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Are we not important too?

Discussion in 'I care for a person with dementia' started by AndreaP, Aug 22, 2015.

  1. AndreaP

    AndreaP Registered User

    I have only recently joined this forum so excuse me if I'm rehashing an old topic.

    One thing I've observed from reading many posts is how utterly worn down and distressed many members are by their parent/partner's dementia. I am genuinely puzzled why the carer's needs are considered more important than the carer's.

    When my 91 yo mother reached the point where living alone required a lot of support and while she continued to reject outside assistance, I decided that my life was being impacted upon to an unfair degree. Constant phone calls about the same thing wore me down. Dealing with her anxiety wore me down. Reassuring her that her hallucinations were not real wore me down.

    She did not want to leave her home - does anyone voluntarily enter a care facility? - but I rationalised that my needs were as important as hers. I don't think it's selfish, I thinks it's realistic. Mum isn't rational, her dementia has made her very self obsessed and she is in no position to judge what is best for us all.

    My brother resisted the tough love approach "because it will upset her". I reminded him of how upset we were by the progression of her disease. She refused any help but ours, would not speak to a doctor about her condition and had alienated everyone but us.

    I looked at a LOT of care homes, badgered the best one until they were sick of the sight of me and got her a place 10 days ago. We told her firmly she had to move; we brooked no objections and that was that. It was hideous but her move has been an utter godsend. I still have CH issues of course - phone calls re her bizarre behaviour and her odd requests - but I know we did absolutely the right thing.

    Do I feel guilty? Not one little bit. Mum has had 91 very good years and while her disease is not her fault, I must take charge now and be the rational one. I don't believe in sacrificing myself to her needs when she can be supported by others who can walk out the door at the end of the day. It's not wrong to care about your happiness and needs. So many people can be affected badly by one person's illness. It should not become the burden it seems to be to so many people here. If it makes you happy caring for someone with dementia then that's great. But if it isn't don't be afraid to say "enough".

    You have a right to be happy too :)
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    I have edited AndreaP's post

    I think this is a very important post and raises critical issues for carers like myself. It is a very difficult path to tread being a carer for a loved one and not simple to always look after yourself. It is something I aim to get better at in all sorts of ways. G L
  3. Lawson58

    Lawson58 Registered User

    Well said Andrea!

    You are absolutely right on the mark. And it takes a lot of character to face up to a difficult situation and to be decisive about the action you need to take.

    Of course no one wants to go into a home and nobody wants to have to go down that path of having to place someone into care. But that doesn't mean that you have abandoned your mum.

    You accepted the responsibility and as far as I am concerned you have nothing to feel guilty about. You will still have things you need to do for her but I sincerely hope that you enjoy the opportunity to do something for yourself.
  4. RedLou

    RedLou Registered User

    Jul 30, 2014
    Good for you, girl. :)
  5. nicoise

    nicoise Registered User

    Jun 29, 2010
    The forum is a platform for discussion about all aspects of dementia - it also acts as a sounding board for those who might be finding whatever they are dealing with a difficult challenge, and allows them to let off steam or just speak their innermost thoughts in a safe and non-judgmental place.

    So I suspect there will be a much greater number of posts saying "I'm finding this difficult" than those saying "I'm happy because I've found a solution and everything is good" ......

    But it can become difficult to see the wood for the trees at times, especially when embroiled in caring. Remembering to look after yourself can be at the bottom of the list all too often :)
  6. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    I support you andreaP in your decision and viewpoint. You do have your mum's interest at heart but have recognised the best way to care for her however how hard it looks.
    My mum is also difficult and selfish but refusing all care and support from family and professionals alike. I am seriously looking at care homes and, as no other family member is interested, will make the decisions on my own however tough it is.
  7. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I took the same approach with my mum, Andrea, and I have often posted on here that carers have rights too. I have never allowed myself to feel guilty about the difficult decisions I had to make regarding my own mum. Sad yes, but guilty.....no.

    In my case, things were made easier because, over the previous decade or so, I had discussed 'what if' scenarios with both my parents as we watched my uncle, aunt and a close family friend succumb to both AD and VaD.

    Knowing that, when they were well, they would have approved of my decision to move Mum into care, made things so much easier. This is why I have already started similar 'what if' discussions with my own family. I will not allow the guilt monster to ruin my children's lives or future intransigence on my part stop me getting the best care I myself might need one day.

    My mum and now my MIL both ended up in carefully chosen care homes and in both situations, it was absolutely the best decision for them and the family. MIL was moaning away when we went to see her just a couple of days ago, but she has no recollection of the totally miserable existence she was living just eighteen months ago. She has put on weight, has new friends and looks years younger.

    Do any of us feel guilty she is in there? No way.

    I wish you and your mum well.
  8. Dunkers58

    Dunkers58 Registered User

    Nov 9, 2013
    I agree with everything that has been said, well done for biting the bullet. I am not at that stage with my Mum yet, but hope if the time comes I will have the same strength.
    We are all important
  9. gringo

    gringo Registered User

    Feb 1, 2012
    I understand what you are saying, but I have reservations. I can’t comment on the parent/carer relationship not having any experience of it.
    A spousal relationship however is, I believe, different and is unique, it is not one which is inherited, but entered into voluntarily and is very special and not to be treated lightly.
    I have been caring for my wife over ten years, the last three in a CH. My head tells me that a CH. was necessary, but I have to tell you, in the small hours, I revisit what I have done to my much loved wife, and I find the jury is still out. Guilt and responsibility can’t be shuffled off easily.
  10. looviloo

    looviloo Registered User

    May 3, 2015
    I totally agree. However, in practise I've found it incredibly difficult. My head says one thing and my heart says another... coming to this forum to read and sometimes write about it helps a good deal. And slowly I'm becoming more sure of the horrible decisions I've had to make. But I've needed a lot of support and reassurance along the way.

    Yes, we need to take care of ourselves too, I really believe that... but I constantly need to remind myself of the fact. And for me, it doesn't stop the whole process being a very painful one :-(
  11. janey106

    janey106 Registered User

    Dec 10, 2013
    I have just posted a new thread which in some ways you have answered, thank you. We so want Mum to be content, happier, stimulated more etc but quite frankly neither Dad, me or my Sister can do any more but Mum is such a complex mix of problems we aren't 'there' yet .... But getting closer. Thank you for posting this and the other replies also help.
  12. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    #12 LYN T, Aug 22, 2015
    Last edited: Aug 22, 2015
    In answer to the title of your thread-Yes, you are important too! As for that guilt monster-I never got rid of the b****r! I still haven't-even though I keep telling other members to get rid of it:confused: I always think that others have less to feel guilty about than I have!

    My biggest problem by far was knowing/thinking that whatever I was going through Pete was having a far, far worse time. When he was taken to a CH I felt that I had betrayed my marriage vows and him. So my burden is heavy but I am learning to carry it through my life now that I am on my own. So guilt on one shoulder and sadness and heartbreak on the other.

    Yes, we do have a right to be happy too-but I found that once Dementia entered our lives true happiness was forever unattainable.
  13. gringo

    gringo Registered User

    Feb 1, 2012
    Oh Lyn, how I hope scar tissue will, in time, dull the pain and allow you some measure of relief.
  14. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I think this is a generalisation. Everyone is different and each one's history with the person they care for is different. Whether it's a parent or a spouse - I have had both with dementia - that history will be reflected in the way they react to the challenges of caring as will an individual's personality, character and inclination.

    However, whatever the differences, I cannot believe that caring for a loved parent or spouse with dementia, no matter how loved, makes anyone happy. How can it, on any level? In my experience, when dementia enters, true happiness fades for both carer and the cared for.

    Whether one views it as a 'burden' or simply just what you do for the person you love is up to the individual and many would refute the description whilst at the same time being worn out with the effects of caring.
    You might say it is their choice but to some, there is simply no other option until they are forced by health - that of the sufferer or their own - to relinquish some of that care to others.

    I'm with Gringo - "Guilt and responsibility can’t be shuffled off easily."
    My burden is that guilt which can never be relieved.
  15. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    It's taken me ages to write my comment Lyn and I've only just seen your post.
    You showed such devotion towards Pete that you should feel no guilt. Your love for him always shone through all your posts and it still does.
    I hope you find a measure of peace in your new home. You truly do deserve it. love xxx
  16. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    And for once I won't give you a hard time about your unnecessary guilt feelings;) I can hardly do that in view of my own post :eek: Along with the feelings of grief I can only hope that the guilt gets to a manageable level. Here's hoping anyway.

    Love to you Saffie

    Lyn T XX
  17. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    Me too Lyn. xxxxx
  18. overwhelmed1

    overwhelmed1 Registered User

    Dec 7, 2013
    I agree, once dementia enters your life in the form of yourself or your loved one, life is never the same again xx I just think you have to think about what he would have said when he was younger and well...he would have wanted you to do what you have done.
  19. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Well done Andrea for your honest and thoughtful post. I have to agree with you that carers and their lives are too often seen as of secondary importance (even by carers themselves). As a parent the worst thing for me would be for my daughter to wreck her life or that of her children if I need care.

    Guilt has no place in this equation. We all tend to feel we should be doing more or that someone else is doing more than we are. We wouldn't feel guilty if a loved one got any other illness and needed treatment or care that we couldn't provide.
  20. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    #20 CollegeGirl, Aug 22, 2015
    Last edited: Aug 22, 2015
    If only my dad could see that he is just as important as my mam. He has told me often that he is not important. However much I try to explain to him that he is - if nothing else, he's important to me - he just won't or can't see it :(. I'm afraid I've given up trying to persuade him, now. I don't believe he'll ever change and that makes me so sad, while at the same time admiring him for his determination. But I feel that I'm losing two parents to Alzheimers, and that's something I find difficult to cope with. In fact, to my shame, it's made me withdraw a bit. Self preservation.

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