1. Rach R

    Rach R Registered User

    Mar 23, 2012
    hi, I don't feel I can say this out loud to anyone I know but I feel so confused. I visit my mum in the care home and I know she still knows me and always looks very pleased to see me. We have a chat and I just try to make sure I'm saying yes and no in the right places dependent on how she looks when she's speaking, as she often speaks in gobble d goob!! I love my mum very much but when I look around at other people who are in a far worse position than mum - I can't help but think and dare I say it - hope she passes away before she gets to that point. I can see her progressively getting worse as time goes on and it makes me feel so unbelievable sad and scared about her dying but at the same time I don't want her to get so bad she doesn't know me. Am I so wrong to 'hope' she doesn't get to that point?

    I try and go to see her every week and feel really guilty that it is only once a week but I work full time and have small children that need taking here there and everywhere! I wish I could go more as I feel I should do more for her...
  2. Soobee

    Soobee Registered User

    Aug 22, 2009
    Hello Rach R.

    It is horrible and the guilt monster is always there and no matter what you do, the guilt monster will tell you it is never enough. But bear in mind, the guilt monster won't always be with you - especially if you keep saying to yourself "I'm doing what I can".

    We all hope that our loved ones won't reach the next stage...some do, some don't. But it's only natural not to want people to suffer. x
  3. ferniegirl

    ferniegirl Registered User

    May 10, 2015
    Surrey, UK
    Hello Rach, no you are not 'wrong' in wanting your mum to pass away. It's a horrible disease and no-one wants to see their loved-one in that state. I pray regularly for my mum to pass away and I don't understand why she is still with us, she is so frail and ill. My fear is that this will go on for many more years; torture for her and for us to watch. If she died tomorrow I would be so upset but so relieved.

    Your priority is your little ones and your own health so try not to feel guilty. You are doing all you can.

  4. CraftyJ

    CraftyJ Registered User

    Jan 31, 2014

    I could have written what you have just done.... i understand exactly what you mean any how you feel and guess we aren't alone either!

    Mum went into care 2.5 years ago and has had Alz for 5 years. My dad was also in same care home with her for a year (for other reasons) and he passed away 1.5 years ago. Mum doesnt have a clue.... and in a way thats a blessing. ignorance is bliss?

    She is in her own world.. lost most of her speech, has to have everything done for her and i visited every 4 weeks (doesn't live near) and i suffer terribly with stress after each visit.. just heartbreaking to watch.. she isn't the mum Ive known and loved. I can talk to her but don't know what gets through and she cant talk back.

    Like you, myself and my family wish this would end, without her suffering. We are all in limbo.. grieving but she is still alive. And of course feel guilty for having these feelings, but its encouraging none of us are alone in these thoughts, as Ive read. its a long and slow death over which none of us having control and cant make our loved ones better.

    What hurts is that if an animal is suffering, vets don't hesitate to put them down. no questions asked. But with humans, we have to keep them alive on drugs, pay a fortune to keep them safe and looked after and all the family suffer. I know mum would hate to live in this way and would be mortified at how her life is now.

    So don't feel guilty.. .you aren't alone. Too many of us on this same journey.
  5. Rosnpton

    Rosnpton Registered User

    Mar 19, 2017
    Hi as the others have already said,a lot of us feel the same.
    I love mum,but currently don't like her/what she has become.
    She has little quality of life but is high functioning altzheimers patient- can not do any personnel care,feed herself,dress etc etc, but on a good day passes the capacity test.
    She remembers enough to know she used to live somewhere else,and regularly rebels against being in the home. Her brain,we think,is stuck in about 2010 ( we guess this as she thinks youngest grand child in first year at uni and she graduated 2014 for a 4yr course),people she thinks still alive etc.
    Unfortunatly,she is very aggressive and violent now,and her latest thing is to tip hot drinks over-luckily went on her,not someone else. After sun night to mon lunch in a&e she has been given lidded adult sippy cup and can only have a hot drink if someone is with her.
    I don't want her to get worse,to have no control at all
  6. CraftyJ

    CraftyJ Registered User

    Jan 31, 2014
    My mum was like that too, taking it all out on me or my dad, but since being in the care home, I'm sure she is on anti-psychotic medications and she is very calm. Such a difference but certainly not comotosed... always smiling or laughing, hardly any anger and still a very strong light in her eyes. She cant speak much but recognises me, a small blessing. The day she doesnt, it will break my heart.

    Its so weird how many of us have the same stories, and all feel the same.

    Do any of you have any outside support being a family member of someone suffering with dementia or alzheimers?
  7. Jinx

    Jinx Registered User

    Mar 13, 2014
    Rach, it's not inevitable that your Mum will not know you at some time in the future. My husband knew me and knew my name right till the end. Don't try and second-guess what might be round the corner just try and make the most of the time you have with her still in your life. I know how hard it is. xx
  8. Agzy

    Agzy Registered User

    Nov 16, 2016
    Moreton, Wirral. UK.
    My OH has it but only at mid stages as yet but both know what is coming and she is praying that a heart attack takes her first as she is terrified of future stages and I am torn as to whether or not I want the same. I know I don't want the latter stages though. Strength and love is all we can offer.
  9. Rach R

    Rach R Registered User

    Mar 23, 2012
    Thank you for your replies and it helps to know I'm not the only one to feel this way :(
  10. Rosnpton

    Rosnpton Registered User

    Mar 19, 2017
    It is sad how many of us are getting the same short stick,isn't it?
    I don't have any outside support- brother lives a distance and doesn't drive. He comes one sat in three when I'm at work.
    Today was terrible.
    I'd gone to ch as the falls nurse in May said mum no longer safe using a zimma,and had been using a borrowed chair. I was told that someone was going today to advise us which chair etc suitable.
    Boy were we wrong
    Miserable cow
    Turned up 40 mins late.
    Said just needed to see how mum got from wheelchair (she had been sitting in one) to armchair in her room.
    Carer took her and explained mum can't use zimma safely and needs help. She positioned mum to assist her from wheelchair to armchair. This was all of 6 small shuffling steps and about 2 mins.
    The falls person said,as she could do that,doesn't need a chair.cant be issued one.
    Wouldn't listen that a colleague from her department was the one who said not to let mum use frame any more
    She said mum wasn't to 'be allowed to sit in a wheelchair.she is only to use it to help her get to another room".
    She didn't accept mum has history of falls-both real and staged
    Cannot stand etc
    I pointed out we had expected to have to pay.
    Long story short- mum latched on to the phrase'doesnt need chair full time'
    She now thinks this means she can go home as 'they' have said she can walk ok and will therefore be able to manage at home!
    She ranted at me/ carers/ me again
    Wanted me to 'get dad now'(meaning her husband)
    When I said he would be at day care so I couldn't get him I was 'a self centred interfering smug cow'
    I'm now expecting something to kick off in the next day or two
    She will bloody remember being told doesn't need a chair (meaning not free from falls service as not required all the time every day)

    The only light at the end of the tunnel is I'm working Saturday so my brother will be the one visiting
    I really really hope he gets some of the same **** chucked his way


  11. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    Rach my Mum has been in care for a year next month.
    For the first 7 months, after a period of settling in, she was doing extremely well.
    Much better than being at home, and also her and Dad reached the point with Mums Alz, that going into care was best for the both of them.
    Mum knows who we all are ( apart from her youngest grandchildren 3 & 6) but doesn't always know the connection, daughter, son, husband etc. It depends if shes having a good day or bad day.
    Prior to going in care I was her neighbour or the lady that looked after her.

    Then 3 months ago, Mum had 2 UTI's in a row, and shes had a massive decline.
    Can no longer shower, or dress without assistance at all, sometimes needs assistance with eating, and always needs prompting to drink. Its affected her speech also, getting very mixed up with words and often gobbeldy gook.
    Due to the UTI's bringing on agitation, anger, and anxiety, they have put her on a very low dose of Lorazepam, which has helped immensely.
    I'm saddened though at Mum's decline, and its the first time I've really thought that I hope also that Mum passes away before she gets to the stage of some of the others, although I know probably inevitable.

    Mum and I have always been close, and I do get annoyed and upset at how little I can visit Mum on my own compared to my sister & brother.
    My parents lived behind me, so I now have to take Dad when visiting Mum as he needs supervision with Mum ( He has MCI, doesnt understand Alz at all) or lie to him, to try and visit Mum on my own. I wish I could take Mum out more too, but Dad is a hindrance. Sad but true... ( my Dad is a whole other issue)
    I work part time, care for my husband with health issues, and my youngest is 14.
    A year later and it is still a constant juggling act.
    The guilt is getting to me more now, than at the beginning of Mum going into care, but we are all doing our best in trying circumstances.
  12. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Rach I know just what you are going through here and yes I just wish could get the phone call to say she has gone during the night Please take care of yourself we are all here for you.
  13. Peppie

    Peppie Registered User

    Jul 9, 2017
    I think a lot of people know just how you feel my dad had cancer and battled it and got the all clear then he got dementia I would rather have lost him when he was ill with cancer than to lose him to this horrible disease I see a bit of my lovely clever caring dad disappear every day and it's heartbreaking don't be hard on yourself.
  14. Jessie107

    Jessie107 Registered User

    Aug 11, 2016
    This is why I believe in assisted suicide, this is such a torturous illness to witness, and for the person suffering.
    If I get it I will be off to Switzerland.
  15. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Agreed, Jessie. What's considered merciful and right with our beloved pets, is considered wrong for our beloved family members...doesn't make sense.
    My husband has lost his pride, his dignity, his freedom, his pleasures and his ability to love and know that he is loved. I believe that somewhere, deep down, he is tragically aware, but can't even express or understand his bewilderment and pain, both physical and mental. I call that torture, and high minded people have opinions about torture.

    So why? In time, things will change, and people will look back, horror struck to think our generation had to suffer like this....
  16. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    I too agree that it is at unbearable to see my mum suffer with this awful disease. How do I reply to her when each time I visit her in her care home she says " I want to go now, I don't want to go on living like this, my time has come now, please please let me go" what do I say to her?? I cannot agree with her, because I cannot do anything, and if I get upset and say " sorry mum I can't let you go" she gets so upset and angry with me.
    I just wish that she goes peacefully soon with the family all with her, but I know that may not happen. I don't want to lose my mum, but of course I am losing her daily to this dreadful illness. Life is such a b**** .

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