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Why do I feel like this?

Discussion in 'I care for a person with dementia' started by katy66, May 15, 2018.

  1. katy66

    katy66 Registered User

    Jun 14, 2015
    25
    The Fens
    I haven't posted for a while. My mother who has vascular dementia moved into a care home in October.after 4 years of living with me and my partner.
    I couldn't give her the support and care that she needed. So following advice from the professional's I agreed to move her into care.
    I spent a lot of time choosing the care home and was pleasantly surprised when mum settled in very quickly. Mum always seems happy. It is not perfect but I think I may have unrealistic expectations. Most of the staff are kind and thoughtful. Mum has a group of friends. I visit every couple of days and carry out activities with mum and her friends. We have a great time. Mum doesn't always know who I am but she is always pleased to see me.
    All sounds pretty good so why do I feel so bad? I feel sad, angry, useless and guilty.
    I cry for no apparent reason.

    Is this some sort of grieving or am I going bonkers?
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    55,744
    Female
    Dundee
    Hi @katy66

    I'm glad your mother has settled well into her new setting. I don't think that there's any doubt that you're grieving. Like any kind of grief it will take time and there will be ups and downs along the way. You're certainly not bonkers!

    Wishing you strength.
     
  3. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    314
    Chard, Somerset
    You sound like you're grieving. My mum died recently and despite the feelings of it 'being for the best' (a physical illness took her off suddenly so no long decline) and despite suddenly having my life back, I still feel a bit rootless, useless and confused. If you are bonkers then that makes two of us and, I suspect, quite a lot of the people on TP. Your mum sounds to be happy and content so I am sure you will feel better after a bit and begin to enjoy having some freedom.
    I do know what you mean, though. Suddenly from being a part of mum's busy life - clubs, day care, hospitals, doctors, hairdressers, etc. I am an outcast with nothing to do and no purpose in life.
    That's not a cry from the heart that I am about to top myself or do anything silly (!), I hope I am just putting into words what we must all feel when circumstances change suddenly.
     
  4. katy66

    katy66 Registered User

    Jun 14, 2015
    25
    The Fens
    Thank you so much for the kind and helpful words
    I hope you are right and that I will learn to cope with this
     
  5. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    68
    Female
    Lincoln, UK
    Hi Katy
    I felt just like you when mum went into care 2 years ago. Firstly you are not going bonkers although I know it may feel that way. Like you, I couldn't give mum the care she needed and despite knowing she needed nursing input I too experienced dreadful guilt and cried endlessly. The guilt still creeps back even though mum has deteriorated and needs even more care now. Like your mum she settled immediately and she remains happy in her own way. How I miss the "old" mum - our chats, the fun we had. It's like I have a different mum now. I love her just as much, if not more, and I hate this horrid disease which is taking her further away from me. Perhaps, as you were your mum's carer like me, you feel a huge gap? It has taken me a long time to realise I can be a daughter when I visit and that I've handed the hands-on care to others. On my down days I can soon start beating myself up with guilt and the anger that she has this (mixed dementia) resurfaces. I just relate to all you say. You must take good care of yourself. I allow myself occasional treats - a new top, book or
    CD. I know I am going to have bad days but instead of dwelling on it I make myself carry on knowing it will pass. Please keep us posted? Sending hugs.
     
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    3,887
    USA
    No, not bonkers!

    A move to a care home is a change and a big adjustment, not just for your mum, but also for you. Stop and consider how much your routine has changed. It takes time getting used to such a different routine, first of all.

    Second of all, I think so many of us caring for someone with dementia experience this sort of grief. It is sometimes referred to as anticipatory or ambiguous grief. It can come out of nowhere, or be exacerbated by a change, or ebb and flow, or all of the above!

    But I doubt you are bonkers, or at least, not any more so than the rest of us!!
     
  7. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    68
    Female
    Lincoln, UK
    Hi Fullticket
    Just to send my deepest sympathy on your mum's passing. Although she is now at peace, this must be a dreadfully sad time for you. Although we've not been in touch before I hope you won't mind me sending you hugs. Please take care of yourself. x
     
  8. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    234
    You most certainly are not going bonkers! One assumes that if your loved one is happy in a Care Home, being well looked after and seemingly settled into a new 'home', that this will alleviate troublesome feelings which hitherto were commonplace as a carer at home. The positive aspect of being 'settled' and 'happy' can only be to the good. That is what one wishes for above all else in terms of 'best interests' when residential care becomes essential.

    "Why do I feel so bad?". Well, despite the very pleasing outcome for your mother, which we must acknowledge as a huge plus, what remains is the fact that you are no longer that direct contact as carer because your mother has moved away from you and your home. The care is now in the hands of others, that 'relationship' has changed and there is that sense of detachment or perhaps apprehension over a widening gap between yourself and your mother, simply due to the fact that she is no longer with you as before. This is compounded by the fact that the dementia affects recognition and memory and if you are not always recognized when visiting your mother, adds to that sense of 'loss'. What was once a true connection, now seems more remote. So, what do we do? We look to the facts which remain facts and which are in our favour. You remain the daughter, for ever. You know your mother and the care you gave her when she was at home, BETTER THAN ANYONE ELSE . This is so important, because it is an undeniable fact. A truth. You know about every facet of that care and all about your own journey along that pathway. Armed with all of that, you are visiting on a regular basis and joining in with activities, as you most certainly should. This means you can 'guide' those who are now caring in all you know about your mother and I repeat that it is YOU and YOU alone who wave that all so important flag. By all means, feel sad or angry when those feelings well up without warning, but NEVER feel "useless and guilty".

    You now participate in your mother's care in a different way, but your participation is vital and in accord with those who now care on a daily basis. That very,very special daughter-mother relationship is unique to you and your mother, made all the more special because you have journeyed through the dementia/care process with all the inherent feelings which that journey evokes. And you must continue with it, as you clearly demonstrate here, you are so doing.

    YOU know your mother better than anyone else, that alone must be cherished and by still 'connecting', even when dementia clouds recognition, that connection is both precious and essential.

    With warmest good wishes.
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    321
    I so understand. With you all the way While my OH was at home and although frankly it became hell, I was obeying strong imperatives all the time and that became a life. Purpose was kind of there, right in front of me 24/7. Now he is in a nursing home and I visit every day and find a purpose in being useful to the staff and residents generally. Purpose and meaning in life is always, always a tough one. I am so sorry about your beloved mum. Please keep talkn to us and thank you for posting.
     
  10. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    314
    Chard, Somerset
    Thank you Jezzer and Kindred for the kind thoughts. This morning I am celebrating finding yet more tissues (there is a discussion somewhere on TP about tissue saving, folding, hiding and the odd hiding and putting places...). Looking for a photo for the daughter of one of my mum's friends I opened the cupboard beside the fireplace, which is behind the television and in a room mum did not frequent. I have found a stash of coloured napkins, tissues and kitchen towel. Bless her, but where next? Up the chimney?
     
  11. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    68
    Female
    Lincoln, UK
    Hi there! Good you can find a little humour amongst this all! What is it about tissues I wonder?! Keep your chin up and remember, you are amongst friends here. x
     
  12. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    2,710
    south-east London
    Hi @katy66 - what you are feeling is totally normal and acceptable.

    I have moments like this myself - my husband is in hospital and, now that his needs have become more than I can handle in order to meet his best interests, we are in the process of preparing for him to go into a nursing home.

    I am finding it a hard step to take after looking after him for the past six years and of course you will have those same feelings after looking after your mum for as long as you did. There is always that hankering to turn the clock back, for things to be as they once were - and it is hard to adapt to the changes and seeing our loved ones in an alien environment.

    Take heart from the fact that your mum is happy. Although things will never be as they once were, the best we can do is to make sure they are as good as they can be. You are doing so well for your mum.

    Be kind to yourself and allow those tears, as others have said, it is a form of grieving.
     
  13. father ted

    father ted Registered User

    Aug 16, 2010
    572
    London
    Just read your post katy66,
    You will see from the responses that this is a common feeling.
    There are a lot of similarities tween your situation and mine. My Mum lived with me for 8 years as opposed to your 4,until I could no longer cope. I visited around 14 care homes before I settled on one and like your Mum mine has settled happily although we have had a bit of a blip recently.

    It is hard to adapt to a new situation and you will. I am kept busy still caring for my daughter but we both visit Mum regularly, a need for both me and my daughter and Mum is always pleased to see us. The hard part is relinquishing the care to someone, anyone else. In a small way it's like leaving your child the first day of school, a person you love very much and who is vulnerable being abandoned by the only person they trust. A couple of phrases you used resonated with me 'it's not perfect' and 'most of the staff are kind and thoughtful'. Because I think what we want is for it all to be perfect and for everyone to be kind and thoughtful and the biggest fear when someone goes into care is what goes on when you are not there, I know it is mine. But the evidence that your Mum is happy and made friends should put your mind at rest. My Mum too seems happy enough with the place but not always happy with me?
     
  14. katy66

    katy66 Registered User

    Jun 14, 2015
    25
    The Fens
    Thank you all so much for the replies.
    You have made so many valid points.
    One of my problems is that I am not in control. It is hard to trust anyone with someone as special and vulnerable as my mum.
    I do worry and probably overreact.
    I go every couple of days and gather mum and her friends. We do various activities.
    I have done flower arrangements. Cake decorating (messy but fun) colouring, jigsaws and the favourite of all singing along to pub songs CD with crisps and lemonade.
    When I went the other day I found mum in her wheelchair at the end of the corridor, head on wall rail, asleep. I was horrified! It turned out that one of her friends had wheeled her there and then forgotten her. I was told it was 30 minutes at the most.

    I do miss my mum. She was a good mum and we were friends.
    We spent alot of time together.

    Thank you.
     
  15. imsoblue

    imsoblue Registered User

    Feb 19, 2018
    194
    Tissues!!?? I am having a rash of paper towels everywhere in my house from OH. I even asked him to stop and called him by my mother's name (she always had tissues everywhere!) And there's teeny pieces of them strewn about. I'm glad I read others do this.
     
  16. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    3,887
    USA
    My mother has the tissue obsession and they are everywhere, except being used for their intended function! She also has to have at least three open boxes of them at all times-and her room is small.

    My aunt, who had recently been assessed with mild cognitive impairment (but I think she has full blown dementia) has the paper towel/napkin obsession. Piles and piles of them all over her apartment. It makes me nuts!

    My mother was not a great one, she was never my friend, we were never close, and never had a relationship, but she is still my mother and it was still incredibly hard to take her to the care home and then leave. I cannot imagine what it must be like, when there is a warm and loving history. Please give yourself time to adjust and try to be kind and understanding with yourself.

    Dementia has so much to answer for, and destroys so much--not just for those with the diagnosis, but those around them as well.
     
  17. imsoblue

    imsoblue Registered User

    Feb 19, 2018
    194
    Well said @Amy in the US . I am trying so hard not to let the destruction take over my family. TP helps a great deal in that respect.
     
  18. kindred

    kindred Registered User

    Apr 8, 2018
    321
    Oh yes, it does, I so agree and I so honour that you are trying so hard not to let the destruction take over your family. It is such a strong and compelling focus that it will draw all into it like an energy black hole. Have to keep a proportion of life away from it and what proportion is what changes as it goes along, if you see what I mean. Thank you so much for posting.
     
  19. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    68
    Female
    Lincoln, UK
    @Amy in the US
    Well Amy in the US, I've not heard it put like that before but my goodness that is exactly what it can do and we don't always see it. If possible we need to take a step back from it as and when we can, for our own sakes. Thank You for your wise words.
     
  20. Paperweight

    Paperweight Registered User

    May 8, 2018
    17
    Hi ka
    hi katy I understand where your coming from ,I tried restpite with my oh it didn't go very well as everyone on here knows .but I got a lot of comfort from all the posts l got back .oh goes to day care at a local church and he has settled there it took a while and I feel ok leaving him there.but I visited the ch where I took him to see what upset him.think it was because I was not there and they didn't know how to calm him like I can and I just worry .i know they would look after him but not like I would .it takes a lot of patience has we all know and they have more then one too care for .i don't deny I would have loved my weekend away .i don't think you are over reacting it is so hard .
     

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