Hello I’m new

[Sue2212]

Hello All,
My Oh was diagnosed with Early Onset Alzheimer’s Type Dementia 3 and a half years ago.
im struggling as there is only me. we have contact with ‘ orders agults Dementia service’ in our area.
My OH is 59. The local AS is not geared up for people like us - shame as there are more of us than they seem to realise.
The man I’ve loved and adored for over 30 years has gone. I see his face and then remember the last.
I really would like to say more about how I think and feel but don’t want to seem cruel.
Help
Sue

 

[Sue2212]

Sorry it’s supposed to say Older not orders

 

[Sue2212]

Past not last. so sorry it’s a mixture of tears and predictive.

 

[nae sporran]

Sorry you seem so down and fed up with your local support services, Sue. Have you spoken to your local carers support centre to see if they have carers groups and if they know any memory cafes which cater for a wider age group. Http://carers.org will take you there.
You will certainly find a lot of people on here who are knowledgeable and who will support you. I almost forgot to say welcome to the forums.

 

[Izzy]

Welcome to the forum @Sue2212.

I’m so sorry to hear about your situation. No wonder you feel the way you do. I’m glad you’ve found the forum and I’m sure you will get a lot of support here. Please post whatever you need you feel you need to - nobody here will judge you.

I wondered if it would help you to talk to an Admiral Nurse. You can telephone them but you can also email if you prefer. You can find if you have them in your area by using this link - https://www.dementiauk.org/get-support/admiral-nursing/

Keep posting.

 

[Sue2212]

Thank you for your replies.
We live in a very rural area. 10 miles from the nearest town. ive tried the Admiral Nurses who are in a care home but with no help as myOH is not yet 60.
live tried and trust me I’ve tried other.Carers Organisations but no one seems to cover our area.
I’ve read no end of stuff on the internet and spoken to our GPs
I’m on my own.

 

[Lilstar]

Hi Sue2212,
I’m in the same position my oh was diagnosed in August after pushing for further tests he’s 61 but was first tested 4 years ago.My oh is still managing to work , but personality is changing along with memory. It’s so true the younger people are out on there own as there is no support groups where I come from only for older people. I have a great support worker from Alzheimer’s who visits me every month , the support has been great just to get things off your chest , you could try asking for a support worker .

 

[Sue2212]

I’m sorry that everything I say is very negative but I did try getting a family support worker in February from our local AS branch.
Sadly, I got another small forest worth of info sheets in the post weeks later. on the positive side I’ve been referred to a support worker within our local MH unit that deals with dementia.
OH is now on three monthly cognitive tests administered by a nurse who is worth her weight in gold.
It will all sort out in the wash.
All of my frustration is my fault as I can’t drive as my eyesight has never been good enough.

 

[Abbey82]

Hi Sue, My Dad was diagnosed 16 months ago at the age of 59, he has progressed very rapidly and is currently under a section 3 and we are now trying to find a residential nursing home for him. We have nursed him at home for along as we could. Theres so very little around for younger people with Dementia. We have a support group locally with around 10-12 people all who have Dementia (aged 45-64) and they attend our weekly groups with their families/carers. We've had to build the group up and we do our own fundraising for musical and physical therapies along with days out etc. I'm not sure where you are located and I know not is so hard finding help, but if I can help at all, please message me and I will send you my details.

 

[PJ]

Hi @Abbey82 you are an inspiration! Sorry to hear about your dad’s rapid progression. I’m 53 & was diagnosed 18mths ago & thankfully I’ve been progressing slowly. you dad & others around you with young onset are so blessed to have people like you setting support groups up.
We are quite lucky in North Somerset as we have various Alzheimer’s support groups, Active8 (under 70s) sing 4 the Brain, Active Minds, Tea dance. Plus with the help of our Alzheimer’s support worker we have just set up a group for under 70s where we will meet once a month at a local pub for a good catch up, chat & laugh. Sending best wishes to you & your dad

 

[PJ]

Hello All,
My Oh was diagnosed with Early Onset Alzheimer’s Type Dementia 3 and a half years ago.
im struggling as there is only me. we have contact with ‘ orders agults Dementia service’ in our area.
My OH is 59. The local AS is not geared up for people like us - shame as there are more of us than they seem to realise.
The man I’ve loved and adored for over 30 years has gone. I see his face and then remember the last.
I really would like to say more about how I think and feel but don’t want to seem cruel.
Help
Sue

Hi Sue, you wouldn’t sound cruel. We totally understand your frustration. So much more is available for older people, which of course is great but more needs to be available for the under 70s with this dreadful disease. I know my husband struggles with how much I’ve changed & he is amazing trying to hold down a job & support me. I think there is so much more available where we live but still not enough for under 70’s. Take care & keep chatting we are all here for one another

 

[Mustang66]

Hello All,
My Oh was diagnosed with Early Onset Alzheimer’s Type Dementia 3 and a half years ago.
im struggling as there is only me. we have contact with ‘ orders agults Dementia service’ in our area.
My OH is 59. The local AS is not geared up for people like us - shame as there are more of us than they seem to realise.
The man I’ve loved and adored for over 30 years has gone. I see his face and then remember the last.
I really would like to say more about how I think and feel but don’t want to seem cruel.
Help
Sue

Sue I was extremely lucky when my husband was diagnosed 4 year ago aged 60 BVFTD at the time of diagnosis I was put in touch with a specialist support worker (young dementia UK) who became my life support as always there when needed, have now relocated back to London to be nearer family and found there is absolutely nothing, I felt so alone, everyone should have access to this support, you also have the problem of both being unable to work & not pension age yet, you live of any savings and we have downsized twice, with much needed support we can keep our loved ones at home longer, it was strange because I clicked on a short video the other day of my husband and my heart skipped a beat, I found this forum last week, its good because you can say how you feel, it is definitely helping me

 

[Teddy1960]

Hello All,
My Oh was diagnosed with Early Onset Alzheimer’s Type Dementia 3 and a half years ago.
im struggling as there is only me. we have contact with ‘ orders agults Dementia service’ in our area.
My OH is 59. The local AS is not geared up for people like us - shame as there are more of us than they seem to realise.
The man I’ve loved and adored for over 30 years has gone. I see his face and then remember the last.
I really would like to say more about how I think and feel but don’t want to seem cruel.
Help
Sue

 

[Teddy1960]

Hi there Sue ,

I feel your pain xx I am in same position as you children flown the nest and now this. My husband was diagnosed a year ago but has probably had this disease for 4 years now. I totally agree the Alzheimer's Society is not geared up for younger people and also I work full time it's the only thing that keeps me sane.

 

[Alzheimer's Society]

Hi @Sue2212 and @Teddy1960,

It's Harriet from the Dementia Talking Point team here. I'm sorry to read that you're not getting as much support as you'd like from Alzheimer’s Society.

I just wanted to let you know other places, as well as here on the community, where you can find support for younger people affected by dementia.

We have more information on early onset dementia on our website here: https://www.alzheimers.org.uk/about-dementia/types-dementia/younger-people-with-dementia

We also have our dementia directory where you can find further support organisations or groups in your area: https://www.alzheimers.org.uk/find-support-near-you

There is another national charity called YoungDementia UK, dedicated to supporting younger people with dementia and their families. Their website is here: https://www.youngdementiauk.org/

If you'd like to talk through things with someone directly, you can give our Helpline a call. The line is open at weekends between 10am and 4pm and also open between 9am-8pm, Monday to Wednesday and 9am-5pm Thursday-Friday. The number is 0300 222 11 22 (this is a national rate number and should be part of an inclusive national rate minutes allowance on landline or mobile contracts). You can also email them at helpline@alzheimers.org.uk

In the meantime, please keep posting on here. I hope you both find the support you need.

Best wishes,

Harriet