Reply With QuoteHi Menno,Originally Posted by thieuster
Yup through the website to our, now temporary, flat in Centraal Haarlem! From next month we are moving to Vogelbuurt in North Haarlem! Yup, Dutch property owners
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Took my Mum today. Couldn't remember she'd been asked to remember an address.
On the plus side her score was the same as last time.
Memory clinic bit pointless TBH.
Hi Menno,
Yup through the website to our, now temporary, flat in Centraal Haarlem! From next month we are moving to Vogelbuurt in North Haarlem! Yup, Dutch property owners
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Thanks to Menno for posting these and the pm, top man.
Good idea asking for postage to the UK, I'd already written to, and have subsequently spoken with, the UK Alzheimer's Society to suggest they consider liaising with the Dutch org and selling a few through their online shop.
Just a heads up - the Alzheimers Society have switched their focus to research from support and assistance. A worthy cause, but worth noting in case folks think the monies are going to support and assistance.
When you look long into an abyss, the abyss looks long into you.........
A Dutch factsheet tells that 1 in 3 women will get one sort (form) of Dementia, for men it's 1 in 7. No wonder a lot of us here have those sad stories about their parents. In the Netherlands, dementia is #1 cause of death! Sadly, it's even higher on the list than heart problems and (lung) cancer! I'm guessing that this sort of numbers is the same in the UK.
In Dutch, so it's not really useable here, but nevertheless a link: https://www.alzheimer-nederland.nl/f...-over-dementie
M
Yep, but in the U.K. it’s still, very often, misdiagnosed or undiagnosed for years.
My mum went very slowly from a mild mannered granny to a ‘Sweary Mary’ wandering the streets accusing her neighbour of all sorts of abusive behaviour. As we were not local to her it was managed, for a long time, by a nice young PC and my Mum’s GP. It was only after my Mum’s GP saw her ‘morph’ into the nasty nanny in front of her we got help, albeit too late, we had to have her sectioned and evaluated. Unfortunately for her vascular dementia can be treated in the early stages, but it was too late, within a year my Mum has regressed to her ‘safe zone’, which for her was in her early motherhood at age 19 and I was now my recently deceased brother as I wasn’t born yet. This lasted another year, then she descended further into demented behaviour only to pass away from a perforated bowel as she had stopped eating and drinking, and the home couldn’t force her to do either.
‘I struggled as I was the youngest, so had the most 1 on 1 time which ran right through to her last years, she would spend weekend with us and her and my son were like two toddlers at times, giggling and conspiring about nix!.
Looking back I can now see the signs as much as 5 years before it got out of control, but, of course, Mum wouldn’t have listened, to get her to ‘react’ for the assessor her social worker and I had to engineer a ‘situation’, this was the worst moment of my life, tricking my Mum into getting shouty, just so they would ‘lock her up’, albeit in her own interest.
‘Please, be honest with each other at home, if you see a change in a loved one, remember, those hoofs you hear are likely to be horses, but they just could be the Zebra of Dementia too.
Last edited by robcuk; 5th October 2019 at 18:55.
My gran had Alzheimers. She passed in '91, so may many years ago.
It's heartbreaking. More so in the middle stages than at the beginning or the end.
In the beginning, it seemed to manifest as forgetfulness and absent mindedness. You're dealing with the same person, the disease doesn't really inhibit them.
In the middle stages, you can see the distress it causes as your loved one struggles with daily tasks and gradually loses their 'self'.
Towards the end, your loved one has mostly gone. They don't seem to know any different. With the odd random moment of lucidity thrown in just to tear at you and them.
As for timescales, I don't remember I'm afraid. It seemed a slow process, but I was a young man. Time passes more slowly for the young.
It's a horrid horrid disease, I'd take anything else instead. You have my deepest sympathy. I'm off for a cry now.
Just to say thank you to Menno as I now have several pairs of Dutch Alzheimers Society socks tucked away as Xmas presents. Top man and very much appreciated the offer/effort involved and that they arrived so quickly.
I've had an email exchange with the UK Society and they've confirmed they'll look into whether to stock them in their online shop.
My Mum's in the middle stage, very much as you describe it.
It's beyond sad.
I just came back to this thread with sad feelings
I posted before re my mum - sadly she passed away at home in September last year with dad my brother and I around her which was a real comfort that she was with us all
I reminisce, sadly on the eve of my fathers funeral- he passed on the 4th of this month of a heat attack at just 75 - Mum and dad reunited once again x
So sorry for your losses
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Some really good advice on here and thank you.
Myself and my sister are currently coping with my Dad having mixed vascular dementia of the brain. We noticed his behaviour change and memory loss around 5/6 years ago, he got diagnosed back in 2021.
We have sorted the POA and took his cars keys from him. We noticed that confusion and memory loss was becoming more apparent, which would cause my dad to become very frustrated.
In the last couple of months my sister decided to look after dad as he was clearly struggling at home on his own and have him live with her. After a few weeks the rapid decline in his behaviour was clear to see, trying to escape, blaming her husband of threatening behaviour and found stool samples on the kitchen floor, we decided to ring for support who advised us to call the emergency services, who then sent us to A&E.
10 hours of waiting around we finally got seen to, they tested him to see if he had any infections and a CT scan which they found nothing to determine the sudden decline. He then got sent to a unit where they could assess him. A few days later they said it was the wrong unit to look after him and he’d need to be transferred to a specialist dementia unit.
They transferred him the following day to this specialised unit (Oasis Unit) where we thought they would start to do tests and try to understand his current decline. We had a consultation with two nurses 3/4 days into his stay who told us my dad is not fit to live on his own anymore as he’s in the later stages of dementia and will need to be kept in a secure unit as he’s shown aggression and trying to escape on every opportunity. We got advised that there are only 2 units in the Rochdale area that will be able to support dad and they have said that the cost could be £7000 per week! Yes that’s right, £7000 a week however as he needs to be assessed this will be funded through the NHS. We got told that the care manager would assess my dad to see if they would take him in their home. Out of the two care homes, one didn’t get the funding accepted and the second one got approval.
When we found out about the home we did some research as you hear some horrible stories, it didn’t start well as Google review had a score of 1.3 out of 5 and some of the reviews left was concerning. We got told by the two nurses that it’s not good for anyone with dementia to keep moving as this could make him worse they also told us that he will be assessed in his placement which ideally would be upto a month to see what his conditions are like. What was more concerning for us is that we got a phone call from the hospital to tell us that they moved dad the previous night to his new care home without our consent.
When we found out we drove down to visit him straight away, if I’m honest the first impressions wasn’t great, understaffed, unkept, worn down building and without being disrespectful no one spoke clear English so it was difficult to understand how he’s been and was hard to communicate with the staff. My dad has been struggling here, he’s deteriorated more, not eating, drinking and refusing to take his medication. The home wasn’t aware he’s come here to be assessed and wasn’t away that he was coming. It’s like the hospital hasn’t communicated anything to them. After a week we got to know the staff and i knew they wanted what’s best for dad which eased my anxiety about him staying there. This has all happened in the last 4 weeks.
The nurses have been increasing worried about dad. They decided to call the doctor and the doctor have insisted that he goes back to A&E as his vital signs are a concern. The ambulance came for him yesterday and took him to A&E, another 8 hours waiting they told us the same thing as they did a few weeks earlier to tell us he needs to go back to the oasis unit in Rochdale.
So today I’ve visited him back in the Oasis unit. The staff were baffled and lacked any empathy towards us and if I’m honest I feel like we are getting no support and back to square one. It feels they can’t wait to move him on once again when it was them who told us that that would make his dementia worse. It’s been a difficult day today as he’s been trying to take his clothes off and decided to pee in the corner of his room, it’s so hard to get your head round this is happening to your dad.
Sorry for the long post and I hope it all makes sense, I’m trying to find anything that can help.
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Last edited by Kippax; 31st December 2023 at 12:30.
Terrible time and you really have my sympathy.
My mother died with dementia but fortunately she remained smiling and nice to everyone 'til the end so the staff remained on board. She only spent her last two days in hospital.
The only consolation I can offer is that by the time she reached that advanced stage she was not aware of her condition anymore. She only remembered my sister's, my daughter's and my first name.
However, for you and your sister it's hell. I do not like how this is going to read, and I hope you do not take it the wrong way, but I wish for all of you that the situation comes to an end soon.
'Against stupidity, the gods themselves struggle in vain' - Schiller.
Kippax, I offer you sympathy which isn't much use, but the fact that you posted is signal that you yourself need to get as much support as you can.
From a dispassionate viewpoint it doesn't sound as though you or anyone else can have much influence on your father's health pathway. Yet I would advise that it is imperative that you and your sister don't lose sight of your own needs for support. It is imperative that you stay strong and focussed as much as you can.
I have no familial contact with this terrible disease but I was closely involved as voluntary carer with my two next-door-neighbours, both of whom succumbed to it. I wouldn't wish it on my worst enemy.
Poor Joyce went from being everyone's ideal image of a granny to being locked up in a secure unit within the space of a fortnight due to vascular dementia. Frightening.
Maybe not for your father, but for you less stressed times do lie ahead; you just have to hang on in there until the calmer times arrive.
You have my complete sympathy.
My mother has both Parkinson's and lewi body dementia, and as terrible as it sounds, it's a relief she can't walk as she would be escaping at the first opportunity to "go home" or to go see my gran, who died in the early 90's.
There's no other word for it, it's hell for carers in the family but I can't imagine what it's like for the person. I would rather have a heart attack than slowly crumble like she is.
Regarding the NHS I can only speak as I find. Compared to the A&E type workers who fix you, the staff involved are completely useless and incompetent. They have moved her between care units 3 times, in the end we intervened and I doorstepped him at his car. My BP at the time was 170/120 and I was getting fobbed off. He is unavailable after 3pm and before 10 and 2 days he's doing private work. It makes me so angry I was shaking.
We also had to tell them what medicines to give her as the UK treatment plans are way behind other nations, and I honestly think apart from striking and counting their 6 figure salaries, I don't know what they do.
The physio came out once, said he would get her a riser chair and it was there wrong size, they never called back so we just bought one. Apart from a folding ramp they haven't done anything. They promised her a wheelchair but nope, I got one from my mate who's dad passed away.
One time her tablets got spoiled and we needed an emergency prescription. We rang the dedicated clinic, who knows maybe 50 times, and got an answer machine saying there's noone here to take the call, DON'T leave a message.
Sometimes you think it must be bad luck, but every (and I mean every) time we deal with them something goes wrong, or nothing happens that they promised to do.
If she didn't have the family around her she'd be dead by now I'm sure of it.
Really sad reading through this thread. Everyone impacted has my sympathy. Really puts things in perspective.
This is a painful read my dad suffered from dementia in the last years of his life and it’s a cruel existence, my heart goes out to those families who are going through it,
I’m pretty shocked that they are charging £7000 a week for what sounds like not very good care, someone is making a good profit on people’s suffering
I can only speak from personal experience.
My mum had vascular dementia for a long long time. Maybe 10-12 years. Eventually she had to go into a care home.
I remember , when she first went into one (bear in mind, I live in the "deprived" Rhondda valleys) the cost was about £700 a week...This must be about 12 years ago...My mum had her own house, of course this went to provide for her "care".We put her in the "best" home we could find....None of them were great...some were terrible. I appreciate the carers, are low paid, and they work 12 hour shifts, also the level of carers to patients, was ridiculously low...
The place wasn't great at all. The "nurses" they had working there? I just couldn't get my head around that at all? There was only ever one "nurse" on duty at a time. This was to take care of probably 50 patients..District nurses used to come around to change the patients dressings etc? Why the resident nurse couldn't do that? was one of the things I couldn't understand.
As for hospitals? I honestly think, when a person has dementia/Alzheimer's the core in hospitals isn't great at all. I understand the patients often cant talk, or when they do , they make no sense at all...even so, the lack of ? Dignity, at many many times was non existent.
Its a horrible disease, terrible and heart-breaking to witness. I'm sorry to admit, one time my mother was in hospital for both pneumonia and sepsis, the docs said it was very doubtful she would survive the night....I was hoping she wouldnt....she did,
She eventually died. in the care home, in her bed (my sister and I were with her at the time)..heartbreaking to witness, but Im glad I was there, for years she couldn't even speak. or walk etc. come the end, she couldn't even drink. She had to be "fed" water on a teaspoon with some sort of "thickener" added..( I remember being told years ago, by some consultant or specialist, that the swallow action, was the last thing to go?..)
Im not knocking the NHS or the carers etc...its just the system is pitifully useless. I guess the carers and hospitals etc, do their best....they are just woefully understaffed, undertrained (in case of some "carers" and "nurses" in the care home).underfunded etc etc etc....As we are all getting a longer life expectancy, things aint going to get better,
In my humble opinion, the whole system is beyond repairable...God knows whats going to happen. I cant see any government, being able (let alone willing) to attempt to fix it...Maybe a few sticking plasters here and there..
Sorry if this post comes across as me sounding like a moaner or whatever. As I say, its just what Ive seen in my own mums case.
You hav to watch...
What a heartbreaking read. I am lacking the words to describe my feelings properly.
Any society that doesn't take care of its elders is lacking at its core. This is about dignity, respect and basic human rights.
Wishing everybody only the best.
Someone who lies about the little things will lie about the big things too.
Sombre reading in that post Kippax, you only have my best wishes.
In our experience, my Dad was diagnosed with vascular dementia and Alzheimer’s ten or so years back . We didn’t really use the support network as my Mum became his primary carer. She did everything for him and I know she would shield any of the family from the worst behaviour. Thankfully, my Dad died from an unrelated illness before the dementia took total control.
The problem is now that my Mum has got it and the decline in her mental health has been very very quick. From being a little forgetful to the stage she is at now has been frighteningly quick. She is living a good way from the family too which makes her situation far more problematic.
On the flip side of this, I can honestly say that the care from her local authority (Flintshire) has been second to none. The doctors are always available, she has mental health assessments regularly, there are care workers in twice a day to help her with medication and to make sure she’s eating/showering etc. The staff have been amazing. They are in constant touch with us , they’ve helped fill in the Attendance Allowance forms and have generally been a shining light . I can’t speak highly enough of them and Flintshire council.
It’s helped Mum stay in her own home , although I expect them to recommend moving her sooner rather than later. That’s a bridge we will have to cross when the time comes.
Dignity and respect is horrifyingly what these conditions take from their sufferers, which makes them very vulnerable to the loss of their basic human rights. The UK Care system itself relies on modern slavery to plug the gaps in staffing, slavery is reportedly now a ´´feature´´ of the Care sector, reported cases increasing ten fold since 2020!!!!
It´s a crapshoot. Society?
My Dad looks after Mum at home still, well they´ve been together since age of 14, he´s basically indomitable but it´s taking a toll and he´s of a mind set that won´t be it´s own advocate, he´s embarrassed to be in need of further assistance and trusts the Dr. to do-know what's best. As far as I can make out, it´s still only telephone appointments. Infrequent at that. The ´´Lady´´ who visited them from one of the charities, pre covid this was, who he liked unfortunately retired and her replacement hasn´t been along to introduce herself.
I´d bring them both out here and hire someone with experience to come in and help, be a damn sight cheaper than in Blighty, but Dad simply won´t have that. Plus post Wotsit there´d be the length of stay issues.
Last edited by Passenger; 31st December 2023 at 13:04.
Kippax,
I have been going through a very similar scenario as you and your family. During a spell in hospital due to worsening vascular dementia, Dad was being aggressive, urinating everywhere, innappropriate behaviour, confused and anxious constantly. My Dad is now thankfully in a care home and is eventually settled after being there for 6 months. The first couple of months he was very difficult for the staff to handle, calls for me to go across and calm Dad down etc. The best help and support I received was from our local Community Psychiatric Nurses, they assessed Dad and liased with social services, care home, hospitals etc. and genuinely had Dad's best interests at heart. He wasn't signed off until the CPN was happy he had settled and his care plan was being correctly followed. Fingers crossed my Dad is now relaxed and "happy" where he is now, above all he is safe.
Insist your Dad's GP refers him to the CPN team and take it from there.
Hope the situation improves from where you all are at the moment. PM if you want any further info.
Good luck and take no shit from the system.
I’m sorry to read this, my own father died a couple of years ago with Dementia. My first impression of the nursing home he was initially sent to was poor, I kept telling myself that it couldn’t be that bad but it was. I frequently couldn’t even get the door opened to me. Care assistants on the desk chatting away on their mobiles in their native language while bleeps and internal phones left unanswered. Filthy kitchen area. He was eventually transferred to another home locally where things were much better. Then Covid came and at the same time he deteriorated and was moved to a superb facility for dementia patients where he eventually died, just a shell of a person really.
We weren’t that close and I was quite detached but it must be unimaginably difficult seeing a loved one in that state.
I hope you can find good care for him
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I find myself in a similar situation currently with my wife’s father. A strong intelligent man a few years back, now almost finished by this horrible disease. She’s in the hospital with him as I type this, I think this will be the assessment that sees him into care. The decline in the past six months has been so fast it’s almost unbelievable. Wish anyone dealing with this the best.
My sympathies go out to everyone on this thread, especially those caring for someone in their home. My Dad escaped dementia, but the lung cancer travelled to his brain, ruining his balance. He wanted to be independent and be in his home until the last, but the problems with balance meant that he ended up bed-bound, then eventually into the hospice to die some weeks later.
Get what support you can for yourself as well as your relative. I thought that I could tough it out, but ended up in a long and deep depression afterwards, always blaming myself for not doing more for him, when realistically I did all that I was able to.
The vast majority of NHS staff do their best despite the best efforts of governments to break the system in the hope that there will be more profits to come their (personal) way from private healthcare providers. The last thing that we need is a USA style healthcare system.
We are all living longer, often due to public health campaigning messages getting through. With longevity comes the higher risk of morbidities such as Alzheimers, TIA and cancers.
For anyone in a similar position, the only constructive point that I would make is that google reviews don’t constitute effective research. You want to be looking at the Care Quality Commission (CQC), or RQIA in NI.
Like everything in life, there are exceptionally good levels of service offered, and exceptionally poor. It’s heartbreaking that the latter is the case, but here we are. I wish well to all those affected.
Absolutely, and I'm very sorry to hear of the personal toll that your care has taken.
They really do; a most challenging job done with care, skill, alacrity, often love, and generally under-recognised.
And a mendacious failure across the political spectrum to level with the electorate about the cost of the degree of care to support the longevity that we thinks we want, allied to a failure across the medical sector to level with the general population about the negatives that can attend the pursuit of interventionist longevity in absolute terms.
My sympathies go out to all whose lives are touched by this condition.
I found with both my mother and my mother in law suffering from Alzheimer’s (and both succumbing with it in 2023) that the phase of moving from an independent life to a home is just heartbreaking to witness.
The first few weeks, irrespective of how good/bad the institution is where they end up, are horrible and degrading. But realistically there is no option.
My 90 year old dad tried his best to care for mum as long as he could but eventually it was taking a massive toll on his health just keeping her going. Care home was realistically the only option and you have to be lucky with both the home and the staff.
In the end my mum died with her husband and two of her sons at her side. It was deeply moving and sad to see but in the end also a massive relief that she was relieved from the indignity that her life had become.
Treasure the good moments and help her through the tough times. You can’t do more than that.
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Christmas evening 2023, in my living room with a parent who has no idea who I am, where she is or even what day it is. No friends or family to help, poor weather and nothing to do but watch Christmas tv in virtual silence. There's no right or wrong way to deal with these situations, we each simply play with the cards we are dealt but I absolutely empathise.
My mum is in her 90s, still lives alone, can get up and down stairs without problems, etc.My Father-in-Law has just been diagnosed in his late 50's.
... He is basically convinced that it's as good as a death sentence and my only expernence of it in the family was precisely that - diagnosis then a short decline and then the end.
We're all very upset and confused and not sure what to do. We're meeting with his doctor (apparently) in the next few weeks.
She, though, has trouble remembering a conversation from 30 minutes ago.
She's been slowly getting worse over the last 5 years and, aside from the forgetfulness and occasional tantrums, is showing little sign of any physical decline.
She did have a spell of dizziness back end of 2022/early 2023, which was finally identified as low blood pressure due to tablets she'd been taking for years for high blood pressure, but all her other tests showed her as remarkably fit and healthy for a woman of her age.
What I'm trying to say is that dementia doesn't necessarily lead to a quick physical decline and end. I have a friend whose mother doesn't even know who she is anymore, but is still very physically healthy - In many ways that's far worse.
My mum lives in Dorset and for a long while her local surgery were totally useless (After a great doctor retired and the practice was taken over by another), but in the last couple of years, they've been incredibly responsive - The biggest problem I've had has been getting my mum to realise the fact and actually ring the doctor - Usually she just moans about things to me and I contact them and then something gets done!
M
Last edited by snowman; 3rd January 2024 at 17:02.
Breitling Cosmonaute 809 - What's not to like?
I am really sorry to hear this. Reach out for that support is my best advice.
Unfortunately I've found that there's little to no support out there, especially in our area, probably in others. I think the difficult part for anyone offering support is that it's straight forward enough to help with cooking, cleaning, shopping etc but very difficult to help with mental health support. It's subjective and not really quantifiable so extremely difficult to budget for from a medical services point of view.
from a personal point of view and I'm sure that you can follow this, it's so all consuming and stressful that although I know (think/believe) I can cope with the pressure, my concern is when the inevitable happens and the stress is suddenly relieved. I can imagine it being like an elastic band snapping which is possibly where the depression kicks in?
You need to take breaks away from the home. Have you spoken to your GP and mentioned that you are a full-time carer? There is a Read code that can be applied to your medical record to say that you are a carer, and another that can be applied to the supported patient's record.
Up here in Shetland there is supposed to be good support for carers. I have never needed to access it myself so I can't confirm that, but I have heard about coffee mornings, awards/functions and even respite for the carer. I am assuming that the Health and Social Care arm of the local council provide someone to stand in for you, for a few days, a week or even a night so that you can get some proper rest.
Caring for a fiercely independent person 24 hours a day is the hardest job I have ever had, and you're right with the elastic band analogy. For me, and for Dad, it was a blessed relief when he passed. He was a shell of the man he once was. Drugged up on morphine. He had asked me to "help him out" at one point early on after his terminal diagnosis at the age of 58. It's difficult to see someone suffering like that, who then makes a request of you, which you have to say no to.
The day that the hospice doctor told me that he was unlikely to make it through the night I knew he would get his final injection. The hospice rang me in the morning to say that he had passed away. I just felt empty after 6 months of almost 24 hour day caring duties. I then had to busy myself sorting out his estate, and when this finished was when I went downhill. I should have got some bereavement counselling, but it's not something men do.
Do what you can for them, but don't beat yourself up, after they pass away, feeling that you could have done more. We could always do more. We just did what we felt was right at the time.
Morning Kev and so sorry to hear about your FiL.
I'm going through Vascular Dementia with my Dad, he's 76. There has been some great advice in regard to health and wealth management. Speak to Charities as well for additional support and insight.
We noticed in 2020/2021 some behaviour with my Dad that was unusual, asking repetitive questions about things you'd covered 100 times. This gradually got worse and in Dec 2022 we got an official diagnosis.
The surprising thing for me and most of the family is the speed of change in his short term memory. One of the best analogies I've heard is to think of their brain and memories as a set of bookshelves. The lowest bookshelf is the most recent memories and the top one are those deeply imprinted memories, such as childhood, teen years and their late 20's and early 30's. Annoyingly there will also be personalities that imprint on them more than others....
My Dad has gone from being reasonably good at outwardly appearing normal to now being at a stage where all of his short term memory has gone, retention of any information here and now has gone and cognitive & reasoning is significantly affected.
He will tell you all about his childhood, younger years and some interesting characters but that's about it. The change has been unbelievable, he's a shell of his former self, stays in bed till lunch time, refuses to take any exercise etc.
Make the most of what you have with him, we now tend to kick start conversations around aspects of his life he remembers. Changes in him and his ability seem to come in 4-8 week waves. It's sad to see a once driven and highly motivated individual transformed in to a shell of his former self. Regarding family and you MiL you need to be direct and help them understand and see the changes and understand the pathway or journey now, before it is too late!!
I see my Dad every weekend, it's a 400 mile round trip, my brother's done it 3 times in 12 months. Each to their own I guess, he didn't think he was that bad at the beginning of 23 but was staggered by the difference mid 23.
Good luck with it all, you've got some difficult conversations to be had. Balancing reality with kindness is extraordinarly difficult with Dementia, it is not a kind disease. Make the most of the time now!
Paul
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I've learned that's easier said than done. The GP knows our situation, we've actually seen two at the same place and it very much feels like they want to make sure that everything is ok physically speaking but have no interest at all in the care situation / mental health side of things. When we saw the practice nurse and mentioned social services, there was a distinct amount of eye rolling. One thing that has very much surprised me, at no point has anyone asked to speak to me separately from my mother. Of course, no son who cares about a parent is going to sit next to them and describe how tough the situation is. The parent might be aware but there's nothing they can do about it. All it will do is make a bad situation worse. If the patient and carer are talked to separately, at least a full and frank conversation can be had.
If they don't talk to carers as well they soon learn that they are dealing with two "problems" instead of one. Sadly our health and social care system is in a dire state. I think that we are luckier in Scotland, well Shetland anyway. Cuts to NI payments won't make it better either. The magic words might be "I am really struggling to cope and might not be able to go on much longer".
Care homes are being bought up by venture capitalists, which isn't helping matters. The root of the care problem is that staff in care homes have a really difficult job and are poorly paid for it, yet patients are paying a small fortune for the care in the case of care homes in the private sector. My partner's Dad, who had dementia, was in a care home four years ago which cost £1,000 a week. For those caring for relatives in the home there is almost a complete lack of support. Weekly carer's allowance won't pay for the carer to buy in someone to stand in for them, not even for a night.
Rings very true. Social services would visit and my Mum would assure them she could prepare her own meals, was not incontinent etc. Very difficult to contradict her, best I could do was to surreptitiously shake my head where possible.
Everyone we had dealings with: - social services, NHS (hospital, nurses, occupational health), Alzheimer's Society etc were pretty useless if not downright incompetent.
this is very opportune, thanks to all who've posted. my stepfather has just been diagnosed with Alzheimers. Strangely they shared this diagnosis with me and my sister, but not with him. Naively we had almost been wondering if we might spare him this awful news. But it seems clear that while he still has capacity (hes still at the 'forgetful' stage) we need to put all the cards on the table and get the LPA in place. He's 85 but physically still pretty fit and active so could be a long road ahead.
Couldn't agree more. Years ago, before I had any experience of people with dementia, I used to see Dragons Den advertised with Duncan Bannatyne as one of the dragons. Apparently he made his fortune from care homes and I imagined that the only people that benefited were him and his investors (or possibly just him?)
I find it very odd that the diagnosis wasn't shared with your stepfather first. The system tries to keep as much independence as possible for those with dementia, even down to the fact that they're still able to vote which I do find slightly odd. In our case, the NHS letters are all still sent to my mother and usually the letter mentions that it's advisable for them to have someone accompany them when they come for tests, group meetings etc. Are you sure that he doesn't know?
I can see why you might wonder about keeping the diagnosis quiet but I wouldn't. It's a tough enough situation without secrets and it's not a situation that gets better. Everyone reacts in different ways to the diagnosis. As has already been mentioned you just have to go with the flow and there's no right way to deal with it. Support is everything which is why I think that it's best that everything is out in the open. You might not get the support that you want or need but you definitely won't if people don't know.
Just as a small bit of advice, if he's still physically fit, consider looking at tracking devices (readily available including on the Alzheimers Society website) and also fill out a Herbert Protocol form for your local police. Depending on where he lives and whether you trust the area, possibly mention it to his neighbours etc. (eventually). As he's physically fit and as the Alzheimers gets worse he might be likely to wander and possibly lose his bearings.
yes he definitely doesn't know, he's refused to see a doctor for at least a decade. was admitted to hospital over xmas due to acute flu, but the consultant geriatrician there assessed him and the nurse told my sister. that diagnosis hasn't even reached his gp yet.
thanks that advice about the tracking device is spot on, after reading this thread i was wondering about that. i suppose the issue is making sure he carries it! (he's always refused to carry a mobile, and forgotten it whenever we tried to push one on him).
My late Dad suffered with Dementia.We experienced some funny moments in the early stages but coming to the end was far from the early times.
The funny after the events were him travelling to Blackpool on buses! for the day, on returning home very late and saying to 2 Police officers,"What are you doing here!".
Happened a good many times.
The worst times were the awful things He would say about Mum!,and I mean some really awful things,apparently this was a typical part of his Dementia.Many times the Police had to be called and on occasion was sectioned,very difficult and sad to see our Dad in such a vunerable and control of his life and actions taken from him.
His health declined pretty rapidly once the Dementia was at its worst with times sectioned and or hospital.He had a fall at home during Covid and had to go into hospital,checked enroute for covid which was negative.Got a phone call a week later saying He now has covid and they need him to go home!.I said my Mum cannot have him home with covid as She too was ill & vunerable still is at 91.
So after a week they put him into a local nursing home on the Saturday afternoon,unbeknown to them it turned out to be the same nursing home my Grandma & Dads mum died in at 93.We got a phone call at 5am Sunday morning,Dad was also 93!.
Dad was Gone.....RIP Dad.
Last edited by P9CLY; 7th January 2024 at 23:23.
My heart goes out to those of you facing such difficult circumstances and decisions. I lost my parents at 22, so won't face these issues - but not the better option. I do visit an old lady weekly who is now in a nursing home, £2k pw is the new norm (and I thought £1k was ridiculous).
In my experience, hospitals and GP's don't talk so I would make sure that his GP is aware of the situation. From personal experience after having blood tests at a hospital and then the local GP asking to take them again and I asked why, the hospital took them. The reply came back that the hospital don't share - data protection apparently?
totally understand about the tracking device. You do tend to find as the condition worsens that they stay with what they know which might come in useful, slipping a device in a pocket of a coat or buying something nice with a device attached that they'll get used to wearing. I did drop a hint in a local group about Apple air tags to which the instant reaction was that you're not allowed to use them to track people followed by, oh heck, why not.
A local home that I contacted purely for information and nothing more told me that the majority of their rooms are private and not NHS funded. It seems a nice enough place but can you imagine having to spend £8k per month of your own money to provide a room for a relative. I realise that the majority of those will be using money from a house to cover it but it does make you wonder about all those people who don't have access to such funds and that the tax payer will be covering the costs - which will still be high despite them no doubt living in less than adequate accommodation.
A very sad thread - I am honest with people that I feel my mum died in 2019 and her body caught up in 2021.
I can relate to that Alan.Dad was no longer our Dad for a good few years before He passed away.
My wife was a carer for many dementia sufferers over the years and her mantra was always “we can go into their world but they can’t come into ours”. So many times she’s found relatives and friends telling their loved ones they’re wrong and trying to convince them otherwise, causing so much upset and anger.
She would just tell them to join in, in the same any you’d go into a child’s world when they conjour up some imaginary situation.
We’re currently paying about £4k per month - out of savings - to house Bea’s mum in a care home in Tenerife. Thank god she’s not suffering as per this thread, but we’re well into three years now and the cost is having an impact.
It's certainly an eye opener. I wonder what percentage of the families having to cope with dementia have access to that level of savings. That's not a negative comment to those who can afford it, more so a consideration to those who can't. If the 'system' doesn't support them then I guess it's left to relatives to support them at home. Imagine if that person with dementia has no family, doesn't bear thinking about.
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