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?

Lostandinsane

I think the best approach when your DGM thinks something terrible has happened to a family member is to agree with her and then tell her that the police are dealing with it, and when you have news you'll tell her.

How often do these delusions occur?

YANBU there is very little help available and understanding others have is slim to none.

Like others have said unless you have lived it you can’t truly understand it.

My DH’s nan died about 7 years ago. Before she died she had to have a hip replacement as another dementia patient in the care home pushed her over and her hip got broken. My MIL asked the physiotherapist on the ward how the exercises would be done once she was discharged and the physio said “well she’ll have to remember to do them!” This is someone with no memory at all, doubly incontinent and bedridden.

My dad was diagnosed with Alzheimer’s 18 months ago and we have no support from his side of the family at all. They were in denial for awhile, but now they have accepted the situation they don’t get in touch, we are no longer invited to family occasions such as Christmas get togethers. My cousin lives 10 minutes drive from my parents , and my aunt (dad’s sister) often visits to dogsit but won’t spare an hour to see dad. There is very little professional help available - medication was offered, but dad won’t take it. There is nothing else. No follow up appointments, nothing. My dad’s doctor’s surgery won’t communicate with my mum at all, even though she has power of attorney. Mum is trying to sell their car at the moment, but has to jump through a million hoops because it’s his name on the registration document. Staggering.

I'm yet to come across anyone (besides immediate family) that has heard of lewy body dementia. I've had to explain it so many times.

This.

And there is no "textbook" case - before we had experience of it in our family, I thought it was just happy people "away with the fairies" who just didn't really know what was going on around them. Then, as we began to have experience of it in our family, I thought that the relative's memory would just fade over time, starting with short-term and getting longer and longer-term.

Oh was I wrong. Without being too outing, it was as if we lost them overnight. And they've never been back. And they are not happy, not in the slightest, they cry the majority of times I see them. They have dreams in which awful things happen, and they can't distinguish them from reality. They can't hold a conversation because they are either hallucinating or just not registering. They don't know who their relatives are.

It's shit, really.

to everyone on the thread who has had experience of this evil disease

A relative (in-law) died of vascular dementia. It had been about five years since she’d had any language, eighteen months of being unable to swallow anything other than liquids. It was the swallow reflex which killed her in the end, after 10 years of residential care.

My mum (who has never met this person and is not celebrated for her senstivity) said “oh, so she’s just a bit gaga then”? She had no idea: frankly, I didn’t have much of an idea.

It’s quite sad reading this thread as I’m just at the start of this journey with my dm.
The rapid onset has been frightening and I can only do so much for her and hate myself for not being able to do more

Sadly I think you are right OP. Although I wouldn’t necessarily want to burden anyone with knowledge about it which they didn’t need, equally I think people who don’t know what the reality is should think before they give opinions.

EmeraldShamrock I didn’t know what you meant about the Type 3 diabetes so I googled it. The hypothesis is much more complicated than you make out and I couldn’t see any basis for the health and lifestyle comment. My mum had the healthiest diet and lifestyle you can imagine. She still has Alzheimer’s.

Notwithstanding the fact that dementia is a) not just a disease of the elderly, and b) that not all elderly people get dementia, the fact remains that percentage-wise the older you get the more likely you are to suffer from dementia, and people are living longer so unless they come up with a cure pdq then it will be an increasing problem.

Am quite upset (in empathy) reading this very thoughtful thread.

Mum was in the throes of it for years, we did what we could, but it is important to remember that we are NOT TRAINED how to deal with it.

The amount of times I was hit, spat at, demoralised and humiliated is unreal, but my siblings didn't seem to get the same treatment from her, so I felt at times like a bit of a drama queen. I am not bitter, it was just a manifestation of her illness. But it was very hard to deal with just the same.

Loved my mum dearly, but this awful disease really tests your mettle. In the end mum went into a lovely care home and blossomed there for many years. Looking back on it it was kind of cruel for us siblings to try and care for her with no professional background or surroundings devoted to dementia care.

We have to be practical. I do realise that depletion of inheritance may feature in SOME people's minds, but at the end of the day your own mental and physical health must win out.

My thoughts and wishes are with anyone trying their best to deal with this. It is very tough, but the only advice I would give, is do your best, and when you feel yourself wilting, you really do have to hand it over to the professionals.

Martyrdom never saved a life.

DH's mum has it. He told me that when he visited her yesterday she thought her DH (died in 2004) was still alive and her kids were little, and was also under the impression she was expecting a baby. She was speaking about how the kids were all playing out, how the baby was due soon and that she needed to cook dinner for her sister (died in 2000). I don't know who she thought DH was.

She gets extremely distressed if you tell her otherwise so the family have learnt not to. It's heartbreaking though. We often get frantic phone calls from her in the middle of the night in hysterics because she can't find the baby she thought she was looking after and DH has to drive over to calm her down and put her to bed.

My mum died of vascular dementia and dad has it now too. Yanbu

I work in dementia care.

Can I just say, and I'm not trying to minimise anything but for some people who have it, they still have quality of life, they're calm, content, social and active.
I appreciate that this isn't common and it does take regular visits from carers but it doesn't always mean losing your dignity.

For those those that have a more well known experience, if you come through a Care home or care service like the ones I work for I promise I will always treat you like a friend, like a person, I will always give you the time of day, hold you hand, give you a smile, even when I'm exhausted and done in.

I had a CT scan recently and it showed markers that some think might be linked to dementia later on in life, I'm not scared, it won't do me any good to panic..I'll have to make provisions and hope I have a carer like the one I try to be to others.

I'm happy to chat to anyone who's relatives and/or loved ones have it.

I love my job, I wish Dementia didn't exist but I get really attached to the families and the service users and I hope I make a difference.

We were really lucky but worked hard for it. DPs mum had vascular dementia but all in all we were able to give her a lot of happy times in her last years. We needed a lot of help from other carers and a wonderful day centre to keep her at home where she wanted to be.

My DGM was one of the calm ones. In all of her years through it she never became aggressive, which was a blessing, and enabled us to care for her at home for as long as we could.

She used to be a psychiatric nurse, though, specically in intensive inpatient care, and she often thought she was back at work. It was both kind of funny, and very difficult. For me (mostly a teen by the time the she stopped recognising me), she thought I was a junior collegue. She'd quiz me. She'd talk me down in a really civilized but kind of brutal way. She'd tell me she'd better be off for the rounds, and I'd be pouring her a coffee, telling her everything's fine on the wards and it's all calm and she can just relax and have a drink, and she'd give me the most scathing look of "who are you to tell me how to do my job". It was harder for DM and DF when they'd be doing stuff like washing her, and she'd panic and assume the position of a patient abusing her, loudly calling for help and doing a "hold" on DM!

I just want to thank whoever PP it was who recommended the dementia research. I'll definitely be signing up for that!

My grandmother had it and it was without a doubt the worst experience we’ve all ever been through. I spent most of my nights sobbing, looking at her old texts to us and wishing I could just talk to her one last time. I was so angry with her because she was there in physical form but not emotionally, and it’s hard to understand that she can’t just snap out of it. If completely broke my mum, having to clean her own mother after she’d been to the toilet and having to hold her and feed her like a child. It sounds horrible but we wished for her to just pass away so she didn’t have to deal with it anymore. It definitely needs to be spoken about more.

@TheMustressMhor
I see what you mean, that that might calm her a little, and may help when for example she think someone has gone to jail, but it seems cruel to let her think that her great grandchildren (mine) have been killed, or that her son (my dad) has murdered someone. I'm totally on board with the kind lies, but letting her believe horrible/scary things is counterintuitive?

At the moment she is having the distressing delusions more or less constantly. Allegedly this was because she had a water infection but she's been clear of that for 8 weeks now

@writersbeenblocked
This sounds quite similar to my gran. It's shit. It must be so scary for them.

Completely agree - both my parents died with dementia alongside other conditions. There's still people who think it's just forgetfulness and don't grasp how much of a person's faculties and ability to fight infection are compromised. It's often akin to a wasting disease. My fit and athletic DF died in a skeletal state with all sorts of other horrific side issues. He wore nappies for 3 years and he knew. He would apologise to carers who changed him. He never feared dying but he feared living like this. It was heartbreaking.

Titsalina what a lovely post, your clients are lucky to have you.

My mum was diagnosed 20 years ago at the age of 57, and lived 10 years post diagnosis. We went through utter HELL as a family because we couldn’t get appropriate care for her because there was no understanding that you could get Alzheimer’s under the age of 65.

My dad was diagnosed with mixed dementia last year, aged 82. It’s been easier to accept because of his age, but he’s had to go into the same care home my mum died in 10 years ago, as it’s a purpose built dementia unit.

I had a nervous breakdown earlier this year because of the total headfuck it all is.

I know about Lewy bodies dementia as my godfather has it.

@TitsalinaBumSquash thank you for what you do. We had amazing Carers before dad had to go to the care home, and they do almost become part of the family

Can I just say that caring for a person in their home by family may not be the best thing for the dementia person in the end, when things get really tough.

Veteran here. I have the scars and bruises to prove it when trying to do home care myself for a few years.

Just saying that what you might think is best for the patient and a sense of duty (yes it is a feature) doesn't always work out.

You all must know that family carers can be beaten down and often succumb before the dementia patient (talking home care here).

Our family came to the decision to have Mum in care in the end. Our entire family was ragged and it was not pleasant.

Best decision ever. Mum lived for many years. She may not have done so if we were doing it ourselves. There is only so much a child or other relative of a sufferer can do really, without compromising their own family life, and their health.

How care is funded is a big worry for many families. After all nursing homes charge over £1000 a week.

@CustardySergeant,

Yes and the carers are not paid a great wage either, from what I read. I do realise that there has to be professional nursing care, and catering and all that also, but still..

Wonder where the profits from all those paying 1k+ a week are going!

Anyway, I don't really care, our Mum was very well looked after and was worth the price for her comfort and on the spot medical care and interraction with others etc.

Care homes are not all bad news.

It's not all worst case. My Mum was a delight, she was happy, cheerful and co operative. But, she also emptied her savings account as she couldn't manage money, couldn't remember to take medication and it all fell apart when she was unwell with other things!
MIL is in a care home, she stayed with us a few weeks we found a suitable one (which was really hard work) she doesn't love it but is getting used to it. Luckily she is able to afford the fees (which, at the moment are actually quite reasonable - less than £700 a week)

Agree with so much here. My dad, now in his 90s, has dementia and it's been awful. He knows just enough to know things aren't right. It must be terrifying for him in those moments. At other times he forgets my mum is dead. I've now got used to lying in response to that but it doesn't feel good.

Thank you Titsalina for what you do, and to everyone dealing with this.

My grandad passed recently and had dementia. I think we looked awful as we were kind of relieved. He was just crossing the line into where he couldn’t live at home, he was confused. He was a strong proud army man with a healthy body who wasn’t that old, who had said many many times ‘shoot me I ever get like that’ in reference to dementia. He got pneumonia and it was kinder. He was unmanageable towards the end, needing high care smaller weaker women just couldn’t do any more. He didn’t want to be away from anyone though, even if he didn’t always know who they were.