To think that the reality of Dementia is misunderstood

[TheMustressMhor]

I think that most people cannot understand what the real day-to-day challenges are for relatives of people with dementia.

Until your elderly relative is diagnosed with this, you probably only have a hazy idea of the realities.

It has only been in the recent past that dementia has been given as a cause of death on death certificates.

AIBU to think we need to educate ourselves more?

@CleopatraTomato, I wasn’t hurt, but thank you. I just wouldn’t want anyone coming fresh to our situation to think you always tell the truth regardless. As we both know, it’s kinder not to in many instances. My dad was constantly at the golf club after he died, Mum’s dementia protected her from taking it on board. When I told her he was dead she asked if he had a wife so I lied constantly after that.

I agree at this stage - and you were a very kind to do that. It is the realisation that your relative isn't jsut a bit confused, forgetful or prone to getting things wrong but that the inconsistencies are in fact her reality that is hard to accept. I kep thinking that if I kept making sure Mum knew what was "right" and "true" then I wouldn't have to accept that she was as ill as she was.

Now I see her and I will be whoever she needs me to be - not her daughter, (who is permanently five years old)

This thread is helpful for me - thank you

I know Cleopatra, it’s complete and utter rubbish. My reality checkpoint was the first time my mum didn’t know who I was. We crossed the Rubicon that day. I sat in the car outside their house and bawled.

me too.

Right - I have to do some laundry and peel some potatoes. I'll check in later.

I expect to have it too, but I'm determined I'm not going to live with it, nor will I put my children through it.

I feel the same, but am not sure how to achieve it. As I said in an earlier post on this thread, my mother attempted to kill herself with an overdose last year at the age of 98. She failed, yet doctors said they were amazed that she survived. What is currently legal? I thought that you could only go to the Swiss clinic if you had a terminal illness.

I thought that you could only go to the Swiss clinic if you had a terminal illness

Dementia is a terminal illness, though.

A lot of people do not regard it as such, unfortunately. They do not realise that when you have a diagnosis of dementia your days are definitely numbered.

Dementia is not a natural consequence of ageing, although the greatest risk factor for dementia is increasing age.

StealthPolarBear

I sincerely apologize for misunderstanding you. I am sorry.

In my defense, which is probably not deserved, it was incredibly difficult to watch my Mum deteriorate at the same time my Dad was battling cancer. I was also very much affected by what I felt was a rather disturbing attitude by some (not all) of the doctors who were responsible for her care in the last days. It was, I am sad to say, clear that she was considered a lost cause and a hospital bed blocker.

The risk factor issue pushes some buttons for me because my Mum was so health conscious and careful. It seems so unfair.

Again, so sorry. I did not respond sooner because I am 8 hours behind the UK time wise and have been asleep.

It is so hard for all of us dealing with dementia.

Dementia is a terminal illness, though.

I thought that as I was typing it, but is it accepted as such if you want to be able to have an assisted suicide? I am so terrified of dementia.

Yeah, I didn't realise how awful it was until my mum starting progressing in her dementia.

I used to be a staff nurse working in Dementia care ,so I have a fairly good understanding of Dementia and some of the different types , it's a cruel illness and some people are tortured it's horrible for their relatives to see them like that , the ward I worked on most of the patients could nt be cared for in a home or at home as their behaviour was so.challenging, however having said that I have known some people with a diagnosis of Dementia who.were generally happy and although very confused not distressed ( not many but some ) My understanding of medications such as Aricept were that they improved a person's memory and quality of life but only for a limited ti I have nursed people with early onset Dementia but it is rare ,the youngest person was in his late 30,s he had Picks disease .

Thank you trying. Sorry to hear about the attitude of the doctors to your mum.
Wrt dementia being a terminal illness, I don't know but isn't the issue that by the time the sufferer is far enough along to want to do something, they no longe have mental capacity? Not just extreme things like dignitas, my grandad has dementia (the slightly nicer "a bit forgetful" type) and mum struggled to invoke POA because he needed to agree, but wasn't competent to do so. Could have misunderstood though.

My nan has dementia, and for various family reasons I'm the "main" carer along with DH.

I think the hardest bit we have found isn't necessarily the sort of understood and expected side of forgetfulness but rather how it has accentuated all the worst personality traits in nan. She has always has anxiety and its now out of control. She has always been stubborn in her refusal to change her ways, she's ao much worse now to the point its impossible to deal with her. She makes up really mean stories about us and no matter what we do, we can never do anything right. She lives alone as currently no one is in a position to have her with us, and she is so mean and spiteful and stubborn we dont want to live with her which i know if just awful.

Logically we know we can't blame her, emotionally we cant help it.

Trying, seriously, thank you. Sorry for my harsh replies. Its an emotional topic isn't it.

how it has accentuated all the worst personality traits in nan

Exactly this has happened with my dad. He's been a great dad all told and is a lovely person, but since the dementia took hold, all his faults (which we all have) and worst personality traits have taken over. It's like a TV series where someone's evil twin replaces them and no one can understand why they look the same but keep acting so horribly. Fuck dementia for doing this.

StealthPolarBear

Thank you for being so gracious. It is indeed an emotional topic. It is also terrifying.

The whole death with dignity issue has been debated in Canada, where we have laws allowing assisted suicide. But the laws are not really adequate for dementia, because you have to have capacity when the assisted suicide actually happens. You can't say in advance.

There have been cases in the media, sadly, where facilities are feeding people with severe dementia against an advance directive.

The major issue here is care and support. Frankly, the situation with my parents was a gong show. Trying to find care they would accept and could afford. It just seemed impossible and one thing after another kept happening.

My Mum was not far advanced. She mostly knew us and she told me herself a day before she died that she wasn't going to die. As I have said, perhaps the flu was a blessing. Dad died four days later. It felt like they slipped out the back door together.

to everyone dealing with dementia.

What a really useful thread 
My dad developed MS at age 58 and within 8 months that had progressed to a neurological dementia as a result. He was already physically disabled anyway so my mum had to have him cared for in a hospital (special dementia wing) because she couldn't physically manage him. Of course everyone else in the hospital was 80+ and no one really knew what to do with him. He was very quiet and withdrawn and just also a lot. Thankfully died from a stroke about a year after diagnosis. I was 21 so it was a steep learning curve for me seeing that.

My FIL was diagnosed in about 2013 after we were concerned about his behaviour (odd, not violent). I knew how it would progress and tried hard to prepare DH for it but he and his mum (his parents were divorced for 35 yrs) refused to accept the inevitable. MIL would say "oh he's picked up today, I think he's on the mend"  Luckily we lived close by and I took on the primary cater role which wasn't too onerous to start with, and we made a huge effort to make his days fun while he could enjoy them. Also organised his POA and financial affairs while he could authorise that.

After 6 months of double incontinence, 3am phone calls and burning things in the oven, his twice-daily professional care staff said they could no longer look after him effectively and he needed 24hr care. GP thought he'd live another year. Lovely private dementia care home with amazing staff and facilities. And he survived another 3.5yrs! But for the last year was bed-ridden, almost non-verbal, unable to do anything at all. Endless aspiration infections. Heartbreaking to watch. Thankfully died this July, peacefully, with staff talking to him.

@TheMustressMhor you asked about meds. FIL started on Donepezil on diagnosis and it made a big difference. After about 3yrs it stopped working and he was changed to memamtine, which seemed to work although the care staff had to alter the times at which he took it depending on how it made him react. I think at one point he had a slow-release patch but that didn't seem effective. He was given sedatives once or twice a week to calm him; I know that this is sometimes frowned on by GPs and others but it was always documented and his behaviour witnessed and recorded impeccably so there was no doubt in our minds that they were doing the right thing by him.

I have made it clear that should I get a dementia diagnosis, I would want to be PTS fairly soon. Dignitas need the patient to be Able to consent to it and I've found that people I talk to don't seem to realise that you just don't "get better". I would rather lose a year of almost-normal life than to put my children through 5-10 years of my decline because I didn't take action soon enough.

I am pretty vocal about stuff like this and some find it a bit callous I suppose. But being honest about illness and death is for me the only way to cope, We are all going to die after all I have been asked a few times for advice on dealing with early dementia and I always say Get their affairs in order, have a last holiday (or similar) together, talk to them about funeral plans, take lots of pictures so you have tangible proof of happier times, and try to prepare all the family for what is going to happen. My kids knew every step of what was happening to grandad - I needed to share it for my own mental health - and so the end didn't come as a shock. Maybe we're an odd family but this worked for us.

Sorry for the long ramble, thanks for letting me get it off my chest. for you all who are living through the twilight half-life of dementia

I work in the area of social care funding and speak to families everyday about the realities of caring for someone with dementia

My Nan died aged 100, a tiny frail woman at the end who had been in a care home for 9 years. She didn't develop dementia symptoms until her early 90s but it took ages to claim her, she would have been so angry to know how she would end up.

I'm POA for my aunt who is only 75 but has quite moderate dementia and still lives at home with my uncle. She went through stages of aggression and phoning the police to say her husband was missing and the man in her house wasn't him despite looking the same and having the same name ... Capgras delusion apparently. She's on Aricept, lorazepam, memantine and risperidone; seems to have calmed her down and allowed my uncle to get some sleep at night.

It's a cruel disease.

Arrowfanatic
Totally agree my mother was always a worrier and anxious now that is 100 times worse she can worry about fresh air 😂
And she was also quite contrary and argumentative now this is just a 1000 times worse
And she would always worry about wetting herself. Now she has to go to the toilet every 45 mins even when she doesn’t need to go
Its never ending for my poor father

I wish the doctors could give her something to make her sleep more as she is nice and quite when she is asleep 😴

no one would want to be kept alive in that state, complete loss of dignity, loss of everything that made them who they were, it's obscene to keep people alive like that, they are just cash cows for nursing homes

If people develop dementia at a very late age the general course of the disease is slower - so they can take 5 - 10 years to die.

OTOH if dementia is diagnosed at age 60, for example, it tends to last only 3 - 5 years.

The woman in Australia who was diagnosed in her 30s (when pregnant) only survived for two years IIRC.

She had to go through labour of course. Then could not remember having had her baby. It was an unbelievable nightmare for her husband.

I have looked after a lady who was 88 when symptoms first appeared. She was still going strong physically at age 96. Still able to be at home and did not really deteriorate into incontinence and total dependence until she was 98.

She was 101 when she died.

@bombomboobah

I don't know about people being cash cows for nursing homes - at the moment there is no system in place in which people with dementia can be euthanised. This is something which needs to be urgently debated at a level where policy can be made and implemented.

@TheMustressMhor, you can’t euthanise people with dementia but you can stop treating them, hence my advance directive. I told the doctor and the care home to stop giving my mum antibiotics. Her quality of life was zilch and prolonging it was cruel.

I’m currently staying with my parents and upstairs hiding for a while. Dad has dementia and his quality of life is deteriorating but has been reasonable. Mum’s quality is pretty shit, frankly. He follows her constantly, disturbs her in the night, gets irate with her over who knows what, is absolutely adamant that he does not live in their house...

He also has advanced cancer and his oncologist, in his wisdom thinks he should remain on the treatment which is currently holding back the disease. I am of the view that it’s time to stop but poor mum doesn’t want to be painted in a bad light. I never ever imagined myself saying I hope he dies of the cancer but the reality is that the palliative care he will receive will be far better than the paltry offerings available for dementia.

It’s all just very, very crap.

@itsjustmee my nan is the same. Obsesses about the toilet, and refuses to go anywhere new incase she cant work the toilet. However she has the opposite issue in that she doesnt pee constantly. She's so stressed about needing to pee that she wont drink for fear of needing to pee. If she's waiting for the gas man for example she wont drink at all, so that she wont need to pee & risk missing him.

This then means she has many medical issues that knock on from this and UTIs make her demetia worse.

@Alsohuman

Advance directives

I have seen so many of these. They vary from area to area. Some just specify Do Not Resuscitate. One lady I looked after (who was easily the most violent patient I had ever met and who spent her life being terrified of absolutely everything) had a DNR status. She got a bad UTI and was prescribed antibiotics.

I had so much trouble trying to get her GP to understand how poor her quality of life was. He still insisted on the ABs.

But he didn't have to be hit by her six times a day when her incontinence pads were being changed. Nor was he able to see that the reason she was so violent was extreme fear/terror when she was touched for any reason. Her relations also thought it was wrong to withhold ABs.

It was an awful situation.