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HarrietD

Staff Member
Staff member
Apr 29, 2014
10,113
0
London
Welcome to Dementia Support Forum :)

However you have been affected by dementia, our community is a place to get support from others.

Say hello

This is our welcome thread - the place many members start. Our volunteers and regular members are here to say hello to you and to welcome you to our community.

This thread is for you to say hello and tell us a little bit about yourself, and your connection to dementia.

Whatever you're facing today, we hope you find our community to be helpful and supportive.

How to use the community

You can find out how to navigate the community here.

Any questions?

If you have any questions, you can email us on DementiaSupportForum@alzheimers.org.uk or Use our Contact Form - we're here to help.
 

FluffyBlanket

New member
Dec 30, 2023
3
0
Hi, I'm a fluffy blanket whose husband has vascular dementia, middle to late stage. He had a stroke and having recovered slightly, he developed vascular dementia. He is at the incoherent babbling stage (all night long), doesn't walk well at all, can't perform basic functions of living and his daytime speech is reducing and difficult to understand. His appetite is reducing from having always been a chap who loved his food.

We have two small dogs, and an adult son who lives in the same town as us.

I like to cross stitch (although I don't get the time any more), and crochet (ditto) and reading is a lost art because I don't get enough time to get into a book. I do have talking books but I tend to use those to drown out the night time babbling (I check at intervals that he doesn't need actual help with anything) and that way I can doze sometimes.

And that's us at the moment....
 

wajwilki

New member
Dec 30, 2023
1
0
HI my mum has vascular dementia and is currently in respiteccard dye to her breaking her arm .

My brain hurts 😫
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,785
0
Newcastle
Hi @FluffyBlanket and welcome to Dementia Support Forum our friendly and helpful community. Thankyou for telling us a little about yourself and your husband. Being able to share with people who understand is one of the best features of the Forum. You can also ask questions, join in with existing conversations (threads) and come here to let off steam
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,785
0
Newcastle
Hi @wajwilki and welcome to you too. I am sorry to hear about your mum and the stress this is causing you. This Forum is all about supporting and helping its members based on the experience and willingness to share of others. I hope that we can help you too
 

maggie13

New member
Dec 30, 2023
2
0
My mum is over 75, she had a stroke 9 years ago, and lost her ability to form words, or walk with out aid or wheelchair, she's been very disoriented lately and taken to not eating very much she has lost alot of weight, she keeps saying people are in her garden trying to hurt her, she gets herself up in the middle of the night shouting out sounds and getting very angry, she's aggressive towards my dad her carer, doctor saying not dementia because they can't test her, any help would be grateful, on how to deal with her.
 

Gosling

Volunteer Host
Aug 2, 2022
2,166
0
South West UK
Hello @maggie13 and welcome to this Dementia Support Forum. There is a wealth of shared experience of dementia to be found here, so I am glad you have found us.
I am sorry to read about your Mum. Her behaviour could mean lots of things but it could be dementia. I can only suggest using subterfuge to get her to see a GP to start the ball rolling with a diagnosis. Well woman clinic, or other ruse.. you have to. sadly. Also suggest you keep a written record of her behaviours, etc what she's doing or not doing, getting angry, night time stuff - this will all help the GP, and do attend with her, so you hear the discussion first hand, not just a story from your Mum later. I'm sure others will be along shortly with their suggestions.
I hope you will find this forum useful for information, and any particular advice if you need it, do just ask, as members here really do want to help. You will always find understanding here.
 

lancs lass

New member
Dec 30, 2023
4
0
My lifelong friend has dementia. She lived alone and managed ok with me visiting daily. She developed an infection and was admitted to hospital. From hospital she went to live with her son and daughter in law and they want her to go into care home. They have not discussed this with my friend. They say that there is no point in her going back to her own home as she could not cope. She seems to recognise me but then says that she has not seen me for a long time. Does not recognise son or DIL. I find the prospect of her going into care home very upsetting and would love family to let her stay in their home where she is very content and needs little care apart from meals prepared and guidance around their home. Son and wife are retired but have a good social life. They are lovely people but find the care too much.
 

Brainspam

Registered User
Dec 30, 2023
17
0
My mum is over 75, she had a stroke 9 years ago, and lost her ability to form words, or walk with out aid or wheelchair, she's been very disoriented lately and taken to not eating very much she has lost alot of weight, she keeps saying people are in her garden trying to hurt her, she gets herself up in the middle of the night shouting out sounds and getting very angry, she's aggressive towards my dad her carer, doctor saying not dementia because they can't test her, any help would be grateful, on how to deal with her.
Hi. So sorry to hear.ypur dealing with this. Yes it sounds like dementia. Aggression and behavioural changes are part of it. I don't know why they can't test her...take her to the docs if that's possible. The behaviour changes could also be from her stroke as the destruction of neurons and after time from her stroke the brain with continue to cause changes. Dementia or not the fact of the matter is your mum is unstable to cope with reality and my god isn't it a horrible thing for family to watch this person change! It's a learning process how to cope with someone you love not being the person you love! It's the worst..I have worked with people in that area and now my dad..and I struggle. May e look into moving into a place where she can get care and it's becoming dangerous now and believe me you cannot watch her 24 hours and you will be attacked verbally etc if you try to help. Remember this is not her it's her behaviour! She's still in there ! Look after yourselves and health and regulate your stress to be able to cope is my advice and look into care places. She has cognitive decline etc...so even if you cannot get diagnosis she still is unable to look after herself and would still come under other umbrellas of abilities of irrational behaviour/ cognitive decline.There are other tests MIND is a good organisation and have good advice if cant get a diagnosis! Good luck and wish you the best.x
 

Puma

New member
Dec 30, 2023
4
0
HI my mum was diagnosed with dementia over 13 years ago, but as we dont live with her and due to personal privacy we were not told of the diagnosis. I noticed changes when I visited and argued for a bit till I got her a cleaner to help. Mother is very fastidious (something I suspect is part of a never understood ADHD she probably had all her life) and so the poor cleaner would have her walking around behind her telling her how to do it (she still does this if anyone does anything in her view). I cant remember but I found out a little about mental health through my studies to be a nutritional therapist. I eventually got the LPA’s for health and finance my self (not with my sister as she was at that time just saying mother was being difficult as usual). So 13 years later mother is still at home with 4 carers a day who are amazing. They have evolved from an independant lady and her daughter to a full caring facility who are fab and know how to manage her behaviour which is normally very repetitive (same questions constantly and same war stories over and over). She is 89 and we have had outbursts and hospital visits. She had a fall once and broke a wrist and ended up in hosp with someone to sit at her bed all night to keep her in it. She got home and took the cast of straight away. I did warn the hosp to put a full cast on but they never believe you. I intend one day to right a book about all that happens it is very stressfull and even though she moved 200 miles away 25 years ago with no thought as to how anyone would help her in her later years. I have to manage her and frankly if it wasnt for amazing carers in the North Devon area I dont know what I would have done as I can only get down there every 6 mths or so. We are now at the point she cant remember to use the phone so thats a bit of a relief. But the food situation I have passed to my sister recently as she either eats everything available constantly asking for her meals and telling people she hasnt had one or feeds it to the birds and Ive had enough. The milk bill for years has been over £50 because if she runs out of milk/butter or bread there is hell to pay and the milkman calls me in distress because she has filled up his answer phone. I am just looking into a camera system that she wont take down and throw in the bin along with anything else we have tried over the years to bring in to help her or her carers. She sits in the chair most of the day the only exercise is frequent loo visits as she is less active in the last year or two. I do get lots of people contact me, to ask for help/advise with recently diagnosed family members as we are the only ones they can talk to and laugh about the silly antics sometimes without sounding harsh and frankly there is very little info around to get real help. Good luck everyone living with someone with dementia which to me would be worse than torture, you all deserve a knighthood because the care homes would just drug mother to get her in a manageable state. Which is why she is still where she wants to be in her own home. Patrick Holford has a Brain Health programme and I am considering working with his team and giving talks locally to help teach families how to feed people with dementia with the best foods for brain health. I just havent got round to it yet, so new year new effort.
 
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Pixibel

New member
Jan 1, 2024
9
0
Hello, My mum had Parkinson’s dementia. My father looked after her for many years before he could not cope any longer.
As my mums condition progressed my younger sister who lives very near them called me telling me she could not cope with my parents.
I went to stay with them and realised both my parents were really struggling.
Mam was having hallucinations and falls.
My father who is deaf was loosing his patience with Mum, so I knew I had to help.
It was a 6 hour journey from my home to o my parents home and my sister lives a few streets away.
My Mum had no support for her Parkinson’s condition and it was heartbreaking to realise her deterioration with sinemet tablets.
My father did not read any information on Parkinson’s and no mention of dementia was ever discussed from the doctors, or at the 2 visits from a Parkinson’s nurse.
Both live in a very isolated area.
As Mams conditions deteriorated Dad began to get more impatient and angry, as she had more falls and more severe hallucinations.
He refused any help and became quite angry shouting if she fell or slipped from her dining seat.
Myself and my sister tried to help but Mum and Dad said they wanted to live their lives independently and stop interfering.
Every time I left them and travelled back home my sister would call me screaming down the phone that she couldn’t cope with them and I would have to return the next day.
Eventually I had to spend the next 4 years staying in the town to be near my parents as Mams condition deteriorated.
I tried to get more support for her. Occupational therapists and I applied for a grant for a toilet and shower downstairs and equipment to support her.
My Dad was furious and did not want any change to their small terrace house.
I stayed near them at an old friends flat in town to be near and took my mum to a support group every Thursday, which she enjoyed.
I took her to specialist appointments and the doctors.
I spent as much time with them as I possibly could but also gave them their space and again every time I went back home my sister would call screaming down the phone she couldn’t cope with them.
Eventually, after Mam had several bad falls and ambulances were called, then Mam became incontinent Dad refused to have her at home.
She remained in the ward for 7 weeks until a meeting was called.
Dad visited her every night but refused to have her back home. He has been deaf for many years and doesn’t deal with anything.
He just switched off.
I had to deal with the hospital placement service which only offered my Mum a care home place.
The entire process was heartbreaking.
I realised my Dad had OCD personality disorder and could not deal with any change to his routines. Or his environment.
He refused any changed and could not deal with anything official, or bills, talking or communicating.
Then my sister found out she had cancer.
I had to take responsibility for everything. I quickly applied for POA, just in time to deal with social services I added my sister too.
for my Mum and Dad.
She had to start treatment for cancer and surgery so I had a lot to deal with without causing her any stress.
Anyway after a heart attack and several strokes Dad is now in the same nursing home Mam was in until January last year. after living in a care home and eventually a nursing home she passed away end of January this year.
It’s been a totally heartbreaking time for all my family.
I did not expect that both my sisters have been so angry and aggressive over my fathers house and money and the fact that I am POA,
It’s destroyed my life.
Has anyone experienced this hatred from siblings.
It’s become unbearable…..
 

Linda w

New member
Mar 4, 2023
2
0
HI there my mum has Dementia but at the moment things have rapidly declined..she had started phoning us (her 3 daughters) all through the night asking when we are picking her up to take her home...but she is at home.. she has started to now pack up the whole bungalow into bags ready to go home...such a worry and seems to be escalating so fast.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,397
0
south-east London
My lifelong friend has dementia. She lived alone and managed ok with me visiting daily. She developed an infection and was admitted to hospital. From hospital she went to live with her son and daughter in law and they want her to go into care home. They have not discussed this with my friend. They say that there is no point in her going back to her own home as she could not cope. She seems to recognise me but then says that she has not seen me for a long time. Does not recognise son or DIL. I find the prospect of her going into care home very upsetting and would love family to let her stay in their home where she is very content and needs little care apart from meals prepared and guidance around their home. Son and wife are retired but have a good social life. They are lovely people but find the care too much.
Welcome to Dementia Support Forum @lancs lass . I am sorry to hear about your close friend - and you are clearly very worried about her.

I know that the idea of your friend staying with her family seems the best answer to you, but people often do not understand just how big a commitment that can actually be on the ones doing the caring.

I am sure the son wants the best for his mother (as do you) in order to make sure that she is safe and well cared for. It is never an easy decision for family to consider a care home for their loved one - but many find, once the decision is made, it really does work out to be the best for everyone.

When you are ready, perhaps start a thread in the I care for a person with dementia area to keep us updated and to discuss your worries and concerns further.

I am sure others will share their support and experience with you - and hopefully put your mind to rest a bit.
 

Garyd007

New member
Jan 4, 2024
1
0
Hi All,
I hope things are not too bad with/for the members of the community.
Thanks for being here.
My mum of 83 was diagnosed early this year with early on-set non-specific dementia.
She lives alone.
We, her three children have different issues and are not immediately local.
It now appears to be more advanced than we expected.
She appears now to be forgetting to take her medication and soils herself.
She has also lost weight and though she says she is eating, she is obviously not.
Mum forgets our and her grandchildren's names.
She cannot recognise all written words.
My sister, who has anxiety/stress problems, has today told me she had a row with mum over the soiling, telling mum she is going to have to arrange care visits and 'meals on wheels'.
Sis said mum told her that if this happens she will no longer speak to her!
I know we need to get control of the situation (we have applied for POA), but we do not know how.
We really are quite useless!
So, there we are.
I hope I can learn some good and appropriate behaviours from your good selves.
All the best.
 

Josa

New member
Jan 4, 2024
2
0
Hello
I’m frazzled my dad has Alzheimer’s. My mum is physically unwell and having palliative care. She wants to be at home with dad . dad is uncooperative verbally aggressive and threatening. I’m cooking, cleaning ,policing,physically caring ,project managing the authorities.
I’m knackered and at end of tether it’s a **** show ,if it was dramatised on a soap opera the audience would switch off as unbelievable.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,785
0
Newcastle
Hi @Garyd007 and @Josa and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia. This is a great place to ask questions, share with people who truly understand, get good suggestions and ideas and let off steam when you need to.
 

Cleopatra484

New member
Jan 6, 2024
1
0
I’m a full time caregiver for a dear friend, who’s 66, and I got him diagnosed in 2019, with early onset dementia. He has frontal lobe.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,785
0
Newcastle
Hi @Cleopatra484 and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia. Here you can ask questions, get helpful suggestions, join conversations and more besides. You'll find understanding and empathy here.
 
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