1. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Am I being selfish...? Since my partner was diagnosed in April of this year I have hardly left his side .Iaccept that Alzhiemers i is a dreadful disease and that he needs me more than ever, but what about my needs? Physically he is much stronger than me although he is fourteen years older than I am. I have rheumatoid arthritis ,angina and very high Blood pressure. Becauise of the Alzheimers I now have to think for us both and often be "one step ahead " to pre-empt problems. I really am sooo tired. I have always been houseproud and continue to do all my own housework constantly picking up after James closing drawers cupboards etc. (these have alwasy been opened and rummaged through by someone else.. not James ) .
    Today my son has asked us to go over for tea an invitation I gratefully accepted it means I dont have to prepare a meal for us and I get to spend some time with my sons two daughters and new baby boy.
    James has announced he is not going!! He says "you can go if you want to"... My dilema is I dont want to leave him on his own he says he will be alright but I know that if I go he will create when I get home and think I have been out all day instead of a couple of hours. Also I will have to clear all the mess he will have made whilst hunting for some imaginary important object or worse still he will attempt to cut the hedge (he has been threatening to do this all week) using large electric hedge shears putting himself in danger. We have had a blazing argument and I am on the verge of walking out ....sorry to ramble on butb how do other tp members cope any advise would be appreciated. love Jude1950
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Jude,
    That is a dilemna! Lie, just say you are going out for a drive and end up at your son's. Would James go with you then?
    You do have to look to your own needs, if not you are not going to be able to care for James. You need to get day centres or sitters arranged as soon as possible - or at least begin to think about them. You need to talk to family about your needs - is there anything they can do to help? If you do go out, hide the hedge cutters - put them in the boot of the car.
    Hope you have managed to get to your son's. You are as important as James - you are both in this together. You have to find a way to give both of you a life, and you may have to be very hard to ensure that you do get some time.
    Love Helen
     
  3. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Jude,
    You are NOT being selfish. You are in a similar situation to us, a few years back, and one of the hardest things is to accept that you may/will have to do some things just for yourself now and then. You are spending most of your time fitting in with your husband, to make life run as smoothly as possible and to keep him (and the house!) safe. Most of the time, that's fine. But every once in a while something will crop up that really means a lot to you, like your invitation to spend a couple of hours with your son and his family. It is hard and not always practical to say 'I will do this, if needs be, I will go on my own'.
    Consider Amy's words. Try and find a way to make time for yourself, either regularly, or at least occasionally. How you go about it will depend on many things - your husband's attitude, willingness of family/friends to help out, availability of day centres or such like ...... it will take time for you to find the right solution, it is a moving target anyway, and it will also take time for you to be able to actually enjoy those mini-breaks without feeling guilty!

    Good luck, and keep in touch.
     
  4. Whocares

    Whocares Registered User

    Mar 18, 2006
    27
    Tell him he already agreed to go, and you have told James he will be there, Sorry if that sounds cold but use his memory loss to your advantage. My hubby hasn't got alzheimers, or any other disorder and I already do this,
     
  5. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    a better day

    Thanks Nada for moving this thread. Things are a little better today. Been to see GP and got some antibiotics for my chest infection I am sure things will not seem so bad once I am firing on all cylinders and felling better. Whist there we discovered the results of Jim@s mmse test ..he scored 18 out of 30 putting him in the mid stage.of Alzheimers although I knew something was wrong I didnt think he was quite that ill!! He went to my sons with me and had a thoroughly good time playing with my granddaughters....he didnt want to leave !!
     
  6. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Glad it all went well I find with my mum who has AD , its always the thought what every she thinking before that upsets mum, because when she gets there she always fine.

    Have you ever thought of getting a carer in to help you or respite, if your husband would not go to day centre? Could you not get a carer to come around & look after your husband while you get some time out?

    Have you contact social servers: social worker to do you a care plan & an assessment for your husband? As in the long team you’re going to need a lot of support or have you done all this already?
     
  7. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    #7 Rosalind, Jun 12, 2006
    Last edited: Jun 13, 2006
    Jude what help are you getting? With your health problems, surely you should be getting assistance, and for goodness sake ask ask ask. It sounds as if your husband is like mine - very keen to stay in his own little comfort zone, and strongly resistant to any sort of outing. I use various tactics - he has a befriender from Altz Support who announces the need for a haircut, and scoops husband up for one at the same time. Or I just get tickets for something, and arrange to go with other people who turn up and we all go off together (he is less likely to kick up a fuss in front of others). When he gets to places he does not mind, although does get anxiety trots.
    I recently discovered I was entitled to 8 weeks respite care for him per year (have only used one week, and he hated it in fairly grim old folks home, so not sure about repeating that) but I had to ask, rather than having this information given to me.
    In our situation, we need to stop being stoics, and coping regardless, and throw some wobblies. The powers that be want us to go on caring, and if they see the likelihood of the carer going doolally, or collapsing physically, then the NHS would have two more people to cope with, so help can be obtained if you shout loud enough.
    (Looking careworn when seeing doctor or CPN etc not a bad idea either - leave off make up, have slightly dirty, unkept hair, and wild look in eye).
    And, come what may, schedule time off for yourself doing something you want to do - cinema with a friend, shopping, join a book club, anything you fancy, and MAKE yourself do it even if you can't face the prospect of getting in a sitter.
    Good luck
    Rosalind
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    :) Quite brilliant! Thanks for that!!!!;)

    Jude, very different situation to you but I guess the old guilt is generic. I find it hard to relax when I'm not with mum (probably why I spend so much time on TP somedays ... it's like it's OK to do this because it's still dementia related). I've been looking forward to the World Cup ssssssssooooooo much - and yet now it's here feeling I haven't got the inclination/ the right to watch - how dare I do anything 'just for me'?....

    Lots of great advice here from others, I see... gonna hijack one or two ideas for me!

    Hugs, Karen, x
     
  9. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thanks Karen for your input.. I am waiting for the first visit from the cpn but after reading some of the posts on here I am going to take the initiative and contact social services for help .. I think I read some where on this site that I can ask for an assesment. James knows he has AD but my daughter thinks he is in denial. Whatever happens I will get help from somewhere I need to be healthy for both our sakes. This site is amazing it makes a difference knowing that there are people out there who understand about caring for someone with dementia.
     
  10. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    the first letter ive read

    Wow!!! im new to this my husband is 17 years older than me, we have a 17 year old daughter, who is studing A leavels, and im trying to work full time.although at home he follows me all over the house, yes and papers all over the place and i so want to run away i dont know what to do he is not someone i know, well sometimes hes there im 53 now i want to shout and run and run,
    i so know how you feel im so glad i read your letter THANKYOU :)
     
  11. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Welcome, you are certainly not alone. There are quite a few of us with older husbands with dementia of one sort or another, and I think we have all thought about running away. It must be terribly difficult with a teenager - I am now thankful we did not have children, as they would be around that age, and I think it would be desperately difficult having a father who is at best odd, and at worst a crashing bore. All I can suggest is that you grow a thick skin and insist on some 'me' time, doing something you really like, and ask for as much help as you can.
     
  12. jennifer3

    jennifer3 Registered User

    Apr 4, 2006
    14
    lancs
    what about me

    i have been in the same boat finally went to drs for arthritis and cryed on her she was lovely social worker come and did assessment a week later and we are now getting help for two mornings so i can go out and care vouchers for any other time reqiured used them yesterday had a lovely day out very worried at first but every thing went o.k. hubbie fine about young lasses visiting him and is good for them (why not for me i wish) . Still trying to work out what to do for a holiday but now feel better about leaving him with strangers as he will not leave his safe enviroment anybody any suggestions:D
     
  13. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Jude hi,

    This is a bit 'men are from mars' and offering solutions - which of course there are not... However... in the last year I have had someone 'a carer' to come in for 4 hours one afternoon a week - really made a difference - after a while I increased it to 2 afternoons a week and to-day I made it 3...

    Just getting out from under - going and doing the things you want for yourself which if the world was 'normal' you would do anyway without thinking really has helped me - cope- For some hours a week I can go and play - do my thing - have to watch the clock a bit but what the hell..

    I suspect that it is almost too easy to just cope... do it... we all have a right to a life as well... We have this responsibility which must be fulfilled but there is no reason or law or moral obligation to let it ruin our own lives - totally... Told you this would be men from mars...

    love and good luck and be optimistic


    Michael
     

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