To ask for positive dementia stories

[Doughnut100]

Surely there are some people out there whose parents got it, they took care of them and dealt with the whole situation, they eventually died, and it wasn’t utterly harrowing?

My mum has it. (We have lasting power of attorney, I know that’s the thing people always say you need.) She is not your average old person, she runs a business, has hobbies, more of a social life than most of my friends. She never sits down, never watches tv, always thinking, doing, opinionated as hell, won’t be told a thing. Already as mad as a box of frogs, never mind that she can no longer remember anything.

I’m just waiting for the sh*t to hit the fan and wondering if there is any way it might just be ok. Hoping she can stay at home without any major calamities until she’s bad enough to not really know what’s going on, then she will need a nursing home and hopefully there are nice ones out there.

Am I just in denial and deluding myself? Or has anyone experienced this and managed to get through it thinking it wasn’t the worst?

I am sorry in advance for your losses - I am asking people about their parents dying and I do not mean to be flippant about that. Really sorry if this makes anyone feel sad. I’m sad too.

@blueshoes its different for everyone and also depends on the type of dementia. Think there’s easily findable “general” timelines online but my DM is smashing those and apparently should have died 5 years ago.

It usually depends on the age the patient is when they get dementia.

Generally speaking, the younger someone is when the disease starts, the quicker it progresses to death. So a patient aged 60 often only lives about five - seven years after the disease starts.

But someone aged 82 who gets dementia often lives ten - fifteen years with it.

There are exceptions of course, but this is what usually happens.

There was a woman in Australia a few years ago who was diagnosed with dementia when she was 31. She was actually pregnant when she was diagnosed.

She died before her baby was a year old.

I have worked in dementia wards, to be honest although it's not the done thing I go along with their delusions as long as they're not harmful, then re-direct. For example:
Patient: I was meant to finish working in here at 5pm, my kids will be wondering where I am. (Distressed thinking of young children at home alone)
Me: oh you must be so worried, shall we go & get a cup of tea & make a plan?
Patient: I need to go home
Me: I know, I understand you must be so worried but I will help you.

As opposed to other staff saying 'Mary your kids are adults, you're in hospital' which then makes Mary even more upset & distrustful of staff.

Obviously this is dependant on the stage of disease. But when my late grandfather had dementia we also went along with his delusions- it meant he wasn't scared & it really didn't affect us negatively to do so. He often thought he was in the army barracks & we would just agree. I think it's a long tough slog & for family becomes like taking care of a stranger. They may be aggressive, or really upset and scared a lot which can be difficult. I would definitely recommend getting some professional help.

For my Nan it was 11 months from noticing something really wasn’t right to her dying. In reality probably her decline had been going on a couple of years prior to that but she was a proud woman and we think she was hiding it (she has started labelling stuff). At that stage she was forgetting some stuff but we thought it was typical old person stuff.

How long is a piece of string?

When my relative went into a care home, I was told dementia patients only tend to live 3 or 4 years afterwards. That was 10 years ago. They were cared for at home for about 5 years i think before that.

My relative has vascular dementia, they've never smeared poo or anything and they still recognise me, even if they don't always know who I am to them.

The hardest realisation for me was that it wasn’t a case that the person declines unknowingly but the anxiety and downright fear that can accompany that decline.
My own mother can be tearful because her father hasn’t come home to her. He’d be 130 if alive. It’s tragic.

On nursing homes, it always seems too early as they go in but then you see them in another context and realise how bad they’d actually been. Carers can work but only if lots of family are nearby to pick up the pieces when the carers call in sick, aren’t allowed in etc.

It's a distressing diagnosis but ignorance is not bliss.
The drugs available for early stages can be very effective. The difference in my Mum was amazing.
No avoiding the truth that it's very stressful. Get things like POA sorted asap and start introducing some gadgets and routines before they are needed and talk with your Mum. Really talk.
My Mum and I were lucky enough to be really honest with each other and she trusted me to advocate for her.
Whilst her memory loss frequently meant very high stress for me, she was in herself extremely cheerful and easy going. She stayed at home living independently for a good long time. Was considerably more confused out of her usual environment.
Sadly she died from cancer, not dementia and we were spared a lot of what other people experience. I think you have to try and live well and in the moment.
My MIL has recently died from dementia and has spent her last years in a care home which met her needs. She's been pretty grumpy at times and her physical frailty has meant she hasn't got out much. But her death was calm and peaceful. We knew we couldn't care for her after her husband died.
Have a cry - it's sad, but with the right support and forward planning, your Mum's quality of life can be good for some time yet.

Life expectancy depends also on the type of dementia

"The average life expectancy figures for the most common types of dementia are as follows:

• Alzheimer’s disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.
• Vascular dementia – around five years. This is lower than the average for Alzheimer’s mostly because someone with vascular dementia is more likely to die from a stroke or heart attack than from the dementia itself.
• Dementia with Lewy bodies– about six years. This is slightly less than the average for Alzheimer’s disease. The physical symptoms of DLB increase a person’s risk of falls and infections.
• Frontotemporal dementia – about six to eight years. If a person has FTD mixed with motor neurone disease – a movement disorder, their dementia tends to progress much quicker. Life expectancy for people who have both conditions is on average about two to three years after diagnosis."

More information here:

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/later-stages-dementia

My lovely mum died in September so it's still raw but there is nothing uplifting, sorry. It's a fucker.

After an extended stay in hospital at the beginning of 2023 with pneumonia she was discharged for rehab at a home. We all knew there would be no rehab she declined massively and for months she was non responsive and end of life. The good thing I guess is that she didn't know where she was and didn't ask to go home but then she stopped taking.

I pushed for a diagnosis around 2 and half years ago but she likely had it for a few years before that.

Get cares in get onside with her GP and get her a dementia practitioner who can provide support. It's exhausting and the system is broken, so sorry.

Wishing you all the best.

I went along with my mum too @Ohforfox. When she said her mother would be wondering where she was I told her she knew she was safe and wouldn’t be worrying about her. I think “correcting” someone with dementia is downright cruel.

My DM had vascular dementia and it was hard, both physically demanding and emotionally - loosing someone a bit at a time as her confusion increased and her personality faded. We had some particularly tough times, mainly linked to hospital admissions and unsafe discharges and learned how assertively we needed to advocate to ensure she got the treatment and care she needed.

Introducing carers was tricky, we started with someone familiar who did a bit of cleaning and shopping and gradually introduced her making some meals too. As her needs increased she was more accepting of carers going in and we arranged a 7 day care package with upto 4 calls a day towards the end (self funded). My sister and I were also very involved in supporting her to remain at home and ensuring the carers did what they were supposed to (a whole other story - some were brilliant, others not so much). Also practical things around the house - a day clock to prompt day and time, a lockable medicine cabinet, bed downstairs, continence products, extra bedding, a large washing machine and tumble dryer etc.

The GP was brilliant, visiting DM at home on a regular basis and arranging nursing visits to avoid hospital admissions whenever possible as her confusion increased when not in her familiar surroundings, e.g. drips were administered at home when she had a uti and was dehydrated. She also helped us plan for end of life care.
As DM's dementia progressed, her mobility also deteriorated so we didn't have any issues with her wandering. Towards the end she slept a lot and had only short periods when she was awake. We didn't reach the point of considering a care home and she passed away peacefully in her sleep at home with my sister and I there. Thankfully my sister and I have always been close and we supported one another, without her alongside I don't know how I would have coped.

It's a valid approach up to a point but you need to know what she wants to happen going forward and to do that you need to be able to talk honestly.

If you don't have health and financial poas set up, is she still well enough to do so? If yes then, for the love of God, make these your first priority.

Firstly there are different types of dementia with different symptoms so things that some people describe here will never happen to your loved one. Hallucinations for instance do not occur with all types of dementia.

I think it is also helpful to differentiate between the experience of the person with dementia versus the impact it has on their loved ones. My grandmother moved into a care home and was quite peaceful and content. My best friend’s mum ditto. I would agree spend the time now researching care homes so you’re not looking for a place after a crisis has hit.

You need carers that takes a psycho-social approach. They should be asking you about your mum’s history and experiences because that will inform their connection with her. If your mum is a very active person you need to find ways to accommodate that safely. If she is confined to indoors when she has always preferred to be outside she will feel distressed and might communicate that by lashing out or pacing around or vocalising. If the carers don’t know (or care) that she likes to be outside they’ll be focused on her ‘behaviour’ rather than treating the cause of it.

My gosh thank you for sharing that video

"I have worked in dementia wards, to be honest although it's not the done thing I go along with their delusions"

Actually, nowadays it is absolutely recommended that people with dementia are not challenged when they say something impossible (such as "I want to go and see my parents") - the best answer I always found was "It's late - I'll drive you there tomorrow" because the patient then usually calms down and stops (for the moment) trying to find their parents - and of course, what they mean when they say they're going to visit their parents is that they are seeking somewhere where things make sense, where they will be looked after. Because nothing makes sense when you have dementia.

My mantra with dementia patients was always, no matter how off the wall they are, you should invariably agree with what they say. You will get nowhere arguing, and will actually make them more upset.

Imagine if you yourself told someone you were going to visit your parents, and all they did was tell you that your parents were dead. That would be very distressing.

It is always best practice not to challenge patients and not to tell them they're wrong.

If they are convinced that their long-dead husband is taking them out later on, just agree. It is too distressing to tell people over and over again that their loved one is dead, and has been for years. You will gain nothing by distressing them.

@Doughnut100 you say she's not had a diagnosis, so is it possible that you're wrong in believing she has dementia? Has a doctor said anything about her mental state /capacity at all?

As someone who works in the field and has a relative with dementia, you just have to take it every day as it comes.

It's a cruel horrible progressive illness but people can live well with it for a while before they deteriorate which will happen. You have to be realistic. Highly recommend watching anything about teepa snow shes fantastic advocate for dementia care and gives a real insight into the illness her work is very powerful.

Sorry that your mum has this illness OP I hope she remains the same for a long time. Enjoy the good times you have with her make memories.

Highly recommend watching anything about teepa snow shes fantastic advocate for dementia care and gives a real insight into the illness her work is very powerful

I second this recommendation for Teepa Snow. There are many You Tube videos made by her. She is a wonderful advocate and has great insight.

Best advice I read on here - they might not remember who you are but they remember how you make them feel. This is very true.

Diagnosis gets you on the radar, local dementia groups, non means tested benefits like attendance allowance, council tax reductions (or no council tax at all).

Respiridome for paranoia in the early stages has been very helpful.

Your DM might enjoy the groups if she is quite social already.

It’s hard enough dealing with denial from your loved one, don’t be in denial about future care options yourself, no one can predict what will happen but it’s best to keep your options open.

Being around others people with dementia can lessen the fear, everyone seems to react differently, sometimes seeing other people’s symptoms and strengths gives you confidence dealing with your loved one.

You’ll find out which family members you can rely on and who you can’t, it’s an eye opener.

My DM doesn’t remember where she was born or how many siblings she has, but with trigger words I can sometimes still get her to remember In jokes and sayings from the last few years.

No visit is the same, some can be surprisingly pleasant.

Sometimes Mum thinks I’m in my early 20’s, nice 😊

My step mother has dementia and my dad is effectively her carer, though he'd never use that word. She's losing all the hobbies and pleasures she loved, and her mood is often very low, in fact she's sometimes suicidal. Would anti depressants be indicated? I've said she should discuss this with her consultant (she's under consultant for other, life long neurological issues).

My dad thinks he can deal with it all and he is endlessly patient and kind, but I worry about his health, and what would happen if he was out of action. He's started napping in the afternoon, presumably because he's just always exhausted.

Thank you to posters who responded with their experiences and information on my question on life expectancy and duration. I appreciate there are no answers. It sounds like a long journey ahead of them but also that my parents were probably suffering a few years prior to it being noticeable.

My father is in the initial stages where he can seem lucid and is lucid in some areas but his short term memory very poor. He is being preyed on financially by a carer but because I am not living with him, cannot be around to fully stop it. This is quite a nightmare situation to try and manage from afar. Does anyone have experience of this?

@MorrisZapp anti depressants are often very helpful with patients who have dementia. Do ask her doctor about this.

Thank you, I will.

My FIL has had Alzheimer’s for approx 5 years. I would say it’s worse for people round him than it is for him.
learning how to effectively communicate with him, and deal with him for instance when he asks to drive somewhere has mate such a difference- both for him and for the family. As has joining groups locally (dementia choir etc)
I suggest joining elderly parents board on here.

I’m on the fence here
DM was diagnosed with Alzheimer’s 5 years ago - she is on medication which has slowed down progress of her dementia
she still lives alone with only family to support and is still driving - we will stop her if we are concerned
I hope she will die first of other physical issues as feel that would be preferable
positives are that she does not appear to be unhappy or unduly distressed as poor memory actually helps with this - she lives totally in the moment
negatives - we really struggle to manage her (partial) autonomy to not wash, clean, change clothing, eat properly etc without upsetting her as she was previously not like this
it’s also a lot of work for us as a family - I struggle with patience whilst knowing it’s not her fault but after 30x being told the same story in a few hours I want to scream………
positive - she was always quite narcissistic and now appreciates us more!!