1. HLon

    HLon Registered User

    May 30, 2006
    I'd love to hear from anyone with reassurance about getting through the tough times. My mum has had early onset dementia for the last 6 years and recently I've been having panic attacks and problems with anxiety surrounding this (I'm receiving help through a therapist and medication) - wondering how we'll cope, manage to get through all that we still have to go through... It'd be wonderful to hear some comfort and advice regarding this.

    I'm 26 and would also love to have contact with other people at a similar stage of life for mutual support, who are also going through this.

    Looking forward to hearing from you.

  2. Margarita

    Margarita Registered User

    Feb 17, 2006

    Just like to say Hi welcome I am an old of age in my 40s sorry, but just wanted to day hi.

    There a saying On TP take one day at the time , I think it means live in the present moment of the now, there is light at the end of the tunnel & you sure will be ok , I know other will give you better advice

    ((Hugs))) I have a son age 26 in July :)
  3. HLon

    HLon Registered User

    May 30, 2006
    hi Marguerita,

    In many ways the experience and emotions of losing someone in this way are universal regardless of age and so your wisdom and words are always welcome - thank you. Wishing you all the best,

  4. sandy25

    sandy25 Registered User

    Nov 30, 2005
    Hello H.
    I'm 25 and my dad has had vascular dementia for 5 years. It is very difficult to deal with being so young, I feel robbed of my dad and constantly wonder why should i have to deal with this before I've even got married, had kids etc.
    But the only thing that keeps me going is that at least I've got him (albeit not the same dad) whereas a lot of people my age aren't as fortunate.

    I think its hard at this age as you don't expect to be 'parenting' your own parent!
    This is a great place to talk about your feelings away from the usual family angst and think its also theraputic to read that you're not the only one going through this.
    Keep posting - it will help promise!
  5. mel

    mel Registered User

    Apr 30, 2006
    Hi H
    Like Margarita I'm in my 40s ...well ok 49 ....nearer 50 perish the thought ....but I'm young at heart and if I can be of any help let me know
    You'll find lots of suuport here with a few laughs along the way!!
  6. Dave W

    Dave W Registered User

    Jul 3, 2005
    Hi H

    I'm a little older (ok,46 next week!), but I think a lot of feelings and situations are more uiversal than when we realise when we're struggling to see the wood for the trees.

    If I give you any comfort or advice, a year ago I was in shock at what was happening, chain smoking, not sleeping, totally stressed out and unable to concentrate on anything at all. Today, I'm stressed but it's getting easier as time goes by. You haven't said much about your situation (is your Mum at home? Are you getting help from SS, a CPN and so on?), but what I think I've realised over the last year is:

    a) once you get over the first few hurdles, you get a sense of achievement, no matter how hard won, that makes it easier to keep going
    b) there are only so many tasks that you can achieve, either in one day or a lifetime. As you jump each hurdle, you start to realise there will be fewer left to jump, even if you're tired, scared or afraid right now
    c) leaning on others when you really need to isn't a crime or a sin: it's what friends - good ones - are for (I've realised how much I love mine). And, given your situation, you will find people surprisingly willing to help on many an occasion
    d) ultimately, you have to stop beating yourself up as it stops you from achieving what you can. You aren't immortal or a super(wo)man, so do what you can and don't blame yourself for what you can't do - you really can't do everything, even if you want to. It's ok to fail sometimes, especially against dementia
    e) a good rant or weep on TP is very therapeutic. There are people on here I've never met that I would hug on first meeting in sheer thanks where I ever to meet them outside the confines of this little white screen.

    Tell us more about your situation, and see what we can suggest that will lighten your load and help you to feel stronger.

  7. mandyp

    mandyp Registered User

    Oct 20, 2004

    I'm 36 and Mum has been diagnosed for 2 years now......could be that I'm deluding myself that I'm young enough to give you any help:)

    I can only echo what others have said, it's very difficult to see your Mum decline.

    I don't live at home but am not far away and see Mum every weekend. If you're at home with her it must be tough. Feel free to PM me any time.

  8. zed

    zed Registered User

    Jul 25, 2005
    #8 zed, Jun 1, 2006
    Last edited: Jun 1, 2006
    Hi Hlon

    I am in a similar situation to you. I'm 28 and my mum is 59.

    I have always had a difficult relationship with my mum so I don't feel like I am losing her as other people do as there was nothing to lose, but I am sad that she'll never be able to know her grandkinds. I am engaged but it will be a few years before we get married and start a family, and I expect by then my mum won't be able to appreciate that. My mum loves babies and I was looking forward to having kids so she could enjoy having grandkids.

    As for my wedding, when we do get round to it in a couple of years I wonder if mum will even be well enough to be there.

    Do you have brothers and sisters Hlon?

    Are you in touch with your local Alzheimer's Society? Does your mum get support from Social Services? Who does she live with?

    Living with dementia has many ups and downs, there will be diffucult times, but there will be times when things are calmer too. Everyone involved needs time to adjust.
  9. Margarita

    Margarita Registered User

    Feb 17, 2006

    Thank-you for your kind words

    I've in the past have been having panic attacks and problems with anxiety surrounding this & my whole life

    Just wanted to say that I must of brought all the books on self help ,then went to recognised psychotherapy ,which was a great help ,they go throw you whole life till now , it teaches you to recognize why your having the attracts ,what in your life is triggering it , so you change the thought about it ,so change the feeling , as it’s a thought in you that brings up a feeling in your mind .

    Now our mum have AD, we have a fear of the unknown in what is going to happen in the future, that fear is not real as the future has not happen yet as its all in our imagination, so you tell yourself, you are the curator of your own mind you can control you thoughts & how you want to feel about them I say to myself stay positive every thing going to work out fine, I feel really good that tomorrow every thing is going to be fine , if its not I have the talent to challenge it .

    Seeing that tomorrow is in our imagination, you can have a positive vision in how we want our future to be, as we can not control what is happening to our mums, but we can control what is going on in our reality , its hard and I know this

    your grieve for what you can’t have with your mum in the future & that is normal & as long as you recognize this your future will be bright , go with the flow of it it’s the natural rhyme of life on the down days & on the goods days .

    I could go on & on :eek: :eek: , but shall stop

    you don’t have to reply to anything I say if you just want to read I understand , when your ready hope you can share , am always on & around in TP .

    The future bright with TP :)

    and I must add that its been an eye opener for me that young adults have parents with AD ,so thank-you for shareing
  10. HLon

    HLon Registered User

    May 30, 2006
    thank you, more and redreaming

    hello everyone,

    I'd love to reply to everyone individually, but a group reply seemed better - I am so grateful for all your responses, and I'm feeling like my feet are firmer on the ground for it. I've never found the idea of going to a support group appealing (tho' I think it definitely has its merits) but this is perfect! I think sometimes part of feeling so anxious about our situation is feeling isolated with the experience of continually losing someone, like watching a gradual unbecoming, and the cycles of grief that go with that. My friends are wonderful at listening to tears and doubts, however, being in contact with others experiencing the same, and so generously sharing it, feels a huge comfort.

    I work in London, but am visiting home in Bristol this weekend. I have 2 younger siblings, my bro also working in London and my sis in her first year at uni. Being the oldest and who I am I sometimes feel a lot of responsibility and weight. I'm grateful to be able to dip in and out- it's my dad who has to do the weekly caring and who coordinates day centres, carers etc. Back in March my bro and I looked after mum for a weekend, which felt draining after a week atwork, tho' I know it's what many people have to do. I prefer to come home when my dad's here and help by cooking, leaving cakes/meals, taking mum out, giving her a shower etc. We are lucky to have good contact with a Clinical Psychologist, social worker and relevant organisations. I suppose sometimes I end up worrying about him too, tho' he seems to be doing well and being sensible about asking for help and taking time off - a steep learning curve, but essential.

    It can be hard to have not been home for a month, and then to come and see how mum's changed. This weekend has been positive however in the sense of being able to share some of my feelings with my dad about how tough this is. Sometimes I get such a basic child-like craving for my mummy, usually when I'm feeling low, and that's when the pain of her not being there as she might have been is worst. Recently she came off aricept as her latest examination showed she'd declined too much to be on it on the NHS - for me somehow that felt like a huge shock or like a rubberstamp on the reality of the further continual decline we've got to face and that scares me sometimes.

    Margarita, your words reminded me of something I often think of - sometimes it helps to think of it as mourning the loss of dreams... what might have been... relationships that might have been mended, grandchildren that might have been seen, conversations, holidays... But, you then get to redream, create a different narrative to be part of and make part of you, your wisdom, beauty, experiences. I do a lot of writing which I find helpful - someday I hope to write a sort of problem solving book detailing difficult situations one's likely to encounter when living with someone with dementia, and how to work your way through them and out the other side.

    Sometimes I just want to get on with life, sometimes one has to find the humour, beauty, sometimes cry, be angry... or just stop, which is what I've just done and taken time off work to go and stay with my aunt and some friends.

    A long posting - take care of yourselves and listen to your intuitions and needs when you can. Looking forward to being in touch more.

  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    You sound like a wonderful daughter & its lovely to hear that

    And that your dad getting help in looking after your mum :)

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