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A day full of emotions. Walking my mum out her front door for the last time, effectively lying saying she’s going to a hospital for some rehab, whereas I was placing her in a care home. Her Alzheimer’s has progressed to the point that she can no longer safely stay at home, I know this. Having to invoke power of attorney was necessary, doctors assessments, struggles to get social work to move at pace, they ultimately did thankfully but given funding and staff challenges, the care provision allocated and delivered were miles apart, 4 visits per day yet only 2 delivered, and lacked consistency, a care home was the only option.
After dropping mum off and settling her in, I nipped back to her house, eerily quiet and empty like she is no longer with us. The day has been so much tougher than I thought it was going to be and I knew it was going to be tough. I feel like we’re in some kind of limbo, plus guilty and very tired. Think I’ll get out on the bike this weekend for a wee pedal to clear my head.
You have done the right thing - don’t think anything else. Life can be full of hard decisions and you had to make one.
I came here to say that ^^
I feel for you, but she is safe now.
Hope all is ok with you.
We had to remove MIL with aphasia from alcohol dependant 60 yr old son (lived at home for ever). OH still worries whether it was the right decision.
Heart wrenching. Did the same 6 years ago but she actually came again but a year later back in for last time.
Nothing prepares you for this. I have mates going through it now.
Agreed - It's a ****ing awful feeling; my brother had to do almost exactly the same while I was away on holiday a couple of years ago, after my mum attacked the live-in carer. She's better off there by miles but it still breaks me when I visit.
Did very similar for my mum. She hated the care home as she had been so independent and outdoorsey all her (long) life. But it was the only viable option. I can empathise with you op. Respect for making such a difficult call. I think you'll come to terms with it over time. But it isn't easy, for sure.
This is a timely thread for me. Just been speaking with my Dad who finally had a home visit from the memory clinic consultant and a psychologist for my Mum last week...
They confirmed that Yes it is vascular dementia and there is little they can do now. The trouble is this discussion should have happened about 20 odd months ago when My Dad first sought help and was referred to them, but it was mid-covid, she was 'cognitively functional' with short term memory issues only (at the time), had my Dad for support Oh and the local trust didn't have a consultant in post.
So my Dad struggled on for a year with her, things progressing, Him becoming more worn down and anxious, and then on the weekend of the coronation Mum had a **** off great stroke.
Talking with him tonight things are hitting a plateau it seems, she's finally getting more therapist attention, but it seems unlikely she'll ever regain her speech now (we do get the odd word) or full use of her right arm/leg. She hates the 4x daily visits from agency carers, she's frustrated by the simple tasks she can no longer do, you can see her mood going downhill and nobody can quite tell if her lack of any further response to physio and speech therapy is because she's depressed or because the dementia is progressing (which it will), or a bit of both...
I think a decision like you've just had to make OP is close for my Dad, and he really doesn't want to put her in a care home. It's where her own Mum basically went to die under very similar circumstances, hence she's basically living her biggest fear, trapped in an uncooperative body, with a failing memory unable to communicate having been a quick-witted chatterbox for 70 years.
My Dad is desperate for this not to be the case, he's turned their home upside down so he could bring her home from the stroke ward. But I think she'll have to go into residential care eventually and that's going to break his heart too, they've barely been apart for 50 years.
Sorry for the hijack and rambling diatribe. I hope your Mum is getting the care she needs OP and I appreciate just how hard doing the right thing, that maybe doesn't feel right at the time, can be.
It’s never an easy decision, but it is the correct one. It gives your mum the care and support that she needs, something is not achievable outside of those settings. My wife’s gran has positively thrived since going in a home. Visits are better and as family we know she’s safe
Be sad for the fact that’s she’s ill and basically dying slowly.
Don’t be sad for the fact that you’re arranging the best possible treatment for her in the circumstances.
Sometimes there isn't a right decision to be made, sometimes there isn't a correct solution, sometimes all we can do is pick the least worst option. When a thing cannot be fixed we have to learn to live with it being broken, with both the sadness that it is broken and the helplessness of not being able to fix it.
First picture is my mum in April. She lived at home with my elderly stepdad.
They had carers when they weren’t too stubborn to let them in. Mum lived in filth and ate whatever rubbish came out of the microwave.<br />Then she got poorly and had to go into hospital. <br />We all agreed she couldn’t go home.
Fast forward to September , mum in a care home, well fed ,clean and buzzing because Elvis had kissed her hand. We can’t believe how much she has bounced back.
She would be dead now if she had stayed at home.
When she first went into the home she was totally incapable. We arrived one day and there was a Do Not Disturb sign on the door as it transpired they were feeding her.
We could hear the Irish lady feeding her singing lovely tunes to my mum as she fed her. She didn’t need to she was just a brilliant person making my mums life a whole lot better.<br /><br />
Be sad for the fact that’s she’s ill and basically dying slowly.
Don’t be sad for the fact that you’re arranging the best possible treatment for her in the circumstances.
Beautifully put.
My parents are adamant they aren't going into a home butbthere may come a time that it's the best/least worst option.
Zippykona's post is beautiful, suddenly dusty in here.
I feel for you and everyone else. We're heading that way with my Mam. Doing everything we can to keep her safe at home (though largely my brother as he's very near to her and I'm very far).
She's so worried we're going 'to put her in a home' she get quite upset when we're just talking about things were trying to put in place to keep her in her own home. No paid for carers yet, just a cleaner, but it might not be long as my brother and family are obviously struggling, and they're struggling to accept additional help.
Very hard for me too being so far away too (6 hour drive) as I often feel they think we're critical as we for down for a few days and notice things more. Life eh?
It’s never an easy decision, but it is the correct one.
Theres a moment where you realise you're pushing in the wrong direction - theres all sorts of steps you can take help people maintain their independence for as long as possible and then theres a sudden realisation you have to change tack and work towards the thing you've been trying to stave off. You're doing the right thing and you've been doing the right thing. One is not a failure of the other.
Think of it as a new chapter though. I've learned two very valuable things during my mum's journey with dementia - one was from Wendy Mitchels book (who was remarkably able to write about the experience of dementia whilst having dementia) which was about the distinction between memories and feelings in terms of whats lost to dementia. Information about people, places, things is being lost - but not the feelings about them. So how someone feels about you (familiar, friendly, secure) doesn't change even if the information about you (name, relationship) fades so I can still have valuable time with my mum knowing that.
The other was a sort of throw away comment from my brother - 'New Mum' - he doesnt look at her and think about what has gone, every time he visits her he expects to meet someone different. 'Old mum' is who we remember, New Mum is who she is, and who we meet each time and we've sort of separated the two. New mum is a stranger who is surprisingly easy to make friends with as each time it turns out we have something in common.
I went to help my parents the other day and my Mum seems to be deteriorating quite quickly so I think this will be us in a year or two.
You did the right thing. MIL wouldn't have lived as long without nursing home care. Very immobile then illness had her critical in hospital. Released to respite but then had to move to nursing home as she needed a hoist to move out of bed or chair. Just impossible at home any longer.
singing lovely tunes
Music is an absolutely remarkable tool - I helped make a film about it a few years back - really aimed at care professionals rather than the public but a good watch.
Aside from the music - listen to absolutely everything Heather Edwards says then go back and listen to it again. I should take some time out and do a film just with her for the families of people with dementia - a sort of an emotional survival kit.
Just to follow up on zippykona's comment - my aunt went into a care home (aged 90 something) a few months back. My cousins were very down on her - "she's only got a couple of weeks to live", "visit if you want, but you won't get anything sensible out of her". I went and visited, she was buzzing and we chatted for ages. I learned all sorts of bizarre things about my family.
As far as I know she's still alive (never quite sure with my cousins, they're all a bit bonkers).
What a tough situation OP and I hope things get easier for you and your mum. Thanks to all the others who have shared their experiences too.
I'm about to embark on a similar thing and the next year is going to be a big one I'm sure.
My dad is 80 and has been declining mentally for a few years. About 9 months ago he had to stop driving, which had a massive impact on his health and mental state. We managed to organise some home care which has helped a lot, just 1 hour a day, and I'm sending him shopping every week.
Dementia was first suspected probably 2 years ago but he never consented to any tests or treatment, he just wanted to pretend it wasn't happening. Finally because of the driving debacle he was put on a waiting list for a memory assessment, which finally happened a couple of weeks ago.
They diagnosed him with mixed Alzheimer's and vascular dementia. Before that he also had a mental capacity assessment which concluded that he already lacked capacity.
We have no LPA in place (I know...) so we are currently in limbo, and will apply for deputyship but it's very involved and will only give us control of financial decisions, not care/health.
He is living on his own, far from me but close to my sister, however they have a fractious relationship and she regularly needs to take a break and not see him for a while. So the plan is to move him to Bristol closer to me so he can see his grandkids as often as possible before he declines further.
We are attempting to get him into an independent living retirement village, which he is totally on board with. There is a dementia unit adjacent to it. But the clock is ticking and we need to move before he declines further and his care needs change. At that point the only options will be to go straight to a care home or stay where he is and wait for the inevitable crisis point.
So much going on and at the moment I don't have the headspace, so I'm mentally moving all this to "after Christmas".....
It's a very hard thing, my nan and I were quite lucky on balance, she was very independent until the last few months that were a mixture of A&E hospital and care home.
@petefromearth, I'd say if he's lost capacity already then trying arrange supported living is probably a waste of time, he'll hardly get through the door before he needs more (if he can cope at all in a new place). Probably worth having a sniff around care homes to see what can be done when it's necessary.
Nothing to add other than lost mum to dementia and dad to copd..... all other illnesses ..............................
My mum has Alzheimer's and is going downhill fast. She's still at home with my dad who is doing a great job but suffering as a result. I imagine she will end up in care at some point in the coming year. It's a bloody awful, cruel disease.
You've 100% done the right thing OP.
Also a timely thread for me. My mum has Alzheimer's and has been in care for a couple of months now. It's hard to get my head around how quickly she deteriorated and its also hard as she's relatively young - 69. My dad who is fit and mentally astute just couldn't cope with her though, he didn't have the tools and it put a tremendous amount of strain on me and my sister.
Its a truely horrific disease, anyone dealing or suspecting to have to deal with this in the future has my sympathies.
My grandparents had it - well mostly my grandma. By the time she went into care (many months too late due to my grandpa insisting that everything was fine, he could cope, she should be at home...), she was so far gone that she didn't even know she was in a home.
She recognised my grandpa due to familiarity. Didn't know who he was though. 😥
My sister and I are dreading anything of this nature happening to my Mum as she's on her own and very frail. Any sort of fall, anything that prevents her from driving (she's utterly totally reliant on her car) or any loss of cognitive abilities and things will go downhill very quickly.
It's why it's useful to see these threads to get some perspective and thoughts on it all. Best of luck @ac505.
It's such a tough decision to make. I went through it with my Mum last year. She had been getting a bit forgetful for about a year or so and then became paranoid before being diagnosed with vascular dementia. She then went downhill alarmingly quickly over about 6 months to the point she went from living on her own and coping (albeit with me doing all her shopping bills, etc.) to getting cleaners in once a week, to carers coming in 2, 3 and then 4 times a day until she had one too many falls and a care home was the only safe option. By the time I got her into a care home she didn't realise she was in one and was convinced people were in her house and stealing from her. With hindsight it was absolutely the right thing to do as she just wouldn't have been safe at home. I actually wish I had got her into one earlier as she would have had a better quality of life than at home on her own. It's a horrible horrible disease and professional carers and medical staff are best placed to deal with it.
Really tough and I feel for you. Going through the exact same struggles with my mum. It won’t be long before I’m having to the make the same journey too.
You have done the right thing.
My dad is four years into his care home residency. Vascular dementia and Parkinsons. He is virtually mute (Parkinsons does that bit) and in the deep depths of dementia. But when his carers come into the room he always manages a smile for them. They keep him healthy, excepting the degenerative diseases, fed and safe.
In hindsight putting him in the home saved my Mum and has vastly improved her life. We didn't know how much she was enduring in caring for him and hiding from me and my brothers.
Obviously if you are self funding it is very expensive, but there is some help out there and talking to someone in the know about benefits etc can help, as can an NHS continuing healthcare assessment in the right circumstances. We paid for Dad for the first 6 months or so, but his needs are so severe that the NHS has fully funded his care for the past 3 1/2 years and the funding has just been renewed for next year too.
johndoh
Free Member
You have done the right thing – don’t think anything else. Life can be full of hard decisions and you had to make one.
This. My dad's been in a care home for a couple of years now, and it's the best place for him - he has the care he needs round the clock and couldn't get that anywhere else. The staff know him well and look after him, and he's surrounded by people he's come to recognise and know. It's not home, but sadly he's beyond the point that he could live in his own home.
Doesn't make it any easier, but it's still the right choice.
<br />I feel for you all
My MiL just gone to a care home about 6 weeks ago. An agonising decision but the reality is we should have done it a while back. She was on 4 visits a day but she has been falling and could still be on the floor all night, which is what hospitalised and ended up with her in 24 hour care. She is now safe, well feed, clean and dressed and when she falls there is someone to help straight away
Got it all to face again with my parents, 95 & 93 they still live independently but are really struggling and living in worse conditions than I’d like
There’s no dignity in old age and nothing to recommend it apart from the fact it’s better than the alternative
Well I can only add to all this in much the same way. You have absolutely done the right thing.
My mum went into a care home just over 2 years ago now. I remember vividly leaving home to come back here, and I knew it was the last time I would see her at our family home. A few days later she was gone. It was absolutely heart breaking. Dad also 'lied' to her about what was going on, but it was the best way to handle a very difficult situation. She is in the best place now with the right people. I tried, and still try, to stay positive with that. My mum was in her late 50's when she was diagnosed, she is 65 now. She hasn't been able to speak for 18 months and she only recognises my dad now. On my last visit last month it was the first time I witnessed she didn't recognise me and it broke me.
It's hardn even more so when the person has a full set of marbles, but the bady is knackered. MIL would always moan about the home, it wasn't perfect, and would tell us she wanted to be back home (we kept the house until she died as we had a charge against it for her Nursing care). She used to make us all feel guilty, but four carer wisits and a family member every day wasn't enough to keep her safe.
We'd managed to keep her home for about five years, but following an illness she just gave up attempting to get out of a tilt and lift chair to shuffle to the commode or wheelchair for her to be moved over to a bed in the dining room.
She needed a hoist and those have to be operated by two carers, which was impossible at home. She wouldn't have lasted as long at home, nor seen two additional great grand children.
It's hard and horrible, but it's for their safety and care.
We did the same 12 years ago and it was difficult and very hard to take much positive from other than knowing she was safe and looked after.
I've heard the average lifespan in a home is 3 years, she got 6.
Under 2y (average) in a care home is what I saw.
Honestly I think people need to get over it a bit better. Sure, getting old and dying isn't a bundle of laughs, but the insistence some people seem to have on staying in their own home where they can't cope and end up lying on the floor in a puddle of piss waiting to get picked up every few days, rather than moving somewhere that they can be competently cared for...it's just stubbornness for its own sake.
A while ago now we used to take our dog to a care home under the Pets As Therapy umbrella. We got to know one particular resident who still had his marbles and had been in an overlapping line of work to us.
He said that when he went in, he thought he didn't really have long left.
But through the miracle of being regularly and diligently fed and medicated, he was there four more years, and passed peacefully away one night when his heart packed up.
I do wonder if the less social older people get so used to loneliness they don't even know they are lonely...