and the staff seem to genuinely care
I do think in many ways it's the best thing we could have done for her she needs so much care now

she is also struggling to speak her speech is very unclear a bit like she has had a stroke though she hasnt
Dementia is truly awful and I struggle to see when it gets to the later stages what quality of life they are getting

I think a lot of people are horrified with the idea of putting someone they love into a nursing home and many people are adamant that they will never do it - that is until they actually experience trying to care for that person 24/7 and the inevitable deterioration.

Many people's homes are just not suitable, and even with stair lifts etc. the chances of them falling or injuring themselves is strong, plus caring for them (even with carers coming in) is beyond a full time job, it's overwhelming.

We are currently being assessed for funding, and I will be sad but also relieved when my dad goes into a care home, because I know it's the best place to care for his needs.

exactly armageddon we experienced extreme worry and stress with mum especially as she began to deteriorate. In hindsight I think maybe she would have been better off in many ways going into a home sooner than she did
Not going to lie it's a hard decision bit when they get to the point of needing virtually 24 hour care what do you do? My sister and ai both work my sister is also a single parent to a 4 year old we need to work as we have mortgage to pay
I do feel guilty but the relief she is finally safe and cared for and with no issues so far nothing seems overwhelming dementia care homes have seen it all before nothing seems to phase them and they are well equipped to care for dementia patients They also have all the equipment etc needed
it's a relief not to have to keep looking at my phone with messages from carers detailing what has happened now which is what happened when she was at home she fell she had toileting accidents she tried to turn oven on she tried to open front door back door she banged on the windows at times she kept taking herself to bed was up half the night etc etc this was all over 18 months and very stressful indeed

My DM is caring for DF she rejects everything we try to arrange in the way of help as "he won't like it" or "I'm not paying a penny" we are all at a loss what to do, we have tried so hard and relationships are breaking down from the stress we are all under. DM has no concept of anything outside of caring for DF we are all doing our best but DM herself is unaware how demanding and difficult she is becoming. I dread speaking to her now, we used to have a good relationship but now all she talks about is DF, his care, Dr's etc I don't think she even knows if any of us are ok or not as she never asks. Currently I am leaving her too it after being yelled at yesterday's when I was calmly trying to explain SIL will of course make the calls DM asked her to do but she needs to understand we can't always do things immediately as we have jobs etc. DH is becoming angry about the situation as I have a Chronic Health problem that is being affected by the stress, I cant relax, jump everytime my phone goes off and he says he can tell when I've spoke to DM as my whole demeanour changes.

I honestly don't know how long any of us can continue like this, everyone has pulled together to try and help, but DM now won't even walk to a post box to post a letter because she won't leave DF. He should be in a home, he is deteriorating fast,.we are not coping any more but she will not give in as she says she will not let the government take everything they have worked for.

I am not sure we do disagree. Should our mothers be allowed to die a comfortable death with dignity? Absolutely. My point is we should care for them properly until they reach that point and fund palliative services to ensure that happens. We should ensure health and social care staff recognise and react to symptoms of distress and mitigate them properly. Unrelieved pain has a lot to answer for.

We cannot begin a societal descent into murdering/mercy killing people who we think aren’t benefitting from life. That is both illegal and immoral. What we can do is avoid prolonging our own life beyond a point we would wish to live by ensuring we each have an advanced directive. I’m guessing all those who believe some lives are unbearable already have theirs in place?

I do think it varies.

My dad had vascular dementia and was pretty calm and happy, smiley even.

He held a tambourine and bashed against his leg, swaying to music and grinned. He went downhill of course and wasn't able to engage like that towards the end but I think he was generally OK - and luckily didn't have lucid moments where he could understand what was happening to him.

It was distressing to see him degrade into a shell of his former self.

I met a dementia specialist once (in Waitrose of all places) who told me that research showed that even near-death dementia sufferers' brain waves recognised the voices of their loved ones. So it may well be that even near the end they can hear and recognise our voices and that must bring them some peace. I hope.

@Supersimkin2 You say adults who have prolonged contact with DS have a 50 per cent chance of mental breakdown. I assume you are using DS dementia sufferers. I

I’m really not sure where your statistics come from. The Oxford/Alzheimer’s society is the most oft quoted but doesn’t have that statistic.

I also know plenty of children visit grandparents with dementia. It’s a parental choice, of course, but some care home actually have pre-school and primary school children come on visits and some have toddlers running up and down the corridors or playing with a train set whilst Granny ‘does the washing up’.

Toddlers get on very well with dementia, but schoolchildren get confused and anxious fast - how do you explain that trying to
hit someone is wrong for children and adults but not wrong for Granny?

Of course GC see their DS GPs, as is right and natural; to the early/moderate stages of the disease. Then ‘something happens’ one day and the benefits are lost, the visits stopped.

We all have a duty to tell the truth about how DS can behave and the devastation to them and their families. It might be embarrassing, it might sound like you’re being rude or even that there’s a MH stigma at play - but lying or ignoring the symptoms won’t fix them.

Sugarcoating this most evil of diseases is wrong and cruel.

I mean, the last time I visited my mum she was stripping off constantly, crawling on around the floor - naked - whilst
we tried to get a dressing gown on her … when I had to hand over into care she was throwing suitcases at me and calling me a c**t . In hospital two people had to hold her back before she went for me . I’m being treated for PTSD after caring for her at home .

Yes you get moments with adults with dementia where it’s all photos of granny and what we did in the war etc … but that’s not the reality for everyone, not at all . My younger sister will never be seeing her mum again, and I’m also being advised to limit visits as far as possible . I’m a grown adult .

It’s an incredibly unpleasant disease, I wouldn’t wish it on anyone .

@tomissmymum I understand, my dad although not the kindest man before vascular dementia kicked in never swore and never raised a hand to anyone. In the last few months he's started swearing and he has gone to hit DM on a couple occasions and a few.weeks ago lifted his heavy wooden walking stick to hit me, I told him to not even think about it and he put the stick down. No one really has a clue what this disease is like until they witness it first hand. It's unpredictable and cruel.

my sister who has a 4 year old is facing this dilemma do we let her see nanny when she doesnt fully understand it's very difficult

As you say, you can see behaviour you just would not think possible from the person you know. At the start of my mum’s illness, before she went into care, I was struggling to manage her daily medication. She had a drawer full of prescription drugs which she took or didn’t take as and when the mood took her. Various social/health service visitors noted this and I was asked to try to manage it.

She absolutely hated this. I cleared out the drawer and started giving her the correct medication as prescribed but she’d go to the drawer to find it empty and go berserk, up to and including kicking and hitting me. A bit ridiculous to think of a 5’2” 84-year-old woman hitting a six foot adult male but even if I wasn’t in any physical danger it was awful to see what the disease was doing to her and the rage that she was capable of.

In the moment you just get on with it and, thank God, we were able to get her into care relatively quickly, so the nightmare only lasted four months. Most people aren’t so lucky.

@hamburg123 I honestly don't know what I would have done if I had been hit with the walking stick, I'm not sure he'd be able to do much damage to me because he just doesn't have the strength now especially as he broke his collarbone a few months ago. But although he barely speaks now you can see the rage build in him when you haven't done something he demands. He went through a phase when he was able to speak more of telling anyone who would listen that I hate him. The reason behind d that was because he wants me to take him out in my car but I cant do it because his wheelchair won't fit in it, to make it fit I'd have to put the seats down in the boot (it may still not fit) which would mean DM couldn't come with us and I can't move him from car to chair alone, therefore, I hate him.

OP, my heart goes out to you. Some of what you have written has really resonated and I feel I could have written it myself.
Just back from seeing my dad. Has been in his care home now for only a few weeks. He's deteriorated massively in that time today the shock of seeing him so much worse has left me reeling and unable to stop crying. I feel like you do when someone close dies, the all consuming grief. I almost didn't feel safe driving home as my head was spinning so much.
Dementia is so cruel and evil, a death before death. And like you, I do wish for his physical death as it will be a relief to him from the hell that his mind has descended into.

So it took my Mum at the weekend

@maeveiscurious May she be at peace. Go easy on yourself. x

@Dinoteeth I'm okay , the last year has been so sad. We are trying to remember the vibrant woman she was.

It's definitely important to remember the lady she was.
I remember feeling when my Gran died that really her spirit/soul had died 2/3 years before her body.

Sorry about your mum, @maeveiscurious. I know you'll have wanted her real vibrant self back all this time.

@maeveiscurious I'm so sorry to read this. May her memory be a blessing. Sending thoughts.

@maeveiscurious I'm so sorry, it really is so bloody cruel 💔

💕 thank you, this last week has been horrendous.