Selfishness - my own.

Discussion in 'ARCHIVE FORUM: Support discussions' started by lisette, Oct 9, 2005.

  1. lisette

    lisette Registered User

    Aug 21, 2005
    2
    Hi
    First time I have used this site, my mother was diagnosed with Alzheimers five years ago and has coped well with the help of Arricept - until now. She has had a lot of upheaval in her life recently, culminating in a move to Spain with my father, my husband and myself.

    There is no care for Alzheimers patients out here, unless you can afford to pay for it, plus my mother has not settled, she hates the weather (one of the reasons for them coming), the people, the place (it is too quiet), the food - everything. Her deterioration has been rapid. Now we have the verbal aggression, against me as well as my father, apparently we kidnapped her when she came to Spain. She point blank refuses to wear incontinence pads and even though I do the washing, ironing, cooking etc., refuses to give me her clothes on a daily basis. Consequently she smells, baths are a quick dip in and out again. We are moving my parents back to the UK to a retirement apartment close to the doctor they used to have and all the village facilities, my father is dreading it as he relies on my help. I am looking forward to it, my parents and I have never been close and this last eighteen months has been murder. My husband and I cannot go out alone without feeling tremendously guilty, we dread being at home because we could be called upon to sort out a situation that esculates each time. No one on your site seems to feel as I do, everyone is sympathetic to the victim of Alzheimers but I have had enough. My children have grown up and are successful in their own rights, my husband and I were looking forward to a life of our own, now it is like being a child again having to be accountable to my parents, yet being a parent also, looking after their needs.

    Am I the only one who feels like this?
     
  2. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    Lisette,

    I think even those of us who *have* been close to our parents during our adult lives, and are carrying on in some capacities as carers, feel resentment at the disruption of our own lives, the amount of time and energy it takes, etc. How much more you must feel that way if you have *not* been close to your parents, until now when they need help. I think we all feel resentment and frustration at the patient at times (even though we know they can't help it), as well as at doctors and health systems that seem inadequate, at care homes that call us to do something when there is a crisis, etc.

    Karen
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Lisette, welcome to TP and thank you for your post. You will probably strike a cord with a lot of carers out there. Just because we don't always vocalise our feelings of resentment in the same way, does not mean we do not have them.
    (So often I have ranted in the past about the real ME in these situations)

    Please do not feel guilty. You can only do what you are capable of. I am sure the move abroad (whilst done with the best of intention) may well have unsettled your Mum, so lets hope that coming back to England helps her.

    As long as you do as much as you can for Dad, and keep in constant touch, being there for him, if only to listen.....at this time you cannot do more. Let us know how things progress. Regards, Connie
     
  4. Finnian

    Finnian Registered User

    Sep 26, 2005
    60
    U.K.
    Lisette
    We are all different. The regulars on this site are here because they are carers. If you read through the site everyone struggles with this however much they love the one they are caring for.

    The people out in the world who can not care for some one with this illness don't usually post here. You are getting a biased view point. Don't beat yourself up if it is not for you.

    Karen hit it on the head - if you were not close to your parents anyway its asking a lot of yourself to change your whole lifestyle. Do what you can for your parents, in your own way. Keep in touch and support Dad from a distance. You may feel more able to offer more in this framework rather than living under the same roof.

    Finnian
     
  5. lisette

    lisette Registered User

    Aug 21, 2005
    2
    Thank you everyone, you have been a great support.
     
  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Dear Lisette, You seem to me to be far from selfish, and I know exactly how you feel in a lot of respects. My Mum was diagnosed with AD 18 months ago shortly after Dad died, and life has since turned upside down. Plans postponed or abandoned. Children leaving home and their space has been filled. Through the consultant, I was led to this site and it has been a life-saver. But in the beginning, i too felt that people here were a lot more caring toward their relatives than I was, or could ever be. I have never felt close to my parents, yet I do love them. That sounds ridiculous!

    I hate my mother sometimes -so apathetic, just letting everything be done for her ...and on one of her good days I hate her even more. Here I am organising and planning her life, tired, with a million and one things to do, whilst here she is, chatting away to her neighbour, not (seemingly) a care in the world.

    I try to do what I can, seeing someone who is very vulnerable, just as you're doing all that you can. You sound very caring indeed -I think people do it in their own individual ways. Sorry to have written such rubbish -hope you can understand it.
     
  7. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Not rubbish at all, Lulu. I consider myself very lucky to have had my Mum taking the role of Dad's main carer through all of this. I'm pretty sure I would have been feeling resentful if I'd had to cope with the day-to-day looking after of my Dad. Lisette, I admire you for attempting this in the first place, especially considering the hygenie issues. Supporting your Dad from a distance sounds like the best solution for all your family. Let us know how you get on.

    Best wishes,
     
  8. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Don't let the guilt monster get at you, Lisette - you have done your utmost, and your mother still doesn't want to live with you, so let her go back to England. Your father obviously will need some support. I find I need something to look forward to in life, so why not set a date straight away for him to have a respite trip to stay with you, with some sort of care arranged for your mother in the UK?
     
  9. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi Lisette,
    You know we cannot possibly know how things are for you without being in your shoes. I know if it was my mother in law instead of my Mom with AD, I would probably not be so gracious because she can be a tyrant. We are all just human and sometimes love also means letting go. Thanks for your candor and perspective. Honestly, we all feel those negative feelings no matter how close we are to our AD loved ones!
    Take care,
    Debbie
     
  10. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    You're not alone, Lisette - merely human

    Lisette

    though you're probably not expecting anyone to say it, I think you should be congratulated on being brave and posting your message.

    Your feelings are eminently understandable, natural human emotions at the circumstances you find your own life in. Those we find ourselves caring for may not have ever asked us to do so (and may not be capable of realising they are implicitly doing so). But equally, you didn't ask to be given the task.

    And while we all hope we would be well cared for if and when we need it, that doesn't mean our relatives are best placed or best suited to do so. You obviously *are* caring in your deeds and actions, and probably feel in desperate need of having that recognised and thanked and appreciated. That's human too.

    Another member of this site who has been a tower of advice and wisdom for me keeps telling me to stop beating myself up: on her behalf, perhaps you'd allow me to be so bold as to offer you the same advice?

    Even those of us who believe in angels tend to equate them with the next life rather than the present one - if you can't allow yourself to be human, you're not giving yourself the break you need.
     
  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,107
    Toronto, Canada
    Lisette,
    You're not selfish - 18 months is a very long time. Things are also different for spouses I find. Spouses seem to hang on longer, usually way, way past when they should have let go. But that's another post.

    I had my mother in my house for 4 days and then had her involuntarily committed to hospital & we proceeded from there. That was nearly 5 years ago. So my guilt is that I never did anything. Had I stuck it out for 18 months, I would probably feel a lot less guilty.

    Try not to feel guilty - yes, easier said than done. Some days will be easier. Moving them back to the UK sounds like the best possible choice under the circumstances.

    Joanne
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Joanne

    Families come in all sorts, some close, others not, and all shades in between and outside.

    The spouse thing is probably because both partners chose each other at some stage, and formally [well in the old days when we used to get married ;) ...get me, sounding like a nonagenarian ] made a declaration that we would care for each other always. In doing that I also shook Jan's Dad's hand [fabulous man called Glyndwr] and formally took over from him, with responsibility for Jan.

    So I promised Jan and her Dad [plus a God I suppose, though.......] that I would look after her. Now although he died over 20 years ago, he once played Rugby Union for Neath, so I'd not want him coming back to tackle and haunt me... :eek: ]

    I can't know what I might have done for my Mum had I not been 100% engaged in caring for Jan at the time she needed help. Fortunately, my young brother and his family lived close to her and did an amazing job, until her death.

    There's a domino effect with the dementia caring.

    Final thought:

    The really bizarre thing is that if our situations had been reversed, Jan and I, then I think I'd have wanted her to ditch me pronto, run away like hell and enjoy her life. I don't believe she would have, and it certainly didn't work this way around!
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, have to say, however we do it, we all do our best. Just because we choose not to personally do the caring bit, it doesn't mean we don't actually care. So don't beat yourself up Lisette, you are doing the best you can in a situation you could not have anticipated. Dementia is the problem here, not your lack of care for your parents. You would not have all moved to Spain together if you had not wanted to now would you. The fact that there was a "lodger" waiting in the wings that none of you wanted but has now firmly moved in is no ones fault. By supporting your Dad in any way you can from afar, you are still caring. Oh how I hate this darn disease and the pain and anguish it brings down on us all! Love She. XX
     

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