My mum passed away on Saturday evening

Discussion in 'After dementia — dealing with loss' started by jimbosmith, Jan 16, 2017.

  1. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    Hi all,

    My Mum passed away aged 72 on Saturday evening.

    She had Alzheimer's for almost 15 years from it's first signs, so, I like to think she did well considering.

    Mum lived with myself and my Dad up until September of last year and only went in to full time care when my father was diagnosed with terminal cancer. I was her full time carer, bar her day care and occasional respite, but the McMillan nurses recommended that while my Dad was ill my Mum should go in to temporary care.

    Unfortunately my Dad passed away in October, albeit from pneumonia, which made it a quick passing for him, which in a way was kind of a relief as that is what he would have wanted.

    My plan was to have a little respite and look at getting my Mum out of her care home and have carers come in and help.

    Unfortunately, my mum contracted a number of UTI's over this period and put on a huge amount of weight in those short months. She has always had a huge appetite and her home is full of cakes and biscuits. A lot of her weight was on her ankles and feet, which I had heard to be a sign of heart failure. The GP had tried to reassure me that this was just the way the weight was distributed but I was not convinced.

    This last week she had been extremely sleepy and on Friday was fully asleep during the day. UTI's can do this, especially for my Mum, so while I was concerned I thought I may be a little paranoid.

    I rang the home on Friday night to see how she was doing and she was up in her chair. The senior on shift had said that she hadn't had any of the meds for her uti as they had to be picked up from a neighbouring town and may not get to start the dose until Monday. On hearing this I suggested I would go and pick the meds up personally myself on Saturday so she could start them. Half an hour later I got a call back and was told she had in fact started her meds and that there was a mix up with someone else. She had seen the GP at 9:30am on the Thursday morning, which I had attended myself.

    On Saturday I decided to go down at 2pm. I walk into the home and my mum is in her chair, looking the best she has done in about a month. She has a limited memory of the past which I could tap into as being in her company for such a long period of time, she'd talk to me about this stuff as if it was the present. She was able to remember my name. Told me I was beautiful and handsome, which is something she always did.

    I went home at 4pm and thought to myself 'what a fool!, it really was her uti's etc'.

    At 7:45 I had a call from the home telling me to get there right away and that a paramedic had been called.

    I arrived at 8pm and the ambulance was outside. I walked in and was ushered to the office where I was told my mum had already passed. I was gutted as anyone would be, but also that I wasn't there by her side as I had been for the last 10 years where I had been her FT carer (this is the first point in writing this that I have cried!).

    I was told that it was quick and that she'd either had a seizure or a heart attack while she was being put in to bed. My mum had a history of seizures after trying an anti-psycotic med 2.5 years ago.

    I was introduced to the paramedics and was able to go and see my mum. She looked very peaceful and in that sense it was a relief. I had always put her to bed while back at home and would lay next to her for a few hours on my tablet, and it reminded me of those moments as she would often lay on her back with her head turned to me.

    The head honcho of the care home was called into work. Is this standard procedure? It was Saturday night so would have been at home. She came in to talk to me and they obviously have a routine for these situations.

    On my way back I went to see the paramedic who wanted to confirm my details. My biggest concern is a post mortem as my Mum would have hated this idea. The paramedic told me that he had concerns that nobody performed CPR and that the nurse who came to see my mum was very flippant 'well, by the time I'd got here, she was already dead'.

    He told me that he would raise this concern with the police and the coroner, and that was his job and it didn't matter what I or the workers at the home had to say. I did say to him that I respect his position but also that I would rather my Mum remain untouched and that if it was her time, let it be, and if there was some negligence on the part of the home, they learn from it, as none of this would be of use to my Mum.

    As I walked out of the room, the head honcho walked over to me, almost like she had been listening in, as the door had been open. 'What did they say?' she whispered to me. I bluffed her at this stage as I didn't want a scene and just that they wanted my phone number etc.

    A few minutes later I was out in the car park and on my way home to tell the rest of the family.

    At 7:30pm I was eating my dinner enjoying TV, by 8:30 I was back home from all of that ... well ...

    2 days have gone past and I've not heard a word from the care home or the Police or anybody else who has that number. OK, today is the only 'working day', but still ...

    Anyway, I decided to call the local funeral director as I had not long buried my dad and knew they had a lot of information. They did some ringing around and found out that my mum was in our local hospital under the Coroner. They hadn't been notified that they would be my Mums funeral directors etc.

    I will ring the hospital tomorrow so that I can get the paperwork moving so that I can register the death at the town hall.

    In a way it is still a shock and in some ways not. In some ways i'm all over the place and in other ways I feel fully grounded and able to deal with it. I didn't really cry on the Saturday but last night where I had a huge sobbing fit.

    I know there are various stages of grief. The 'coulda woulda shoulda' element is going through my head. Should I have got her home earlier after my dad passed? What if the home has been negligent in her care? What if they had bluffed me on her meds and she hadn't taken any of it?

    I didn't actually tell the paramedic any of this as I was in a state of shock. Should I tell the coroner? It doesn't look like she will avoid the post mortem anyway so I'm now thinking that I will. Part of me typing this feels bitter, part is thinking 'well, none of this will bring her back', so what's the point?

    Being carers yourselves, you will understand how it becomes your main reason for being in life, that has now wiped away and there is that huge emptiness. Not only losing a parent, but your life purpose. I do feel down, but this could be the initial shock rather than the start of a depressive illness.

    Financially I'm not in too much of a worrying place, but I gave up my career to look after my Mum. I have no regrets doing that and would go back to my younger self and recommend that it will be the best thing you ever do. I had been considering working as a carer in the future, but now with what has happened at the care home, it has kind of put me off.

    I have been reading a lot of posts in this section which has helped, especially yesterday. I wanted to contribute but also to see if anybody has any experience in a situation like this with a care home and a coroner. Obviously, I also just wanted to pour out a lot of what I had been experiencing as well.

    Thanks for taking the time to read this post

  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I'm so sorry to read about all you have been through. My thoughts are with you Jimbo.
  3. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Jimbo, I'm so sorry to hear this. It is of small comfort, but your Mum has been spared the sad decline of illness that can happen. She had no pain, no surgery, no interventions..... and for that I know you will be grateful. The Coroner may call for a PM or an Inquest, in which case it might help if you jot down a few notes to help to get the facts straight in your mind.
    I don't know if there has been a system failure at the CH or if it was simply Mum's time to die. Sometimes we never know the full story, but you have done your best and no Mum could be prouder.

    Thinking of you....Maureen.x
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I'm so sorry to read if your loss. Sending my condolences.

    Sent from my iPhone using Talking Point
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello jimbo
    a very sad time for you
    my condolences on losing both your parents in such a short time

    it's good that TP is here for you to write out your experiences
    I'm sure members with more knowledge will respond with their thoughts

    for me, this stood out
    so your last visit with your mum has left you with a lovely memory to hold on to
    and at your last sight of her she looked peaceful as she had done at those moments when you settled her to sleep; I hope that is comforting you

    for me, I'd expect the manager to come back to the care home in such circumstances, it seems respectful and responsible - I'm saddened that you haven't heard anything since
    the paramedic has to follow procedure, and I'm sure you will have a chance to say to the coroner whatever you need to; have your say, you don't want to feel later that you held back and wish you hadn't, you need to get all your concerns out into the open so that they may be answered and your mind set at rest

    whatever your future holds, the caring profession is short of men, so do keep it in mind; you may have the opportunity to make a very real difference for others with dementia and their families

    keep us informed

    best wishes
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    Sorry to read about this jimbo. It must be a terrible shock for you - and to have lost both parents in a short space of time. Condolences to you.
  7. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    So sorry for the loss of both your parents, Jimbo. I can only echo the sentiments above and say that I think, from what you've posted above, you did everything and more a caring son would do and that your Mum and Dad would be immensely proud of you.

    There are always 'what ifs' but,from the sound of it, you were right not to move your Mum while she was having her UTIs.

    You're still going to need support during this difficult time so I do hope you stay with TP for as long as you feel it helps you. I just hope I can be as strong as you when the time comes for me to post that I have lost Mum and Dad.

    Thinking of you x
  8. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    I agree with Shedrech
    is something really positive to hang on to in your grief. I know that after 2 years at end stage and not speaking or reacting I will never have that opportunity with my mother.

    Yes it was a shock and that will be affecting you. That means loads of random thoughts will assail you so try to hang on to the positives. Her end was peaceful and quick (And yes I envy you that.)
  9. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    I'm sorry to hear your news Jimbo. My MIL died on Saturday the 7th. She was 89 and it was a long time coming so not shocking as your mum's passing was.

    If the coroner is involved, you need to ring them first and they'll tell you what is going on. As she died unexpectedly, the coroner has to hold an inquest although chances are that it will just be a paper-based formality. I'm surprised the home didn't tell you that.

    I know this because my MIL was subject to a DOLS order (deprivation of liberty). It was explained to me but I never understood why it was necessary for someone who couldn't even feed themself, let alone stand up and walk. Anyway, when there's a DOLS and the person dies, legally they're "in the care of the state" so there has to be an inquest just as there does because your mum died unexpectedly.

    I hope it all goes smoothly and there won't be a post mortem.

    PS the staff at the NH MIL was in were quite upset when she went. It's their job, but they do still have feelings like the rest of us. I wonder if the nurse's response was more shock than flippancy?
  10. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    Yes I've heard of this before. I think it's 'regulation' unless they've seen a Dr within the past 7 days/week (?). Not quite sure of the exact time-span.
    Even with someone like my mother classed at a stage 'where death would not be unexpected' due to the severity of her dementia, it would still be classed as 'unexpected'.:confused:
  11. Harrys daughter

    Harrys daughter Registered User

    Jul 12, 2016
    How very sad this is to read to have lost both parents in such a short time hugs sent your way x

    Sent from my SM-G900F using Talking Point mobile app
  12. carper8

    carper8 Registered User

    Feb 26, 2014
    hi jimbo

    sorry to read of your loss, my husband died 26.12.16, it seems the same old story, had dementia for 11 years and end of sept kept getting utis and was in hospital, he was going to be discharged then infection got into hius blood and sepsis set in very quickly.
    he spent his last 19 days in a hospice, losing weight and not eating and drinking.
    we were all called in and watched him take his last breath, which was all very peaceful.
    feeling so lost.
  13. Soobee

    Soobee Registered User

    Aug 22, 2009
    Don't listen to the guilt monster - it consumes you.

    My condolences to you at this sad time. I think you need to follow your heart on this one, and be guided by your instincts about whether to disclose or not.

    Although you can't bring your mum back, if there is any bad practice in the home you might be helping someone else's family in the future if you highlight it. Although sometimes care homes have a culture which is not person-centred and is aimed at making staff lives easier. But I am sure you would have seen other evidence if this was the case.
  14. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    Thanks all for your replies, i'm overwhelmed and all have helped me think about the situation. I will reply back to them but will first update on things since my first post.

    I had started to feel a bit better last night. My uncle had mentioned a situation where he would like me to take care of my cousin when he passes and that she was positive about the idea if I was willing. Another Aunty has been really supportive and keeps asking me around. Although I have lost both my Mum and Dad in a short space of time, I couldn't really ask for more from them as surrogate parents.

    I've got to a point where I'm not consumed 100% of the time with what has happened. I am thinking of other things, sometimes it is for seconds and then also minutes, then it comes back to hit me. I'm feeling positive about that and thinking to myself, the first week is the worst, then the first month with the funeral, these are the worst periods to deal with.

    Today I had some contact with the coroners office. Although they said there was nothing criminal in the case to answer for, which I 100% expected, they felt there may be some contributory negligence from the paramedics report, so they are more than likely going to do a post mortem.

    I'm angry, obviously, but understand. A bit of me is feeling quite hostile to the home as i'm starting to feel like there is a cover up in place. A senior carer finally called me 48 hours after the initial incident. I'm worried about how I will feel if I find out my Mum could have had longer and of a good quality.


    Cat27, Izzy, LadyA - thanks for replying and your best wishes.

    cragmaid ... thanks and I agree maybe a blessing in one way.

    Shedrech ... thanks ... I plan to keep this going as I will find it useful and hope someone down the line that finds themself on their own in a similar situation ... I am pleased that the last memory is positive rather than how she'd been the day before, something to hold on to ... as mentioned above I think theres a cover up and their behaviour is starting to smell a little a little iffy ... I think in one way or another the caring profession is for me, up until that point I had felt quite good about my mums home and had thought down the line for applying there, but not so sure now.

    Suzanna1969 ... thanks and I would definitely recommend posting here when you do go through the unfortunate as it has helped me unload a lot of what I wanted to say. One thing I used to think very often to myself is one day they will be gone and to enjoy the most of things. I have found a lot of videos and photos of my Mum that I will keep forever. I'm looking at them lots at the mo, sometimes I feel sad, sometimes I feel positive and think how lucky that I get to see my mums expressions and mannerisms forever. So part of her hasn't died.

    Lemonjuice ... thanks and your post brought it back to me how lucky I am in a way. As a person I always say if someone could offer me a contract where I get to live into my 70's or 80's and go quickly, I'd sign on the dotted line.

    PeggySmith ... thanks and sorry to hear of your loss so soon after Christmas. What you say about the staff is true, I think someone may have made a genuine mistake but there may be a cover up, but we will see. But yes a lot of upset carers on the day itself. I myself have been upset at hearing of the passing of others in the care home who i'd only met a handful of times, but they were such characters they leave a mark on you.

    Thanks Harrys Daughter

    Carper8, so sorry for your loss, especially at this time of year. How are you feeling nearly a month on?
  15. jimbosmith

    jimbosmith Registered User

    May 10, 2013

    Thanks Soobee

    Think that's kind of how it turned out today. I was on the phone and thought 'well if the PM is happening, then I will say what need to be said'

    That's what I thought. Someone else, prior to this, coming forward may have helped my Mum, so I should pay it forward. Likewise, someone who has with held could have helped her. Either way I'm starting to feel more like opening up about my concerns.
  16. LadyA

    LadyA Registered User

    Oct 19, 2009
    You know, jimbo, there's even more of a shortage of male carers in the home care sector than in residential care work. Helping people in their own homes. Something to think about.
  17. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    Since replying to your post above Carper, I've had a look at Sepsis and UTI's and this has me wondering if this is what caused my mums decline.
  18. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    Thanks LadyA, I had initially considered the in home route, but I didn't want to be doing just washing. I don't mind doing some washing and appreciate that contribution to all out there, but would prefer to get to know somebody more and do a number of things with them. I always felt for my mum's washing ladies in that I often thought they would have loved to have had more to do with my mum, but it was 'on to the next one'.
  19. LadyA

    LadyA Registered User

    Oct 19, 2009
    Yes- agency work means time is money! And here, home care hours have been cut to the bone, so they never have enough time.
    There's always private work though.
  20. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    I was looking at some ads before Christmas and there was a guy on his own and he wanted help and company. He needed someone to get out and about.

    Maybe in time I will see it differently, at the end of the day those people need that help

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