stressed and not coping!

Discussion in 'ARCHIVE FORUM: Support discussions' started by janey21, Mar 18, 2004.

  1. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hello

    i live at home with my grandad who has middle alzhiemers and also vascular dementia me and my mam look after him. i was studying at nottingham but had to move back home because grandad was too much for mam and she has had to leave work. i now study at the local uni. i find it so hard sometimes and i really cant cope. grandad was such an independant man and he hates it when we bath him or take him to the loo as its his dignity which i can understand but he is so aggressive too and i am nearly 21 years old and i cant deal with this anymore. my friends dont understand they just want me to go out with them all the time and i cant as mam cant do it on her own. it got so bad and i was feeling so depressed the other night that i sat with a packet of codine ready to take them but i dont know what was going through my mind. my boyfriend is at uni away and i told him how down i was expecting support and he laughed and called me silly. i really cant see any light at the end of this tunnel. i love my grandad very much and it breaks my heart to see him like this as
    ns this disease is horrible. he 78 and very able and physically fit which is even more horrible.my studies are getting effected because i cant sleep with him up and down all the time and i cant do any work at home when he is there. the help we need from social services wont provide because me and mam live there. i dont think i can cope much longer its tiring me out and all i want is to get my degree so i can live my life.

    any one got any positive info for me??

    xxx
     
  2. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #2 CraigC, Mar 18, 2004
    Last edited: Mar 19, 2004
    Hi Janey,

    firstly, you are not alone. This is a great place to get help and advice and you really are talking to a lot of people who are dealing with Alzheimers day to day. It sounds like you are having a hard time and need a bit of help.

    There are a lot of options, one that particularly comes to mind is respite care. We have been considering this for my mother as it is such hard work being a carer day in and day out and she herself can get very low after a few bad nights. Lack of sleep along with a dish of stress is a bad combination.

    I'd really recommend calling the Alzheimers Helpline. They can talk to you confidentially about your situation and give you a lot of advice on who to contact in your area.

    The number to dial is 0845 300 0336

    You can also email someone directly and get them to call you. Have a look at the page:
    http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm

    I have found our GP to be really understanding and he has offered us a lot of support. Do you get on OK with you GP? It may be worth a quick visit, just to make sure he knows that you are struggling with caring for your grandad.

    You take care and just let us know if you need more help or advice.

    Craig
     
  3. Meldrew

    Meldrew Registered User

    Apr 28, 2003
    53
    London
    #3 Meldrew, Mar 18, 2004
    Last edited: Mar 18, 2004
    hello Janey
    I am sorry to read of the difficulties you and your family are experiencing - it's no wonder that you find it hard to cope, anyone would in your situation, so it's no reflection on you. I think most people who visit this forum will understand the distress experienced by witnessing the loss of dignity of a loved one especially when this is accompanied by an apparent physically fit body.

    There are some things you can try to help take control of the situation:

    Social Services - Social Services are required (by law: NHS and Community Care Act 1990) to assess the needs of your grandad and, having assessed these needs they then have to provide services to meet those needs. As Alzheimer's is a degenerative condition, his needs will change over time and so the needs assessment will need to be reviewed to meet his changing needs)They also are required to assess the needs of his carer (by law: Carers and Disabled Children Act 2000) in this case probably your mother. This could result in provision of some respite care for your mother and consequently for yourself together with other support. It might be helpful to involve your grandad's GP and your mother's and your own GP in this.

    This assessment may have already been done, in which case it may be about time to ask for a review. Social Services should have provided a written care plan ( I have attached our information sheet which explains this in detail). A word of caution - when undertaking an assessment be wary of volunteering, or being persuaded to do, any caring duties for yourself. It's not unkown for Social Servcies to happily let family members do the caring that should be provided by Social Services.

    There is another approach you might consider taking. Neither your mother nor yourself have any legal duty of care for your grandad. Social Services have the legal duty of care for him. If you and your mother felt that you cannot cope (and nobody with any inkling of understanding of your situation could justly criticise you for this) then you have every right to walk away from this situation. The result would be that Social Services would have to take care of your grandad. They cannot abandon him as they have a legal duty of care for him. It may well be that they would arrange for him to be taken into residential care. This may seem drastic but sometimes it is the best solution. It can come to a point where care in the home is not an option as an individuals needs are too great to be met at home.

    I am sorry that your friends, including your boyfriend, don't seem able to offer the support that you need. Sometimes universities have a counsellor available who may be able to help - even if it's simply someone to talk with. You can always call Samaritans 08457 90 90 90 (or email jo@samaritans.org) who provide an excellent service for people who feel they cannot cope: www.samaritans.org. You can also get in touch with your Alzheimer's Society local branch - email your address to helpline@alzheimers.org.uk asking for a local contact.

    If you feel that you or your mother are at risk of harm from your grandad when he become aggressive, or if you feel that your grandad may harm himself then it is vital you inform his GP or Social Servcies.

    I hope that this is of some help Janey and that you are able to make some positive progress. Do come back to the forum and let us know how you get on - even if it is to ask for more help
     
  4. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Janey

    Try to hang on to the fact that you are not alone in your feelings of desperation - most of us out here have been through them or are still going through them, and most of us don't have the additional stress of coping with a degree course at the same time.

    All the above advice is good, and I hope you and your mum will seek help and especially a care assessment and carer's assessment as soon as possible. We all want to care for our loved ones as long as possible, and although it is a heart-breaking time when you realise that you can no longer cope, that time sadly does come to most of us, usually when we have continued to care to the point of desperation and beyond. It is not selfish and there is no shame in seeking help. I really admire you for what you done so far in helping to care for your grandad and in supporting your mum, but none of us are superhuman and we all need to be helped at some point, and it sounds as though that point has arrived for you and your mum.

    Think about this - it is very clear that you love your grandad and he has always loved you, AND THE LAST THING HE WOULD WANT IS TO PUT YOUR PLANS AND HOPES FOR THE FUTURE IN JEOPARDY, and if he could he would tell you this in no uncertain terms.

    So you must take thought for yourself and your life - it's sad that your boyfriend and other friends don't seem to understand how awful it is for you, but in my experience it's very difficult (almost impossible) for anyone, of any age, to understand how terrible this illness is, and what a devastating effect it has on those who have a loved one affected by it unless they have been through the experience themselves.

    Please keep in touch with us on this forum.

    Will be thinking about you.

    Love, Ruthie
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Janey

    please listen to all the things these fine people have been advising. They/we have been there. Only two things to add.

    Firstly, ask for help [you have already started that, here]. It may sound awful for someone to move to a care home, but it really is best, and will probably have to happen some time anyway. I fought having my wife Jan go into a home, and in the end it was taken out of my hands, but if I had tried to go on much longer, I wouldn't have been here to write this.

    Which brings me to your point about codeine. I've been there too and walked away from it. Ruthie is correct, but also keep in mind that your Grandad may need your support [in visits, not daily hands-on caring] in the future, and if you were not there, he would miss you. He might not be able to show it, but deep inside, he would.

    Do try for help, and use this forum to dump out your woes. It helps us, too, to see that things we have experienced were not special to us, and to be able to try and help others in some way. One day you may want to do that, too.

    Above all, don't bottle it all up.

    Very best wishes to you.
     
  6. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hello

    thank you every one so much for the support it really means alot that even a few words on a computer screen can mean so much. we had a review today with the social worker about day care and stuff. cause grandad was in 5days a week but then he took bad in hospital after reacting to some drugs the respite unit gave him at christmas so he lost his places and they talk about keeping people in the community! we have discovered that the agression is a side affect of the aricept so we have took him off that so he isnt on any medication which personally i think is best.

    this morning was a total nightmare though he just would not get out of bed and hit us and kicked us and nearly threw us down the stairs now i really cant be dealin with that im a total wreck and just seem that when i do goout with my friends (as a normal 21 year old) i just get in some really bad states.
     
  7. janemary

    janemary Registered User

    Feb 1, 2004
    37
    Enfield
    Dear Janey : as you have found out - you are not alone. My husband became aggressive and although I am much older than you his illness meant that I couldn't go out with friends and other couples and I felt very isolated too. You have your mum to support and I had my children to support. The burden is too much. My husband is now in hospital and I miss him terribly. As you would miss your Grandad, but it is the man he was that I miss and not the one with this illness. You are losing your Grandad every day as the illness takes over, so you must grieve for him. As everyone has said - you must get outside help. Do you have a psych. community nurse. I found her a good source of information. Also, I have now come to the realisation that whatever we try and do we can't make the illness any better for the person suffering so we must make life better for ourselves - and don't feel guilty. Try and find somewhere safe and secure for your Grandad - visit and keep telling yourself it is the illness that is awful; it is the illness that prevents your Grandad appreciating the help you give; the illness that prevents him having any quality of life. Is there a counsellor at your uni? Try and talk to someone who isn't involved, who will listen to all your feelings. It does help. My GP has a counsellor attached to the surgery and maybe yours does too. Don't let dementia take over your life - somehow we have to put it into a separate place and deal with it when we have to, but try and carry on with a "normal" life as well. Best wishes and good luck. Get good results from your studies and remember how proud Grandad would be of you. Jane
     
  8. janey21

    janey21 Registered User

    Mar 11, 2004
    29
    sunderland
    hello

    thanks so much evey1 im feeling a little better today. gonna chat to someone at uni who isnt involved i think like you suggest. its my mam im worried about too cause i think she will end up getting ill if she carries on. but sometimes i feel like i cant help her as she has no quality of life at least i can go out to uni and stuff she cant and it s really stressing for her.

    grandad is going in for respite soon for me mams birthday to give us a break so hopefully she will enjoy herself. i can talk to my friends when im down sometimes but they dont really understand that often and my boyfriend well he just turns round to me and says "well im not from an illness free family" he makes me feel worse all thw time and i dont want that added problem.

    anyway, im going to concentrate on me essays that have to be done and whenever i feel like i want to rant and rave i can come here ha!

    thanks every1 for the great advice its good to know that im not alone.

    janey xxxx
     

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