West, Mid and North Devon...is there anybody else out there?

[Harriet66]

We are trying to start a support group for people under 65 with dementia and their carers in West, Mid and North Devon. If you live there you will know that there isn't any support specifically for this age group. At the moment we want to keep it informal - meeting up for coffee in Okehampton so we can chat and hopefully feel less isolated. If you're interested, please PM either of us - just remember not to post any contact details on the forum.

Best wishes,

Harriet66 and Roseash

 

[roxane]

Sounds great - I live in Somerset so a little too far to join you though the M5 Junction 26 is very close to me. Hope you get some enthusiastic support.
Lis

 

[roseash]

Hi Roxane

Thanks for responding to our post, shame you live in somerset, Don't suppose you would consider moving to Devon, to take our group up to the grand total of 3

best wishes Rose

 

[Vivienne3]

You could always skype to join in if your little group of 3 has internet & a web camera - like a little video conference - this is 'x' reporting from '?' It could increase you members.
We use it all the time at work to speak to clients.
there should be more support for the under 65's as their needs are slightly different. My husband was 49 or younger when he started with Alzheimers and it is difficult to find anything suitable for his age, including a home for the future as I will not be able to support his needs working full time to pay the mortgage and bills.
Good luck with your group.

 

[Harriet66]

Hi Vivienne,

Thanks for replying. I'm sorry to hear about your husband - how long have you been caring for him?
We're certainly finding that there really isn't anything much here for the under 65's. I work aswell in order to keep the mortgage/bills paid so I understand the worry about finding a suitable care home if/when the need arises.

As to Skype - well at the moment, we will be meeting in a local cafe so Skyping in a public venue may not be possible. It may be something for the future though.

All the best,

Harriet

 

[roxane]

Hi Rose, I am sure you will with time find more people who will be grateful to you
attempting to start a support group for carers of young people with Dementia.
My husband (54) and I have a hospital appointment on Wednesday to see a Dementia Specialist. It will now have taken almost three years before a diagnosis. We have conditioned ourselves to the change in lifestyle but time has come when I need help.
I do hope you go ahead with your meetings and perhaps I one day will treat myself to a drive to Mid Devon.
Best wishes to you
Lis

 

[Harriet66]

Hi Roxane,

We would love to see you if you can make it one day

Hope the appointment is useful - 3 years is a long time to wait for a diagnosis. Let us know how it goes.

All the best,

Harriet

 

[roseash]

Hi Lis,
As Harriet says you will be more than welcome to join us .

That certainly is a very long time to await a diagnosis, If you don't mind me asking why has it taken 3 years?

Wishing you all the best for wednesday , please keep us posted

best wishes Rose

 

[roxane]

Thank you for the invite.
My husband has a condition called SCLERODERMA, he has had it for over 20 years. It is hardening of the connective tissue - all skin and also organs.
He was signed off sick two years ago after accepting he had some problems with his memory - he had been forgetting things for a long time but denied it. The GP thought of depression and attempted treatment with antidepressants which had no effect at all.
My husband complained of times when he felt vacant, he had difficulty swallowing, stuttered, shuffled when walking, got stuck in doorways, very much like Parkinsons Disease. Many changes in personality and behaviour. He then had seizures and started taking medication to control both seizures and also Parkinsonism. All test done. He is not Epileptic nor has he got Parkinsons Disease. Neurologist wouldnt give a diagnosis ans he feared it could be the wrong diagnosis. Neuro Psychologist did tests and suggested vascular dementia or frontal lobe damage. I suggested Lewis Body so we tried EXELON or Rivastigming with some effect fro 6 months but the seizures then reoccurred so I gave up on this as one of the fits took place on morning at 3.30 half way down the stairs.
We have got so used to life as it is - I feel 20 years older in the life I live as we live like two OAPs. Our two children at 20 and 17 prompt me into reality.
Yes, tomorrow shall be very interesting though I find it so emotional - hard to be honest about ones husbands ability when he is present.
Think positive is the present moto.

 

[Harriet66]

Hi Roxane,

My husband has had seizures culminating in a major grand mal seizure which landed him in hosital for 10 days last year. Unlike your husband he was diagnosed with epilepsy and Binswangers disease and put on Epilim and Aricept. I know just how scary those seizures can be - and how draining to live with the fear of what will happen. When we see my husband's consultant he will always make an effort to talk to me separately as he knows how evasive my husband can be! I have also sent in letters with a nurse to the consultant just before a meeting if there is something I feel he needs to raise with my husband.It means I am doing stuff behind my husband's back - but I'm doing it to help him so I try not to feel too guilty Any medic worth their salt will know how valuable information from a close carer will be.

My husband always has seizures if he goes down with an infection of some kind [especially tummy bugs/flu]. He can't tolerate very cold/hot temperatures either as they trigger seizures - so there goes the holiday in the Maldives then!

Fingers crossed for you tomorrow.
From a fellow 'OAP'
Harriet

 

[roseash]

What a dreadful time you have all been through, fingers crossed for a proper diagnosis tomorrow.It must be very worrying for your children too to see their father like this.I also have children 20,18,17,15 and and know how difficult it can be.

 

[justbill]

okehampton bash

Yes there is , in reply to your answer .We live in East Devon so not too far away . I care for my wife who is 62 and is 5 or 6 years into systematically driving me mad , I would welcome the chance to meet up on an informal basis. When I work out the private message thing I will get in touch to find out your itinery. `

 

[roseash]

Hi Bill,

You will be more than welcome to join us to let off some steam

hope to hear from you soon

Rose

 

[Dolly27]

Hi all, as Devonians, I'm sure you've heard of norms macnamarra , he has early onset dementia himself, and is very involved in raising awareness for early dementia, also runs a memory cafe , etc and has been involved in the Torbay dementia action alliance , hope you find this information helpful ; good luck in your aims to have a group .....

 

[harleychick]

Hi harriet66 and roseash
Good luck to both of you trying to get a group together in north Devon.
I live in East Devon. My husband is only just 50 and was
Diagnosed with Familial Alz Disease at the age of 46 but I know
the symptoms started many years before now looking back! In the last year he has deteriorated rapidly and the last 3 months have been dreadful. So much so that 3 weeks ago he was moved into a care home after spending 2 months in a special unit in Exeter. It was the most difficult decision I have ever made and I am still struggling to come to terms with it but I know it is the right decision. We have 2 teenage daughters, 15 and 17, and he deteriorated so much that life at home became unmanageable. My girls are amazing but it has been hard on all of us. I did start to read the forum last year but things became so difficult at home that I didn't even hv time to read the blog. I hv just come back to it this last week!
Mike and I used to attend a younger persons group in sidmouth once a month which was wonderful. I still go but that has been under threat recently!!!! Also the dementia day are unit in sidmouth has now closed down.....and the government says they will do more!!!!!! I'm not seeing that! I still go to the meetings when I can as the support is invaluable from the other carers. I wud love to perhaps join u one day at one of yr meetings but currently I struggle to fit everything g in with my visits to see mike. I also attend support groups in London at UCL where they give talks and support on Familial alz.
Sorry I've rambled a bit..... I just wanted to let u know I'm not far away from u both. All the best and keep strong
Liz

 

[Harriet66]

Hi all, as Devonians, I'm sure you've heard of norms macnamarra , he has early onset dementia himself, and is very involved in raising awareness for early dementia, also runs a memory cafe , etc and has been involved in the Torbay dementia action alliance , hope you find this information helpful ; good luck in your aims to have a group .....

Hi Dolly27,
Yes I've heard of Normms and his amazing work. It is on my 'to do' list to contact him
We originally looked at starting a group in the areas of Devon that have no support at all, but we are struggling to find more people. Still waiting to hear back from consultants and GP's so hopefully the word will spread gradually.
Thanks for the input - much appreciated.
Harriet

 

[Harriet66]

Hi harriet66 and roseash
Good luck to both of you trying to get a group together in north Devon.
I live in East Devon. My husband is only just 50 and was
Diagnosed with Familial Alz Disease at the age of 46 but I know
the symptoms started many years before now looking back! In the last year he has deteriorated rapidly and the last 3 months have been dreadful. So much so that 3 weeks ago he was moved into a care home after spending 2 months in a special unit in Exeter. It was the most difficult decision I have ever made and I am still struggling to come to terms with it but I know it is the right decision. We have 2 teenage daughters, 15 and 17, and he deteriorated so much that life at home became unmanageable. My girls are amazing but it has been hard on all of us. I did start to read the forum last year but things became so difficult at home that I didn't even hv time to read the blog. I hv just come back to it this last week!
Mike and I used to attend a younger persons group in sidmouth once a month which was wonderful. I still go but that has been under threat recently!!!! Also the dementia day are unit in sidmouth has now closed down.....and the government says they will do more!!!!!! I'm not seeing that! I still go to the meetings when I can as the support is invaluable from the other carers. I wud love to perhaps join u one day at one of yr meetings but currently I struggle to fit everything g in with my visits to see mike. I also attend support groups in London at UCL where they give talks and support on Familial alz.
Sorry I've rambled a bit..... I just wanted to let u know I'm not far away from u both. All the best and keep strong
Liz

Hi Harleychick,
It's good to see you back on the forum though very sad to read your news. I remember reading your post at the end of last year.I'm so sorry to hear of your husband's deterioration - it must be a very difficult time for all of you. Things seem to have moved very fast in your husband's case.
It's terrible that all the services in your area are closing down. We are in the 'backwoods' out here where little was ever done for people of our age, so we're starting from scratch.
Do the meetings at UCL only cover Familial Alz? Do they do meetings for people with vascular dementia too? I'm struggling to find reliable info about my husband's condition - very few people in the profession have ever come across it.

It would be great to see you at a meeting. Hope that your husband settles and that things become calmer for you all.
All the best,
Harriet