Nursing homes, Guilt & Families at War

Discussion in 'ARCHIVE FORUM: Support discussions' started by Tressa, Aug 25, 2006.

  1. Tressa

    Tressa Registered User

    May 18, 2004
    N. Ireland
    Its been a while since i was here on TP, I have been busy moving to another country. I was my mums main carer and had been for 10 years, siblings took no part in my mums care and left me to it. I met a wonderful man 3 years ago who is from Belgium, i live in Ireland, I made the heartbreaking decision to move to be with him and decided to make my sisters and brother take some responsiblity. I moved last April and since then it has been a nightmare. They couldnt cope and paniced at every wee thing and made mountains out of mole hills. I go home every month to see my mum, and have seen a decline in her. Her last assessment she scored 11/30, three months before it was 15/30. She is on a steady decline now but is still brilliant for the length of tme she has had the disease. Anyway, I am at war with my sisters and have been since I left, they just want my mum put in a home and I just cant bare the thought of it. I truly believe it would be the end of her but they claim she needs 24 hour care. She is damn near getting it now at the moment but there is a few hours she is on her own but thankfully up until now she hasnt done anything to put herself in danger, i know there is always a possibility but i have always ran with a risk to give her her wish which was to remain at home. I own half of the house jointly with my mum and they have accused me of trying to keep mum at home so that i dont lose her half of the house to the local authorities. So at this point in time Solicitors are involved and my sisters have done so many underhand, dirty tricks that i refuse to even speak to them.

    I have looked at nursing homes but it made me even more convinced that mum should and could remain at home for a while longer. I have accepted that it will eventually happen but i wanted it to be when she wouldnt have any idea where she was. So finally here comes my question/comment, Is it really the best thing to do for our loved ones or as carers do we tell ourselves its for the best to stop the feeling of guilt and knowing that it isnt the best for our loved ones? Lets face it, how many of us would want to be put in a nursing home? Other societies firmly believe that families should stick together and that the elderly should be looked after by the family and would never think of putting their elderly relative in a home. Is it that as a society we have convinced ourselves its the right thing to do so that we can live with our actions and get on with our own lives without the burden of looking after elderly sick parents?

    I hope I am not going to offend anyone with this posting, to be honest I am trying to grapple with my own guilt and came up with this thought. I know in my heart that this is what my sisters are doing, they are convincing themselves they are doing the right thing because they really dont want to be bothered with my mum and ignoring the fact that it will destroy her.

    i am now faced with some hard choices, go back to Ireland on my own (my husband to be is in the family business) to look after my mum, try somehow to bring her to Belgium or put her into a nursing home. I just dont think I could live with myself if I done that, but i also cant bear the thought of being without my wonderful man. I hate my life!!

    i apologise again if i upset anyone with my comments, its not my intention. Part of me wants to believe its the best thing for my mum but in my heart i know the best thing for her is to be with me looking after her.

    Thank you in advance for listening to my guilt ridden moan.

  2. Helena

    Helena Registered User

    May 24, 2006
    You have already faced the fact that eventually your Mum will need to be in a care home

    I agree other cultures care for the elderly at home but at what cost emotionally and physically ?

    Our culture today is very very different and its generally not practical to care for AD/VD sufferers at home especially if they are aggressive or violent
    You do have your own future and your own health to consider and you only have one life

    Maybe your siblings find it all too much either emotionally or physically
    I know I find just visits to my Mother leave me totally mentally and physically drained and stressed and theres no way either mine or my sisters marriage would last if she lived with either of us

    I firmly believe you must think of your own life cannot cure your Mother , it probably will not really make much difference to her either way and you should not burden yourself with the guilt monster
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Some random jottings:

    Let's not forget - it's not the going into a care home that will destroy her, it's this darn disease.

    If your Mother was in her right mind, would she really expect you to destoy your life for her sake? If she is a loving parent, I doubt it.

    Your Mother has deteriorated since you left? AD sufferers DO deteriorate - it's the nature of the disease, and although I'm sure that you feel guilty, there is no way to know that if you were there, there wouldn't have been a similar deterioration. One thing you can be certain of, she wouldn't have got any better.

    You attribute motives to your sisters, they attribute motives to you. It's not a question of who is right or wrong, it's finding the best situation for your Mother that allows all of you to have some quality of life.

    I am the only child of a Mother who has stroke induced dementia, and who lives across the Atlantic. Guilt? Of course I feel guilty, but I'm not prepared to be a martyr either.

    I hope I haven't come over as too insesitive, because I feel a great deal of sympathy for you. I do feel, though, that you and your sisters have the right to have your own lives.

  4. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Tressa,
    It is such a tough decision. My mum went into a NH in January; my father had been her full time carer, but could nolonger cope. I could have given up work, and helped more, but that would have put my family under a lot of stress and financially we would have found it difficult.
    I think with a team of carers, my mum would be better off at home - but a team is more than my father and I. Since January, my father has relaxed - he has cared for so long, and was worn out, his health was beginning to suffer. Last night he was able to come out with us to celebrate my sons' exams results, something he hasn't been able to do in the past. I think one has to consider everyone's physical and mental health, and relationships, not just the person suffering from dementia.
    And I am afraid that if your family do not wish to take on 24 hour care, then you cannot make them - do not let it cause a rift, that is not what your mum would want for her children.
    Love Helen
  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    As long as I was mostly the person at home with my mother I felt that I had a right to be heard and was angry about being excluded from decision-making. I wouldn't have felt as if I had any such right if I lived in another country and could only visit once a month.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    When we take on the role of caring, even though we would chose differently if we could, it is our choice.

    We cannot tell other people what to do, even our own family.

    There is usually one family member who is seen as `the carer`. How many times have we seen that. Because of this, the `carer` is riddled with guilt if they give up before the end. To ease their guilt, they often direct it towards others, but they have no right.

    We can only do our best. The time will come, eventually, when there is little option but to consider a Home. It`s painful, but it usually has to be done.

    Grannie G
  7. wendy43uk

    wendy43uk Registered User

    Dec 22, 2005
    hi i hope uou feel better for the adviceand dicide to take it i myself am in a rotton potiton john my hubby has gone down to 11points from19 in 6months hes only 60 i am his carer and i worn out i work 12hr shifts in a emi unit were the residents are well looked after and are happy john goes to day center 5days a week and i have a carer come to our house once a day to wash and dress him when i am at work the kids wach him but he dose get left alone the socal worker dose not think this is is safe anymoor as hubby smokes today i have ammitted to my self i cant pack in work i have to pay our morgage and i cant be thire for him all the time hes going in restbite on monday for 2 weeks if he settles hes stopping thats not what i want but it has to be he will get all his needs met mabe let your mum have a weeks rest bite while uou are over and see how she settles hope this helps a big hug to uou as i understand how uou feel i have cryed allday today but nothings going to make hubby better so i have to make the best of it dont ruin your life am sure nobody wants u to ask yoreself would mum want that i think not take care wendy:confused:
  8. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Tressa, You have done so much for your Mum in the past but circumstances can naturally change. There are many people (for many reasons) who cannot take on the responsibility of caring all the time for someone with dementia, especially as it progresses. Have you looked at many homes? I know that to most people they are the last resort but there is a positive side - 24 hour care, a room where your Mum can keep personal belongings and have visitors, planned activities, there would be a relaxation in your Mum's responsibilities (my Dad seemed constantly worried about locking doors etc when he was at home) and she may even make new friends.
    What happens if this is not possible and your Mum is a danger to herself before she gets to that stage? If you have accepted this will happen eventually then I would advise that you look around now at more homes, ask lots of questions and perhaps you will find somewhere that will suit as the best compromise, because after all, this disease forces us all to compromise in one way or another.
    Best wishes,
  9. Amy

    Amy Registered User

    Jan 4, 2006
    Just wanted to send you a <<<Hug>>>. Hope you feel a little better tomorrow.
    Thinking of you.
    Love Helen
  10. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    On this site there are several men who care for their wives at home 24/7 with help and back up,I am one,there must be many more throughout the world.
    I have coped now for over 11 yeqrs , I am just an ordinary man,not a superman,just drawing strength from love for my wife.,and back up from SS.
    I do disagree with your statement,it would be more acceptable if you added "In my humble opinion" for that is what it is.
    Best Wishes
  11. Helena

    Helena Registered User

    May 24, 2006

    I do not in any way denegrate what you are doing to care for your wife especially over the course of 11 years

    I actually think that you and any other husband/wife/partner who manage to care 24/7 even with help are truly supermen and women

    However i believe you will find that more and more people find themselves unable to devote their lives like that and especially when its those who have just retired hoping to spend any active years travelling etc and are faced with the difficulties of 90 year old parents with VD or AD

    In fact it seems that VD is rather difficult indeed to cope with because of the total lack of insight of the patient to their condition and their vehement denials that anything is wrong or they need help or that their finances etc are in a real mess

    This evening I met a friend whose son is a surgeon he is in despair at the massive numbers of very elderly patients with AD /VD who fall and break their hips etc and are stretching the NHS beyond breaking point

    This is exactly the crisis my Mothers doctors are just sitting by and waiting for
    meanwhile all my sister and I can do is try to cope as best we can from a distance
  12. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Norman and Helena,
    I think that you are looking at the situation from different view points - one a spouse/partner relationship the other as parent/child.

    I think that there are many spouses/ partners who care for their loved one for years on end - for many they took the vow "in sickness and in health", and will struggle on as long as humanly possible to keep their loved one at home. (Let me say now, I do not think that placing a loved one into a NH in anyway means that they are not sticking by the promises made.) My father reached the stage when he was becoming unwell, and would have needed a team of helpers to care for my mum at home.)

    I think the parent/child thing may have changed. As families are now more geographically scattered, and more woman work outside the home, I think that children are less easily available to care for parents. With mortgage commitments, giving up work often isn't an option. And to care for a parent 24/7 requires a lot of self sacrifice - and sacrifice from your partner and children. Some people are able to make that, others aren't.

    I know that I feel humbled by those of you who are caring 24/7. I feel the pain of those of you who have had to make the decision to place a loved one in a Care home/NH.

    Helena, I don't think that Vascular dementia is any easier or any harder to deal with than any other type of dementia. I think that with all types of dementia we have to try and draw alongside the sufferer, see life from their perspective, and work with them and encourage them to use the abilities they have. We have to be prepared to be hurt repeatedly, but know that the hurt is not intentional. We have to not give up on them.

    Norman, I'd better add, in my humle opinion, as I don't want my wrists slapped!!
    Love Helen
  13. Helena

    Helena Registered User

    May 24, 2006

    Its strange that both Alzheimers UK and Alzheimers Scotland helplines and my Mothers own doctor have all said that VD and Lewy Body dementia are far more difficult to deal with because of the extreme swings from one state to another
  14. Amy

    Amy Registered User

    Jan 4, 2006
    I am not going to argue - my experience of vascular dementia has been different.
    I don't think that it really matters, we all have our own situations to deal with, to the best of our ability. We are all on this forum to offer support to others and to receive support when we need it . I appreciate that you are finding your mum's condition very difficult to deal with at this time, and hope that you can find some peace with it in the not too distant future.
    Love Helen
  15. Helena

    Helena Registered User

    May 24, 2006
    Thanks Amy
    I sure wish there will be some peace from it soon too

    I guess we need an awful lot more info and examples of exactly how people are affected by any of the dementias because nothing i have read prepared us for what we are on receiving end of

    I also think the general public have a very different view of what effects demetia can have
  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    In the end, is it the family's choice? The impression I got was that whatever I did it was the social worker who had all the power. And the social workers only saw my mother once each.
  17. janjan

    janjan Registered User

    Jan 27, 2006
    I would like my dad to end his days at home, with mom caring for him. But sadley she is totaly worn out, her own health is suffering. In an ideal world i would be there 24/7 for them both, but with a family of my own there's only so much one can do. So we are now waiting for a place for him to come avalible, that we would like him to go to. It's been me thats done all the arranging, the endless phone calls. Moms hearing isn't very good. All i could think was my god i'm putting my dad in a home, all the time i was on the phone. Coming off the phone crying my eyes up, the guilt was terrible. But my biggest fear is that dad will end up breaking something falling down the stairs, or even taking mom with him. So at some point you do have to decide what is best for all concerned. I would like to give up work to be there for them both, with the time we have left with dad. I know i'm doing what is right for us at this time, but it hurts me to think about the fact that he can't be at home anymore because it just isn't safe for him to be there. :( Janet :(
  18. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Janet,
    I know what you are going through, as we were in the same place in January.
    Though I still feel guilty at times, it is so good to see my dad being able to interact with other family and friends more normally, instead of being worn out by caring. He has even suggested that if I organised a few days away in a cottage or the like in October, he would like to join us for a holiday. I don't know how many years it is since he has had a holiday. My mum is safe and well cared for and visited regularly - It is not the same, but as you say "at some point you do have to decide what is best for all concerned".
    It doesn't stop hurting Janet, but it does becme more bearable.
    Love Helen
  19. Lila13

    Lila13 Registered User

    Feb 24, 2006
    My mother wanted to die in her own home, with the two of us sitting with her, one on each side holding her hands, but that sort of death can only be guaranteed by suicide.

    Instead she died in a hospital which she wouldn't have chosen if she'd had a choice, too far away for frequent visitors, with no-one she knew there.

    Of course I know plenty of people die in worse circumstances.
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    #20 Margarita, Aug 27, 2006
    Last edited: Aug 27, 2006

    You have hit the nail on the head with something that is happening with me trying to get my point over to SS and the 24 stairs that my mother has to go up and down 3 times a week to go to daycentre , my mother fall up the stairs the other week when walking up them alone

    Now with my support I help up and down them its ok going down ,but going up mum puts all her weight on me, my back is killing me now and I do suffer from sciatica, my fear is also falling down the stairs, like you said but taking ME down if she fall

    I hate to say to my mum no you can’t go down out on the days of daycentre because I can’t take help her with the stairs because of my back . as when I help her up those stays she so grateful saying she would not know what to do with out my help getting her up those stars keeps thanking me .

    I know what SS will say if I say, I cannot take mum up down those stairs that they bring someone to help her maybe. I know what my mum would say ok she not going to daycentre if SS do not get someone to help her. I cannot keep doing it taking mum weight or my back going to go.

    God if mum did not go to daycenter I could not get her out at all she be house bound all because of my bad back & a fear of me falling down with her if my back go or mum loseing her step .It’s a commercial steps leading to my flat

    Its all such a mess . I am going on a respite soon clear my mind
    So that I can like you say
    So am going to copy what you said as you have express it so right if you don't mind .

    What I would have said to the father is all those AD /VD people have been contributing all there life to the NHS more then his son and are paying his son wages so stop complaining They have the same human right as anyone else what about all those people who smoke !lung cancer or those that drink to much need new kidneys they are stretching the NHS beyond breaking point oh I could go on ,but better stop :eek: lol :)

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