When’s the right time to say goodbye?

Discussion in 'After dementia — dealing with loss' started by Tomcat, Feb 11, 2018.

  1. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    My Mums has had dementia for over eleven years but has only been in a care homes for past 3 years. I have been visiting my mum religiously 6 days a week since my mum has been in care. I also have a sister that visits my mum daily and two brothers and two sisters who visit once a week.
    The home recently has change management and staff and standards of care have drastically fallen. Although my mum does not make sense when she talks she still tries and enjoys conversation. She cannot walk and is Incontinent. When visiting my mum I often find my mum sitting in urine and being given horrendous food to eat. There is also lack of interaction and now my mum is found sleeping a lot. I have raised these issues with staff and management but have been made to feel I am being nuisance. I feel when the family are not around the staff hardly acknowledgement my mum the and dignity shown is lacking. Although my mum can’t physically tell us, I can definitely tell by my mums mood and the expression in her face when she’s unhappy or distressed.

    I have spoken to my family about this and although they are fully aware of the flaws at the home none of them seem bothered enough to do something about it. I have reported the home to CQC and social services but after an inspection the homes have come out it with clean report due to a massive cover up. I personally feel very let down by system and nothing I seem to say or do changes a thing. I would like to remove my mum from the home but my family are resisting this due to location and they are worried if they move mum to another home we may have the same problems.

    After finding my visits becoming increasingly harder and harder to go to and the feeling or being absolutely helpless on Friday I made the heart wrenching decision to say my goodbyes to my beautiful mum, as I no longer have the strength to watch my mum suffer and for her to have the last bit of dignity stripped way. Although my mum is physically there I lost my mum along time ago and luckily for mum she doesn’t know who I am and still will have plenty of family members visiting her. My heart physically hurts and the thought of never seeing her again has made making this the hardest decision I have to make in my life. I feel I am letting my mum down but physically and emotionally I just can’t continue to go. Does this make me a bad person?
     
  2. margherita

    margherita Registered User

    May 30, 2017
    2,077
    Female
    Italy, Milan and Acqui Terme
    Never say never again.
    One day at a time. Make your decisions day by day.
    Currently you need a period of respite from those painful visits to your mum.
    One day you might change your mind..or might not. Who knows?
     
  3. marmarlade

    marmarlade Registered User

    Jan 26, 2015
    165
    my hubby died 11 months ago,the first care home was just like you say it didnt care ,people were left to sit in wet clothes ,food all over them as they really couldnt feed them selves.I went every day and like you complained to the manager,nothing done,I complained so many times with no effect,The medication was given any how and one night we had a call he was found laying in the corridor, sent to hospital drugs over used. We then asked to move him and as I wasnt really wanted there as I could see what went on, Hubby moved to another home .and it was the best move we ever made,,they changed his medication and we got back some of our dad/husband,sadly he had lots of chest infections and things went down hill, ,he then rolled off the bed and broke his hip.he was looked after so well ,but the Doctor could do nothing with the hip as he was to frail.so I made the disision to stop all medication and keep him comfy .I to felt so quilty for doing this,but he died peacefully and in no pain, you must do whats right for you,as I couldnt watch them changing him and him crying out because of the pain in his hip,just remember you did what was right for you ,take care
     
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    2,937
    Maidstone.Kent
    #4 love.dad.but.., Feb 11, 2018
    Last edited: Feb 11, 2018
    I am so sorry to read of your anguish for your dear mum and her care. I understand why you feel as you do...I always felt for my dad that if he became bed bound and unable to speak or convey in any way even with his incoherent dementia I would need to be even more vigilant for him than I already was. There is a basic lack of care if your mum is always found urine soaked...the very odd occasion when you arrive can happen...sleeping a lot is unfortunately part of the illness as the pwd declines. The food should be appealing and nutritious however some homes cut costs in this area.From my experience often a care home management's reaction to relatives is to go into defensive mode. Your mum should have a care plan which you should be able to look at and review regularly with a senior member of staff when you can see what they have recorded in terms of pad changes food and fluid intake if she is not eating well etc and you can discuss your concerns. Care staff are often overstretched without sadly time to interact other than meal times or personal care...this is wrong but unfortunately seems common. If thete an activity co ordinator at the home...they should privide activities or interaction for all residents whether group or individual whether mobile or bed bound.For some homes I think it is quite easy to fool even an unannounced CQC visit by suddenly drafting more staff and behaving differently. I understand that you feel you want to withdraw...it would be a shame because in a good home you would see how different your mum's care your visits and dealings with management could be. I believe from your post tgat yoir mum may be LA funded and I dont have any experience of escalating your concerns but if your mum is self funding...look for another home...if you feel you have the energy. Take a little time out so you feel a little recharged with the situation.
     
  5. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    Thank you for


    Thank you for your kind words. Everyone keeps telling me that. For the past few days I have turned off all communication as I just need time and I am also finding it hard to talk to family as they make me feel guilty on not wanting to go. I have been making this decision over and over in my head for a long time, so I feel I would be going backwards and it will just mean I will go through this pattern on suffering. I feel I just need to be strong.

     
  6. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    Thanks for replying. I know that the care plan is appropriate but the problem we have is the home are not following the care plan and when you question anything to do with my Mums care they lie. If they are covering up when the CQC are visiting then they will not hesitate to lie to family. I want nothing more than to move my mum but the rest of my family don’t want to. I have tried everything I can to escalate the matter to ALL appropriate authorities but have got know where with it, that’s why I made this decision not to go back. My friend whose mum also had dementia had the same problem happened with her Mums care home and she said that if you are constantly flagging up problems, does anything change? My answer was NO!
     
  7. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    2,937
    Maidstone.Kent
    I understand your frustration and reading your post again I see that your sister is visiting daily and your other siblings every week so your mum is also being monitored well by your siblings. You have also been visiting 6 days a week and most probably this has taken a toll on you especially if you feel you are banging your head against a brick wall with trying to get your siblings to see your mum's care by the home falling short as you do. It is a completely individual decision on siblings who do or do not visit especially if it upsets you and none of your siblings should make you feel otherwise. If you feel your siblings are not understanding or listening to you then perhaps a note to your siblings setting out your post on TP may help with you stepping away so that they are made fully and understand your reasons even if they choose not to accept them. I have siblings...many many posts on previous TP threads about siblings!
     
  8. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    I don’t know if it’s better shouldering all the responsibility myself or dealing with the dynamics of all your siblings thinking they know what’s best. I found more compassion from a chat room forum than from my family. Thank you for responding.
     
  9. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    It’s now been a just over a week now since I last saw my mum and I know that doesn’t sound a lot for some people but I visited my everyday since was in the care home. I have decided not to go back but I feel guilty as I thought it might have had more of an effect on me. It seems the more the days go on the more I am feeling detached from it all. Maybe it’s the lull before the storm and I it will be hitting hard the longer I stay away, or maybe it’s because I know she’s down the road from where I live. Who knows. I will just take it day by time but I get shrug off this guilty feeling.
     
  10. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,164
    Female
    Kent
    Hello, we haven’t met before, but I have just read your thread. I think you have hit the nail in the head, with your last post...’I will take it day by day’. I’m going through a rough patch myself at the moment and, when I get a day out, it makes me feel detached from the situation...and it is GOOD! As @margherita, has said above, never say never. She is a wise lady. Take the time you need and what you want to do will become clearer.
    I see you are not sleeping so well? That was a very early post...I hope that improves for you.
     
  11. margherita

    margherita Registered User

    May 30, 2017
    2,077
    Female
    Italy, Milan and Acqui Terme
    Maybe, when you feel detached enough, you will be able to visit your mum again.
    A sentence is ringing in my mind " love with detachment ". It is often uttered in the support groups for those people who have a relative addict to alcohol or drug.
    I means we can love without destroying the peace of our mind when there is nothing we can do to help them.
     
  12. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    Hi there,
    Thank you for your post. I have never slept well. I have spina bifita and have suffered chronic back pain for the past 4 years that has affected my sleeping, so the post is not out of context because I haven’t slept it’s seems to be when I am thinking the clearest. I don’t think I will be going back as my Mums dementia is very advanced now, so I know any time span away from her means I have lost more her. Also it took every bit of strength to walk away and I don’t think I can do that again.
     
  13. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    I just wanted to say thank you for your post. Maybe detaching gives us time to heal but I haven’t got the strength to say goodbye to mum for a second time. Its to hard to do.
     
  14. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    171
    I feel you tomcat..we experienced this with the care home my mum was in..poor care..poor hygiene poor everthing!!..constandly complaining to manager who was total waste off space..i ended up bringing cqc in and then also informed pubic health.!!..we then said enough is enough..viewed new home and got social worker involved..thankfully social worker was amazing and mum was out off that home within a week she been in new home for 3 years and its amazing..we believe if mum was left in that other she would off been dead!!!...but all my sibling was on board..so i really feel for you ..thoughts and hugs to you..xxxxx
     
  15. Tomcat

    Tomcat Registered User

    Mar 20, 2016
    24
    That’s really good to hear that your Mums in a good home. If only may case was that easy. For one I am dealing with a nightmare sister that causes problem in the two homes my mum has been in with her constant demands and two that the rest of my family only visit once over the weekend and the staff know when the visits are so make sure mum is looking presentable for there visits. My back is against the wall and there’s nothing I can do. Can I ask if you found CQC of any help?
     
  16. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    171
    Hi ..its most be horrendous when your siblings arent supporting you.x eeerrrmm not sure things i hightlighed were addressed..but then manager always washed over things..but it did highlight that the manager actually didnt have a licence to manager.. ( this was in local paper a few months after mum left)..she recieved a hefty fine and lost job ( ps the home belonged to her mother) .that made me smile!!!.xso yes but it was a long process!!!..i found pubic health brillant..they went in 2 days after i phoned.xx
     

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