Younger people with dementia

[CaroleB]

Hi
My life has been turned upside down with my husband who is only 56 being diagnosed with dementia, what sort you may ask? The answer as yet we do not know but they are thinking a rare kind. After looking at some of your posts at least I now know I'm not along. I feel so tired, what with working full time and coming home to having to think about our future. My lovely husband is changing In front on me and I don't know what to do? Except love him and try and make things normal.
People don't seem to realise the anxiety and pressure we have on a daily basis trying to keep things as normal as possible and still think I'm super woman when all I really want to do is curl up and cry. Sorry to sound so negative this is all new to me and I feel bogged under.

 

[JigJog]

Hi Carole,

I know just how you feel. You are certainly not alone. I am travelling along this same path at the moment. My husband is 62 but very fit and active; a runner and a mountaineer. He has been recently diagnosed.

I feel like our life together has been blown apart. All our plans just disappeared. He too is changing before my eyes.

I've had so many sleepless nights, thinking, planning, just trying to get my head around it all. Such despair. So tired. Such responsibility. So much to think about alone. It's very tough.

But yes, we need to keep things as normal as possible and love them.

Slowly, slowly I am beginning to move forward just a little.

I'm aware of the mountain ahead of us and that this will need to be climbed, like it or not. At the moment the incline is gradual for us. I'm trying to keep one eye on the mountain ahead but not to focus so hard on the mountain that I lose sight of the flowers along the way, if you know what I mean.

There are still lots of flowers along our path at the moment. They may be simple but they are very sweet. Autumn walks, lunch in our favourite cafe; how my priorities have changed.

I'm desperately trying to see the positives that are there. I hate the diagnosis that he has been given but it has brought us closer together. His personality has changed, but for the better in some small ways. We laugh a lot, play the fool a lot, sing and dance around the kitchen like children. I'm grateful for every day that we can.

I'm sure I’ll have days when I don’t feel so positive as today and times when I am tearing my hair out but one day at a time, one foot in front of the other, let's appreciate those flowers along the way.
'

 

[CaroleB]

Thank you for replying it means alot, yes as you say were working on the happy things, have already done the 'Power of Attorney' (not a happy thing) as we were told to by Dr so at least i don't have to think about that now. We like you have been laughing, crying, singing and dancing with sillyness. All things to be appreciated whilst we have them. We are both generally happy go lucky people, we have good days and bad days like everyone. But we are trying to make each day count now, the mountain does seem huge and I do feel lost in the wilderness at the bottom but I'm sure I'll get there when the need arises. Take care of yourself

Kind regards
Carol

Hi Carole,

I know just how you feel. You are certainly not alone. I am travelling along this same path at the moment. My husband is 62 but very fit and active; a runner and a mountaineer. He has been recently diagnosed.

I feel like our life together has been blown apart. All our plans just disappeared. He too is changing before my eyes.

I've had so many sleepless nights, thinking, planning, just trying to get my head around it all. Such despair. So tired. Such responsibility. So much to think about alone. It's very tough.

But yes, we need to keep things as normal as possible and love them.

Slowly, slowly I am beginning to move forward just a little.

I'm aware of the mountain ahead of us and that this will need to be climbed, like it or not. At the moment the incline is gradual for us. I'm trying to keep one eye on the mountain ahead but not to focus so hard on the mountain that I lose sight of the flowers along the way, if you know what I mean.

There are still lots of flowers along our path at the moment. They may be simple but they are very sweet. Autumn walks, lunch in our favourite cafe; how my priorities have changed.

I'm desperately trying to see the positives that are there. I hate the diagnosis that he has been given but it has brought us closer together. His personality has changed, but for the better in some small ways. We laugh a lot, play the fool a lot, sing and dance around the kitchen like children. I'm grateful for every day that we can.

I'm sure I’ll have days when I don’t feel so positive as today and times when I am tearing my hair out but one day at a time, one foot in front of the other, let's appreciate those flowers along the way.
'

 

[JigJog]

You take care too Carole.

We're lucky we have this forum. All these amazing people who are happy to share their help and advice. There's a lot of hand holding going on here and I know I'm going to be grateful for that in the future.

Keep posting Carole. Let us know how you're both getting on.

Best Wishes,

JJ x

 

[Brucie]

Hi CaroleB and JigJog,

It is a challenging path you will travel, for all concerned, but I found it a revelation to discover Talking Point aka TP, many years ago now.

I'm sure you will find the same thing, and I think the breadth of experience here more than balances whatever else you may find from anywhere else.

Don't be afraid to ask questions. You will receive differing replies and that is the strength of TP. You can identify which makes the most sense in your situation - nobody is saying that this or that is the 'right' or the only approach.

The best saying I have come across here is that "When you have seen one person with dementia - you have seen one person with dementia". I know that is used for other conditions as well, but that simply underlines the importance of treating each person uniquely, but TP will give you a range of options, none of which you have to take unless it seems appropriate to your situation.

Always bear in mind that nobody here is a medical expert; we're all just giving our opinions and experiences.

Some might say that's the best type of help you can get.

Best wishes for the future.

 

[mumbasi]

Hi Carole and Jigjog
Thanks for your posts I have found them so helpful.
My sister is 57 and has recently been tested by the neuropsycotherapsit. Her results were in the bottom 0.1percent.They cannot say at the moment what the cause is, the MRI was inconclusive, and they want to do further testing. However my sister is finding the whole thing so stressful, she knows what is happening, and says she has had enough and just wants to enjoy her life. I have to say I think I would be the same. The thing is I am now dealing with her finances but she refuses to even discuss POA. However your post has made me think that this would probably be better accepted if it came from a professional. We are awaiting an appointment from the memory clinic coordinator and I think I will write to him and ask that if he thinks it necessary will he consider raising the need for POA, then it is not me that is going on about it.
This forum is a lifeline. I don't post often but read everyday and learn so much.
Thank you to everyone that spares the time to post. I will try to post when I feel able. I find it so very difficult.

 

[mumbasi]

And I forgot to say that just like you Carole I am going to just find all the lovely happy things we can do together.

 

[alanrob]

My wife was in her late 50's when she was diagnosed with Semantic Dementia. She was a head of department in a large secondary school. She took early retirement once we had the diagnosis just before her 58th birthday. I got lasting power for finances and for health. I had to stop Pat driving about 6 months after her retirement. She is almost 61 now and in the 3 years that she finished work life has deteriorated so quickly. Please make the most of the time available to you and live life to the full. Whilst you are still able to do things, do all that you can.

Take care

 

[JigJog]

Thanks Bruce, Mumbasi and Alan.

I certainly don't feel so alone knowing that I have people like you who offer support.

Thank you.

JJx

 

[TripleC]

Early Onset

My wife and I are both 66, my wife Linda has had Alzheimers and Vascular Dementia for about 6 yrs now (possibly longer). Initially life was very difficult untill Linda's medication was sorted out. Support from our local Alzheimers Society and Social Services has been excellent. We are now at a stage where, although Linda is stable, she is unable to communicate in any meaningful way, is sometimes doubly discontinent and is restless. If any of you have read John Suchet's book that mirrors our experience. My problem is that I am beginning to feel isolated and any local support is geared towards people at least a generation older than us. I am wondering if there are people out there in a similar situation who would be interested in getting together to share experiences and provide mutual support either on this forum or, better still, face to face over a cup of coffee? We live in the Yorkshire Dales near Skipton.

 

[Reds]

My husband was diagnosed with Alzheimer's at age 58 and he is now 61. Emotionally I have had a very difficult journey but in some ways it gets a little easier as time goes by. However, I am dreading any deterioration and know that will happen and plus due to ageing too. My husband seems happy. I wish I could say to people who are in a similar situation to 'make the best of things' but I don't think life is that straightforward. Think individual circumstances make a difference. The best thing to do is to take one day at a time but I am afraid I am not made that way. Our journey could have been made easier by fewer appointments and I wish I had always had hindsight.

Best wishes to all, particularly those that are just at the beginning of a new journey with someone who has been diagnosed with a mental illness.

Reds

 

[sundowner]

You Are Not Alone. Hello, I felt just like you back in 2012.

It is such a change to what you considered your "normal" lifestyle. I thought I could cope and do everything myself and work. Of course you then start to run out of steam and start looking for help. Have you any support options locally? Have you spoken to your local Council to ask about support in your area.
Would your employer be flexible with your working hours?
Sometimes you need to talk to someone do you have a local Carer's Group?
Don't be too hard on yourself.

Hi

My life has been turned upside down with my husband who is only 56 being diagnosed with dementia, what sort you may ask? The answer as yet we do not know but they are thinking a rare kind. After looking at some of your posts at least I now know I'm not along. I feel so tired, what with working full time and coming home to having to think about our future. My lovely husband is changing In front on me and I don't know what to do? Except love him and try and make things normal.
People don't seem to realise the anxiety and pressure we have on a daily basis trying to keep things as normal as possible and still think I'm super woman when all I really want to do is curl up and cry. Sorry to sound so negative this is all new to me and I feel bogged under.

 

[Lovleemummy]

Hello CarolB
I know your feelings exactly. My hubby is 61 he was diagnosed 3 1/2 years ago but we knew for 3 years before that so a similar age. I have now been off work for 1 year (I'm fortunate that I have been able to take a 2 year career break). My daughter was his carer but then had a baby so was unable to carry on but it was getting very hard for me as I had to get my hubby dressed & to my daughters before going to work then picking him up after and at that time he didn't sleep very well and was up 3/4 times a night so I ended up exhausted.
I have just started having a sitting service so I can go out for a couple of hours each week as my husband gets agitated when in town. We all need a break even for a little while. I do wish that there were some cafés which catered for younger dementia sufferers, but I know this is difficult.
You can always talk on here and vent any frustrations, also don't be afraid to cry I do. You can get all sorts of advice on here which is a great help.
Keep your chin up
Lovleemummy x

 

[jaymor]

Loveleemummy,

The Carers Association run Al's cafés for carers, is there one in your area?

My husband was diagnosed at 62 and I was very wary of attending these meetings as I felt my husband was not ready to sit with others older and probably further along the journey.

I eventually went and to be honest I found it difficult to make out who was the carer and who was the cared for. I wish we had gone from day one. We have entertainment, talks , light hearted quizzes and a lovely buffet lunch. My husband is now in care but I still attend because like on here there is plenty of support and friendship there.

The Carer's Association will also help you with anything that is worrying you and they know how to access so many organisations who help and support carers.

Jay


Sent from my iPad using Talking Point mobile app

 

[jonorton]

My wife also 60 yrs

My lovely wife diagnosed at 60,we were initially devastated but after having a good cry
and doing some soul searching we have a much better outlook and live each day as we can, not that she is in anyway laid low with this,she has just undergone an operation to have her gall bladder removed,so at least that is one less thing to worry about.
I like so many others on this site seem to be thinking the same that as an early onset
patient she will be like a fish out of water at some of the local meetings with older people in attendance not there fault i know,so will have to find out if any early onset patients live in our area so we could possibly meet up.
She is going to start a trial of another drug before long so we are both hoping it will make a differance fingers will be crossed.
Keith

 

[CaroleB]

Thank you everyone for your words & advice. I have had a carers assessment some time ago but haven't heard from them since. Got to take hubby to see neurologist Monday hopefully he'll have better answers. All the financial fear is horrible I don't know who to ask for advice, do we sell the house to ease financial burden or keep it???? All so confusing. Chat again soon
Carole

 

[TripleC]

Thank you everyone for your words & advice. I have had a carers assessment some time ago but haven't heard from them since. Got to take hubby to see neurologist Monday hopefully he'll have better answers. All the financial fear is horrible I don't know who to ask for advice, do we sell the house to ease financial burden or keep it???? All so confusing. Chat again soon
Carole

Hi Carole, don't sell the house to pay for care. If your husband needs to go into care and you are still living in your house they can't touch it. Best contact the financial gurus at the Alzheimer's Society.

Best wishes,

Clive

 

[CaroleB]

Ok Clive thank you for that, he's not any where near that yet but I'm trying to forward think, mortgage is large amount each month. And, the school he works in are suggesting ill health retirement mayb next year arhhh

 

[SnowLeopard17]

Hi Carole, just wanted to let you know that I totally understand how you are feeling as my husband was diagnosed at a similar age with Alzheimers. My heart goes out to you, your husband and your family.
SnowLeopard, with love x

 

[sah]

Hi Carole:

My husband was also working as a teacher when diagnosed-he was 59.Once the diagnosis was 'official', Teacher's Pensions allowed him to retire early on ill health grounds.However-they also said they wouldn't enhance his pension as -although they accepted he could no longer teach-they felt he could earn his living in another occupation! I ask you...decided not worth fighting as he was only one year away from full pension-but still totally ridiculous. Just watch them carefully!

Five years on,I'm also in the middle of claiming PIP on his behalf; he should qualify - and that will help.

I would also support what others have said; do not sell the house to finance care. If you decide to downsize to make life easier, that's different-but I would get some financial advice.

Sending hugs-Sah.xxx