FabGuys.com forum: Dementia is crap

By (user no longer on site) OP
over a year ago

My dads had it for 3 years now , I’ve fallen out with my family because of it , anyone else got or had a similar situation.

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By (user no longer on site)
over a year ago

It is tough for the family especially.

My ex now missus used to work in a care home with dementia sufferers. Needless to say I made her change her career as it was wearing us both out.

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By *trathmoreMan
over a year ago

dundee

I lost both my Granny and Grandad to this horrible disease. It is heart breaking to watch those you love die slowly every day

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By *rince Albert 101Man
over a year ago

Yeovil

"It is tough for the family especially.

My ex now missus used to work in a care home with dementia sufferers. Needless to say I made her change her career as it was wearing us both out."

I used to be a carer. It's hardest on the families who had had no training. Especially towards the end when the refuse to eat and become violent. The sufferer doesn't reconise their families and the families don't recognise who the sufferer has become. All you can do is just try and make their lives as comfortable and peaceful as possible.

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By *enchesterMan
over a year ago

Chester

My partner was 22 years older than I, but that was never a problem. When he was 80, I started to notice slight memory loss, and this developed over the years. He died nearly 3 years ago at 86, the last 2 years of his life in a care home. It was heart breaking to watch him decline but I am glad that I could help him all I could.

Even through the illness his lovely character shone through. I'll never complain about looking after him for the last few years, because we had 32 great years together.

To see somebody that you love slowly loose their mind to this horrible disease is terrible.

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By (user no longer on site)
over a year ago

Yes my gran had it for the last 2 years of her life. It was horrible to see, i became bitterly resentful and angry. Each day would be collecting soiled clothing and taking fresh in with little thanks. Like many she lived in the past, so did not know us and was fixated on the toilet. Crying out to go on constantly.

Watched her waste away to 4 stone.

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By *reme1Man
over a year ago

dursley

Yep, i nursed my grandma from start to finish, unpleasant, humiliating and down right shit! Honestly wouldn’t wish it in my worst enemy!

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By (user no longer on site)
over a year ago

I dont want to start a moral argument but even a dog would not be allowed to suffer what my gran went through. Its just so awful, wish you all the best

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By *etmepants offMan
over a year ago

dartford

A truly horrific disease. My mother had it and lived with me for the last 4 years of her life. Often she never knew who I was which was not easy to deal with. Mentally caring for her draining but I've no regrets.

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By *etmepants offMan
over a year ago

dartford

"I dont want to start a moral argument but even a dog would not be allowed to suffer what my gran went through. Its just so awful, wish you all the best"

I agree with you 100%. My mum would never have wanted to suffer like she did

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By *ortheastlad23Man
over a year ago

town

"I dont want to start a moral argument but even a dog would not be allowed to suffer what my gran went through. Its just so awful, wish you all the best"

I totally agree! When you have no quality of life left or your terminally ill you should be allowed to make your own departure from this world!

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By (user no longer on site)
over a year ago

"My partner was 22 years older than I, but that was never a problem. When he was 80, I started to notice slight memory loss, and this developed over the years. He died nearly 3 years ago at 86, the last 2 years of his life in a care home. It was heart breaking to watch him decline but I am glad that I could help him all I could.

Even through the illness his lovely character shone through. I'll never complain about looking after him for the last few years, because we had 32 great years together.

To see somebody that you love slowly loose their mind to this horrible disease is terrible. "

Oh man my heart sincerely goes out to you and all who’ve experienced this.

My nana died with it and the impact on us as a family was truly devastating. She knew who we were but her behaviour particularly towards my mam - whom she had the most wonderful relationship with - changed. She was really mean to my mam who was trying so hard visiting her each day, making sure she was ok, had everything she needed etc.

She would have this vacant look on her face as though the life and personality had just been gradually sucked out of her. She’d be confused and would go to bed with her nighty on but would have forgotten to take her daytime clothes off so they’d be on underneath, she’d convinced herself my mam was trying to poison her so wouldn’t let her make her drinks.

It’s just the worst illness imaginable. It’s so cruel.

My heart is with anybody going through it

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By *AIRY BEAR999Man
over a year ago

BRAY

My Mother had Alzheimer's for 11 years totally horrendous watching her change in personality from an outgoing lively personality to someone who did not speak one word for the last 2 years of her life.

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By *ilbo bagginsMan
over a year ago

St Helens

"My dads had it for 3 years now , I’ve fallen out with my family because of it , anyone else got or had a similar situation. "

Mum had it for 7 years before she succumbed. When she had a good day, it was a bad day because on a good day she knew what was happening which made it a bad day.

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By *nalAngelTV/TS
over a year ago

Droitwich, WORCS

I lost my father in November just gone, and although he was not diagnosed with dementia, all the symptoms mentioned here were being shown by him for getting on 4 years prior to him passing away.

He was 93yo when he passed, but for the last 3 or 4 years of his life he became someone i didn't recognize as the man i called my father he would call for me and say there were people in the room even though the front and back doors were locked, and no one except the two of us were in the house. He would item sit in his chair looking vacantly in front of himself, at times he would accuse me of doing things i had not and would never do, . He was never violent, just arguemetitive alot of the time, to the point that i would be crying uncontrollably from frustration than anger. Towards the end, i would say the last 4 to 5 months of his life he was having problems swallowing food, and would often be sick after eating, which meant he lost alot of weight. And right towards the end he refused any food and even water effectively killing himself slowly right in front of my eyes. It has devastated me and i struggle to want to stay around on this earth every single day. There isn't a day i wonder why i bother to stay alive, and am slowly building up a stock of morphine pills so when i feel the is right, i can take those along with the tramadol i take for my bad bac, and i can do the job right.

Dementia not only kills the person who has it, it destroys those closest to them and who love them the most. I have no faith in what ever passes as a god, as ive witnessed one of the cruelest ways a person can die right in front of my own eyes. For me it truely was the longest goodbye to one of the two people who mattered the most to me in my life.

The only good thing i can say is he passed away at home in his own bed with me by his side, which I promised him many years ago, so at least i kept my promise to him right yo the end.

Other than that i am simply living hour by hour, day by day, as my life has no real meaning any more, and if truth be told, i dont really care what happens to me anymore.

Anyway that's my experience with this vile disease, that's devastated me totally and utterly.

A disease that I would not wish on my worst enemy.

Donna Marie xx

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By *ndy61hMan
over a year ago

Plymouth

My father (92), has a form of dementia, his short term memory is terrible, but his long term memory is great. He still manages to live at home alone, but has a carer come in each day, to make sure he takes his meds, is dressed and clean, make a meal etc..

He lives over 200 miles away from any family members, so we don't see him much. I went up and spent Xmas with him, he loves golf and cricket, so we spent most of Xmas watching repeated cricket on Sky. When the family rang up on Xmas day, he told them my brother was with him for Xmas.

After I returned home, he told everyone he had spent Xmas alone.

I tried to get him into a home, closer to family last year, and he had agreed. Then his carer said he had changed his mind and the rest of the family accepted that.

I see him change whenever I visit.

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By *atureTransTV/TS
over a year ago

Waterlooville

I recognise all that has been said in this posting; as I am a carer.

All the comments are correctly very negative and pertray the affliction as a horrible thing to happen to a loved one.

it is not only the person with Dementia that suffers; the family does too.

Please when you see someone that may well only be in there sixties, seventies or younger; apparently behaving in a strange manner. They may well be suffering from Dementia. They are not stupid or are an old fool; they are ill.

So please treat them with compassion.

One day you might be in their shoes.

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By (user no longer on site)
over a year ago

"I recognise all that has been said in this posting; as I am a carer.

All the comments are correctly very negative and pertray the affliction as a horrible thing to happen to a loved one.

it is not only the person with Dementia that suffers; the family does too.

So please treat them with compassion.

One day you might be in their shoes."

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By (user no longer on site)
over a year ago

I was the op of this thread last year , things are still the same , . My poor dad is still the same , I’ve still not spoke to the family in ages . He would never have wanted this , not in a million years.

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By *hris111mcrMan
over a year ago

salford

I'm struggling at the moment and would appreciate some advice as I think my mum may have it but I'd rather not chat in public forum if someone could pm me I'd appreciate it

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By *hubbyEastMan
over a year ago

East London

My mums suffering from it , horrible illness

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By *onnyosMan
over a year ago

oswestry

So sorry to hear that x

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By *onnyosMan
over a year ago

oswestry

Oh my goodness so sad and so sorry x

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By (user no longer on site)
over a year ago

It's a terrible disease. My Gran father had it and he lost all function He didn't know who he was, where he was even forgot how to eat and go to the bathroom. In the end, he died a frail skinny, Fragile Person. Before he passed away, he had a moment of pure sanity and said goodbye to the one he loved most His wife. It was a very painful time for the family to experience while he was alive watching him slowly degrade into nothing.

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By (user no longer on site)
over a year ago

My mum suffered with Dementia for fifteen years horrible disease, watched her go from a beautiful, caring, funny sensitive woman to a shell , honestly believe it’s the worst , undignified Illness ever, in the end it was relief for her to pass, if ever there’s a argument for euthanasia, dementia has got to be it

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By *r.FtMMan
over a year ago

London

My Mum had it it due to a stroke which ironically was due to undiagnosed Alzheimer's. Thank fully she only had around 3 years until she passed away from, very likely covid. Before it had even been recognised in UK. It's a horrible disease. Enjoy the time you have with your loved ones and always treat them with kindness even though it's frustrating. You'll find you grieve everyday as another part disappears.

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By (user no longer on site)
over a year ago

My mother has dementia, has had for the past 6 years - my father told me when he passed away from Pancreatic cancer 4 years ago so I had an early heads up - it is difficult to cope with sometimes for her - she struggles remembering simple things/names of people/items of food or any number of things. She lives with me so luckily I am able to make sure she is looked after but some days it does frighten me - seeing someone losing essential parts of who they are.

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By *kebrightonMan
over a year ago

Braunton

I'm the primary carer for my parents who are both in their 80s and both have dementia.

They cope OK as long as they are in their own little world and nothing comes along to upset that. As soon as there are any problems they both go to pieces and are on the phone to me. This can happen multiple times over the same thing as their short term memory loss means they don't remember phoning me about it.

The only care available is physical help which they don't need as they can still manage that. No help is available for me, so we just have to get on with it. My two half sisters, my fathers children from his first marriage, don't come near. One has visited twice in 8 years and the other not at all. They never ask me how mum and dad ACTUALLY are, just take whatever they say at face value.

Caring for loved ones with dementia is a full time job and very lonely.

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By (user no longer on site)
over a year ago

"I'm the primary carer for my parents who are both in their 80s and both have dementia.

Caring for loved ones with dementia is a full time job and very lonely.

It does have a big impact, especially on the person who takes responsibility. That job fell to me as both of my siblings are overseas and both have mental illnesses. They are the opposite of helpful sadly.

There is very little help at all it seems for some. I met a guy in Nottingham who was caring for his Aunt with vascular dementia - her daughters had nothing to do with her, never visited (she was too hard) and never helped - the guy (carer) had no support (he may have got some personal care time?), she lived with him in his house and he barely ever left because she needed round the clock care. He installed a ramp and a wet room in his house and used her money to do it and the daughters took him to court (and won) so he had to pay for it out of his own pocket. When I met him in a charity shop (we were both browsing), he said would you like my records and turntable for free, I'm probably going to kill myself soon because my life is a living hell and I don't see any way out of it......At least It will make me happy thinking someone else will get joy out of it.....

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By (user no longer on site)
over a year ago

There’s a lot of people that don’t visit a family member when he/she has dementia, I’m sure there’s something in that , it’s not laziness or can’t be bothered . Must be a subconscious way of dealing with it all .

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By *nalAngelTV/TS
over a year ago

Droitwich, WORCS

I posted earlier in this thread about my father passing away on November 14th 2020.

In truth I have no idea how I'm still alive, I have no real reason or wish to remain on this earth much longer.

I only eat when I can be bothered to eat anything, very rarely go out, only to buy a few things to eat when I have no other choice.

My father's dementia basically killed him and all I could do is make him as comfy as I could and watch him shrivel away to a skeleton when the stopped eating or drinking.

Anyone who claims there's a god, should spend 1 hour in the situation bit I and by the sounds of it quite alot on this site have and are going through, and then try to tell me there's a loving God.

My heart goes out to all in this thread, and I hope you manage to find the closure I have not up to now.

Hugs to all,

Donna Marie

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By *uck73Man
over a year ago

Darlington

Mum has dementia, but I live abroad. It’s awful. She’s been hospitalised three times in the past year alone but I need to be strategic about when I travel. My two sisters are doing their best but I often end up managing their disputes. I don’t always agree with their decisions but tend to respect their choices since they’re the ones doing the work on the ground. I just contribute as much as I can financially. It’s a horrible, terrible disease and I find it shocking that there’s so little knowledge about it, and so little support for carers.

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By *hubbyEastMan
over a year ago

East London

"Mum has dementia, but I live abroad. It’s awful. She’s been hospitalised three times in the past year alone but I need to be strategic about when I travel. My two sisters are doing their best but I often end up managing their disputes. I don’t always agree with their decisions but tend to respect their choices since they’re the ones doing the work on the ground. I just contribute as much as I can financially. It’s a horrible, terrible disease and I find it shocking that there’s so little knowledge about it, and so little support for carers. "

I feel your pain as my mum had to go into a care home due to her dementia.

I totally agree very little support for us carers

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By (user no longer on site)
over a year ago

Yes terrible disease - my father had it for 8 years and though I promised my mum on her death bed that I would look after him and not put him in a home - in the latter stages of the disease I had to break that promise as I couldn’t cope with his demands moods and selfishness - I was literally a skivvie to his every whim , my own health suffered and I had a massive heart attack , so had to let go ,sadly 6 months after admitting him to a home he died , and I wasn’t there to say goodbye , like I was for my mother . Guilt ridden .

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By *triker.xMan
over a year ago

Gloucestershire

My father had dementia and my mum looked after him for years. It wore her out. In the end he went into a home which is where he died.

Then my mum had it. And died.

Life's a bitch.

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By *asmeen 123TV/TS
over a year ago

Stoke on trent.

"My father had dementia and my mum looked after him for years. It wore her out. In the end he went into a home which is where he died.

Then my mum had it. And died.

Life's a bitch. "

Sorry for your loss xx

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By *icFlange2Man
over a year ago

Fareham

My mum had it severe as did we later find most of her brothers and sisters.

Remember to get your dad screened for suitability in a care home and if his health needs are greater than his social needs you are entitled for assessment for NHS funding.

Don’t be bullied by the health and local authorities x

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By *triker.xMan
over a year ago

Gloucestershire

Thanks. It's a terrible thing to have. And it could happen to any of us.

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By *asmeen 123TV/TS
over a year ago

Stoke on trent.

"Thanks. It's a terrible thing to have. And it could happen to any of us. "

I know I work in care xx

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By *triker.xMan
over a year ago

Gloucestershire

"Thanks. It's a terrible thing to have. And it could happen to any of us.

I know I work in care xx"

You do a tremendous job. I have great respect for you all. And thank you. Your efforts are very much appreciated.

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By (user no longer on site)
over a year ago

If anyone is in need of advice and support regarding dementia, there is a free helpline service on offer from:-

Dementia UK.

I won't put the precise details here as it's probably contra to site rules, but if you Google the name, it will lead you there.

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By *udditeMan
over a year ago

wirral /liverpool

Ive worked in care homes and with people with Dementia and its difficult for staff and families, in one care home we where dong maintenabndce on the dementia unit, lovely smart lady there, a smart old chap turns up and buzzes the door to be let in, staff let him in , he politely asks if im new, i say no just doing some work, he goes to his wifes room and after ten mis is met by screaming and swearing, i call the staff,e walks out crying, his wife follows and starts kicking door as he leaves.

I ask staff if all is ok,they say he visits every day and shes always the same,and he comes by 4 buses each way to visit, i run out to offer him a lift home but hes gone.

Go back up stairs and his wife is crying, and thats one patient out of 20.

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By *asmeen 123TV/TS
over a year ago

Stoke on trent.

"Thanks. It's a terrible thing to have. And it could happen to any of us.

I know I work in care xx

You do a tremendous job. I have great respect for you all. And thank you. Your efforts are very much appreciated."

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By *udditeMan
over a year ago

wirral /liverpool

One of the worst things for families is their parents dont recognise them or even sometimes speak to them,when they vist,dont stop visiting, other people in the home may just like a hello how are you or a smile, just little things all help.

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By *r.FtMMan
over a year ago

London

"I posted earlier in this thread about my father passing away on November 14th 2020.

In truth I have no idea how I'm still alive, I have no real reason or wish to remain on this earth much longer.

I only eat when I can be bothered to eat anything, very rarely go out, only to buy a few things to eat when I have no other choice.

My father's dementia basically killed him and all I could do is make him as comfy as I could and watch him shrivel away to a skeleton when the stopped eating or drinking.

Anyone who claims there's a god, should spend 1 hour in the situation bit I and by the sounds of it quite alot on this site have and are going through, and then try to tell me there's a loving God.

My heart goes out to all in this thread, and I hope you manage to find the closure I have not up to now.

Hugs to all,

Donna Marie

Christmas 2019 for my Mum and for a long time I felt like you do. I still do some days, more than not, but I 'take each day as it comes', which she would always say. I hope it gets easier for you.

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By (user no longer on site)
over a year ago

My father died of vascular dementia, getting towards the end of his life, he became distant, a bit violent, didn't recognise any of his family.

To this day , I miss him so much and he passed away 4 yrs ago.

Life sucks at times..

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By *uy near ArundelMan
over a year ago

Nr Arundel

"My father died of vascular dementia, getting towards the end of his life, he became distant, a bit violent, didn't recognise any of his family.

To this day , I miss him so much and he passed away 4 yrs ago.

Life sucks at times.."

Sorry to hear that, it must be hard to deal with x

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By (user no longer on site)
over a year ago

"My father died of vascular dementia, getting towards the end of his life, he became distant, a bit violent, didn't recognise any of his family.

To this day , I miss him so much and he passed away 4 yrs ago.

Life sucks at times..

Sorry to hear that, it must be hard to deal with x"

very hard my dad has parkinsons dementia i cared for him for 3 years was hard work mixed with good days when he had a few hours of what i called 'back in present time'He has had to go into care home one of hardest choices i ever made in my life but due to him getting violent etc and falling injurying himself he needs expert care

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By *eon7Man
over a year ago

Swadlincote

My wife has Alzheimer’s, Parkinson’s and Osteoporosis. It’s an absolute nightmare. A totally different person.

She used to be up for most things but now is just a shell

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By *at n biMan
over a year ago

Chesterfield

I’m a support worker In a care home for dementia patients

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By *icFlange2Man
over a year ago

Fareham

My mum had the worst. Louis bodies. Basically became a crazed and very confused person.

Made much worse by authorities who ignored the scans to say ‘’mild dementia’ to justify having to pay for her care.

After a rampage and a care manager saying my mother was too ill for the home we got nhs funded care.

If your health care needs outweigh your day to day needs you are eligible.

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By *torytellerMan
over a year ago

tamworth

Facing this situation with a mother going downhill fast .

So far care home coping and giving us good advise but we do see very dark clouds on horizon .

Thank you OP for posting such a topic x

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By *he Music ManMan
over a year ago

Poulton Le Fylde

My partner of 49 years has dementia. He is now 84....coming up 85. It manifested itself about three years ago with a sudden violent outburst directed at me. It just came out of the blue. He then stormed off, lost his balance and fell' fracturing his shoulder. This was at 11pm. Up to A&E.

They wouldn't keep him in hospital so I had to care for him at home ....and it was sheer hell.

However, he slowly recovered physically and improved in his demeanour.

He has been on Memantine medication for 12 months and I must say that it has stabilised his condition.

He can appear to get perfectly normal in company....but is no longer aware that our home since 1981 is actually his home. I think that HE thinks he is in a hotel.

Thank goodness that I have Power of Attorney as he is convinced he has no money....and that all expenses are MY responsibility.

And I can now deal with his insistence that there are "others" in the house.

I manage to correct him by simply saying.."just the two of us"..which accepts. Till next time.

I'm only 71...he is quite happy and assures people that he is fine and nothing wrong.

My life is in shreds...personal, social and professional.

We'll both be in care before long.

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By *ichey6Man
over a year ago

aberdeen

The above post puts things into perspective.

It must be incredibly harrowing to watch someone you've been with for so many years experiencing the cruelty of dementia.

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By *evilmaycareMan
over a year ago

Aberdeen

"The above post puts things into perspective.

It must be incredibly harrowing to watch someone you've been with for so many years experiencing the cruelty of dementia.

It's a horrible disease, and robs you of the person...

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By (user no longer on site)
over a year ago

Mum developed vascular dementia after a severe stroke.

To see a woman so vibrant and intelligent regress to a child like petulance was heartbreaking.

My sister looked after her for 10 years until, she couldn't any more!!

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By *enchesterMan
over a year ago

Chester

TheMusicMan - Thank you for reviving this topic. I really feel for you. We need reminding that dementia is still around us and ruining lives.

If it's not too late - I urge everybody in a solid partnership to get Power of Attorney both ways. It's too late when dementia starts to be apparent.

When I was dealing with my partner's illness, it was so useful to say that I was his civil Partner and had Power of Attorney. There could be no arguments then.

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By *astDevonGuyMan
over a year ago

East Devon

"TheMusicMan - Thank you for reviving this topic. I really feel for you. We need reminding that dementia is still around us and ruining lives.

If it's not too late - I urge everybody in a solid partnership to get Power of Attorney both ways. It's too late when dementia starts to be apparent.

When I was dealing with my partner's illness, it was so useful to say that I was his civil Partner and had Power of Attorney. There could be no arguments then."

If you have siblings and you are being given Power of Attorney for your parents , I strongly urge you get them made “ jointly” which will require all attorneys to be present and signatories not “Jointly and Severally “ which means one can act independently of the others . It might just save you from some real issues …

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By *ay12345123Man
over a year ago

Nottingham

I forget alot

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By *egginzboyMan
over a year ago

Rugeley

My next door neighbour had dementia

Ten years of very slow decline

It was horrible to watch such a strong hard working lady waste away and wilt

It broke my heart to see her waste away like that

Absoloutely heartbreaking

Please God give her a good bed in heaven xxx

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By *ikifireMan
over a year ago

Sunderland

I lost my grandma when I was young to dementia.. it was heart breaking watching my grandad who was a hells angel break down when she was screaming at him because she didn’t recognise him.

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By *he Music ManMan
over a year ago

Poulton Le Fylde

28 weeks on and my partner's mental condition has worsened significantly.He certainly does not recognize me as his partner of 49.

He no longer recognises his home here with me since 1981...he thinks he and his mother lived here years ago and then left.

In fact she died 6 months before we moved in.

I have been replaced by "mother" in his memory of important events.

It's very strange. Today, we went out for lunch in Blackpool, Stanley Park then a drive to Lytham back to Blackpool for a coffee at Costa, Squires Gate and a bit off Aldi shopping and then along the prom to see the illuminations.

A perfectly happy, almost "normal" day.

As soon as we get home and into the house, I am perceived as a total stranger who shouldn't be in the house and he becomes aggressive of mood.

It happened on Wednesday after a trip to Manchester.

He's like Jekyll and Hyde...in the blink of an eye.

I honestly cannot take much more of his mood swings. I am exhausted.

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By *ornyme61Man
over a year ago

Coventry

Remember it's the desease and not your partners fault, you have to love him and do your best to support him, I wish you the very best and hope you can keep it together.

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By *tevemc69Man
over a year ago

Taunton

I think I have very early signs of it.

I live in Spain but think I need to sell up and get back to be nearer to family

Good luck to those who have it or caring for someone with it, think it is a harder for those people

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By *sbcoMan
over a year ago

derby

Dementia is a really cruel disease. It’s not the diagnosed person who suffers from the effects of it.

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By *tevemc69Man
over a year ago

Taunton

I think I have very early signs of it.

I live in Spain but think I need to sell up and get back to be nearer to family

Good luck to those who have it or caring for someone with it, think it is a harder for those people

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By *ohnmikeMan
over a year ago

county limerick

If the roles were reversed u would b glad of some one to look after u after all did u gorget what your mother did for u

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By *aestroMan
over a year ago

Rugby

My grandad, who taught me so much, faded away to dementia combined with regular rounds of bladder cancer thrown in to twist the knife. My nan became his carer. He spent his final few weeks in a care home while a bathroom was being adapted at home for him. She still, even 6 years since he passed, visits a local memory cafe that supported them both. It meant alot to her having that time away from home with him with others going through a similar situation.

My friend works for the NHS, but still every year volunteers a week of her experience with working with dementia patients to a charity called Dementia Adventure who do some amazing work in offering supported holidays and advice. That makes her fucking amazing in my eyes!

It's a cruel condition and reading the posts is testament to that. Hugs all round guys x

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By *ookingFor...Man
over a year ago

West Sussex

"There’s a lot of people that don’t visit a family member when he/she has dementia, I’m sure there’s something in that , it’s not laziness or can’t be bothered . Must be a subconscious way of dealing with it all . "

They'll soon rock up when there's a will to be read out.

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By (user no longer on site)
over a year ago

Some dreadfully poignant posts here. I read in the FT this week that, for some inexplicable reason, cases of dementia are falling in developed economies (UK, Japan, Germany). They don’t understand why.

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By (user no longer on site)
over a year ago

Lost mum to dementia 2 years ago.

My sister looked after until she just couldn't manage.

I told her there would come a time when mum would go from loved one to patient and I'd support any decision she made.

Spent the last few months in a home and in all honesty death was a blessing.

The last few weeks were horrific watching this once vibrant intelligent woman become a empty shell

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By (user no longer on site)
over a year ago

Im a phsychotherapist and in practice always say that dementia and alziemers are the cruellest of illness's. They rob the familys of their loved ones as they Vanish before them ? then mercifully the victims taken leaving a massive void !!!

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By *he Music ManMan
over a year ago

Poulton Le Fylde

My partner is 85. He showed signs of what was to be diagnosed as Dementia in 2019

I've managed to care for him 24/7. Just before Christmas 2023, I realised the decline was rapid and since New Year 2024 he reached stage that tried my limit of care both mentally and physically, but I struggled on.

Many discussions with Alzheimers Society and Social Services...them telling me that I have done as much as I could.

I was diagnosed with BP and as from Thursday of this last week I now have medication.

A sudden explosion of agitation, ranting and raving on Friday afternoon forced to to call NHS 111

It had been going on from 4pm to 6pm and still going on when ambulance guys arrived.

I realised that I just could NOT cope with it any longer, particularly as he been "sundowning" for many weeks resulting in my having no quality sleep in that time.

Long story cut short...he is now in Blackpool Victoria Hospital awaiting assessment and I have expressed a wish through my Power of Attorney that he go from there to a place of respite and thence into 24/7.

On Friday evening, I have to admit that I suddenly felt overwhelming relief.

I went to bed at 10.30pm and slept right through until 8.45am

I'm 72...we have been together 49 years...50 this coming May.

He doesn't recognise me as being his partner in business and in life. He doesn't recognise this house as being his home for 43 of those years.

It was that that sparked off the intense agitation on Friday. He suddenly failed to recognise ANYWHERE and ANYTHING in the house.

I've done all I can...whilst his dementia increases, my ability to care has become exhausted.

So far I'm being pragmatic about it.

The reality may hit later.

Where are all our local friends in this...when the going gets tough, the friends get going !!!

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By *our-slaveMan
over a year ago

nottingham

My sister has dementia. She doesn’t know who I am. Or who anyone is. She’s in a care home and doesn’t know who the carers are. If you go into her room, go out then go straight back in, she doesn’t know you were there a few seconds ago. So literally everyone is a stranger. 100% of the time.

She can’t feed herself. Or hold a cup. If she needs the toilet, she can’t tell you. Because she’s lost the ability to talk.

I could go on, but I won’t. It’s a despicably cruel illness.

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By *astDevonGuyMan
over a year ago

East Devon

What do you see, nurses, what do you see?

Are you thinking, when you look at me —

A crabby old woman, not very wise,

Uncertain of habit, with far-away eyes,

Who dribbles her food and makes no reply,

When you say in a loud voice — “I do wish you’d try.”

Who seems not to notice the things that you do,

And forever is losing a stocking or shoe,

Who unresisting or not, lets you do as you will,

With bathing and feeding, the long day to fill.

Is that what you’re thinking, is that what you see?

Then open your eyes, nurse, you’re looking at ME…

I’ll tell you who I am, as I sit here so still;

As I rise at your bidding, as I eat at your will.

I’m a small child of ten with a father and mother,

Brothers and sisters, who love one another,

A young girl of sixteen with wings on her feet.

Dreaming that soon now a lover she’ll meet;

A bride soon at twenty — my heart gives a leap,

Remembering the vows that I promised to keep;

At twenty-five now I have young of my own,

Who need me to build a secure, happy home;

A woman of thirty, my young now grow fast,

Bound to each other with ties that should last;

At forty, my young sons have grown and are gone,

But my man’s beside me to see I don’t mourn;

At fifty once more babies play ’round my knee,

Again we know children, my loved one and me.

Dark days are upon me, my husband is dead,

I look at the future, I shudder with dread,

For my young are all rearing young of their own,

And I think of the years and the love that I’ve known;

I’m an old woman now and nature is cruel —

‘Tis her jest to make old age look like a fool.

The body is crumbled, grace and vigor depart,

There is now a stone where once I had a heart,

But inside this old carcass a young girl still dwells,

And now and again my battered heart swells.

I remember the joys, I remember the pain,

And I’m loving and living life over again,

I think of the years, all too few — gone too fast,

And accept the stark fact that nothing can last —

So I open your eyes, nurses, open and see,

Not a crabby old woman, look closer, nurses — see ME!

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By *astDevonGuyMan
over a year ago

East Devon

I lost both my parents one to Alzheimer’s the other to Vascular Dementia, but thankfully found the poem in my earlier post amongst my Mums things as we were preparing to put her into a home, which had become a necessity . It broke my heart then and still does now , but during their final stages it helped me to realise they were still the parents who had , cared for me during illness , raised me from birth , comforted me through broken relationships, laughed with me and toasted my successes. It was hard, near impossible to cope in their final years , it’s like witnessing a long death where your grief starts whilst they are living . Thankfully I was able to hold on to memories of who they were not who they gradually became . Sending hugs to all who are and have been affected.

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By *orchlightMan
over a year ago

Chippenham

"I dont want to start a moral argument but even a dog would not be allowed to suffer what my gran went through. Its just so awful, wish you all the best"

Not an argument but a discussion about end of life care is well overdue in this country.

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By *astDevonGuyMan
over a year ago

East Devon

"I dont want to start a moral argument but even a dog would not be allowed to suffer what my gran went through. Its just so awful, wish you all the best

Not an argument but a discussion about end of life care is well overdue in this country."

Absolutely, there should be a discussion, particularly for those who retain capacity during their terminal illness , to be able to make the decision to end their life . With dementia’s the capacity is lost very early on even seeing my parents at their worst , I had no way of telling what their innermost thoughts were and if their life was unbearable to them. Mum was able to smile , sing , hold my hand right up to the day before she died, though she had not eaten for almost 3 months . I could never have made the conscious decision to end either life prematurely and would have fought any clinician who tried. Ultimately good palliative end of life care does hasten death , ease pain and retains dignity, both my parents died within hours of a morphine pump being administered to ease the discomfort of organ failure, but my consent was given to ease and comfort. I hope when my time comes to go as naturally as possible , but not at a time chosen either by me or others.

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By (user no longer on site)
over a year ago

My dad is now in a care home suffering from vascular dementia. We think he's had it for 3/4 years now. It's the worst chapter of my life to date.

"I lost both my parents one to Alzheimer’s the other to Vascular Dementia, but thankfully found the poem in my earlier post amongst my Mums things as we were preparing to put her into a home, which had become a necessity . It broke my heart then and still does now , but during their final stages it helped me to realise they were still the parents who had , cared for me during illness , raised me from birth , comforted me through broken relationships, laughed with me and toasted my successes. It was hard, near impossible to cope in their final years , it’s like witnessing a long death where your grief starts whilst they are living . Thankfully I was able to hold on to memories of who they were not who they gradually became . Sending hugs to all who are and have been affected. "

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By *aestroMan
over a year ago

Rugby

[Removed by poster at 30/10/24 20:34:32]

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By *eon7Man
over a year ago

Swadlincote

My wife has had it for the last 4 years plus osteoporosis and Parkinson’s

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By *ungryBottom25Man
over a year ago

London (Any)

"My dads had it for 3 years now , I’ve fallen out with my family because of it , anyone else got or had a similar situation. "

It's super tough. Happy to chat.

Lost someone to it. Bit if a journey and definitely hard on the people around them. Dignity is so important to preserve.

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By *3versMan
over a year ago

glasgow

"My dads had it for 3 years now , I’ve fallen out with my family because of it , anyone else got or had a similar situation.

It's super tough. Happy to chat.

Lost someone to it. Bit if a journey and definitely hard on the people around them. Dignity is so important to preserve. "

They're gone

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By (user no longer on site)
over a year ago

I'm just at the start of this journey with an only parent.

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By *idge555Man
over a year ago

Cheshire

Brother has dementia he's only 60,

Sad to see if you knew how he was

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By *opActiveMan
over a year ago

London

My only wish to die while I am in my dignity

Dad has it and scares me a lot

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By *astDevonGuyMan
over a year ago

East Devon

It truly is awful , but never forget the person who was , is still in there. It really is a long goodbye and you grieve over and over again. But there are and will be unexpected moments of joy. Music never failed to bring out the Mum that was , even in her final days she could sing along word perfect to the songs from her younger years.

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By (user no longer on site)
over a year ago

My mother in law has this horrible disease

She is in hospital with another problem, but watching her change and go downhill is really heart breaking for my wife and her family

Anyone who has gone through this with family members has my sympathy, its terrible to watch

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By *atietv1TV/TS
over a year ago

co. Durham

It is a very cruel disease

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By *ottomguy8919Man
over a year ago

Thetford

I spent 10 years in care work 8 of them I was caring for dementia patients. I have to say that it was always hard when a resident passed away due to dementia as we cared for them sometimes from early on diagnosis we have seen the changes in people and it's scary for the patient too. I have been there to hold the hands of 13 dementia patients during their last moments just so they were not alone. Nobody should be alone during death. On the flip side though I have become hardened to death now. I don't fear it and I can watch someone die without becoming affected by it.

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By *0smannwMan
over a year ago

Burnley

Awful, awful illness. I helped nurse my dad through it years ago. He must have been in his 50s when he started and it was a real relief for all when he passed away. My dad had long gone before that. It's heart breaking.

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By *onloongMan
over a year ago

Lichfield

I feel for you. My grandad had altzheimers. He went from a very gentle character to an aggressive one. Total personality change.

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By *inaCD66TV/TS
over a year ago

Wimbledon

So many sad stories in this thread.

Dementia has killed off 6 of my Mum's Brothers n Sisters.

The last two years she has now got to a stage where its nearly unmanageable.

I am the only sibling and no father. She also has assets and pensions so we fail for care home cover. In london appx 5.5 thousand a month.

This disease is a Bitch and effects 1.1 million In UK a Year.

The tablets are there but to expensive the Gov say for NHS to select and deliver.

ANYONE helping a love one through this to the End i Feel and understand ..❤

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By *enardeMan
over a year ago

Barnsley

I know it sounds crass but I’ve always thought that I would sooner top myself than inflict my dementia onto wife and family

However it’s a disease that creeps up and gets you without knowing

I’m sure more people would go for euthanasia than suffer and cause such suffering g to their families

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By *sostockyguysCouple (MM)
27 weeks ago

Nottingham

My partner was diagnosed with Altzeimers in March 2022.

Lost my dad in the June of that year to cancer (my mum died of cancer when I was 27)

Brother in law died in September of 2022 in a secure unit due to dementia (How my sister coped I don't know but she's living a new life now!)

I noticed changes in my partner as far back as 2019.

At back end of 2021 he went to local gp who said there was nothing wrong.

During a referred cardiogram at another gp surgery the nurse asked me if I was OK and I explained my concerns.

She asked if I wanted to move surgeries and took us to reception to get forms filled out.

A couple of weeks later his records transferred and booked in for a new test where he failed all questions put to him and fast tracked to memory clinic and onto brain scan.

He was put on Donepezal and shortly after Memantine as well. It's really helped the slope if decline but I'm still angered it wasn't picked up earlier.

He's been non verbal for for 2.5 years now and not steady on his feet.

His urine incontinence started in 2022 and I manage that with products from "Afex" I bought privately initially but is now on prescription (if this helps anyone else; it's a male incontinence system)

I'm lucky in my journey that he has never got angry at suggestion something was wrong and suggesting we sell the car (I don't drive) he agreed.

There is still a lot of him on the inside (I can see it in his eyes) just it's buried behind so many barriers.

I'm lucky (currently) once settled in his hospital bed I can go out for a few pints and meet old friends and make new ones)

I mostly visit straight bars and the kindness from blokes has been overwhelming often causing me to break into tears.

To have random people pull you in for a hug as you cry uncontrollably; there are no words.

I'm so lucky that my middle sister has just retired back to the area and has offered me ongoing support along with her husband.

I have a situation better than many so I really cannot complain.

To all those facing a similar struggle I salute you and can only reinforce what others say to me; "you must take care of yourself"

Just to add I was a plain old office worker till I resigned in Dec 2023 so no nursing experience.

The change in finances is huge but I couldn't work and look after my partner at the same time. Spending time with him is more important.

Big hugs to all the carers out there.

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By *DCambsMan
27 weeks ago

Cambridge

As someone said a while back in this thread, if you're a committed couple in a Civil Partnership or Married, sort out your Lasting Powers of Attorney BEFORE either of you lose capacity. Someone who has started down the Dementia/Alzheimer's route may be deemed as not having capacity at that time to grant the power of attorney and it will be too late then and other legal routes will then be hellishly expensive to get permission to manage the ill partners finances, and with the health/wellbeing aspect, you're relying on medics to make the decisions - anything you chip in as next of kin will just be seen as an opinion to consider, not as the actual wishes of the ill partner.

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By *arcosa66Man
27 weeks ago

London

"As someone said a while back in this thread, if you're a committed couple in a Civil Partnership or Married, sort out your Lasting Powers of Attorney BEFORE either of you lose capacity. Someone who has started down the Dementia/Alzheimer's route may be deemed as not having capacity at that time to grant the power of attorney and it will be too late then and other legal routes will then be hellishly expensive to get permission to manage the ill partners finances, and with the health/wellbeing aspect, you're relying on medics to make the decisions - anything you chip in as next of kin will just be seen as an opinion to consider, not as the actual wishes of the ill partner. "

Very wise.

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By *arcosa66Man
27 weeks ago

London

Alzheimer's took my mum on Boxing Day 2022. My mum was a strong and passionate woman who loved opera and had a fiery temper. But she loved her family passionately and she would do anything for us. You couldn't miss her in a crowd, 6ft in her bare feet, blonde hair and blue eyes, the woman was like an Amazon. I loved her so much.I

On January 2020 COVID took my Dad. As I mentioned before my Mum loved us all fiercely but when my Dad died it was like something in my Mum was extinguished in her too. She was grieving, obviously, but there was something else wrong as well. We took her to the doctors who then referred her to a specialist. A few tests later and it was confirmed, Alzheimer's.

After that it didn't take long. She didn't do much decline as plummet into the disease. I suspect that her grief exacerbated her condition and maintain that she died of a broken heart which was complicated by Alzheimer's.

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By *ldderMan
27 weeks ago

Oxford and Sevenoaks Bath

Sadly I had a good friend who found out recently he was going to be like his mum and would end up with dementia and always said if he found out he'd end his life plus he was type one diabetic sadly just a few weeks ago he took his own life. Such a waste of a great work colleague and a true friend

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By (user no longer on site)
27 weeks ago

Although modern medicine prolongs life the last years can be extremely difficult for all concerned and raise moral issues difficult to resolve...and I'm heading that way as I suppose are us all.

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By *atureTransTV/TS
27 weeks ago

Waterlooville

I feel for anyone who has this horrible disease, as it took the life of my wife and best friend, recently.

I also salute all the family carers, who give all thier time and love to look after those that are afflicted.

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By *opcock58Man
27 weeks ago

Helston

I had to deal with my dad who suffered from this in his later years. My best advise is first make sure they are safe and cannot come to any harm. 2nd and the hardest part is don't correct them,as long as they are to believe whatever they are saying at the time then just let it roll, just say oh good or that's great. An hour later they will have forgotten the conversation. Some days are good and other are very bad. Try talking about years gone by when they were younger, they tend to have better long term memory and enjoy reminiscing about old times. I know it's hard but you will get through it believe me. Been there got the tee shirt.

Good luck.

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By *irralblokeMan
27 weeks ago

wallasey

It's a fucking evil thing.

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By *udditeMan
27 weeks ago

wirral /liverpool

[Removed by poster at 31/07/25 21:43:18]

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By *udditeMan
27 weeks ago

wirral /liverpool

"My partner was diagnosed with Altzeimers in March 2022.