1. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    *takes a deep breath*

    After attending the 1st night of a Caring and Coping with Dementia course yesterday I was left feeling alone and needing to talk to others caring for a younger person.

    My husband is 54, and we have 2 boys of 9 & 7. He was diagnosed with Alzheimers last August and I don't think we have really come to terms with it. Looking back there have been signs over the last 4 years or so. These had a detremental affect on our relationship before we got the diagnosis.

    He is still in the early stages and is on medication. Some days are easier than other both for him and for me. I try to keep everything as normal as possible for the boys and we are very open with all our family and friends which has mede things easier for John.

    There seems to very little support for younger suffers.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,556
    Kent
    Hello Jackie and welcome to TP.

    We are hearing of more and more younger people being diagnosed with Alzheimers, on the Forum, and I`m sure you will get feedback from them.

    It isn`t only you and your husband, this condition will affect, it is your children too.

    You seem to be coping well, so far, and I hope that continues. It does help if you have family and friends who are supportive, and can talk freely about it.

    I hope you get the support you need from TP. It has been a life saver for most of us.

    Take care
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Warm welcome Jackie. Do hope you get some support soon.

    One things I have learned from this journey is to ask for specific things before you really need them.

    a) everything takes time to be put in place.

    b) sometimes earlier in the illness there is less resistance to trying something new.

    Do let us know how things go from time to time, or ask any questions you may have, lots of useful knowledge across the board.
     
  4. Megan

    Megan Registered User

    Sep 10, 2005
    16
    Hampshire
    You have my sympathies

    Hello Jackie1, just read your post, you will find that actually there are quite a few of us with young husbands/wives and children in the same position as yourself. My husband was diagnosed at 54, four years ago, we had two adult children and a daughter of six at the time. Colin was manageable for the first eighteen months, but like yourself before diagnoses I didn't know what was wrong or going on and we also had problems in our relationship because of this. I decided that as long as he was OK we'd try and do as much as possible so we went on three holidays, two abroad and I'm glad I made the effort to do so. Now Colin has just entered an assessment unit at our local mental hospital and we are in the process of waiting to look at care homes and having our finances assessed, although with me only working part-time and still with a mortgage I don't yet know how much I'll be expected to contribue. All these things are worrying and it's all the unfairness of it. Our daughter is now just 10 and a half and she hasn't really known her Dad to be 'normal'. She copes very well, we also kept everything in the open and I take her to the Unit and she sees all the other people with dementia who are a lot further on than her Dad and she doesn't seem bothered by it, so I think you're doing the right thing there. Good luck, hope to hear more from you, I'm here to help or chat to in any way that might be of use.
     
  5. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hi Megan,
    Can I ask is Colin on medication. John is on Reminyl. I think it must be helping as he doesn't seem to have deteriorated too much, that said most days there is often something that he hasn't done before.

    He is still aware of what is happening to him, and with that come frustratrion and anger. A bit of a change as I was alway the volitile one! What frustrates me is not having any idea of how thing will progress. So I have had to go from being a planner to living each day at a time.

    As the boys are so young and as this has been coming on for so long they are adapting amazingly well. There are still hairy moment as John can't abide noise and often just walks away after asking them a question.

    Sadly we have no family near, but I have a great support network of friends. I did think if moving back near my parents but felt that the move could confuse John and the boys and I would lose our friends.

    Look forward to chatting more
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    early onset

    Hi Jackie - and Megan,

    Yes, I'm another one, my husband is 56 now and was diagnosed in 2005 and I see now it had been coming on for quite a while. Probably when he was about 51 or 52, you think back and realize something they did was probably this thing starting slowly but surely. Steve and I never really got on that well, he was a man's man, liked to be out with mates and doing his own thing, we had some very bad times actually but now, what a waste of time and upset that was.

    He gradually got worse until one night in August last year he had a very 'bad turn' and my friend and neighbour who is a psychiatric nurse rang a locum who gave him a sedative and that was it really, he just got worse from then on. He went into hospital to an assessment ward for a minimum of 4 weeks in September last year and stayed there for 6 months and then in March this year he went into a care home. He needs more care than I can give him. It was actually taken out of my hands, the psychiatrist and whoever else make these decisions told me he would not be coming home. He is in a fabulous home 2 miles from our house and I don't pay a penny myself as we don't have any savings, he gets Incapacity Benefit which he's been getting for 5 years as he had to stop work because he has rheumatoid arthritis. apparently he gets this for a year after leaving our home so by September this year, that wil either be reduced or stop, as yet I'm not sure. I don't have a lot of faith in the DSS, they tend to give you money you shouldn't have, even when you ring three times and tell them your situation and tell them you are sure you're not entitled to this money!!

    It's extremely sad that your boys are so young. Our kids are all in their 30's. The grandchildren don't understand of course as their ages range from 9 to 2 but I don't take them to see Steve, he doesn't know who they are now. He doesn't know anyone except me. We moved away from our family unfortunately before he was diagnosed so I am on my own. I don't even have many friends where we are now. Like you, I almost moved us back to where we used to live to be near the kids but it all fell through at the last minute and I was very glad it did in the end as Steve would certainly have been very confused and he was in the system here and everyone here has been wonderful. The Alzheimer's Society, the staff at the hospital and the care home staff too.

    Steve was put on the lowest dose of Exelon and then I was told it wasn't working so he was put on a higher dose but that didn't work either so he's not on any meds for the dementia now at all. He has to be sedated and have anti-depressants. He's on quite a lot of those.

    I'm suffering with laryngitis at the moment and feel 'dead rough' so how I'd manage with no help from friends or family if Steve were still at home, I don't know.

    No-one can tell you how things will progress unfortunately, every single person is different. Do you keep a diary of how he is? I did and a lot of people on TP do and it's a very helpful thing to have. I hated to discuss what things Steve had said or done in front of him with the psychiatrist as he was very embarrassed when he was still aware so I used to copy from the diary and send it to the psychiatrist a week or so before his appointment and then he could read it without me having to talk about Steve in front of him.

    Hope we have helped here.

    Take care

    Sue
     
  7. Westie

    Westie Registered User

    Hello Jackie,

    Yes, I'm another one too! My husband is 52 and was diagnosed last sept. We have 2 children aged 14 and 10 so I have an inkling of what you are going through. Looking back, he displayed symptoms for at least 2 years before that which had an irreversible detrimental affect on our relationship.

    Peter is on Aricept but I didn't notice any change in him to be honest. He has fronto temporal dementia which doesn't normally respond to drugs but he will carry on taking in case it is helping.

    I would think very carefully before moving areas, even if it would be closer to family. I have had huge support from some close friends and it has been extremely important to me to keep that support local. I have tried to keep routines as near normal as possible for the children as well. I regret to say that some friends have never got over the diagnosis and simply stopped getting in touch.

    Is your carer's course run by the Alz Society? I went on one which ended last month and found it very helpful. I was the youngest by a mile but we all became quite close. I have also recently joined the younger carers support group run by AS and this helps as well.

    Your boys will amaze you with their ability to accept the situation. They will probably cope much better than you! My daughter (10 last week) never moans or complains that her Dad is different. She just gets on with it and looks after him with far more patience than I have. My son is a differnet matter, but he has to cope with normal teenage hormones as well. They both visited their Dad frequently when in hospital being assessed and I have always answered their questions about his illness honestly.

    Their isn't much support or facilities for younger people but I have found that Peter is made a priority because of the children at home, me trying to still work etc. He goes to a day centre once a week which is my weekly lifeline. I hope you have some good services in your area.

    Keep in touch.
     
  8. annesharlie

    annesharlie Registered User

    Jackie

    Another to add to the list - my husband is 52 and was diagnosed a couple of months ago, though problems started about two years ago. Also, like you and Mary Ann ( westie), it really affected our marriage - we were just living parallel lives, very little if any connection between us. Ron is almost non - verbal now, at least he very rarely initiates conversation and I find that very difficult. He's just boring to be around! I do know that it's the disease doing this, not him, but it's hard. I have to be sure to connect with friends in order to have conversations. We have three children, the youngest is 17 and still at home. I'm not sure if the implications of the dementia have really sunk in for him, though I have been very open about discussing it.

    I don't really have anything particular to say to you, only that you are not the only one battling through this, and though we are all so many miles apart we do support each other it really helps to not feel too alone. Do be sure to take WHATEVER help is offered, I decided that right from the start, and also be sure to have time for yourself and your boys.
    Let us know how things go.
    anne
     
  9. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Girls

    My partner was early fifties, slightly different circumstances but the same devastation..............the thing i found hardest to deal with was losing our future.............. its so very sad that this disease can strike so young..........but you will get through this............. its tough................. but one day at a time eh?

    Sending hugs to you all.
    Love Alex x
     
  10. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Hi Jackie.

    Jean was 55 when diagnosed. She originally went on Reminyl for about 18 months but had some very bad reactions to it during all that time.

    She is still living at home with me at this time but I can now see the necessity of a Day Care Centre. As you point out, there is not much in the way centres and the like for younger people.

    I too am working only part time now and just managing to cope although it has been hard to come to terms with what the disease brings on a daily basis.

    In the end, you can only do your best.
     
  11. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Thank you, I no longer feel alone!
    I have some wonderful friends and all bar 1 couple have been amazingly supportive (the couple excuse was that THEY were too devastated when they got the news to contact us - I was not impressed)

    John was never one for having mates, and just became friends with my friends husband, they continue to take him out for a drink/meal every few months.
    Although the hurt still remains from those years before the diagnosis I feel lucky that I do still love John but also sad that the love has become one of caring rather that what you should have for a husband.

    I have been hunting round here for drop in/day centres and support groups for younger sufferes and there just arn't any. It's on my list of questions I will be asking.

    Yes the course is the AZ soc. run one, so hopefully I will find out what else is available for John and I.

    Thank you again and so glad I found this website and "met" you all.
     
  12. mike.sheehan@uk

    mike.sheehan@uk Registered User

    Mar 6, 2007
    3
    Rickmansworth, Herts
    My mother has dementia and I have been reading the posts for some time now but have only just started to post messages. I am horrified by the number of people who have relatives with early onset dementia. Is it more common that it has been in the past and what could possibly be the cause? I know it is said that there are more cases of Alzheimers because people are living longer but this is obviously not the case where people in their early 50's are showing symptoms. I am 53 myself and am beginning to worry as I don't always remember things and my husband is starting to make rude comments about my memory.

    Jane
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jane
    The problem with seeing a relative with dementia is that we suddenly start to worry about every lapse of memory we have ourselves.

    There can be many reasons why a person may forget something, most of which are far more likely to be the case than dementia, for someone below 65 years of age.

    The more you worry about your 'lapses', the more preoccupied you may feel, and the more likely to have more lapses. There's a lot of talk about multi tasking these days. That is a faculty that does not improve with age and we may still try and do as much as we did in our 30s, when much older.

    Can you perhaps quietly explain to your husband that his thoughtless comments are making things difficult for you? When someone puts us under pressure of this sort, it simply adds to our stress. It can also cause depression, a classic cause of forgetfulness.

    Take care
     

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