Early Onset spouses and partners

[Brucie]

Early Onset Dementia poses particular issues for the families of those with the condition. Unlike classic dementias where both patient and a husband or wife may be [sometimes way] beyond retirement age, the partner of someone with Early Onset Dementia may still need to be in work each day, or they may have young family to bring up.
For those who are younger, the pain of watching someone who should be in their prime enter a tunnel of unknown duration - and unknown deterioration - can be catastrophic. All plans for a future beyond work are trashed, and you still have to try to keep going, in the later stages with someone who cannot recognise you.
I found little understanding either in the medical community or among my friends and family of the situation of Early Onset families - indeed, of the fact of Early Onset Dementia at all, at first, ['Why visit every day? Pull yourself together and make a new life' is hardly helpful], and I know of others in the same boat.
What experiences have other people had?

 

[Peter]

Hi, Bruce,

I know how you feel - my wife Judith(59) is now in nursing care and I am younger than she is. I retired a year ago to look after her but in the end I could no longer manage. She refuses to eat or drink.

I feel very depressed, guilty and that I have failed my wife. People say "get on with your life." So I got a part time job working from home. But when you are on your own it is hard not to think about the other person who was in your life. This is the worst part of the whole sorry business- a sort of limbo- stuck waiting for the inevitable.

Sometimes I break down and cry, anything can set it off but usually someonelse's sadness. So, I "pull myself together", "get real" and carry on, though what for I am no longer sure.

I know there are many worse off than myself and that Judith is as safe and cared for as possible. And yet it all seems so very difficult.

Sorry, this is not very helpful to you, Bruce, but you can see you are not alone.

Peter

 

[susie]

Hello Bruce
How I sympathise with you. My husband is not yet 60 but has had early onset for 5-6 years. I still need to work being younger and I have tried to overcome the bitterness of retirement plans pushed aside and its all compounded by seing the person you love changing into a stranger at times.The friendship, comfort and support you are used to in a partnership isn't there any more so you feel you just have to get on with it. There are good and bad times and many tears often at my own frustration! It feels like a terrible burden to bear but as the CPN says -a day at a time. I don't feel people really understand how isolated you can feel in a partnership when one of you is closing down. I have to allow myself some self pity but then it has to be business as usual and the forced smile comes back as yet another example of my partners memory loss manifests itself! I feel he has spent his life giving me a good life and I have to hang in there as long as I can. No - one will say it is easy, especially as my husband can seem reasonably normal to outsiders at times. Your emotions go up and down all the time but you have to try and take some comfort from the looking after a loved one, even if you hate them when they are being wkward!
Hang in there - it doesn't get easier but the acceptance may kick in eventually-at least I am hoping so!
I have learned to build up a social life on my own which isn't easy with arranging for care and it does hurt to do this on your own.
There are many of us out here with the same problems and this site is a good place for help. Hang on in there.
Susie

 

[Ruthie]

Hello Bruce

I couldn't agree more about the extra issues facing people with early onset dementia and their carers.

I don't think that these difficulties are really appreciated by professionals or others. The shock of a spouse getting this disease in their fifties is almost impossible to deal with - all one's hopes and plans for the future are dashed, just when children are becoming independent and other couples of the same age have more time to enjoy each others company and have more money for holidays and other activiities together - all our friends seem to be having more and more exciting holidays and I have had one week on Exmoor with my husband in the last four years, and no prospect of any more - and I now can't see the point of going on holiday without him.

My husband showed the first signs of AD some 8 or more years ago at the age of 52, and had to give up his professional practice 6 years ago with consequent total loss of income. I carried on working for another two years full time as I was paying the bills, but had to give up 4 years ago to care for him. What people don't seem to appreciate is that not only do you lose your income at the time, but you also lose years of pension contributions at a time when you were planning to top it up to ensure a reasonable standard of living in retirement. Also, unlike couples where one of them gets dementia in their 70s or 80s, the remaining partner has to plan financially for a possible 20 or 30 years more, and any small savings won't stretch that far, and their pension provision is significantly smaller than it would have been if they had been able to work to "normal" retirement age.

If we had been over pensionable age a) we would have had a full working life to build up our pensions and b) we would already have been getting a pension so I wouldn't be in the position I'm in now with no income and having to make inroads into my small savings to survive - double whammy!

I have worked out that my husband's illness has cost us at least £300,000 in lost earnings between us if I had worked until age 60 and he had worked to age 65 as planned - and that's not counting the 2 or 3 years before he had to give up work when his earning capacity was greatly reduced.

My husband was admitted to hospital to an "elderly dementia assessment unit" just before Christmas and is now on a ward surrounded by largely immobile and uncommunicative people who are mostly 20 or 30 years older than he is - he is still physically fit (apart from the side effects of the sedatives he is given to control his behaviour) and also has fairly frequent lucid interludes when he is only too aware of the depressing nature of the ward and the poor condition of the other "clients". The consultant freely admits that this ward isn't appropriate for my husband, but it's all there is in this area, and moving him to a care home will be difficult as there aren't any suitable ones in this area. I have to drive 20 miles each way to visit him, which I do every other day as I can't really afford the petrol to do it every day. He still recognises me and is glad to see me, but often breaks down as he is so unhappy there, which sets me off.

When I gave up work I decided that we had to sell our family home and get a smaller one as we still had a mortgage, and although we could have got housing benefit etc, our car was nearly dead, and as we live in a fairly rural area with poor public transport, we needed a reliable car to get to the doctor's or anywhere else for that matter, so sold the house, paid off the mortgage and got a reliable car (but what happens when this car dies or gets too expensive to maintain I don't know).

Of course, the day my husband was admitted for permanent care his Disability Living Allowance and my Carer's Allowance ceased, so a week later (the Monday after Christmas) I was at the Job Centre trying to sign on for a job, but was told to get my GP to sign me off so that I could claim Incapacity Benefit (just over £50 a week, but it would have paid the gas and electricity bills and fuel for the car) - I am 59 and don't collect my state pension for some months. Five weeks later I still haven't had a letter about this, but when I chased my claim last week I was told on the phone that I wouldn't get any money as I hadn't made contributions in the appropriate years (because I was caring for my husband! - I thought that as a carer one got contributions credits).

When my husband started to show symptoms one son was doing "A" levels and about to go to university, while the younger son was doing GCSE's - he has since gone to university. We were not able to give them any financial support, quite apart from the distress caused to them by their dad's condition. My younger son deals with it all pretty well, but my older son finds it difficult to visit as he finds his dad's condition so distressing.

As soon as my husband went into hospital, family and friends (although not my sons) immediately started saying that I could get some rest now and "get my life back"! I am trying to stay strong, as I know I still have battles to fight on behalf of my husband to make sure he gets the best care possible, and I still think about him constantly and weep about him often. How can we get our lives back when our lives were so bound up with those we loved. I have good and supportive friends, but when your husband or wife was your best friend and the person who you could talk to about anything and shared everything with, you can't suddenly turn your life into something different and become an independent person again.

As Peter says, we are in a sort of limbo, endlessly grieving.

I'm sorry, this is all about me, but your posting struck a chord with me, and I've said all this not only to get it off my chest, (having a bad day!), but to let you know that you are not alone and many of us out here are experiencing the same things and understand what you are going through. I'm not saying it's any easier for the partners of older people with dementia, as they perhaps have their own health problems and are perhaps less physically strong which would make caring very hard for them, but our age group has some very specific problems when this disease strikes.

Will be thinking about you.

Kind regards

Ruthie

 

[Brucie]

Hi Susie and Peter and Ruthie
I appreciated your replies and one wonders how many others there are, like us, out there.
Susie, I have found a form of acceptance now, but it did come out of the blue. That's a whole different story, but I almost didn't come through at all.
I'm aware that this forum may be viewed by others who are at an earlier stage in the process. The one thing I decided as I got deeper and deeper into our situation was that, as far as I was able, I would try and help others in the same boat, if only by sharing the things that kept me going, or that seemed to help my wife. This has in turn helped me.
The Dementia Experience varies greatly because different areas of the brain are knocked out, affecting different faculties.
Here's something that worked to help keep me going!
When my wife first went into care I found that I started to believe we had never had a laugh together. The previous months had been so bad, it had started to destroy my memory of her in our good times. I started to look for all the photos we had taken over the years and I scanned them into the PC and now have hundreds of the things, all in chronological order. People thought I had gone off my head, but it gave me a diversion and space to re-live happier times and in some way draw a line under it. I guess it was a form of grieving.
Ultimately I produced nine A3 posters each containing dozens of miniatures of the photos and put them on the walls of my wife's room, along with a host of other pictures of the family. The home tells me that they show relatives of new residents the pictures, and the staff say they treat Jan differently because they can see her at all ages, in all situations. I can also see them, and can then remember, when I visit. Jan can't, unfortunately, as her sight is now so badly impaired.
Has anything in particular kept you going?

 

[janemary]

Hi Bruce and all the other contributors to early onset dementia topic. My experiences mirror yours - my husband has just gone into a continuing care assessment ward after struggling at home for the last six years or so. I thought that my responsibilities would be eased, but now I find that I am having to "supervise" his care in order to make sure he is not just left with the older, immobile patients. He, too, has occasional lucid times when he is despairing of his situation and I leave with my heart breaking for him knowing there is nothing I can do to make him better or change the conditions he is existing in. I know Philip can't communicate and hasn't had a proper conversation with me for some years, but I miss him as he used to be and find it hard to accept that this is final and I am never going to get him back. Somehow the terrible last few years and the loneliness and hard work have faded into the background and I remember the good times. Like you, Bruce, I have tried to hang on to these good times and found photographs to keep this image in the minds of our children and friends, but in doing so it makes his present situation even sadder to see. I feel I have had such a lot of support from friends and family but his life has been pushed aside as if it had no meaning. If he had died and we'd had a funeral people would have spoken of his achievements, but now people just see him as a burden.

 

[Brucie]

Hi Janemary,
I so empathise with you. I have learned so many things through my experiences - I'm sure the same is true for all of us.
Jan seems to be about two years ahead of your husband, but there is no simple path to the disease - some younger ones who started after her at the home have already gone.
Close partnership with the home is in my view essential. Yes, it is easy for younger people to be left with older ones. Not in my wife's case as she is the most difficult of 24 residents because of her physical instability. There has even been talk of 2-1 care. Her body is immensely strong though she is small, and its movements appear totally detached from her mental condition. She can seem totally relaxed mentally, while her body is pushing one over backwards in a chair.
Jan no longer has lucid times, though all things are relative. Jan's lucid is a smile when I arrive, or a sudden word or two that I can actually understand... just so long is the word doesn't expand to "it's horrible", which it occasionally does.
Partnership with a home helps the home fight battles on your behalf. You may find - as I have - that some care staff are much better in trying to make sensible conversation with a resident. That makes such a difference.
The problem is that the care staff are paid less than £5 an hour for such a challenging job. I tried to pay for additional help but am not allowed to under Continuing Care, which is supposed to cover all need. I was quoted £20 per hour for a minimum of 4 hours per day for the same staff to come in on an agency basis - which I couldn't have afforded anyway. Even gardeners get £12 an hour around my way.
At present when I visit my wife, we stay in the room she is mostly in, a small room with mattresses on the floor and padding on the walls [the only place where she can be safe]. We used to crawl around together but the past week she is losing the ability even to crawl, so we tend to cuddle on the mattress, something that seems to be regarded as a bit bizarre, by all and sundry. It works for Jan therefore it works for me, and she does respond, even if only minutely.
Oh, by the way, one may have to accept the changes, but it never ever gets any easier!
I have stopped her flu jabs this year.

 

[jackie w]

its not only partners that are affected.my mother is 61 and has had ad for approx 6 years . i feel so sad that just when they are both at retirement age my dad is struggling to cope with looking after my mum who seems to be deteriorating very quickly .i find that my family life is suffering as i am so wrapped up in my parents problems my children do understand about grandma as they are older 16&14 but both my brothers have just had new babies who will never know grandma

 

[Brucie]

Hi Jackie
I started this thread off because, while the general experience of dementia is often spoken about, the fact of Early Onset Dementia is largely unknown beyond those who have been hit by it. For the past ten years I have felt very alone in caring for my wife while all my peers have carried on their lives seemingly normally.
I have been touched by the contributions that have been posted so far.
You are correct of course, many people are affected by a relative or friend having any dementia. You have alluded to three types:
1) the spouse
2) close family who are intimately involved
3) close family who are less intimately involved
There is no good one to be! There are differences of experience between those people who suffer at a younger age and those who are older, but the differences are not better or worse, relatively, for either. It is all bad.
While I have been badly affected because my wife was a young 50 when her symptoms began to appear, I would equally have been affected had she been 75. We planned to be together for all our lives!
My experience of the disease would have been different, though, at an older age. At a younger age, I still need to work as well as to visit her daily, and that means over 150 miles each day round trip.
I came across someone whose wife came to the home on respite - she was late 70's - and she was then moved to a care home 40-50 miles away. Her husband of the same age had no hope of easily being able to visit her even once a week. Imagine what a nightmare that would be!
I have found that nieces aged 7 or 8 visit and simply accept my wife as their aunt and are not affected by the experience; that surprised me, frankly. For really young children, the loss of someone to dementia is likely to be the same as the loss of a relative to cancer, heart disease, etc. Or am I wrong? We all have only our own experiences [and assumptions based on them] to go on.
Your Mum is slightly younger than my wife and I really feel for you.

 

[Izzy]

I'm cheating a bit contributing to this thread as my husband doesn't have early onset AD but I have read all of these posts and empathise greatly with everyone. I am in between I suppose. I am 52 but my husband is 72 - he really only looks 60ish (I think - you can judge for yourself in the pics section!). He isn't nearly as far advanced as your partners and loved ones but reading the posts gives me an insight into what is to come. As there is a big age gap I know I will have to work on and won't be able to retire. This didn't matter before AD was diagnosed around 3 years ago. It does make me think now. We both hold on fast to how good things are just now and this site has made me focus on the present but is giving me lots of insight into the future and what I will have to deal with and how. Last week two very famous Scots died from AD - Ally McLeod ( football manager) and Rikki Fulton (a wonderful Scots comedian). Seeing all the tributes and the film footage on TV over the week has been fantastic and makes me realise how important it is to keep photographic/video records of the good times.

Take care
Izzy

 

[Brucie]

Hello Izzy
Cheating? Hardly, I think!
I bump into people aged 93 in my village who have more sense and intelligence than I do, and on that basis, to have dementia at 83 might seem an early onset.
We have to have some words to describe different categories of people, and with a smaller population of younger people with dementia it is good to be able to provide something to relate to. But any categorisation will always be at best a compromise.
[my wife's home has more younger people with dementias now than they ever have had in the past. More cases? Better diagnosis? Earlier diagnosis? who knows... I diagnosed Jan 5 years before the medical people did - prior to that they looked at me as if I were simple]
I am 9 years younger than Jan, so I do appreciate a gap in years.
In the home where she is there are 24 beds, most for Continuing Care residents, some for respite. There are no two residents with precisely the same combination of symptoms. The brain is so complex that your experience may well be totally different from anything you read, but I agree, it is helpful to know what may be.
Please do contribute to the thread!
Bruce

 

[Nutty Nan]

Dear Bruce,
Your devotion and determination, as well as your imagination with the posters, for example, are absolutely amazing and inspiring!
I, too, have been cheating, as my situation is very similar to Izzie's. Whilst we do not have the true 'early onset' diagnosis in common, our relationship to the patient is rather like yours, as is our family/friends situation. We are still in employment (at least as long as the situation permits), I see the pain in our daughters' eyes, and I wonder how the very young grandchildren are affected by their relationships with Gramps, which, inevitably, is different to that with other older people, since his response to them is not consistent. I am constantly amazed at Amy's acceptance (she is 4 1/2), when we expect her to accept things in Gramps that do not follow the usual 'rules' (when he is allowed to carry on pottering, instead of sitting at the table for a meal at the same time as everyone else, when he bangs cutlery on the table, which the children would never! be allowed to do, or when he gets cross about them, when they have not done anything wrong!). She just gives me a (knowing???) smile, and accepts our excuses. To her, Gramps is Gramps, exactly as he is: she does not know or expect anything else!
All this does not apply to friends, of course. Only very close friends, who see us frequently, can manage to enter Tony's world, and make a real effort to do so. This is what makes the isolation harder to bear: acquaintances who used to get together once or twice a year find that the old chats and laughs do not 'happen' now. They are unable to follow Tony's warped 'reminiscences', and spend their time trying to 'put the record straight', and many find it quite impossible to accept, of course, that he does not remember them and our shared memories at all! Sadly, I find that photographs rarely help Tony, as it often seems as though he could not 'decipher' these images, even of recent events - and he certainly can't usually link them to distant events and 'memories'.
Anyway, I have rambled on - it is good to share and compare, as Izzie says. "The devil you know...."
Best wishes, Carmen