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SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,986
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Hi
Mum has been diagnosed with vascular dementia I live in Wales no other relatives in England finding it hard to support her as I work full time even though she has carers
Hello @Mo62 and welcome to the Dementia Support Forum. A number of our members care from a distance and they would mostly agree with you that it is a difficult balancing act. I do hope that you find the forum useful. You might also find it useful to start a regular thread on the I care for a person with dementia area, i have attached a link below.

 

Collywobbles

Registered User
Feb 27, 2018
426
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Been here for a while, but haven’t introduced myself yet.

My Granny developed dementia rapidly when already in a care home. It started about a month before the first Covid lockdown, seemingly either triggered or accelerated by a UTI. The UTI cleared up but the confusion never did and it only got worse. The last time we saw her, she was already hallucinating wildly. Her GP gave her ‘weeks or months’ to live, but she managed to hang on for 18 months. We weren’t able to see her for most of that time due to her care home being locked down. She eventually believed that her entire family had been murdered, so if we rang, she accused us of being imposters trying to taunt her, and became hysterical. We had to stop calling in the end. It was awful.

About six months before Granny got ill, my Mum - her daughter - was taken into hospital with a suspected heart attack. We’d known something was wrong for a few years, but the catastrophic hospital delirium meant she left hospital with a formal dementia diagnosis, which was refined to Alzheimer’s a few months later. Mum is now probably mid-stage, and being cared for at home by my Dad. She recognises us and is happy as long as she can see Dad. She has increasing mobility problems (now has the characteristic shuffle and has suffered a couple of falls) and doesn’t eat well. Dad’s not physically well himself, but is currently refusing any sort of help.

I have a sibling - their mother-in-law also has dementia and is about to move into a care home. We’re both local to our parents. We do what we can - which sometimes just feels like waiting for the next crisis.
 

John8501

New member
Jan 25, 2024
2
0
Hi everyone,
I'm a carer for my 93-year-old mum who was diagnosed with Alzheimer's in July 2017. In common with so many carers, I was told virtually nothing when mum had her dementia confirmed. Over the years, I stumbled across the support and advice I needed to care for mum. Meeting other carers at peer support groups has been a major source of information and understanding, and through them I heard about dementia skills training which proved to be extremely helpful to communicate with mum in a manner that helped avoid conflict. I joined the forum in January this year, but haven't posted before.
 

Louise7

Volunteer Host
Mar 25, 2016
5,008
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Hello @John8501 and welcome to posting. It's good to hear that you have managed to find information and advice to help with caring for your mum, it isn't easy, especially when just left to get on with it following a diagnosis. I went through similar when mum was diagnosed, just stumbling along, but it's good that you've found the forum as there is a wealth of good information here, plus support from people who understand. I hope that you find the forum helpful, it's a safe place for posting about how you feel and also for sharing experiences with others.
 

Trezanne

New member
Mar 25, 2024
9
0
Hello... I wonder if anybody can advise me?? My dad has an Alzheimer's diagnosis ...this is fairly recent...he is 77. He has gone downhill very rapidly in the last 18 months....seems like he's hardly with us....almost no short term memory. Anyway, he was rushed into hospital with sepsis recently and was put on oxygen and antibiotics and 24 hours later he was ringing all the family members ...he was back to his old self...it was unbelievable . However as soon as he went home he was back to being non-communicative and quiet again. I've asked his GP to look into this.... whether the increased oxygen or the antibiotics or the medical monitoring of his medications whilst in hospital could be the factor ? He appeared normal for 24 hours. The GP monitored his oxygen levels in his blood for a few weeks, and they were a little bit borderline... but no one is interested in investigating this further? My mum is so worn down that she doesn't want to pursue this .....she doesn't feel able to cope with getting him to appointments or anything. Maybe it's wrong for me to interfere... I feel at a loss....I don't live in the same part of the country, so it's really complicated for me to chase up anybody or be on hand to take my dad to appointments. Any advice would be appreciated 🙂
 

Sarasa

Volunteer Host
Apr 13, 2018
7,493
0
Nottinghamshire
A very warm welcome to Dementia Support Forum @Trezanne. This is a very friendly place and you'll find lots of support here. When you feel ready you might want to start a thread in the I care for a person with dementia forum, as you'll probably get more answers to your questions that way.
As to your dad's improvement, I'm not sure why it happened, but people with dementia can do what is often called round here 'host'. That is when they can appear much more together than usual when in different situations than usual.
It does sound like your mum does need some more support. People who care for people with dementia are more likely to become ill themselves so getting some extra help in for your mum would be a good idea. Maybe suggest to her that she contacts social services for a needs assessment for your dad and a carer's assessment for her. Social services are very stretched so there may be a wait, but it is worth pursing. Even if your father would be self-funding they may well be able to suggest how to get more support.
 

angelagail

Registered User
Dec 3, 2023
10
0
So... I was diagnosed on Oct 3rd 2023 & still can't get my head around it, which is not surprising seeing as it's my head that has the problem!

I have a skip-full of leaflets, brochures, booklets but can't face reading any of them & to be honest, I don't want to read any of them, as what I have read so far only makes me feel worse.

I have a very young temporary social worker - apparently they're all temporary these days & only allocated to an person who needs specific guidance at a specific time to help enable them to successfully negotiate/complete a specific task, in my case moving to somewhere where there is some level of support but I've lived here 13 years & have good neighbours who I have built-up good relationships with so am very reluctant to move.

Plus, what advice I've read says that it's far better for us to stay in our own homes if possible, for as long as possible & the challenges of moving, which is only second on the 'Stress List' to Bereavement, is a big consideration as I don't want to exacerbate my condition.

In short, I don't want to move but needs must I suppose but not yet if I can avoid it!

I would appreciate hearing from any other early diagnosis posters who are also faced with this conundrum & how they dealt with it or are dealing with it.

Warm wishes to all x
 

Sarasa

Volunteer Host
Apr 13, 2018
7,493
0
Nottinghamshire
A very warm welcome to Dementia Support Forum @angelagail. This is a very friendly and supportive place and you'll always find someone around to 'talk' to and answer any questions.
When you feel ready you might like to start a thread in the I have dementia forum, as more people will spot your posts that way.
As for moving, if you are happy where you are I don't think moving at the moment is a particularly good idea. What probably is a good idea is starting to think about what sort of help you need to manage things more easily. The link below might give you some ideas about what is available in your local area.

 
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