1. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    When will I stop crying for the mum I had, and still have, but she's not there. I can kiss her, touch her hand, cuddle her, but she's not really there.

    A week ago she had to be moved from residential dementia home to a nursing dementia home, and the difference in the dementia levels is very clear to see. She only has two residents who I would say are at the same level as mum, the other residents seem far worse.

    My mum is not settling and says no-one talks to her, that she is lonely and frightened. She calls us terrible things. The last few days she has been holding her hands in the air asking the Lord to come and take her, or give me a knife and I will kill myself. Does she really want to die? Is she really so unhappy? How do I know what she is feeling.

    My sister took her to the GP yesterday and back to her house for lunch. On returning to the nursing home my mom (who is 90) started to run off down the drive and wanting to get home! She became nasty, sulking and shrugged off any attempts by my sister to comfort her.

    Last night I cried for hours non stop, I could not stop the floodgates. I feel so guilty that we have to leave her there to the point of despairing over what we have done to her.

    Is it wise to stay away for a while? but then my heart aches thinking if she is sitting there alone. I know the carers talk to her but they are busy people looking after others too.

    Why oh why do I feel so bad.

    My sister stopped her car last week and just sat and screamed as she felt like she was cracking up.

    Sorry for going on, but does anyone else feel like we do? We are empty and lost.
  2. Beate

    Beate Registered User

    May 21, 2014
    In another post you said she is fine when you are not at home and does interact, that the home is lovely and that she is a master at emotional blackmail. She has only been there a week. She will settle. And if she doesn't, she won't anywhere else either. For your own good, perhaps give yourself some space right now and certainly don't take her back to your house for lunch! Wanting to go home is common in people with dementia, and she was probably sundowning but there is no real point in taking her to a place that is not her home anymore.

    Stop the crying and the guilt trip, you've done all you can for her and she is safe and well-looked after.

    She would want to go home wherever she is.
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Yes you are so right. We are on a guilt trip and probably will always be. I think we are the problem. I have just read a post from a lady in a similar position to us, so it must be a common problem wanting to die/kill themselves.

    Thank you for reading my post and replying.
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    I do understand what you feel.
    I think I would continue to make short visits to Mum but for now I wouldn't take her out as returning her to the CH gives her,and you, huge stress. Pop in, as you might have done at home , with a cream cake or some bubble bath, a book, dvd.hand cream, photo...whatever little trinket she may play with. Have a cup of coffee with her or paint her nails but then leave quickly and without fuss, ideally as she goes into the dining hall for lunch or tea say I'm nipping to the shops, Post office or somewhere neutral". Don't say "I'm going home", tell her you'll be back on Saurday afternoon( for example) and go!.
    If she needs the GP get a home visit. If she has to go to the hairdressers, take her back in time to do the meal departure again.

    If she asks to die....as my Mum did, tell her it''s not her time yet, and when it is her time, the Lord will come for her. It's not her place to tell him when it's time" I found that Mum could understand it if I said the Lord would call her home and that she couldn't pick and choose her time.

    It's horrible to be called evil, cruel, unloving....but she does love you, she just doen't know how to deal with the hatred she has for her illness.
    Chin up and keep strong. Love Maureen.
  5. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Hi Patricia Alice . This horrible disease has 2 sets of victims . Our mums and us . My poor mum who has vascular dementia has been deteriorating for a while now . Last year she was in hospital and I can quite honestly say I spent 90 % of my time alone crying for the mum I had. I was on holiday for 2 weeks from work and would take her to her day centre and would cry the whole day waiting on her coming back , sitting by the window . However , I did give myself a stern talking to and this year is much better . Although she has deteriorated and now needs care provided by a personal assistant and myself I don't waste what precious time I have left with her crying . I have no control over this disease but it is not going to rob me of any personal time I have with my mum. I take her out all the time when I'm off for a run in the car which she loves , stopping off for lunch /coffee. I shower her and enjoy doing her hair and painting her nails . We sit on the couch together watching old movies and listening to music ( she loves all kinds of music even rap!). She is sometimes not so nice to me but I know it's not her but the disease , so I do my best not to let it get to me. So please don't waste any precious minutes crying and getting upset over things you can't control , but take control of the things that can make a difference . Make a new normal for your mum, sister and yourself , it's all we can do. I wish you well .

    Sent from my iPhone using Talking Point
  6. starryuk

    starryuk Registered User

    Nov 8, 2012
    My mum has died now, but I am going to remember these words to apply to other things in my own life. Thank you Louby.

    Patricia, I am sorry you are feeling so upset and grieving for the mum you had. I hope you can begin to accept your 'now' mum and enjoy some precious moments with her. As Louby says, it's all we can do.
  7. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Many thanks for your very kind comments Starryuk . Best wishes. Lou

    Sent from my iPhone using Talking Point
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    There is one other aspect, that I have hesitated in mentioning because I dont want to upset anyone or sound accusing nor do I want to increase anyones guilt, but I think it is important to know.

    People with dementia are very good at picking up emotion and body language.
    If I visit mum when something has happened to upset me she will always pick up on it and become distressed herself. So I have to make sure I go in with a bright smile and an "everything is fine" attitude. Its not always easy, but I cant let her see that I am upset
  9. Casbow

    Casbow Registered User

    Sep 3, 2013
    Crying all the time

    We had a very similar experience with my mum. She was in a care home for 3 years and then moved to a nursing home for one and a half years before she died. Because of the dementia she became nastier as time went on. In between the nastiness she would hug us and be lovely when we visited. It was very difficult and often me and my sister (visiting separately) would sit in the car park thinking what will mum be like today. The staff were wonderful and mum would put her arms up to them for a cuddle. So although it was very heart wrenching for us I believe my mum was well looked after and on good days we could see that she was doing ok considering the circumstances. I could write a book about my mum. There is so much to tell. But try to see that you are doing your best and I believe your mum will have happy contented times as well as bad ones. That is the nature of this terrible illness. Good luck and try to be happy with her care. x

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