young onset alzheimers disease

[mousie]

Hi,

I need to have contact with others who partner someone with young onset alzheimers disease, my husband is 60 I am 54 and still working.

Thank you,
Mousie

 

[zeeeb]

Hello and welcome. My mum has early onset. she was diagnosed at 57. she is 58 now and also has a parkinsons diagnosis (yay, double whammy). My dad is 61, and still working, still trying to run his own business as well as trying to care for mum and do things while she still is able to.

It's certainly not an easy path. I hope you can find the support you need here. I've found TP to be a wealth of information and support.

 

[Jo1958]

Mousie, hello and a very warm welcome to Talking Point

I am 54 too and hubby is 62, he has Lewy Bodies Dementia which is now fairly advanced and he is in a Nursing Home.

I gave up full time work when he became ill and then worked part time for two years until that got a bit much, we had four years at home together before he went into care last March, goodness how time flies!

I visit him every day but will have to go back to work later this year as the savings are running out and I have no income, it's a big step giving up your work and I know others on here who have continued to work with support from family and outside carers, it's a very tough decision at our age, well at any time really.

Welcome and I hope you find lots of help, support and friendship here. I look forward to seeing you around.
With best wishes from Jo

 

[julientuareg]

Hello Mousie, My partner is now 63 and was diagnosed officially 2 1/2 years ago although the symptoms were fairly obvious for some time before that. I am 52 and continue to work full time as I have a mortgage to pay as well as the other bills. I am lucky that my partners family are able to provide care through the week, along with some help from the Alzheimers Association. I have to say that I feel the progress of the disease has been fairly rapid and it is likely that within the next few months my partner will no longer recognise me.
I wish you all the best as you come to terms with this terrible disease and I am sure that any questions posed by yourself will be answered honestly and with knowledge. We are mostly all in the same boat here in one way or another.

Julie

 

[XY123]

Hi mum has AD she's 53. Dad is still working but has reduced his hours slightly. He now works from home one day and has another off so she's on her own for three days. I call in on those days to see (check up) on her! It's a painfully difficult disease but made increasing difficult when the main carer/supporter is still working.

 

[KalliH]

Hi

My wife has early onset dementia and is 59. She is in her second year in a nursing home after being told that she was too dependent on support to be allowed home. She has settled in well despite a few problems getting her medication levels right, and she is generally happy when I visit.

Although I no longer have the daily support issues to deal with which I had for a couple of years, life is very difficult for me. I'm at work or commuting for at least 11 hours a day and the only suitable place for my wife is a good forty minute drive away so I only manage to see her on Saturday and Sunday most weeks. Consequently, life is lonely and mostly pointless - the only thing I look forward to is the visiting days even though I sometimes get little response from her.

I hope that you are managing better than I am and find the support you need.

Steve (also 54)

 

[stanleypj]

Welcome from me. I'm five years older than my wife. She was first referred to the memory clinic aged 50 and is now 63. You might find my blog interesting (link below). As you are probably aware, there is a real problem for people with young onset and their carers. Because dementia is predominantly a condition of old age, where there is provision (any provision) it tends to focus on older people.

 

[rjm]

Hi,

I need to have contact with others who partner someone with young onset alzheimers disease, my husband is 60 I am 54 and still working.

Thank you,
Mousie

Hi Mousie,

There are quite a few of us here. I am 60 and Sharon is 57, she was diagnosed almost 9 years ago. I kept working for a few years before I took early retirement to care for her full time.

 

[sah]

Hi mousie:

My husband was diagnosed just over four years ago when 59. I'm seven years younger and am still working; will have to continue to do so as -like earlier posters-have mortgage and bills to pay. Also. we have to look to the future and our own security.

So far managing without any other care/support - but i will be picking other's brains when we get further along this road.

People on here have loads of sound advice; I'm sure you will find lots of help and support.
x

 

[jackwilson]

my husband is 63 [last month] he is in a care home and has behavioural variant frontotemporal dementia, and like kallih im am struggling coming to terms with it all, i am in full time work starting at 5.45am only having sundays off and my husband is an hours drive away which i am only able to do on a sunday, but how i look forward to those sundays that i can spend time with him, and leaving him is just heartbreaking.

 

[LynneMcV]

Hi Mousie,

My husband is 58 and was diagnosed with mixed dementia last year. I'm 52 and working, though I have dropped down to four days per week because I want to enjoy extra time and days out with my husband before he gets worse.

Fortunately my husband does not need someone with him all the time, he is still independent and for the most part can be left to his own devices. That having been said, he does need gentle guidance and support from time to time.

I am sure you will find a lot of help, support and understanding on this forum. I know I do

 

[mousie]

Hi Jo,

Thank you for your lovely warm message, I am sorry to hear about your situation. I work as a District Nurse and visit quite a few residential and nursing homes in my locality. Sometimes it is hard to face those residents with problems similar to mine or how things might be in the future. I wish you luck with finding work but feel sad that you have had to use your savings for his care, there should be provision for everyone.

With kind regards,
Mousie.

Mousie, hello and a very warm welcome to Talking Point

I am 54 too and hubby is 62, he has Lewy Bodies Dementia which is now fairly advanced and he is in a Nursing Home.

I gave up full time work when he became ill and then worked part time for two years until that got a bit much, we had four years at home together before he went into care last March, goodness how time flies!

I visit him every day but will have to go back to work later this year as the savings are running out and I have no income, it's a big step giving up your work and I know others on here who have continued to work with support from family and outside carers, it's a very tough decision at our age, well at any time really.

Welcome and I hope you find lots of help, support and friendship here. I look forward to seeing you around.
With best wishes from Jo

 

[SnowLeopard17]

Hi Mousie

My husband was diagnosed at the age of 56 two years ago, with hindsight we can now go back 3/4 years before that.

I have continued to work part time (25 hours a week) throughout his illness until i was made redundant last month. I do want to continue working for both financial and self preservation reasons but my husband has recently started to wander if i am away from the house too long. Consequently i am having to rethink our situation and am currently working on establishing a care package to ensure that my husband always has someone with him but that allows me to continue supporting us.

As stated by others you will find help and support as well as comfort from the forum. I sincerely wish you and your husband all the very best on your journey together.

with love, SnowLeopard x

 

[Pteris]

Hi Mousie
My hubbie developed early onset last year (aged 61) and so far isn't too bad yet. Just started on rivastigmine patches. How are things going for you?
Love Pteris

 

[mousie]

Hi Julie,

Thanks for your message and kind words. My husband was only diagnosed 5 months ago but has had memory problems for 8 and a half years before seeing Prof Fox at Queens Square, London. Life has changed dramatically in the last 3 years, he is no longer able to work or drive, and each day brings about new mental anguish and pain which is torturous for us both. He is such a lovely kind person that has lost social skills as well as multi-skills and can no longer problem solve. We have a loving and supportive family but apart from us he doesn't see anyone at all and doesn't find conversation easy to initiate anymore. You mention that the Alzheimers Association help provide some care for your husband and I just wondered how you were able to set that up?

With kind regards, Mousie.

Hello Mousie, My partner is now 63 and was diagnosed officially 2 1/2 years ago although the symptoms were fairly obvious for some time before that. I am 52 and continue to work full time as I have a mortgage to pay as well as the other bills. I am lucky that my partners family are able to provide care through the week, along with some help from the Alzheimers Association. I have to say that I feel the progress of the disease has been fairly rapid and it is likely that within the next few months my partner will no longer recognise me.
I wish you all the best as you come to terms with this terrible disease and I am sure that any questions posed by yourself will be answered honestly and with knowledge. We are mostly all in the same boat here in one way or another.

Julie

 

[mousie]

Hi Pteris,

Thanks for asking me how things are, I think the disease is progressing more quickly than I expected it to. Aricept hasn't made any difference. Does your husband sleep a lot? Kind regards, Mousie.

Hi Mousie
My hubbie developed early onset last year (aged 61) and so far isn't too bad yet. Just started on rivastigmine patches. How are things going for you?
Love Pteris

 

[XY123]

Hi mousie. Mums AD seems to be in rapid mode too - medication hasnt made a blind bit of difference. Very sad isn't it?

 

[stanleypj]

This is a familiar story with the handful of medications that are used to try and lessen the symptoms. Some people see an improvement that can last for years whilst others see no benefit at all.

It's very sad. And with more and more people being encouraged to get themselves diagnosed (with whatever, by whoever) there will be a lot of disappointment. Yet the general view seems to be that they get you diagnosed and then 'get you onto the medication'. There are plenty of examples on here of people (particularly those with vascular dementia) being told that there's no medication that will help.

 

[julientuareg]

Hi Julie,

You mention that the Alzheimers Association help provide some care for your husband and I just wondered how you were able to set that up?

With kind regards, Mousie.

Hi Mousie, I am in Western Australia and the Alzheimers Association is funded to provide respite as well as counselling etc etc. I don't know what resources you would have access to in Essex but I'm sure others could let you know.

 

[Vivienne3]

Hi
My husband was 50 when diagnosed and I have continued to work for the last 4 years. We were supported wonderfully by our social worker and she arranged for a 'personal assistant' who would come to our house initially 10 hours per week whilst I was at work and eventually I had 40 hours and could pay for additional hours if I had to go on work related evenings. This was good for my husband as it gave him someone else to talk to and it ensure dwe were ok financially as I was earring plus it gave me a break whiched helped me in the evenings. Sadly he is now in care but it gave us longer together at home and a good support network. They even had a cuppa tea ready when I got home from work. Look into options before making any drastic decisions that suit both of you as you need to look after yourself too.