1. paris07

    paris07 Registered User

    Jul 11, 2007
    74
    australia
    i am a first time writer i look after my mum at home 24/7 and i sometimes find it very frustrating and i wonder if other carers feel the same mum has dementia and is 87 yrs old and lives with my husband and myself for 2 years now i find the questions and the shadowing upsetting and i often feel guilty mum recently had a fall and fractured her skull and her dementia seems to have worsened i also feel guilty about mum going into residential full time care she had 2 weeks respite and she did not like that at all i often wonder how long i can cope
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #2 Brucie, Jul 12, 2007
    Last edited: Jul 12, 2007
    Hi paris07

    I have moved your thread into the main support part of Talking Point where you should receive more replies.


    welcome to TP and thanks for the detail you have given.

    Frustration? Grief yes! It goes with dementia like a suit does with a salesman.

    What you have done in caring for her at home is fantastic, but as dementia develops it can get very difficult to keep an eye on a person every minute, and falls may well happen.

    To be fair, they may as easily happen in a care home as in a family home.

    It is sensible to consider how long you can cope. In doing so you may identify areas where you feel vulnerable in your caring role, and it may be possible to address those at home, to continue.

    You may also begin to identify those area where in actuality, it will not be possible to improve things, and thus to carry on.

    I think it is always worth considering what alternatives there are, all the way along. It may be a case of the devil you know being better than the one you don't, or not.

    Have you spoken to the doctors concerned with her diagnosis? Or tried to see what other support might be available to you? Or indeed gone to look at a nearby care home?

    No answers for you, i'm afraid, but I'm sure others will have some more useful things to say.....
     
  3. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hi Paris

    I am in a similar situation myself, my 82 year old Mum has lived wiyh me and my partner for almost a year.
    I am at home all day, my partner works so it's up to me to see to all her needs.
    I have managed to get a good routine going, which means she sleeps all night, I am expecting things to change as the AZ gets worse.

    Mum is mid-stage and has limited mobility due to Arthritis, nut when she thimks she is in her'60's' she seems to get around without as much pain.
    Mum went into respite for 10 days and was RELIEVED when we fetched her home.
    I hope I never have to end up putting Mum in a Home, but I don't know what the future holds and I will cross that bridge IF and when I have to.

    We chose to have Mum live with us and we have never regretted it.
    BUT I have told my 4 grown up children NOT to have me live with them.
    My Mum used to say that, but LOVE is a very powerful emotion.

    I hope you will get some comfort from this forum, the people here are very nice and supportive of each other.
    I put Mums favourite kind of music on, she sings along and taps her feet to the beat, while stroking our dog.
    Take Care Bye for now
    Janetruth x
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,895
    Kent
    Hi Paris, welcome to TP.

    Caring is frustrating and extremely tiring. The shadowing, questioning, dependence and potential danger are physically and emotionally draining.

    But the most difficult of all is the consideration of respite care and/or permanent residential care.

    From what I`ve read of the experiences of others, the time comes when the carer just cannot cope any longer without some imput from a third party. Even then, they try to hold back, feel riddled with guilt and put it off until there really is no alternative.

    If you are wondering how much longer you can cope, it sounds as if the time is right to consider residential care. It will never be right enough to be pain free, but it will be right enough to prevent a decline in your own well being.

    Your dear mum did not like respite care. Would you expect her to? I`m afraid it has to be seen as the lesser of two evils.

    Take care, keep in touch and let us know how you go.

    Love xx
     
  5. sandrah

    sandrah Registered User

    Jul 11, 2007
    19
    west midlands
    Hi Paris
    I also have just joined. My father is 85 and has lived with us for 5 years since my mum died. The last year he has got much worse and I also felt so guilty putting him in respite while we went on holiday as he hates being in the house and loves to go out in the car all the the time so I knew he would hate being there stuck in all day. but what can you do I also have to think of my husband whose life has been turned upside down as we can do none of the things we could before as our life is not our own it is like being 56 year old parents to a baby again. I have also hate to think I will ever have to put him in a home but who knows what the future will bring. I have also told my family that I don't want them to look after me as I never want them to feel about me how I sometimes feel about my father. I try to look on it as he looked after me and he was a lovely dad so now it is my turn to look after him. be kind to yourself Sandrah
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Paris and Sandra

    I think Bruce has given you the right answers.

    First of all, you need to find out what help is available. Speak to your doctor, speak to social services, speak to the local branch of Alzheimer Society and Princess Royal Trust for Carers. There is a lot of help out there, but you have to know where to ask.

    You may be able to get Crossroads to come in to give you a break, someone to help with bathing and dressing, daycare, incontinence assistance.

    Once you've found out what's available, write it all down, and work out whether you can manage with that help. Try it for a while.

    If you still find you can't cope, then start looking at residential homes. And do it without any guilt, because you've tried all the alternatives.

    No-one has to make themself ill, or damage relationships or family life. We all do the best we can, and there comes a time for most of us when we have to admit defeat. There's no shame in that, provided we've done our best.

    It's hard, I know, and it will get harder. I hope you both manage to get the help you need.

    Let us know how you get on, we'll all support you.

    Love,
     
  7. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Welcome Paris

    As usual Brucie is spot on.

    I would only add that you are a vital partner in this unwelcomed journey and your welfare should not be ignored, as I have said so often before, without a primary carer the ship sinks.

    Keep posting

    Hugs

    Dick
     
  8. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Hello Paris & Sandra,

    My wife, Dee, needs care and for a long time I tried to hide the fact from others but it became impossible to conceal any longer.

    Then help started to appear: neighbours, friends, G P, the Memory Clinic, the Mental Health Nurses, and then the Alzheimers Soc opened up for me.

    Everyone said I had to take care of myself as Dee would be the loser if I didn't. Respite came for one day each week when Dee goes to the Day Centre and now a week's respite is being arranged. Crossroads are about to step in. All unthinkable a year ago.

    At first the separation was painful, but Dee started to enjoy it and finding this TP has made me relax and this reflects onto Dee.

    Nothing is simple about AD but hope my experience is helpful to you.

    We understand your aches and pains, love to you both - Cliff
     
  9. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #9 Margarita, Jul 12, 2007
    Last edited: Jul 12, 2007
    Hi welcome paris ,sandrah

    paris
    I have been asking myself that for the last 5 years of caring for my mother at home with me & I was still asking myself that yesterday , well I ask a support worker just that yesterday

    She told me to give myself a date , she said say August 30 . when August 30 , look back from 11th July and go from they , don't know if it work , but shall give it a go .

    feeling frustrating has gone now , because so has the sundering and any other symptom , I have just how to live with them .

    Guilty feeling about respite , gone ! because I know if I want to keep caring I have to take them , because if not it would get all to emotionally draining, that I would end up getting ill , that mum would have no other choice but to go into care home for good .

    what I have learn in caring about for my mother . I have learn a lot about myself , for me Guilt is to much of an emotional killer , if like opening a wound a cut on my leg that has not heal, so it hurt . So I close it in my mind & feel better , then I look forward to those respite knowing mum coming back home to me , while I get stronger emotionally, those respite heal my pain .
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Caring at home

    Gosh, those of you who care at home for your relative must be great people. I am almost glad that my mother didn't want to come to my home, it was never an option that she even considered, and I am relieved.

    That said, it won't be much easier when she goes into a care home in the next week or so, as not only will I be having to travel to visit her, but I won't really know how she is doing from day to day.

    So it is a bit of a compromise and I don't know how I will cope with it. But I sure admire those of you out there who look after your loved ones 24/7. Accept every help you can.

    Love to you all

    Margaret
     
  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Falls

    Oh dear, falls can happen any time with an elderly person, whether they are still living an indpendent life or not. My mum had a fall outside 18 months ago, with no sign of AZ, and it needed 2 months of doctor's visits for treatment and dressings, and another in the bath about 1 year ago, which was similar. It is nothing to do with how you have looked after her, it is just something the old people experience from time to time.

    Don't blame yourself.

    Love

    Margaret
     

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