I'm sure we had a big thread on this but can't find it. Need a rant and ramble, sorry.
Dad is 87, mum is 83. Both have been physically pretty sound up till this year, but noticeably slowing and getting more frail and unstable on their feet over the course of the last year. They live 10 minutes walk away in the same village. I don't work Fridays so I can take them out for cafe trips and shopping, and get away with 2-3 phone calls a week just to check in, popping round if they need anything more urgently. Work are pretty good at supporting carers, and I can change non working days or use flexi when I need to.
Mum is beginning to really struggle with memory, as well as struggling with losing sensation/some use of her fingers. The frustration of forgetting things - usually the key fact in the thing she is trying to tell you - is really getting to her. I know my dad is picking up a lot more around the house and worrying about her/covering for her, and it's taking it's toll on him. We saw the same pattern with my in laws 3-4 years ago. Mum does not want to see a doctor about any of this, understandably terrified in case there's a dementia diagnosis.
Things really got real while in the supermarket with them this afternoon - she couldn't remember what meat she wanted to get and we were all searching up and down the selection of chicken with her trying to suggest what it might be. She then mentioned that it was on her list, that was in her handbag, but she refused to get the list out so she could find what she wanted to buy, and she got quite beligerent and upset with herself and us - sympathetic looks from other shoppers kind of thing. Eventually I persuaded her to get the list out - it was mince she wanted, not chicken at all. I then had to help her sorting out the cash to pay (has never used her card) as she was still upset and not focused.
I have health and financial POAs in place for both of them, but I don't think a GP will declare her unfit yet, nor would I want them to - she still has plenty of "better" days. They have enough savings etc to pay for support to keep them independent for as long as possible, but again are reluctant to ask for help.
Any advice appreciated - is there any way I could ask the GP to check her out for the physical issues at least? Any tips on persuading them to get a bit of help with cleaning, gardening, maybe a bit of meal prep? Dad is pretty pragmatic about that but I guess doesn't want to undermine my mum. They don't want "to be a burden" to me but I do need to think about how I can be more available to them - I'm 57 next year so looking at possible partial or early retirement, but having been part time for a few years now the impact on my salary and pension is quite noticeable when I look at the figures.
Anyway, thank you for listening...
Been there, no simple answers, my dad started similarly and passed away at 90, after a fall, within a few years of symptoms, in denial to the end, and was never prepared to get a full diagnosis. We had to physically remove his car as he was still driving after having his licence revoked by DVLA on doctors advice. He was very difficult laterally..
My mum is still going, 92 now, and at home with a full care package. It’s not easy at all.
On the retirement thing, I know of some people in similar situations who have, under POA, set themselves up as a paid carer, which I understand is quite legit as long as it’s a sensible pay rate and declared to HMRC etc, but I could be wrong ?
Re: Gardening help, do you have a 'friend' who you present to your folks as a keen amateur gardener, looking to start their own business, who your folks could help out by letting them do a bit of gardening for them? Of course the friend would be an actual experienced gardener in on the slight deception. Who you pay on the QT. Just a thought.
Mum does not want to see a doctor about any of this, understandably terrified in case there's a dementia diagnosis.
That behaviour - forgetting things, belligerent attitude etc is classic dementia. Everything you've described there is my grandparents to a T.
Grandmother went first, forgetting what she was trying to say, forgetting what she'd asked for. Grandfather picked up the slack for as long as he could, didn't want to ask for help, very stubborn and proud.
Then the same happened to him once my grandmother had died, he got very belligerent and actually quite unpleasant.
It's also heartbreaking to see it and to have to deal with it. Can you try doing batch cooking, make up a load of their favourite tea, freeze it and have it there for them? Also, try not to argue. They'll believe whatever it is their deteriorating mind tells them, including hallucinations - we found that the most painless approach was just to agree that yes, there probably had been some fairies in the garden but they weren't there any more and would they like a nice cup of tea?
No Grandpa, your 1978 Morris Minor is not ready to collect from the garage, we'll go tomorrow.
Don't be surprised if you have to deal with random ramblings like that... Good thing you've got the POA sorted too.
I had wondered about the "friend" gardener idea. We have them round for a meal once a month and make sure there are 2-3 meals worth of leftovers.
I've been in similar, with my dad, when the contradictions get too bad, it's good to have POA if only just to protect them from email scams etc.
Invoking your POA, is a different matter, though, they might not take it kindly, and they have to meet a certain barrier to take control, but from a financial security point of view, they are prime targets for scams if they don't know whether they want mince or chicken.
I'd certainly look into preventing them from making any big purchases without running it by you first, but that's hard too, as they will have to accept they are incompetent, and no one likes to hear that.
Can you speak thier bank with your attourney hat on, and block any card purchases/transfers say over £100 without a prior call to you to authorise?
Can you speak thier bank with your attourney hat on, and block any card purchases/transfers say over £100 without a prior call to you to authorise?
Was going to wait till they'd got my Christmas presents... 😎
(Joking!)
sounds like they won't like it but if you can get them a diagnosis there is a lot that can be done these days with the appropriate drugs. important note - it will slow their decline and earlier diagnosis is better than later. my partner has recently been through it with her dad. is hearing an issue? this can contribute to the problems they have. have a chat with the gp, maybe suggest they get them in for a 'regular checkup' and get them to test. usually it will involve both of them. all the best.
sounds like they won't like it but if you can get them a diagnosis there is a lot that can be done these days with the appropriate drugs. important note - it will slow their decline and earlier diagnosis is better than later. my partner has recently been through it with her dad. is hearing an issue? this can contribute to the problems they have. have a chat with the gp, maybe suggest they get them in for a 'regular checkup' and get them to test. usually it will involve both of them. all the best.
That's a very good point, my dads eyes and ears deteriorated ... we managed to get one of his eyes done (catteract) but your world can suddenly seem very much smaller and confusing with brain fog, plus with reduced sight and hearing, it's often multi faceted.
When his mental health got worse, just even getting him to a doctor to do bloods and re-appraise his meds and get his other eye done was an up hill battle.
also, exercise and social engagement are shown to be useful. hope it goes well. all the best.
It is very, very difficult when they are still competent enough to deny consent and won't agree to see a doctor. Their GP has a duty of candour, so even if you try to arrange something behind their back, the GP should not collude with it, unless they are an imminent risk to themselves or someone else.
Meds don't make a massive difference IME. Eyesight and hearing, regular exercise and avoiding social isolation make much more of a difference.
Quite often we see that there has to be a crisis in order to precipitate change unfortunately.
Sounds very much like my dad's symptoms and behaviour. He split from my mum years ago, so was heavily reliant on my sister, and also his ex partner, which took a terrible toll on both of them.
Even though it was pretty obvious that his memory was going he refused to see a doctor or get any help.
Quite often we see that there has to be a crisis in order to precipitate change unfortunately.
This.
In my dad's case it was stopping him driving (which took me putting wheel clamps on his car). As a consequence his health declined rapidly and he was finally willing to accept care at home.
Fast forward to now. He moved across the country, got a dementia diagnosis, in a care home, deputyship order in place (as we had no LPA), house sold.
In his case the dementia meds genuinely have helped, although come with side effects.
Overall we're in a better situation than we were back then, but under no illusion that things will likely get pretty grim as he declines further.
Good luck, I hope they manage to get the care and treatments they need.
been there with my mum.... not nice.
now at a far worse state with her.
she is in a secure dementia home now at 85.
some days she doesnt know me or my wife of 35 years, or my younger sister.
biggest issue now is, she refuses to get showered or a bath. we have all tried to help her with this. the family and the care home.
to the stage that i have told them to forcibly do it, but obviously they cant do this. they cant make here do anything.
she insists that she gets a strip wash daily in her bathroom. but we doubt it.
she has accidents and sometimes smells but no matter what we do she refuses a shower.
i asked the care home manager what we can do. and it seems nothing.
we have talked of getting here sectioned but like i said, this place is secured. buzzer in buzzer out.
we are at a complete loss with what to do.
Quite often we see that there has to be a crisis in order to precipitate change unfortunately.
I came on to say exactly this.
I'm currently four years into caring for an elderly parent - we have gone from fit & active, to a few hours care at home, to a lot of care at home, and then finally a nursing home. The catalyst for each change has been a crisis (medical).
Your overall situation sounds very different to mine but the effect it can have might be similar. It can get extremely stressful caring for parents, or anyone for that matter. So look out for yourself, and if you have a partner and family remember they can end up bearing the brunt of it too. After a couple of years I was exhausted by it all, I thought I could handle it but I was wrong and ended up seeking help for myself. It's natural to want to care for loved ones but you almost certainly won't be able to do it alone or without breaks. The last two years for me have got better but mainly because I learned to let go, and finally because of the move to a nursing home and the relief that brings - no more sleepless nights worrying.
The thing i've learnt most is that being prepared helps a lot. Getting the POA registered with Banks, Building societies, BT, the house insurance company etc are all practical steps you can take to get yourself set up for when the inevitable happens. None of these bodies will talk to you unless it's registered with them, or you are a registered point of contact on their system, and it's a whole lot less stressful doing it now rather than when there's a problem with the bank or the BT account's been hacked. You don't have to do everything straight away, make a list of all the accounts they have and work your way through them. IME, all the bodies i've dealt with have had straightforward procedures to follow and knowledgeable staff to deal with. Make the GP aware there is a POA if you haven't already.
Keep a notebook of all the contacts you make along the way - telephone numbers etc - and build a little directory. When you have a telephone call with medical staff, jot down the conversation in the book as it's really hard to remember everything, especially medical terms which you can google later.
There is support out there in different guises but it is often difficult to know how to find it. I found British Red Cross remarkably helpful - they were able to give me the right numbers to ring when i really needed help from Adult Social Care for example.
Quite often we see that there has to be a crisis in order to precipitate change unfortunately.
I came on to say exactly this.
I'm currently four years into caring for an elderly parent - we have gone from fit & active, to a few hours care at home, to a lot of care at home, and then finally a nursing home. The catalyst for each change has been a crisis (medical).
Your overall situation sounds very different to mine but the effect it can have might be similar. It can get extremely stressful caring for parents, or anyone for that matter. So look out for yourself, and if you have a partner and family remember they can end up bearing the brunt of it too. After a couple of years I was exhausted by it all, I thought I could handle it but I was wrong and ended up seeking help for myself. It's natural to want to care for loved ones but you almost certainly won't be able to do it alone or without breaks. The last two years for me have got better but mainly because I learned to let go, and finally because of the move to a nursing home and the relief that brings - no more sleepless nights worrying.
The thing i've learnt most is that being prepared helps a lot. Getting the POA registered with Banks, Building societies, BT, the house insurance company etc are all practical steps you can take to get yourself set up for when the inevitable happens. None of these bodies will talk to you unless it's registered with them, or you are a registered point of contact on their system, and it's a whole lot less stressful doing it now rather than when there's a problem with the bank or the BT account's been hacked. You don't have to do everything straight away, make a list of all the accounts they have and work your way through them. IME, all the bodies i've dealt with have had straightforward procedures to follow and knowledgeable staff to deal with. Make the GP aware there is a POA if you haven't already.
Keep a notebook of all the contacts you make along the way - telephone numbers etc - and build a little directory. When you have a telephone call with medical staff, jot down the conversation in the book as it's really hard to remember everything, especially medical terms which you can google later.
There is support out there in different guises but it is often difficult to know how to find it. I found British Red Cross remarkably helpful - they were able to give me the right numbers to ring when i really needed help from Adult Social Care for example.
Be prepared to become the adult in the relationship with your parents. Roll reversal is part of caring for them.
double post
Good advice about POAs above. I’m also pleased to see that other people’s experiences of dementia meds are better than this cynical old GPs opinion.
Unfortunately a large part of the problem is getting people to do things like take medications if they’re in denial about what’s going on.
Unfortunately a large part of the problem is getting people to do things like take medications if they’re in denial about what’s going on.
With my grandparents, it was always a case of "well what do doctors know?" syndrome. I know what's going on with me, they'll just prod and poke a bit.
Also, the amount of meds they were on, they'd routinely forget what they were supposed to take and when.
but from a financial security point of view, they are prime targets for scams
This as well. If there's any way to check bank statements regularly and stop (or at least put an authorisation check on) any large cash withdrawals or large one-off payments, do it.
If they insist they don't need help, let them get on with it.
2-3 phone calls and taking them out shopping etc is far beyond what any normal capable adult parent would need, call them out on it.
Or be a doormat. The more I see people babying their parents through their dotage, the more I think a bit of tough love is a more appropriate attitude.
Can you speak thier bank with your attourney hat on, and block any card purchases/transfers say over £100 without a prior call to you to authorise?
I don't believe there is any legal basis for this nor any prospect of the bank entertaining it.
Thanks for all the advice. We are kind of waiting for a crisis with one of them to kick things off, which happened with my in laws. "Only a fall away" from a rapid spiral is a common phrase round here.
Best wishes to all going through this as well.
Perhaps when having one her better days, try and talk thru it all (You'll no doubt have done this repeatedly....and will likely need to carry on doing so). (Make a note of all the seperate hints/tips or whatever you want to call them from this thread) We are going thru exactly the same with my wifes parents (father mainly) Explaining that sorting out their 40 + yr old bathroom with an over the shower bath NOW rather than when one of them can't actually get in the bath to take a shower is hard work but we're getting there. Another thing for us is a meds check. What her mother takes versus what she actually needs. Hearing test is a good call too.
This is also my parents. Dad is 83 and gone from cryptic crossword in an hour to not getting the paper over a couple of years. Physically frail but still walks the dog. Can tell you about 1965 but will repeat the story about the TV not working 3 times in 30 minutes.
Fortunately his phone is knackered so can't get the code for payments out of the bank.
The dog is on his last legs and when he goes I foresee a rapid decline.
In the summer he mentioned that he didn't enjoy driving his car, so I jumped on that and sold it within a few days. Which has been a positive.
It's the fixations that are the issue. He'll just focus on one small issue. I've had to sort the boiler 3 times as he's convinced the timer is wrong. Last time I put a post it note on saying timer is correct. It's taking an obvious toll on mum but they won't go to the GP.
They live 10 minutes away and we pop in 3-4 times a week and pick them up from the supermarket.
My sister lives 10 miles away and taps them for cash. (I have poa) So much so that mum has confided that she doesn't actually like my sister and she has to make appointments to visit as it's so stressful.
We had over 10 years of looking after the in-laws. Started with MIL having heart attack, then stroke - as you can see various medical issues causing a downward spiral. FIL was onto it though, he got carers via social services to come in at least 3 times a day - getting up, lunch and going to bed. My wife and her sisters did the bathing etc. Unfortunately, FIL deteriorated very quickly within a year (stage 4 lung cancer from being a heavy smoker). We had a right battle stopping him driving even before the diagnosis as he had COPD - would jump in the car with his oxygen mask on (wouldn't tell the insurance). Then followed 8 years of us looking after MIL with help from carers. My wife did all the financials. Lest 3 years she was in Nursing care as her mobility would be reduced again after various medical issues - falls being the main issue - never seen someone bruise so badly from a small slump.
Key point, is see the GP and also start to involve social services - they can assess the situation and see what's needed. These things take time, so you'll have time to get these in place before they are really needed. The difficulty is getting them to accept help - we didn't have that as FIL had got help put in place. My wife gave up work for about a year after her mum had the initial heart attack to help look after her.
We're currently on a bit of a breather - my parent's are 80 and so far OK. It's hard work, phone calls at silly o-clock as the TV isn't doing what they want, the curtain won't close, that job needs doing now, not at weekend. I'd start by chipping away at getting help in.
All the best.
If you have LPA covering financial decisions then this can be taken on when person has capacity .. if they consent of course. If you have concerns regarding her capacity to make informed decisions regarding this then I'm pretty sure a GP would be able to support this as part of a general health screening .. again, consent is good .. but I'm sure a GP will understand if mum brought there under guise of something else .. suggest a visit to discuss both your concerns about Dad; I'm sure mum would feel a lot less anxious discussing that with the GP wink/wink.
Maybe conversation with Dad about accepting local authority referral for a care assessment. It's just an hour chat with the drippy social worker, but it may just identify support you didn't think existed.
Best wishes to you parents.
"we have talked of getting here sectioned but like i said, this place is secured"
Using the MHA to take someone into hospital to bath them is not something ever likely to happen .. unless it at a stage where it's a life or death situation anyway.
Unfortunately an elderly loved one not bathing is probably the top concern from family. And something they struggle to understand - ultimately it's doing the least restrictive option for the persons best interest.
Physically restraining someone each day, or even week, to forcibly bath them will be a very traumatic experience for them - so is that worse than them having a not too pleasant odour?
Often a skilled staff approach can resolve such issues. Getting to know the person, and with a MI dementia approach I have seen exceptional outcomes. Unfortunately this type of training is often lacking.
Sounds like there are a few of us in the same boat. Mum is 92 and on the decline with Dementia but still at home as she lives in a small bungalow which is great for her.
Things I've discovered:
- Getting a diagnosis is key and opens up help in a number of ways
- Through Alz society we had help filling in the 24 page PIP form and got the enhanced weekly rate of £110.40 which is paying for a carer to come in
- She's on Memantine which is supposed to slow down the diseases progression and having a diagnosis at 90 usually means the deterioration is slower.
- I bought a tablet box which the carer fills but she sometimes forgets to take it even though I have a reminder clock which goes off twice a day with a message to take your meds. You can get pre filled blister packs which are date and time stamped to help but as mum is on 1.5 tablets which have to be broken we can't go down this road as the automation can't deal with it.
- If you have financial POA the bank will mark the account as at risk if you request it which puts extra checks in place.
- I order most of her meals from Wiltshire Farm Foods which are complete frozen meals she just has to put in the microwave
- I have her email password so I have her email come through on my computer and get to see any email reminders on bills etc
- Taxi apps are a great help and as I live about 20 miles away I can order a taxi remotely for appointments I feel she can deal with herself. For example, she did a 6 week course through Alz society at a community centre across town.
- It is stressful for the family carer(s) so make sure you look after yourself as well
Going through this as well. Made harder by my sister being in denial and pretending Mums fine, when she hasnt been fine for years. Wont eat anything, has a 1minute memory. Falls over alot and generally does not have a clue what day it is. Mum refuses to help herself though. Emergency contact laminated list in hall way gets moved to the back of the front door so you only see it on your way out. Day / Date clock is laid face down on the side board, because you really dont want to know what day the delivery guy is coming with meals etc. Notepad and pencil attatched with string kept by the bed, so she jots things on a scrap of newspaper which then get lost.
Meals . Mum eats virtually nothing. I mean a bag of mini cheddars is half eaten and the top folded over' for tomorrow' . 8 mini cheddars isnt even a snack. I think its so she doesnt have to go to the toilet unexpectedly . We got her a load of Wiltshire Farm Food meals .' Theyre really nice and I like them ' was the response . 1 month later a freezer check showed she had tried 1 out of the 12 or so and rest were untouched.
Carer . We pay (out of our taxed income ) for a 20 something girl to pop round twice a week. My mum is minted and into Inheritance tax territory . So we pay as Mum is still fighting WW2 and rationing and has £90k sitting in her current account. But refuses a care package as she thinks she cant afford it, and doesnt need it. Im 80 miles away , my brother 200 miles away. Sister 6 miles away and she works 3 days a week so gets the lions share unfortunatly. Sister set up the care girl , There is alot of coffee drinking and chatting , not so much care. Mum will say 'Leave the bathroom ,its fine I cleaned it yesturday ' When its not been done.
Money .- Absolutley clueless, aided and abetted by my daft Sister. EG . Bank details, pin number and password all on the same peice of paper on fridge door. Huge amounts of cash in various accounts , shares , some fixed term deposists and ISA 's . God knows if she pays tax, I doubt it . SA is beyond her now, and pprobably has been for the last 10 years . Gave the carer girl the cashpoint card as she needed some money for what I dont know . But because shes do-lally she gave the carer the wrong PIN code.
Shes 93 in a few weeks . Been alone for 20 years. Its not easy as she had no friends before my Dad died. Looking at daily pop in carer soon but I know whats coming and the grief that goes with it. Mums been diagnosed with mid range Alzeihermers and dementia and possible stroke side affects . She lives in a warden assisted granny flat with loads of younger oldies who look out for each other and there are a constant supply of care personal going in and out, Its safe, warm and has alarms but it wont be sustainable for much longer .
You have my sympathy.
My mum will accept some help, but only with things that she can't be bothered with and has never done like finances. We run all of that for her
She really needs help with cleaning and other household chores that she's always done, but won't accept that
She'll go along with suggested GP visits if we arrange them and get her there because she can't be bothered with hanging on the phone. We have her consent recorded with the surgery
I've learnt over a couple of years that it's a case of keeping her as independent as she wants to be and picking your battles
If you have concerns regarding her capacity to make informed decisions regarding this then I'm pretty sure a GP would be able to support this as part of a general health screening
I’m afraid not, it would need an expert opinion. We do assess capacity, but only as it applies to treatment that we’re offering.
Often a skilled staff approach can resolve such issues. Getting to know the person, and with a MI dementia approach I have seen exceptional outcomes. Unfortunately this type of training is often lacking.
this has failed too.
mum had had the same carers for 2 years, who she seems to get on with and is happy around them, but they have tried and failed to get her to shower/bathe.
truth is she has always been a lazy person, even when we were kids.
had a lay in most day, or a afternoon kip, she was a single parent so this may have been a factor.
she goes back to bed now after breakfast, and doesnt get involved much with activities in the home.
and i think the staff may have kind og given in with her. too many to look after and not enough staff.
cant blame them to be honest. i have always thought of her as a lazy nasty women...... not nice i suppose thinking about your mother like this. but we all have things to bear.
Often a skilled staff approach can resolve such issues. Getting to know the person, and with a MI dementia approach I have seen exceptional outcomes. Unfortunately this type of training is often lacking.
this has failed too.
mum had had the same carers for 2 years, who she seems to get on with and is happy around them, but they have tried and failed to get her to shower/bathe.
truth is she has always been a lazy person, even when we were kids.
had a lay in most day, or a afternoon kip, she was a single parent so this may have been a factor.
she goes back to bed now after breakfast, and doesnt get involved much with activities in the home.
and i think the staff may have kind og given in with her. too many to look after and not enough staff.
cant blame them to be honest. i have always thought of her as a lazy nasty women...... not nice i suppose thinking about your mother like this. but we all have things to bear.
3 points that I’d make:
- People don’t become more reasonable just because they can’t remember.
- In dementia care, trying to correct them is both fruitless and upsetting for the patient.
- Unfortunately this is how dementia tends to progress as their world gets smaller and smaller.
- People don’t become more reasonable just because they can’t remember.
- In dementia care, trying to correct them is both fruitless and upsetting for the patient.
100% in both of those.
You've got to remember though that *they* consider it's perfectly reasonable to get out of bed at 2am, wander off to the bus stop and stand there waiting for the bus. Nothing is quite firing correctly, there's dregs of memories being combined in God only knows what ways and to the person having those memories, it's normal and they'll get very upset if you try and tell them it's not. You have to be more subtle
- oh the bus isn't due for a bit yet, why don't we wait indoors where it's warm?
I mentioned something similar earlier; you just have to go along with it and before too long they'll forget all about it and be happy watching the same film for the 12th time.
- oh the bus isn't due for a bit yet, why don't we wait indoors where it's warm?
Yes, very much this.
A lot of this sounds similar to me, 18 months ago my Mum, 91 decided she wanted to move closer to me. I think she knew dementia was gathering pace. So I spent summer '24 selling her house, and moving her in with me, whilst we looked for a place for her. That was a huge mistake, she was much changed, behavior much changed and hell to have in my house. She was adamant she wanted her own house, with carers coming in, so spent the first half of the summer '25 buying a house for her and moving in. Unfortunately the dementia meant she couldn't control her anxiety, so she wound herself up to the point where she had a stroke, two months after moving in, which rapidly accelerated the dementia.
The local hospital kept her for 3 nights then shifted her out to a local community hospital (and told me after she had been moved!),who couldn't cope so after 5 weeks there, she was sectioned into the local psychiatric hospital. Thankfully she has settled down there whilst we look for a care home place.
We dont have Welfare LPOA so I have to apply for Guardianship (Scotland) which will take 4-5 months (3 months to go). Cant place her until thats done. First Lesson: I would urge everyone to make sure they have LPOA (Welfare) in place for themselves and their folks. Not having it has made this so much more difficult. I have mine in place. If I lose my marbles my family can shove me in a home and its the best thing for me and much less hassle for them, Job done.
Two weeks ago I had a tense meeting with the hospital senior consultant, who wanted to move my mum out to a random local care home as she was "medically better". I literally said WTF to him. The only reason she is in the psychiatric hospital is because the local Royal Infirmary dumped her out too quickly. Plus there isn't any legislation under which they can do this. He muttered 13ZA in Scotland but quickly rowed back after discussion. The social worker was brilliant and got it confirmed in writing she is staying there until Guardianship in place. 2nd Lesson; Read the rules and take them on. They only care about the bed spaces.
Its been massively stressful. I have two sisters and they have largely vanished and left me to have to deal with it. I have to sell the house we bought earlier this year. My sisters were adamant that this needs to be done in the spring and furniture needs to be staged in the house to get the best price. Bollocks to that, the house will be emptied before Xmas, put on the market in January so its sold before the summer. The Gov't is going to take it all in care home fees anyway so who cares if it sells for less than it could. I dont want to waste another summer on this. My neighbours observed from experience that this is all so stressful it becomes a massive risk to ones own health, very true! 3rd lesson The most important thing I have learned through this whole process is to be ruthless and look after & be kind to myself.
Sorry for the ramble. It just seems that people make a lot of money out of keeping the old 'uns alive when maybe thats not the best for them?
A timely thread, it's reassuring and also slightly sad to see all the responses and good advice.
Our circumstances are I think a little different in that my dad, 79, thinks he has dementia. I and my wife however think it's more likely to be symptoms of poorly managed diabetes. Either way, my dad won't engage with the Dr's for a diagnosis, or at least won't proactively do it. He's very much convinced that his health is somebody else's responsibility. He's incredibly passive in every sense now, until somebody disagrees with him!
He wants to get lpa sorted, wants to sort his will etc. But won't go to any solicitor appointments 😕
Challenging times, and if I'm honest I'm in denial to a certain extent. I'm really struggling to make the head space to deal with it all, it's incredibly overwhelming.
It just seems that people make a lot of money out of keeping the old 'uns alive when maybe thats not the best for them?
After my late father's last two years after being "saved" from the brink at over 90 I'm tempted to get "do not resucitate, do not treat, **** off and let me die in peace you sadistic bastards" tatooed on my chest. Thankfully the next time my father was taken to hospital my mother had the health POA in her hand and his misery was prolonged no more.
I followed the previous thread on this subject and would like to thank the contributors. I didn't feel like sharing while my father was still alive and will be fairly discreet while my mother still is (92 and doing pretty well). But it's helpful reading about other people going through similar. A few thoughts:
Coping with physical decline is easier than mental decline
Saving a 90-odd-year-old who was clearly going to have a very degraded quality of life if they lived was not the best decision you doctor people even if you felt (legally) obliged to make it. For the patient, the family, for society in general.
POAs good if you are contactable and can get to the hospital in time
Kenyan carers were ace
Social services pretty good on the whole
My mother having worked for the NHS definitely helped.
Care homes aren't great places.
But won't go to any solicitor appointments
Home visit from solicitors so they just have to ask a few questions and witness a signature?
I agree, empowering people to stay out of hospital at the end of their lives is very difficult.
LPA (lasting power of attorney) can be done online!
You need one for finance and one for health. £92 each.
https://www.gov.uk/power-of-attorney
He wants to get lpa sorted, wants to sort his will etc. But won't go to any solicitor appointments
Challenging times, and if I'm honest I'm in denial to a certain extent. I'm really struggling to make the head space to deal with it all, it's incredibly overwhelming.
Its horrible, up to the point where you realise its a one way process thats only going to get worse and your own & wifes welfare is the most important thing here, due to the increasing burden and stress. Not having an LPOA (Welfare) in place has been a nightmare. Explain to your Dad that without it if he becomes ill then his care will be dealt with by the less than competent these days NHS and you wont be able to help him as you have no right to. As Edu' says arrange a home Solicitor visit. Not having it has been horrendous for me. Get it done before you cant.
Even I managed to sort my mum's LPA and I'm not too good with forms.
I can’t read every response, but, although dementia is an obvious diagnosis, there are a great many things that may be causing issues. My FIL struggles but he is on loads of meds. Just altering his prescription can make massive differences to his behaviour and ability to understand what’s going on.
sounds like they won't like it but if you can get them a diagnosis there is a lot that can be done these days with the appropriate drugs. important note - it will slow their decline and earlier diagnosis is better than later.
It depends on the type of dementia. Alzheimers perhaps. Vascular there's really not much that can be done, though progress varies greatly per person.
Diagnosis though also helps with support, including filling in LPOA forms and getting carers allowances, plus helps with acceptance for some.
It's amazing how common all this is but yet very little talked about. I speak to friends my age, and most have been through or are going through the experience with parents or grandparents, or know someone. Within families there's a great reluctance to talk about it.
We had to harangue FiL for a while before he would sign the LPA forms and thank goodness we (my wife) did pretty much in the nick of time.
not quite how it’s supposed to be done but needs must. DIY is fine it’s not very hard but do read carefully and think hard if you are considering joint attorneys!
I’m afraid not, it would need an expert opinion. We do assess capacity, but only as it applies to treatment that we’re offering.
As said - any helpful GP could, and would, support this. But as you correctly identify, some can often look at hindrances initially.
If mum is demonstrating cognitive issues suggestive of dementia and the GP SUPPORTS a referral to local authority social services then things are moving. One of the most common issues I used to get from families caring for a loved one with dementia was the frustration of seemingly being bounced between various professionals stating it wasn't their job .. GPs were often the worse offenders at handing off.
3 points that I’d make:
- People don’t become more reasonable just because they can’t remember.
- In dementia care, trying to correct them is both fruitless and upsetting for the patient.
- Unfortunately this is how dementia tends to progress as their world gets smaller and smaller.
Of course, and that's why a skilled staff approach using various different approaches, including an MI dementia approach which I particularly find effective, is so important. It's recognising the persons memory and cognitive difficulties and adapting how things are better approached using what is known of the persons remaining personality etc.. as said, it's not an approach universally given to those supporting people living with dementia.
I can’t read every response, but, although dementia is an obvious diagnosis, there are a great many things that may be causing issues. My FIL struggles but he is on loads of meds. Just altering his prescription can make massive differences to his behaviour and ability to understand what’s going on.
This is another reason I really want my mum to go to have a proper chat with the Drs. Her meds might be a factor so she may not be as bad as we think she is.
Golly gosh. Came here to vent a bit, but also to give you all a metaphorical hug.
my parents are fortunately still sound of mind and reasonable health in their 70s.
but my next door neighbor, only 71, has just received a dementia diagnosis. She’s currently safe and cared for in hospital. I don’t know too many details. But I saw it coming. She’s alone and socially isolated. When I noticed her confusion earlier in the year, I stuck my nose in, went round for tea, tried to convince her to get help, failed. But I got enough info to know which GP surgery she was at and went and had a chat. Nothing came of it. Fortunately her sister appeared a few weeks back and sorted POA, she’d obviously noticed something was up. I got her phone number.
An ambulance turned up 3 weeks ago today. And she’s still in hospital. I’ve been in touch with her sister.
I never used to like the woman. She has always been a stubborn narcissist. But we kind of love her and look after her.
waking up every morning I see her unmown lawn and nearly want to cry. I might go mow it later.
TLDR: dementia is horrible. My mum and dad are good, but witnessing it with a Nextdoor neighbor I don’t even like is tough enough! Much love to you all struggling with your parents.
This is another reason I really want my mum to go to have a proper chat with the Drs. Her meds might be a factor so she may not be as bad as we think she is.
My Mum was very good at masking her dementia. She was much worse than we realised. We just thought her memory was going because she was, well, old. I took her to her GP a month before her stroke for a memory test and she got the first three questions wrong, then realised it was a test and went into doing a test mode and got the next 27 questions correct. Couldn't remember doing the test the following day. Had we spotted it earlier we would have moved her into a care home sooner where her welfare would have been better looked after. In wonderful hindsight we left that too late.
Often being removed from the home can exacerbate things. If a person living with dementia can be supported to continue their daily routines as long as possible that's a good thing. Taking them out of their long-term environment can be detrimental because the inability to learn new routines and skills will typically be very distressing for them.
I understand the natural instinct to wrap our loved ones in cotton wool to protect them - however, even if you put wings on it, a cage is still a cage.
Sometimes an early move to a care home can be a great move, but other times not so good. Lots of factors need to be considered, and luckily an experienced and good social worker will be able to assess this.
*Unless your self funding a care home placement, then a social worker will be the one assessing if a person is requiring and eligible for a placement.
Often being removed from the home can exacerbate things. If a person living with dementia can be supported to continue their daily routines as long as possible that's a good thing. Taking them out of their long-term environment can be detrimental because the inability to learn new routines and skills will typically be very distressing for them.
Yes, thats a really good call out, i have no doubt now that moving my Mum accelerated things. She was insistent that she wanted that though. She was a very experienced medical professional so knew what was to come. I also couldn't support her in her remote from me location so there is that as well. Had she been more local then things would have been much simpler. The social workers have all been excellent, but very stretched and didn't engage at all when we were discussing the move.
In a very similar boat to the OP, albeit a few years further down the line. We'd started to worry about Dad's memory about 4-5 years ago, but he was in total denial/ minimisation. After a few frustrating conversations, I wrote to his GP, giving examples of what we'd noticed and were worried about, and requested a joint appointment with the Dr, my Dad & Mum and myself. GP had us in for a very low key chat/conversation, followed up by inviting Dad in for an innocuous reason, did an informal 'memory test', and on the back of that referree for a psychological assessment, which confirmed Alzheimer's diagnosis.
So, I think you can share your concerns with the GP and get them to help/take a bit of a lead.
The biggest battle we had with Dad was about him driving; his driving became increasingly erratic and there were a couple of incidents of him getting lost on the way back from the local shop (quarter of a mile away). Got GP to refer to a local driving assessment organisation who assessed him and said he could either surrender his license or they would write to DVLA and advise them to withdraw his license.
Both parents started having falls and their ability to look after themselves noticeably started deteriorating 2-3 years ago. Mum became victim to a couple of phone / door to door scams. We got LPoA in place whilst both had sufficient capacity.
We got in a bit of help - a cleaner, I started cutting their grass every few weeks, took them shopping, sorted out their prescriptions into dosette boxes etc, got a calls & falls alarm package set up .. this was OK for a while, but became increasingly hard to coordinate and support. Just under 2 years ago, we started exploring and talking with them about moving into sheltered/supported living. Mum wasn't especially attached to their last house, Dad was more resistant but we found a place with their own self-contained flat in a complex of 50 others and a care team (not just a warden) on site. They were able to offer flexible care according to need, from as minimal as morning/evening welfare checks right up to end of life care. There were communal areas, a 'bistro' and, we thought, a ready-made community for my parents.
On balance, it's been a positive move, it's much more reassuring for us, and as my parents have declined further, we've been able to 'up' the package of care. But, they've rarely venture outside of their flat or spend time with other residents, and if it weren't for the fact they live 5 minutes away from us, and we see them 2/3 times a week, take them their shopping, take them to church, have them back for Sunday lunch etc, they would be very socially isolated (but then they had become so living in their last home anyway).
It still takes a toll on us/me .. I'm sat writing this in a hospital waiting room with my Dad, nearly 12 hours after calling 111 for pain that Dad, due to his dementia, can't really describe! Old age/dementia sucks big-bawls! The gradual diminishing and shadowing of the strong and independent people that my parents once were is incredibly sad ...
Good luck OP.
Spent a few hours in one hospital then nurses, ambulance staff, and me had to convince my mum to be taken to another hospital for a ct scan after xray didn't definitively show a fracture in her pelvis after a fall. Now 4am, around 11.5 hours after we entered the first hospital. The scan should be happening any time now. Mum suspects dad has start of dementia. Her medical notes are weighty.
Does anyone reading this, who have parents in their 60s and 70s... who are fit & healthy etc...think that it would be a good long term idea to chat about 'the future' with their parents now? To not wait until they are already on the road to dementia ?
Does anyone reading this, who have parents in their 60s and 70s... who are fit & healthy etc...think that it would be a good long term idea to chat about 'the future' with their parents now? To not wait until they are already on the road to dementia ?
Yes. Absolutely!
Getting things like Wills and LPoA in place just makes sense when you're young/fit enough (mentally and physically) to make plans for your later years.
I think one of the features of dementia is that it's gradual, so the effects are often not realised at all by the person in question, and takes a while for others to piece together the jigsaw.
Mrs HTO and I have been saying, in light of my parents' journey, that we should do our LPoA NOW, and also do things like sort out the house/garage of clutter/stuff we no longer need or will ever be likely to use, as we go, rather than leave it for our kids to have to sort out when we're in our 70s/80s/90s.
I wrote to his GP, giving examples of what we'd noticed and were worried about, and requested a joint appointment with the Dr, my Dad & Mum and myself. GP had us in for a very low key chat/conversation, followed up by inviting Dad in for an innocuous reason, did an informal 'memory test', and on the back of that referree for a psychological assessment, which confirmed Alzheimer's diagnosis.
So, I think you can share your concerns with the GP and get them to help/take a bit of a lead.
I’m glad that this worked out for you, but for other people don’t be surprised if your GP is not comfortable to do this as it’s an ethical grey area.
I encourage families to persuade the person that they’re worried about to come for a joint consultation. If they can’t do that, and think that their loved one is a risk to themselves, then they need to contact social services.
Does anyone reading this, who have parents in their 60s and 70s... who are fit & healthy etc...think that it would be a good long term idea to chat about 'the future' with their parents now? To not wait until they are already on the road to dementia ?
Very sensible approach. I bet those same parents have made a will, so that their money/assets are dealth with ONCE they die. but very few people consider what they want to happen to THEM whilst they are frail and dying.
I think, sadly, a lot of society sees death/dying as a 'failure' of a health system. Therefore, people don't like talking about it.
But, a 90+ year old dying of old age is NOT a failure - but a bad death IS.
Have a chat with parents/yourselves, and consider what you would and wouldn't want to happen to you as you get very old and frail.
Look here: https://www.resus.org.uk/respect/respect-patients-and-carers and consider some choices whilst you can.
Sometimes I carry grave concern that, despite all the good modern medicine brings, people living 'forever' but not really being alive isn't always the greatest outcome...
DrP
Does anyone reading this, who have parents in their 60s and 70s... who are fit & healthy etc...think that it would be a good long term idea to chat about 'the future' with their parents now? To not wait until they are already on the road to dementia ?
My wife and I did our own PoA a few years ago (50s)
Price has gone up since so it was a good decision 🙂
You can get knocked off your bike and suffer a major head injury at any age - or various other ailments - and it's not like there is any particular benefit in *not* having a PoA ready to swing into action. Like our wills which we did decades ago shortly after we got married.
Does anyone reading this, who have parents in their 60s and 70s... who are fit & healthy etc...think that it would be a good long term idea to chat about 'the future' with their parents now? To not wait until they are already on the road to dementia ?
We (me and my sister) have POA in place for our Mum, it was mostly instigated by her. Took about 2 months to do it all, the form filling, sending it all off and having it confirmed.
You can get knocked off your bike and suffer a major head injury at any age - or various other ailments - and it's not like there is any particular benefit in *not* having a PoA ready to swing into action.
I think a lot of people either don't realise or don't want to consider that it's very easy to end up going from fit and healthy to disabled in the blink of an eye. A fall, accident, car crash, illness... Dementia is more insidious but by the time anyone realises (and the person is willing to acknowledge it), it can be too late.
My folks are in their early 70s and I've had POA for them since about 15 years ago. Although I had completely forgotten until recently, when dad wanted to redo them for some reason or other.
Me and MrsD are sorting out ours now (POA for each other). I just need to get round to posting the forms off...
Does anyone reading this, who have parents in their 60s and 70
As a parent in their 60s, we are sorting the POAs and decluttering the house (although not getting rid of any cycling stuff, obviously, that would be silly).
We've been through this with my mother, moving her from a house, to bungalow, to a sheltered flat, to a care home. We were lucky in that she had always been good natured and laid back, and her dementia didn't change this. Nonetheless, when Covid finished her off we all thought that it was time. My MiL's dementia is rather less benign, and managing her care is becoming very stressful for Mrs Onewheel and her sisters.
I think a lot of people either don't realise or don't want to consider that it's very easy to end up going from fit and healthy to disabled in the blink of an eye.
We got wills done when MrsMC was pregnant with our first, to put in place arrangements for who got him/them if we both died. We got PoAs in place this year when youngest turned 18, but we should have done them with our wills.
I am unsure if people here are unintentionally using the wrong term or relying on the wrong legal authority to manage affairs of a loved one when they lose mental capacity regarding decisions.
If you have arranged a POA prior to your loved one losing capacity then once they lose their informed decision making ability the POA is invalid ... what you need is a LPA (lasting power of attorney).
Its worth making sure you have the correct one in place beforehand.
Yes, LPOA/LPA in place, I've just used POA out of habit.
This is something I've been dealing with for the last few years. Dad had multiple dementia, but fronto-temporal was the nasty one with huge criticism of mum and general viciousness. He went last summer and it's freed mum up to live her remaining years. But now she's starting to physically fall apart so the challenges are different.
One thing I did notice above was:
sorting out their 40 + yr old bathroom with an over the shower bath
Now THAT sounds awesome.
Pics please?
Rich_s ... Assuming it's a privately owned hone. I'd advise (with consent from your mother) contacting social services to request an OT assessment if you feel need for home adaptations ... There are various free grants or loans available for the bigger jobs like shower rooms.
etc