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. silvergoblin

    silvergoblin Registered User

    Mar 31, 2008
    13
    Naples, Florida....USA
    #81 silvergoblin, Apr 1, 2008
    Last edited: Apr 1, 2008

    Hi Cymbaline....I just had to respond to your post b/c it totally hit home....I am 34, single and live in a "retirement town"....After graduating with my second degree I didn't know what the hell to do to find a job so I moved from Missouri to Florida....got a job and I am about 50 miles from the parents house....I have been here for 6 years....I am an only child and when Dad was showing signs and diagnosed with Alzheimer's I didn't know what to do....I kept thinking about what to do for 2 years....I have no life here (retirement town....not too many people under the age of 50) and I want to go to Graduate School (England is my first choice....I want to study British History)....well here it is going on 6 years in Florida....I made the choice to put my life on hold....as I stated earlier I am an only child....I don't come from a big extended family and most of my relatives passed away when I was a child....my parents have been very good to me over the years and I just can't in good conscience leave my Mom alone to deal with this....so I have been going home every weekend to help Mom and to see Dad. Well....on November 10th 2007 I went to NYC for a Duran Duran show (I have been a loyal fan for 26 years)....I called Mom to let her know I got to the hotel and she told me that my Dad had been admitted to the hospital....that was November 10th 2007....he hasn't been home since. Last July he had a stroke and was hospitalized....it turns out that he got some sort of infection during that time period which caused his going to the ER on Nov. 10th. He has been in two nursing homes/rehab centers and two hospitals since that day....it has been HELL....in addition to being devastated we have had a rather quick and shocking introduction to health-"care" and how Alzheimer's patients are treated. Now my Dad is dying....I am 34 years old and I have never been to a funeral....most of my relatives passed away when I was a child so all I have experienced is the loss of pets. I have so much bottled up inside me trying to deal with/understand/accept the fact that Dad has Alzheimer's....to see him deteriorate so fast during the last two years....hell....even the last six months has just about killed me....my heart is just broken....I am very close to my Father....I was born on Father's Day..................

    ....Sorry that I rambled on....

    ....Take Care and HUGS to all

    P.S....I realize that this site is based in the UK....however as I live in the U.S.A. I hope it is ok that I joined and posted....
     
  2. tina123

    tina123 Registered User

    Apr 1, 2008
    13
    coventry
    i'v been reading the threads and amazed to see so many people with a young parent with dementa, my my was 54 when diagnosed i cried for weeks she started with frontal lobe which completly changed her personality, it seemed that over night she'd gone from a wonderful mum and grandma and with, to an uncaring selfish women who developed a thirst for spending, she left the family home, spent all her hard earned savings,and to make matters even worse purchased several cars on credit( and believe me credit was something she never believed in) this went on for about a year.
    Her brothers and sister and fallen out with her, my dad had started divorce proceedings, and although i knew something wasnt right couldnt get help from anywhere.
    I begged her to see doc but of coarse she said nothing was wrong, she started to sweat ect...
    then she got a really bad chest infection and called on me to take her to gp....who i called in advance explained what had been going on.
    With my poor mum there i reelled things no one should say about their mother but it had to be said, finally i was heard tests and scans were carried out and it was comfirmed frontal lobe dementia had firmly set in and it was clear i was never going to have my mum back.

    I now care for my mum and love her dearly but greive every day for the mum i once had, im riddled with guilt because of this.
    Does anyone els feel that way i hate myself for it.
     
  3. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Dear Tina
    Please dont hate yourself, you are doing the best you can for your mum under very difficult circumstances. I too had to sort Dad out 5 years ago when he received his diagnosis of vascular dementia, nobody else in the famliy would have anything to do with him. I felt so alone. I was 36 at the time and trying to bring up a very young family. I've been sorting Dad ever since. You will grieve for the mum you knew. Why do you feel guilty? It seems to me like you were just being practical and realisitc under the circumstances. In dealing with the medics and having to say things, you have helped your mum. I found these discussions also helped me to come to terms with the disease.
    take care
    hendy
     
  4. faye n jayne

    faye n jayne Registered User

    Apr 13, 2008
    3
    derbyshire
    sounds familiar

    hello, ive only just registerd so im a little in the dark with this kind of thing, anyway im in a very similar situation as you i am in my 30's too, only it's my partners mother who has AD she is only 64. i have to addmit that me and my partner are finding it extremely difficult to cope with my mother inlaw's demands as we both work full time, and we are the only carers, we arnt getting any help from anywere else and to be honest we dont know were to look.
     
  5. elizabeth c

    elizabeth c Registered User

    Apr 16, 2008
    6
    Confusing

    Hi - I was amazed to find this forum. I often feel my sister and I are totally unique in this situation and it is so hard to talk about it with other people which means I rarely do. My Mum is just 60 and was diagnosed about 6 months ago although things really had not been right for a couple of years. Our relationship has always been complicated as my parents were divorced and we have had a difficult relationship with my stepfather. My mum is now like a stranger to me, she is very confused and I feel that nothing of her old personality remains and I find it very hard to accept. I live a long way from her , have two small toddlers and am pregnant. My husband works really long hours and I have no support here so getting involved in help is really tough and I probably don't see her as much as I should and every time I do the deterioration upsets me so much that I am a mess for days after and find it hard to cope with my children etc. Just wondered if anyone else has this guilt and finds it hard to juggle everything? Stupid question I'm sure:)
     
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Elizabeth C

    Oh yes, we all know the guilt monster. Spit in his eye! You are doing your best and he's no help at all.

    Best wishes
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,103
    Kent
    Not stupid at all Elizabeth, and much more common than perhaps you realize.

    I find the big problem arises when there has been a complex parent/child relationship. When the parent becomes ill, even though infrequent contact has been accepted as the norm, it is suddenly a cause of guilt.

    Please just try to accept what you can give, give it willingly and get rid of the guilt. The deterioration is very upsetting, especially if it is rapid, or seems rapid becuase you are not together often. But you will not be able to make your mother better. Her illness is not your fault.

    Don`t beat yourself up, do what you can, and accept what you can do.

    Take care xx
     
  8. elizabeth c

    elizabeth c Registered User

    Apr 16, 2008
    6
    Thank you Grannie G and Lynne for your messages. They really have helped me to hear that from people who really can understand. I suppose sometimes I feel I must prioritise between my children and my mum and feel guilty that I will always choose my children because I know what I do for them now can make a difference but I know I cannot change my Mum's situation. A friend of my Mum's has recently contacted to say she thinks I should be doing more which I have found very hurtful and has just filled me with guilt even more. I feel that she cannot possibly understand. I find thinking about what the future holds so frightening and selfishly as my grandmother also had Alzheimers I feel terrified that I will also end up with it and don't want my children to have to go through what I am now. Sorry for all this ranting - just so glad to find this forum!
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,103
    Kent
    Dear Elizabeth, perhaps you could ask your mother`s `well meaning` friend if she would be prepared to help you. :mad:

    I had comments like this when my grandmother was in a home. I was too timid then to say how I feel. But I`ve learnt from experience.

    How dare people tell you what to do when they are not prepared to do anything themselves.

    And you are not ranting. You are under tremendous stress and need to off load. This is the place to do it.

    Please try to live your life to the full, as much as you are able under the circumstances. Try not to think whether you will or will not be affected by Alzheimers. Every minute you think about it is a minute wasted.

    Love xx
     
  10. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Elizabeth

    I am with Sylvia on this one.

    People do not think. My twin sons were only 10 months old when my Mother started the confusional stage of dementia prior to that she had been very aggressive, depressive and confrontational.

    The best advice I ever got was that I had to put my children first as they are the future. When I found that balance I was able (mostly!) to ditch the guilt and to lead a life that encompassed everyone.

    I had to arrange childcare mostly to visit mum, but that became my respite (what is that phrase again? ahh yes, - a change is as good as a rest!)

    My Mum wasn't particularly young when diagnosed, but she had been an older parent as was I, so I can sympathise with the practical things we have to deal with.

    Your Mum's friend has obviously forgotten what it is like with young children, pregnancy and the accompanying exhaustion. Maybe she could babysit for you while you have a quiet cuppa with your own Mum, make some phone calls etc.

    As to the future, my Mum had VAD, my Nan died following strokes and VAD too. Me, well, lets just say what happens will happen, but I try and minimise the risk and intend to put a living will into operation fairly shortly to save my family making hard decisions about future care. My husband and I have already discussed care and both of us have agreed that we will go into a care home (providing the other visits us regularly and it is nice and does good food!!) to ensure that we both get the best out of our lives.

    ((((hugs)))

    Love

    Mameeskye
     
  11. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Elizabeth and welcome to Talking Point.

    I have found TP to be a God send as it is the one place I can talk about mum's dementia and all the related problems and emotions and people here actually understand what I mean and how I feel. No matter how well intentioned people who don;t live with dementia cannot understand what comes with it - hence a lot of problems with social services, doctors and well-meaning but insensitive friends?

    My mum was diagnosed last year but had been suffering with Frontotemporal Dementia for about four years prior to that - mum is just 60, I am 30.

    I fully emphasise with your situation - I have a two year old with various health problems, am five months pregnant, look after my three year old niece two days a week and try to work at least four days a week. It's tiring and it's hard and I too used to feel immense guilt that I couldn't give as much as I wanted to or as much as other people felt I ought to.

    Over time I have learned to shut out the guilt monster - for a couple of years I tried to be everything to everyone with the result that I was stressed and unhappy, so was my family and I wasn't actually helping anyone.

    Whether your mum's friend likes it or not your priority is to your children and so it should be. I try to look at it like this - if this happens to me will I want my children to look after me - and the answer is no, no and hell no!!

    As Mammeskye above has done, my hubby and I have had a long chat about this and I've said that I want to go in a home. He can visit me once a month but he's to get on with his life and hopefully find himself a nice woman who'll bake him cakes and love my children. Will he do it? Who knows but if it happens I'll be shoving myself in a home before I get too bad so he can't stop me!!

    As to the hereditry aspect - well as far as I understand very few cases of dementia are hereditry. Is it AZ your mum has or a different kind of dementia?

    I too feel very detatched from my mum now and we've always had a great relationship during my adult life - but as with your mum there is no trace of "my mum" in there at all - in a sense I have grieved for the mum I have lost and now accept this new person as someone different in my life - it's a hard process but I guess this is why they call it the long bereavement. My dad hates that this is my view point but it's harder for him because he is her husband and is with her 24 hours a day.

    I hope you will continue to use TP and find a wealth of support, advice and comfort here.

    Take care of yourself - you have a responsbility to the new life you are carrying - some advice I should learn to take myself I think!!
     
  12. lindsey.deane

    lindsey.deane Registered User

    Aug 10, 2007
    9
    South Wales
    Hi all

    I've not been on this for a while. I'm 27 and my dad is just 54. he has frontal lobe dementia (otherwise known as Pick's Disease I think).

    I completely understand the number of feelings and emotions people go through. To have someone so young essentially taken away from you is so hard to bear and to see how drastic those changes are.

    All in all, I think it's been happening over about 5-6 years. My mum had to give up work to look after dad and she continues to do so.

    She's got all the support from family and friends and people shown concern and ask how everyone is but no-one ever truly knows how you're feeling. It's so very cruel and you never adjust to how life will be from now on.

    There's still signs of the old dad there - some quirky habits he still has. Christmas was hard as he was in hospital for assessment to try and sort out his sleeping habits. Christmas without him was awful, on the other hand we weren't all on tenterhooks wondering what he was getting up to. As soon as you realise you're enjoying yourself you feel guilty.

    We can talk about things as a family but we don't show our true feelings which can only go against us. Having a forum like this is a good get away to allow you to let all your feelings out.
     
  13. MandyW

    MandyW Registered User

    Oct 11, 2005
    24
    Newbury
    Hi Everyone

    Been a while too since posting although I often read all of your posts.
    I'm 30 my mum is now 58 and has had dementia for 10 years, so she was only 48 when all this heartbreak started and I was just 20.
    I'm struggling, I know that my dad is struggling because mum is still at home and in the later stages of this hell.
    This week we found out that mum has has some kinda stroke but we've made the hard discision of not attending the stroke clinic as there's not alot they can do. Mum's on aspirin every day now aswell a her other drugs.
    I miss my mum so much, I long for her to be like she used to be, I miss her smell I know that sounds funny but mum just being near me used to make me glow inside.
    I've found that writing down my feelings has helped a bit with my grief, that way I can vent my feelings without upsetting anyone. Give it a go...it cant harm.
    Mandy x
     
  14. lindsey.deane

    lindsey.deane Registered User

    Aug 10, 2007
    9
    South Wales
    Hi MandyW

    I don't currently live with my mum, however, my older sister does. She has worked in an Old People's home for years and years and is used to the care aspect of things but it in this case it's different because it's our dad.

    Some days I think for hours of what we used to do when we were younger when my dad was how he used to be. It's heartbreaking that I will never have that person back again. My mum and dad have been married for over 30 years and the strength she shows is fantastic. She sometimes shows denial when we try to be realistic as to what is going to happen. There will come a point when she will no longer be able to care for him. I hate to think about it but I know I have to.

    With this type of illness, you grieve twice. I cannot imagine life without my dad. Even though there is no communication whatsoever from him, I know deep down somewhere he remembers who we are and I will always, always love him dearly.
     
  15. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Lindsey and Mandy,

    I think it is so great that you can still see your mum and dad as "mum" and "dad".

    Unfortunately, I can't find any recognition of the mum I knew in the woman she is now - it's one of the big symptoms of FTD as I understand it.

    But if I'm going to be very honest, sometimes I prefer to see the person now as someone different from my mum - she's so aggressive and hostile and as she becomes increasingly violent I find it hard to like her, even though I know it is the disease that has changed her.

    I like to remember my mum as the person she was - a woman who once took off out of my car and ran down the road because she wanted to prove she could run faster than I could drive. I'm sure I don't have to tell you she was wrong but she couldn't run and I couldn't drive properly for laughing so much. She blamed her failure to run faster than my car on the fact that her shoes were too big!!

    That's the person I want to remember as my mum.

    Maybe that's harsh but it's just how I feel. Don't get me wrong I still see her almost every day and do as much as I can to help her and dad but I just can't connect with her as I used to.
     
  16. lindsey.deane

    lindsey.deane Registered User

    Aug 10, 2007
    9
    South Wales
    My dad always had such a baby face and this disease has aged him so much.

    He's fit as a fiddle and is constantly on his feet. He had a hip replacement operation two years ago this August and he's as nimble now as he's ever been.

    There was a phase he went through where he was aggressive, not in a way where he hit my mum or us, just very, very agitated. This was mostly frustration I think as he was going through these changes he wasn't aware of and was scared I suppose.

    There are times when I don't see him for days at a time and I live in the same road. He goes in for respite every 6 weeks and stays there for a week. He also goes to day care three times a week and stays over on a Thursday until a Friday. This gives my mum a break and she can have some sort of 'normality'. Changes in my emotions happen all the time - I'm lucky to have such supportive family and friends and my partner is always on hand when I'm feeling down. He lifts my spirits as much as he can.
     
  17. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    It's great your mums getting so much help - unfortunately we're not getting on so well in that department - she's too agressive for respite and the carers we have had for two hours a week (for three weeks) are starting to make noises about being unhappy with her behaviour.

    I know what you mean about the up and down emotions though. I can go a month or so feeling, not okay, but a general acceptance of everything and then something seemingly insignificant happens and I'm in pieces for a couple of days.

    I think good family and friends can make all the difference.
     
  18. lindsey.deane

    lindsey.deane Registered User

    Aug 10, 2007
    9
    South Wales
    It took some time to get where we are with help.

    I am sorry you are having so much difficulty. Your life is certainly very full. Talking on something like this allows some sort of release of frustration. It may not resolve the situation but certainly does help.

    I like the quote you have at the end aswell :)
     
  19. Dgirl

    Dgirl Registered User

    Sep 6, 2007
    16
    Dublin, Ireland
    I too am in my late 30s and my Mum was diagnosed with AD about 5 years ago now and is currently 63. My Dad is her primary carer and it is really taking its toll on him now. Mum still has lucid enough moments around lunch time where a conversation may just be possible at times. However towards late afternoon or during the evening she will suddenly look at either me or Dad with very wide eyes and we know whats coming next. "When can I go home - why did you bring me here. If I'd know we were coming here I wouldn't have come. Take me home. Give me the car keys and I'll drive myself. Give me the bus fare and I'll go if you won't take me etc" She then bursts into tears and wants to know whats wrong with her, why is she like this. Storms off to the bedroom crying and giving out - much like a child in a tantrum would. The more we try to calm her, the worse she gets. However if left alone too long on her own in this state its virtually impossible to "get her back" as we call it. When she does calm down she invariably comes up to Dad, gives him a kiss on the cheek and says she is sorry. She knows its going to happen every day, she apologises afterwards or the next day. This is the bit we can't get our heads around. We have finally been given some tablets to help calm her if she gets into this state however when she is there she doesn't know or trust us so won't take the tablet. Its a vicious circle.
    Anyway, didn't mean to rant on but the fingers just kept typing. What I really wanted to post was, we got her on a drug trial a few months ago. It turns out they are very close to a vacenation which will stop AD in its tracks. It won't reverse the effects but will stop it. So for those of us out there who do worry about if we will get it, in 10 years time the cure will be here. What they discovered with Mum on the trial was she went back about 3 stages in her memory tests when she saw her specialist so it definitely did something, although wasn't that noticeable on a day to day basis. Hope this will allay some fears.
     
  20. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Dgirl,

    I'm sorry to hear about your mum. Watching the tll it's taking on my dad as he cares for my mum I can understand your concerns for him too.

    Just a thought but if your mum generally has these incidents at the same time everyday could you try a pre-emptive strike and give her the medication half an hour or an hour before to see if that stops it?
     

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