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Welcome to Talking Point - introduce yourself here

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Ludi

Registered User
May 16, 2017
2
Hello everyone, my husband has Alzheimer's and is at present in hospital after falling downstairs and breaking his arm. He is delirious at times and his dementia has got worse during the 10 days he's been hospital. He has consistently refused almost all food and drink and has said he wants to die. He had already told me months ago that when he lost his independence and his abilities he wanted me to help him die. We both believe that he should be allowed to make that choice, although of course we know it's not legally allowed. I also think that Alzheimer's should be classified as a terminal illness, as there is no cure; nor is there likely to be one in the next few years. Are there other people on this Forum who feel the same way as myself and my husband?
 

LadyA

Registered User
Oct 19, 2009
13,611
Ireland
Welcome to Talking Point, @Ludi . I'm sorry to hear about your husband's fall and stay in hospital. Unfortunately, the unfamiliar environment and trauma of the fall can have quite an impact on his dementia.

I think you would find many here who would agree with you about Alzheimer's disease being a terminal illness.
Maybe you would like to start your own thread, where you can keep track of responses more easily. Just go to the "I have a partner with dementia" section, click the blue "start new thread" button, give your thread a title and type your message. Also, feel free to join any existing discussions on the forum.
 

yellowrose

New member
Feb 18, 2018
7
Hi,

I'm Leanne, I'm 33 and live with my partner and my two children.

At the beginning of last year my dad was diagnosed with FTD at the age of 57 due to a mutation in the c9orf72 gene. My grandma, dad's mum died at the age of 59 of undiagnosed FTD/ALS and my dad's cousin died last year aged 54 from ALS.

It is awful seeing how my dad has gone from a very social man, to how he is now.

We have been told that there is a 50% chance that we have inherited the mutated gene. I have one sister and two brothers.

I have made the decision to be tested and after a long process, the bloods have been taken and I am due to get the results at the end of the month. I am the first to find out as my sister and brothers are not finding out at the moment.

I hope to be able to speak to people in similar situations.

Leanne x
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hello @MrsFl3tch, welcome to TP. You will find this a friendly, informative and supportive forum.

Do have a good look around the site and post any questions you have of comments you wish to make.

If you wish to start your own thread about the genetic aspect of things I'm sure members with experience will come along to comment.


To start your own discussion:

1. Find a forum that is relevant for you [e.g. Memory concerns and seeking a diagnosis ]

2. At the top, you'll see a button called 'Post New Thread' - click or tap on this.

3. Add a discussion title and below, add your message. Then click or tap the [Submit thread] OR [Create Thread] button.
 
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mgtvn

New member
Hi just joined today. My mum is 88 and has dementia - she is still living at home being looked after by my dear old dad who is 91. Luckily my youngest sister who lives nearby helps them a lot as my mum basically can do nothing.
I am the eldest of 4 daughters and have always been the closest to my mum of the four of us. Unfortunately nearly 40 years ago my mum introduced me to a lovely Dutchman they had met on holiday. So now I live in Rotterdam. I come over about 6 times a year and stay a week with them. It gives me time with them and also I can do some of the bigger jobs and give my dad a rest.
I can see mum getting more and more confused and forgetful and sleeping more and more. She was very creative and we spent hours doing things together but that has all gone now - she will glance at a book but 10 minutes and she puts it down.
today has been very hard as she will not get dressed will do nothing and is very arguementive. She does not realise she is in her own home. My dad is very quiet not a talker and my mum is (was) a chatterbox - now she feels there is no live between them anymore - so sad to hear when he is really doing his best for her.
My sister who lives nearby has not talked to me for years but will also not tell me why so I feel very alone here.
Today I had the terrible thought that it would be kinder if mum was just to pass away in her sleep as her life seems so empty and lonely, and I feel so guilty about that thought - in tears writing this
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hello @mgtvn, welcome to Talking Point. You will find this a friendly, informative and supportive place.
We are all on the dementia journey together and even though we are at differing parts of the road we will understand your feelings.

Do have a good look around the site and post any questions you have of comments you wish to make.

If you wish to start your own thread about any aspect of things I'm sure members with experience will come along to comment.

To start your own discussion:

1. Find a forum that is relevant for you [e.g. https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ ]

2. At the top, you'll see a button called 'Post New Thread' - click or tap on this.

3. Add a discussion title and below, add your message. Then click or tap the [Submit thread] OR [Create Thread] button.

You may find this thread useful in relation to communication with a person with dementia(PWD):
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

Macduff

Registered User
Feb 16, 2018
52
West Sussex
Hello, I've recently joined up and for the past few days have been trying to introduce myself online. Every time I fire up the laptop my wife (who has dementia) interrupts and wants to talk.So, briefly...we've been together for 41 years this is year six of dementia.Started up not long after we retired. I am currently trying to get help via social services and looking for respite care too. Waiting for my appointed case manager to get in touch. My wife is totally against this and says she would rather go into a home than have a stranger come into to house. I guess I'll have to get a professional in to talk to her. Joined up to Talking Point to air a few special difficulties and will do so very soon.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, @Macduff ...welcome to Talking Point. It sounds like you are quite experienced in caring for your wife. It is such a horrible disease, and there is never a good time for it to develop, but immediately after retirement does seem particularly cruel. We all know the feeling of never having a moment to ourselves, but I do hope you get the chance to check in here, and post regularly... you will find that the isolation of caring is mitigated by sharing with others in the same position.
You might want to consider starting your own thread when you begin to post so that you have all your answers and replies in one place. When you feel ready and get the chance, click on ‘forums’ then select ‘I care for a partner with dementia’ click on start a new thread.
I am sorry you have the need to join us...but I am sure you will find the advise and support you find, invaluable.
 

Vicxc

Registered User
Nov 27, 2016
6
Hi There ,
My mums recently been diagnosed with the early stages of alzeimers & when not sleeping , over thinking , i came across this forum . Hoping to get advice and how to cope from people experiencing this same situation . I had suspicions about my mum for a year , conversations we had , repeating or forgetting . Eventually came to a head when my Mums work colleagues raised concerns about her welfare which luckily pushed the doctor appts and the recent memory clinic diagnosis. We are awaiting a brain scan but unfortunately my Mum believes i tricked her, believes shes ok & is ignoring me. I know its part of the illness but im not the strongest emotionally . Though i try to not take it personally , try and be delicate with her but it seems im not in her good books . I cant help but think of the long road ahead but i have grabbed optimism from posts ive read. Im hoping i can hold on to the Mum i love for many years to come & we can fight this thing together
Hi There ,
My mums recently been diagnosed with the early stages of alzeimers & when not sleeping , over thinking , i came across this forum . Hoping to get advice and how to cope from people experiencing this same situation . I had suspicions about my mum for a year , conversations we had , repeating or forgetting . Eventually came to a head when my Mums work colleagues raised concerns about her welfare which luckily pushed the doctor appts and the recent memory clinic diagnosis. We are awaiting a brain scan but unfortunately my Mum believes i tricked her, believes shes ok & is ignoring me. I know its part of the illness but im not the strongest emotionally . Though i try to not take it personally , try and be delicate with her but it seems im not in her good books . I cant help but think of the long road ahead but i have grabbed optimism from posts ive read. Im hoping i can hold on to the Mum i love for many years to come & we can fight this thing together
Hi mipsydo, your story sounds very familiar to me. My mum was diagnosed with Alzheimer's last year, after 3 years of trying to get the Dr to take notice. She doesn't believe she has any problems, maybe some anxiety. I have the support of my siblings, and ironically we all have years and years of working experience of dementia, but even that cannot prepare you for the reality of a loved one being diagnosed with this cruel disease. I'm losing my mum piece by piece, but it's tough remembering the good times, over the frustrating times.
I don't know what the near future will be, I'm just trying to create a happy moment in each day for my mum to smile at.
 

JOD1501

New member
Feb 18, 2018
5
Hello everyone. i have just signed up today as I have slowly come to realise that I need support caring for my wife .She is 69 and has been living with Alzheimers for nearly 5 years .We have been married for 48 years and met at school!!The thing that as made me turn to Talking Points is that just this week she has is telling me that her husband has gone away. She talks to me as if I am a new person come into her life and home and asks me all about myself and telling me of the things she likes doing with her husband .She wonders where he has gone but is glad i'm with her to care and support her.She may slip back into realising I am her husband but then goes back to wondering where I've gone again.I feel such a sense of loss.
 

JOD1501

New member
Feb 18, 2018
5
Hi Bluesman,

My mum calls everybody my name, whether they are male or female. I used to correct her, but I don’t anymore as it’s not causing any harm, apart from makes me feel sad. You know who she is, and that’s what counts.
 

Solar

New member
Feb 19, 2018
1
Hi, just joined today. My mum was diagnosed with Alzheimer's in 2015, she also has dysphasia which means she cannot get her words out which is like a double whammy. My dad is her carer and is doing a fantastic job but, things have snowballed and mum now has double incontinence. To see my mum who was so vibrant, so clever, so loving and full off life suffer this awful disease makes me sad, I either see or ring my parents every day now I work full time and feel super guilty that I'm not there more. The sadness is overtaking and the frustration of knowing there is no cure and things will possibly get worse blows my mind. I don't understand this awful disease.....you eat right, you exercise, you do crosswords keep your brain active yet still it attacks you.
 

LadyA

Registered User
Oct 19, 2009
13,611
Ireland
Hi, just joined today. My mum was diagnosed with Alzheimer's in 2015, she also has dysphasia which means she cannot get her words out which is like a double whammy. My dad is her carer and is doing a fantastic job but, things have snowballed and mum now has double incontinence. To see my mum who was so vibrant, so clever, so loving and full off life suffer this awful disease makes me sad, I either see or ring my parents every day now I work full time and feel super guilty that I'm not there more. The sadness is overtaking and the frustration of knowing there is no cure and things will possibly get worse blows my mind. I don't understand this awful disease.....you eat right, you exercise, you do crosswords keep your brain active yet still it attacks you.
Good morning, @Solar and welcome to Talking point. I'm sure you will find lots of help and support here from our members. Have a browse around the site, join in any ongoing threads that catch your eye, and you might start a thread of your own, in the "I care for a person with dementia" section: https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ Just click the "post new thread" button.
 

traynor1931

New member
Feb 19, 2018
1
Hi my mum is 83 and lives alone since my dad died 14 yrs ago , she’s a,ways been very independent but I’ve e kticed her repeating herself a bit of mild confusion for a couple of years but in October she got a water infection and got anti biotics for this and we thought that once the infection was cleared she would return to her normal self . This did not happen as just as she was starting to feel better she got knocked down by a cyclist and left on the floor , she broke her wrist in this accident and things have got a whole lot worse since this time . We got a diagnosis from the memory clinic last week of mild Alzheimer’s and mum was started on some medication . Will the meds help her memory or just stop it getting worse ! She doesn’t sleep well at all and hasn’t done for years would it help if she got something to help her sleep and would this help with the level of confusion and i also think she’s even more depressed than she was before diagnosis but has never spoken to her dr about this, do antidepressants help does anyone know ? I work full time in a very stressful job and most of mums care is getting left to me even though I work the most and live the furthest away from mum , with my sister working 16 hours a week and living a 2 minute walk away ...I would appreciate any suggestions on how to get my sister to step up and take on more responsibility as I’m finding it very tiring.
 

imsoblue

Registered User
Feb 19, 2018
354
Last night I googled " what does it feel like to have dementia", and this site was in the listings. It has been a godsend and I haven't even been a member for 24 hours! My husband of 21 years (age 71) was diagnosed with dementia December 15. I suspect it's a result of his Parksonism. He does not have Parkinson's, he has Parkinson's PLUS and in his case it's called Primary Progressive Freezing of Gait. It began years ago with shuffling of feet, but when it became worse (falling down, not being able to get through doorways or off elevators, it progressed rapidly and within a few months he is now totally dependent on a wheel chair. He is irritable and angry at me. He has 2 daughters that live 2 hours away and I work full time.
We had a big commotion at 3am and as I tried to return to sleep, the words I read on this site were my comfort. It is truly a blessing to read the knowledgeable statements, the comments from those that have gone before me, and the love that flows among this total group of strangers.
My commotion is too raw to discuss right now, but I will say that about noon today I was comforted through his text that he was leaving me....that's the second time I've been threatened with that (the first was in August when he was not even diagnosed!). He says he's going to live with his single daughter...another story for another time.
I look forward to reading your escapades, your triumphs, and your resilience. Thank you for letting me be a part of the group. I needed a friend today!
 

nellbelles

Volunteer Host
Nov 6, 2008
8,793
leicester
Hi,

I'm Leanne, I'm 33 and live with my partner and my two children.

At the beginning of last year my dad was diagnosed with FTD at the age of 57 due to a mutation in the c9orf72 gene. My grandma, dad's mum died at the age of 59 of undiagnosed FTD/ALS and my dad's cousin died last year aged 54 from ALS.

It is awful seeing how my dad has gone from a very social man, to how he is now.

We have been told that there is a 50% chance that we have inherited the mutated gene. I have one sister and two brothers.

I have made the decision to be tested and after a long process, the bloods have been taken and I am due to get the results at the end of the month. I am the first to find out as my sister and brothers are not finding out at the moment.

I hope to be able to speak to people in similar situations.

Leanne x
Hi welcome to TP @yellowrose
Leanne what a difficult situation, my family has a long history of Alzhiemers and yes I’m concerned about my future.
I think you are very brave to take the test but sometimes it’s better to know what is ahead of us.
Please keep posting so we can support you.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,793
leicester
Hi @imsoblue welcome to TP
I’m sorry that everything is so raw for you at the moment but we are always here for you, maybe it it will help to start a thread of your own so we can support you
 

LadyA

Registered User
Oct 19, 2009
13,611
Ireland
Welcome @traynor1931 I'm glad you've found us, and am sure you will find a lot of support here.

I'm sure that your mum's confidence has taken an awful knock, between the accident and the diagnosis. Not at all surprising if she's feeling depressed! Definitely worth mentioning to her doctor, I would think.

Maybe you would like to start a thread of your own, in the "I care for a person with dementia" section, where you would be better able to keep track of responses. Just click the blue "post new thread" button, give your thread a title and write your message in the box. https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
 

peggy1967

New member
Feb 18, 2018
2
Recently my mum had to go in to a ch to get the 24/7 care required. Mum has adv dementia, imobile bedbound and whellchair bound, incontinent both ways.

I came across this site/forum doing a net search looking for support and it is supportive to read about other persons experience.
 
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