Anyone in their 30's dealing with a parent who has been diagnosed AD?

Discussion in 'Younger people with dementia and their carers' started by cgf, Sep 29, 2007.

  1. cgf

    cgf Registered User

    Sep 12, 2007
    I posted a thread a few weeks ago now relating to the fact that my Mum (who is just 60) had been recently diagnosed with AD after a 2yr wait for the news. I received some lovely relplies but at the time things were still a little raw to respond.

    Three weeks have passed now and my mind has been filled with all sorts of things, some good, some bad and some just plain terrifying.

    All that occupies my mind at the moment is that I'm not ready to lose my Mum. We have always had an extremely close relationship, Mum having been on her own and raising me and my Sister, who is two yrs younger than me, since we were very young. We were and still are a very close unit.

    My Mum was a great support to me when I was going through my divorce and we became even closer. For the past 2 years now I have had to make huge changes to my life, in respect of having to become the one who is depended on by their parent and to such a huge extent. I have felt scared that she no longer existed in the capacity of which she did for so many years, my Mum and all that, that role meant to her and me.

    I want my Mum back and find it very hard to comprehend that 'us' will never be the same again. I cry for my Son who has had such a beautiful relationship with his Grandmother and who is also experiencing the 'changes' in Grandma and for my niece who will never know her, truly know her, as the woman she once was.

    I just wanted to hear from anyone who has a parent of a relatively young age or of a young age themselves (i still class being in my 30's as young!) with AD and how they cope and deal with such emotions.
  2. cariad

    cariad Registered User

    Sep 29, 2007
    in my thirties too!

    Hi, I have been reading these boards for a while but this is my first post. I totally understand how you feel. My emotions are all over the place at the moment. My mum (64 but not a line on her face), has been ill for a year and a week last thursday was diagnosed with alzheimers. My dad died suddenly on 10th aug this year which meant mam came to live with me. I have 2 young children ( 7 and 9) and a job. Life has changed beyond belief! It's truly heartbreaking to see the changes in my mother. Day by day she slips a little further away. As of yet I have no support but social services have done an assessment so it's in the pipe line. I realise that the only way to cope with mam is to change the way I relate to her. And what keeps me going is knowing that even though she is ill, she is happy enough because she believes she is fine.
    It's great to speak to someone in a similar situation!
  3. cgf

    cgf Registered User

    Sep 12, 2007
    Your story sounds so similar to mine and not that I would wish this on anybody, but it's so good to be able to discuss and hear similar stories with other people.

    It must be such a hard time for you having to deal with your Mum's diagnosis and your Dad's passing, these last few months can't have been easy. I think having your Mum come to live with you is so brave and a lovely thing to do, although I expect what with two young children, it can be quite exhausting.

    We are yet to have a Social Services assessment, the GP is supposed to be organising it. At the moment the family are checking in on Mum and sorting things out for her. We hope also to have some medication prescribed for her, as she is on nothing at the moment, but it all seems such a waiting game.

    I can empathise with you when you say that you feel your Mum is slipping away each day. I saw my Mum today and she was different from the last time I saw her, that little bit more withdrawn, tired looking and not having too much to say.

    I suppose it's about taking each day as it comes but I just feel so angry and gutted that this is how thing's are and will continue to be.

    Thank you for replying. Take care.
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear cgf and cariad, welcome to TP.

    There are many on TP who are sons, daughters and partners of young people with Dementia and I hope you will get to know them by posting regularly.

    There are many young families affected by dementia, primary schoolchildren and teenagers, all finding it very difficult to accept he changes in their parents.

    For those of us with older parents and partners, it`s also difficult, as the challenges of the condition are the same whatever age you are. It`s just even more upsetting when you thought your parent or partner had many healthy and happy years ahead of them.

    I hope you both find the support you need on TP.

    Take care xx
  5. cariad

    cariad Registered User

    Sep 29, 2007
    Thanks for the warm welcome Sylvia! I'm sure I will get lots of support from talking to others who know what it's like. Cgf, don't get disheartened, try to remember that it's o.k to feel anger and resentment as well as sadness. Seeing my mam like this is worse in a way than losing my Dad so suddenly. But I'm trying to look on the bright side. It's brought out a tender side in both my children who are so much better at adapting to their 'mumma' as she is now than any adults are. My Mam only got a care assessment because I caused a big fuss and phoned social services for the best part of a day. Everyone seemed to be passing the buck (G.P. said it was for Social services to do and vice versa). There's a saying that goes something like 'The squeaky hinge gets the most oil'. I didn't mind being squeaky!! I try not to think ahead or dwell on the way my mam used to be. It doesn't help. You are right when you say take one day at a time. I live by that! Anyway, it's a reassurance to know that there are people here to support me. Thank you and take care x
  6. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    I was only in my thirties when my Mum was diagnosed with vascular dementia, although By the time of diagnosis I had known for over a year that there was something wrong and even before that that my Mum had changed. I had put the very early changes down first of all to grief at my father's death after a long illness and then to my fertility treatment and pregnancy and thought that my Mum was scared of my getting pregnant and then jealous of my children (which she was but it was only later I was able to work out why!).

    She was resentful from the outset when I became pregnant, could not understand why I needed help from others and not her, was argumentative and dictatorial. When I needed her, for the first time in my life, she wasn't there.

    The diagnosis was a blessing and a curse. Our relationship had deteriorated through her treatment of me and her lack of empathy and understanding through the previous years. With the diagnosis I was able to forgive her totally for the h*ll she had put me and my family through..(for example, ringing me up when I had just gotten home from hospital and yelling at me because I hadn't asked her to be there and she had it in her head that my inlaws were, yet it was just husband, myself and two boys. I had probably had a total of 10 hours sleep in the previous 3 weeks so you can tell how I was feeling!!!) That was the blessing that I was able to assign our relationship problems and her character changes to the illness as what had happened had made me question my relationship with my MOther as we had, until then, always been the best of friends and enjoyed each others company.

    The curse was that by the time the diagnosis came I had to fight with the grief that I had already lost "My Mum", that my sons would never know her, that she would never have the relationship with them that she had had with my neice..and quite frankly that I (selfish I know!) didn't have her help and understanding as I was trying to get to grips with mothering twins and then the terrible twos. I was quite frankly exhausted and had no help other than my husband who has been great through out it all.

    I remember being in tears, screaming in pain in the early hours as she was not there. But I had to keep going for my children.

    Like you are probably finding it is more often that the people you mix with may know of the disease through a grandparent but those who know what it is like to lose a parent are few and far between and particularly those who are at the stage of needing that helping mother when their children are so small and who really miss having their Mum there.

    As I got used to it, after a particularly painful argumentative weekend with family I realised that "My Mum" was not coming back. Once I had accepted that it didn't instantly become less painful but it did become easier to deal with.

    Positives for me have been that because my Mum is in a home my inlaws have looked after my children so I could visit her and my husband is great on the "shared parenting" front to allow me time to visit. These became my rest breaks, when the staff would sit me down and give me a cuppa in my Mum's home as they knew. My sons when they used to visit regularly used to give the residents at that time a lot of entertainment. Unfortunately as is often the way of it in EMI units most of those residents that played with them are now very severely demented and none are at the stage my Mum was at 3 years ago. Now they rarely visit as 6 year olds are just two bouncy although pop in occasionally to pick me up with their Dad at the end of a visit.

    I could not feel guilty about her requiring to go into a NH as I knew that I could not look after her safely with twin toddlers (She had already tried to feed them dog food and lost her pills on various visits!). If my children ahd been older or left home I know this decision would have been a lot more fraught.

    I also have had to continue on for my children and not allow myself to stop and wallow in grief. They are my future and my hope and , they are really Mum's future too.


    It isn't easy.



    PS Sorry I have waffled on so!
  7. cgf

    cgf Registered User

    Sep 12, 2007
    Thank you so much for your reply Mameeskye and you certainly didn't waffle on!!

    The more I read other's posting's it brings such comfort as for so long I haven't had anyone to talk this all through with, who really appreciated and could understand what it was like. I have felt it alittle unfair to discuss the enormity of the situation with my sister who I can appreciate is also trying to come to terms with it all but I hope with time once we have both had a chance to deal with what the future holds that we will be able to talk about it in more detail. For the moment we skirt around it by discussing medication, needs assessments etc. and only rarely touch upon the emotional side of things.

    One thing about having a parent who is a young sufferer is that many of my friends around me are unable to empathise/understand. Their parents are all of a similar age to Mum but are all enjoying active, healthy retirements or are certainly starting to think about it and some are still working and enjoying first grandchildren, so it all seems abit alien to them. Some have had experience of their grandparents suffering with dementia but were shielded from it as they were young children at the time.

    Thank you once again for your reply it has really helped.
  8. cgf

    cgf Registered User

    Sep 12, 2007
    Thanks Cariad for the advice on pushing forward the needs assessment with Social Services. I had read only yesterday on the web site that I can phone and request an assessment myself so I will be doing that on Monday and especially with your motto in mind - 'The squeaky hinge gets the most oil'!!!
  9. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Hi cjf,i know exactly where you are coming from.My dad(after 3 years) finally was diagnosed with Alzheimers disease.I sat through the MMSE with him(heartbreaking,asi sit therough this test all the time thorugh ny job)It was heartbreaking to see a tear in his eye when he could not answer questions,My hope that the medication he has been px'd will help.Theres one thing i do know,whatever we encounter in life,we have a choice,deal with it or choose not to.Deal with it with as many questions you can think of,Don't deal with it and the questions are left to all who are finding the diagnosis hard to deal elainex
  10. Netty

    Netty Registered User

    Feb 24, 2007
    South Wales
    Sorry only time for a quick post. I too am in my 30's and have 2 year old twin daughters. My mother is now living in a cottage we converted for her on our farm.

    This post caught my eye as I have also been wondering how many young(ish!) carers are out there.

    Hope to get to know you all a little better soon.

    Have to go, my two monkeys are still awake and rioting in the bedroom!

    Annette x
  11. Michelle-A

    Michelle-A Registered User

    Feb 5, 2005

    I'm 27 now and my sister is 30... I was 20 when my mum was diagnosed at the age of 49 and like you my mum was a single parent bringing up me and my sister so know what you are going through...we were all very close too! unfortunately my mum is in the later stages now of this cruel disease and I could not have been prepared for how hard it's been... I only discovered this site after we had gone through everything there is to go through so the early stuff that most people are going through seem like forever ago to me now... hope you find this site a comfort that you are not alone....
    Take care. x
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you Michelle for offering support to new members.

    You came to TP before my time and I was shocked to read how young your mother was when she was diagnosed.

    Take care and please come to TP if ever you feel the need. There is always someone here for you.

    Love xx
  13. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    It is good to know that there are others going through all this with fairly young children as I always seemed to met those with grandparents affected. My Mum was not that young..maybe just that she had me a bit later than was the norm and I had my kids a bit later too!

    It also shocked me to read of the age of Michelle's mum when diagnosed. I know that it can be young, as again I had read of a twin mum diagosed in her early forties before her kids started school. Michelle my heart goes out to you and the problems you needed to face at such a young age. Like you my Mum is now in the latter stages. Just wish I ahd found TP 5 years ago as I went through the painful problems of knowing where to look for care and reaching that inner acceptance of what the disease does do.

    Netty, I don't know how you manage. I used to have great difficulty as twins of that age are just so exhausting!!!!! But it is good that your Mum is close by as it is so much less of a worry as you can check on her easily.

    (((hugs))) to all

  14. KezzieB

    KezzieB Registered User

    Oct 5, 2007
    Suffolk, UK
    Hi, I am new to these forums, but I am Kerry, aged 30, and my mum is 53 and has been diagnosed for nearly 2 years now.
    My sister and I had to go and look at a residential home today as mum is in hospital and has been for 4 months and we have been told this is the next step.
    Found it all very heartbreaking and here I am 11.30pm unable to sleep as I have so much on my mind........
  15. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Well sadly I'm no longer in my 30s ;) but I do have young children (9 & 7) and the three of us do our best to care for my husband and their daddy (54) who has alzheimers.

    I find it shocking just how many young sufferers there are and yet how poor the services are for young sufferers.

  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Kezzie, Welcome to TP.

    I can only imagine how heartbreaking it is for you and your sister to be looking for care homes for such a young mother. It is hard enough when sufferers are older.

    I hope you continue to login to TP. There are, sadly, many more families of younger people with dementia here to offer support.

    It might help you feel less alone.

    Love xx
  17. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    Hi All

    it just brakes my heart when i hear of a loved one so young with alzheimers, my mum was diagnozed at the age of 54 had it way befor anyone iam sure only then we did not know what was wrong with her. I look back and i wish now i had more understanding of this illness my mum passed away last march i can not tell you the emotions that you have to go through.62 is no age realy leaving 7 children,12 grandchildren and a greatgranchild its just heartbraking. I can only say try to take each day as it comekathy
  18. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    I am in my 30's and I live with my widowed mother who is 76 and has been diagnosed now for 2 years. She is gradually getting worse but is still no where near the stage of some of the loved ones on this forum. I don't have any support from my sibling so it is just mum and me.
  19. JMW

    JMW Registered User

    Jun 14, 2007
    Yes in my 30's also


    Read your thread and can completely relate to what you've said. Mum is now 65 but was diagnosed when she was 59 has been in a home for 2 years now. I lost my Dad 9 years ago when i was 28 and thought that was a bit young. Since then mum deteriorated and finally we were told she had Alzheimer's. As you say the role is completely reversed and it is such a strange feeling dealing with your parent as if they are the child. So hard and from my experience never gets any easier. Think you just learn to deal with it better. Mum is well settled in the home, still hate going to see her there but there is no other choice. I thought losing my Dad was hard but possibly this is harder (although i miss him every day) as slowly mum is fading and you have to watch it happening. This is a really good forum, don't use it half as much as i should. It is worrying how so many people are affected by this disease as well.

    Thoughts are with you

  20. katherine

    katherine Registered User

    Sep 5, 2006
    Me too

    Another one i'm afraid - my mum is 60 now. She was diagnosed 4 years ago this month - i can't believe it's been that long. I have two children - a 2 year old and my little girl is nearly one. My mum and dad are divorced and although i know my dad would love to help with this - there's not much he can do, so myself and my brother have done it all. It's been bloody hard work and so sad, but now we have full time care for mum at home, paid for with direct payments and the Independent Living Fund. Look at those for help. It's awful to have to deal with this when your parent is on their own - but on the positive side there is a lot of help out there because she's on her own - it's just a matter of tapping into it. We had some great Occupational Therapists and a community psychiatric nurse who pointed us in the right direction - also your local alzheimers Society branch. You have to really hassle the Social Services - but they have a duty of care to you and your mum in the end so have to help.
    It is all heartbreaking and sad, but there are lots of happy times within it all. Well kind of...
    I find I have alot of selfish thoughts too and feel guilty for wanting my life back sometimes, but this is my life and really it's OK - i think over time you come to terms with this - and you'll not lose your mum - your relationship will just change dramatically - my mum is still very loving and sweet (most of the time) and if i'm ever upset she still comforts me and kisses me - so she's still there for me too...

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