Can anyone help me?

Discussion in 'End of life care' started by RedTrojan, Jan 10, 2015.

  1. RedTrojan

    RedTrojan Registered User

    Jan 10, 2015
    2
    My gran has just gone into palliative care for her Alzheimer's dementia after having the last stage for over two years. She was recently in hospital for a bout of respiratory arrest and once admitted the onsets of aspiration phuenmonia, so I realised it wasn't going to be a good outcome; even after the doctors had her on an IV to hydrated/'feed' her since she's lost the ability to swallow nor possibly re-learn it anymore.

    Now she's back at the care home for palliative, I wasn't able to go to the consultation with the hospital about it, and those who were, are not going to tell me how long they estimated she had left, "She's not gone yet" they kept saying. But what they don't realise is saying that and "keep a brave face", isn't going to help me with what I'm feeling. I know by the rule of thumb it is an uncertain amount of time for someone with AD, and I realise it's selfish of me wanting to know. However for the past year now I have been having low psychological issues, and adding the anticipatory grief and chronic grief over the loss of her as a person, I haven't been in a very stable place, almost numbed if I have to describe it. I just want to know how long (estimated) I'm going to have my gran for or what is left of the woman that played a big part in raising me, even if she doesn't know who I am, and not be lied to in hopes that it will lessen my bereavement. It's doing the opposite.

    If there is anyone that has gone through this before and is able to share their experience with me about the palliative care, I would greatly appreciate it. This whole step is really scared me, I don't know how to feel about it.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,568
    Kent
    No one can give you a definite time RedTrojan which is why you are not getting the answer. So much depends on your gran`s physical stamina.

    My husband was on palliative care with aspiration pneumonia and lived less than a month after discharge from hospital. I don`t know whether this will help you or not.

    I`m so sorry you are scared. Try not to be. As long as your gran is pain free and peaceful it`s the most you can wish for her.
     
  3. flower1

    flower1 Registered User

    Apr 12, 2013
    124
    Hi RedTrojan, my Mum is in a nursing home and has been for the past 4 years. She in now 78 and entering her 5th year of vascular dementia and I have been told she is in the last/severe stage of this cruel illness (which comes under the Alzheimer's umbrella). She has to be fed, liquid meds, totally incontinent, immobile, glazed expression, sleeps loads and it's all so hard to see year in year out. I have asked the same question on here and to the professionals (in nursing home and doctor) how long has my Mum got left, just hate to see it and the person who used to be my Mum is no longer and does not even know me. My Mum is now coughing a lot after food and drinks and was even refusing some of it. I was told by one of the NH carers that a sign is when she does not want the drinks or food could be that she is starting to give up and can no longer fight....or she may develop asp. pneumonia which I am aware can be very serious. I hope this helps in someway as it is so frustrating and upsetting.
     
  4. RedTrojan

    RedTrojan Registered User

    Jan 10, 2015
    2
    Thank you, both of you, for taking the time to write those replies. They all helped, as much as can be helped at the moment. Seriously, I appreciated it a lot.

    That's what I was most afraid of @Grannie G, that they are trying to keep her hydrated and fed but the nurses at the home aren't taking into account that it's pretty much might be worsening her condition, that trying to make her remember swallowing is not directly but basically choking her. I read that even giving IV fluids and the things similar such as ice cubes etc. are burdening her system cause she couldn't process it? And as a graduating science student, I've researched about it and recognise that dehydration produces ketone which have an aesthetic quality to make death more painless. I know I'm not qualified and have no say but, it just seems easier on her? I don't know. Even giving a rough time like that has given me a little more preparation for when eventually- well, you know. Thank you very much.

    @flower 1, I hope you're Mum's condition doesn't mean she develops asp. pnuemonia, from this experience it does certainly seem one of the crueller ways a family member falling under the Alzheimer's umbrella can eventually pass away of. Hearing about how similar your experience with this was has helped too, knowing that it not just my Gran who is going through it. Of course, I know that it happens everywhere, but it doesn't quite sink in until you hear others stories about it, it's like a therapy I guess. I hope your Mum is still well.

    Thanks again both of you, I wish you all the best.
     
  5. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    HI, I'm sorry that you are finding it so difficult to come to terms with the ending of your Gran's life. I have been told at least three times last year (2014) that the end was near and Mum was dying, and so far Mum is still here. It might be easier to predict when it gets to hours for Gran, but there is no definitive time scale.
    I do know how hard the waiting is, you feel like you are holding your breath all the time, you don't dare commit your time or attention to anything important. Are you an " only" or do you have parents or siblings to share your thoughts with? It really doesn't matter how much experience of death you have had, and sadly I've sat beside a few of my family as they travelled their last journey, each parting hurts in an individual manner.
    In any case we are here and will hold your hand through it, if we can.....
    Keep in touch, Maureen.x
     
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    I am also sorry that you are struggling with your understandably sad and confused feelings. I was told last May that my Husband was approaching end of life; however, his heart was strong and he finally passed 9/12/2014. Pete was only 68.There was one woman in the CH who is 99 and sounds the same stage as your Gran. Why she is still with us is difficult to come to terms with -it's just impossible to explain, or understand, why a woman 30 years older than Pete didn't pass before he did.

    I'm afraid this has in no way answered your question. I think I have, in a convoluted way, said there is no answer. I would stress that this Forum is a very good place for offloading your feelings of grief and there will always be someone here who can relate to your emotions.

    Please keep posting whenever you want/need to

    Take much care

    Lyn T
     
  7. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    It was rather different, since after the umpteenth UTI my aunt had begun to refuse food and drink, but it was decided with the GP that it would not be in her best interests to give IV fluids, since it would only be prolonging the dying process. However from so much I have read and heard, CH staff and medics will often continue to try to get someone to eat and drink, or to administer IV fluids, since they are wary of suggesting to relatives that they be stopped. And from what I've seen at my mother's care home, there is sometimes a lot of coaxing (or even badgering) to eat when the person clearly does not want it. There is no doubt that some people do get extremely upset if anyone suggests letting Nature take its course, and want everything possible done to keep someone alive no matter how pitiful the state they're in.

    Should add that my aunt drifted away very peacefully after about a week. The staff did continue to offer food and drink but she clearly did not want any of it, and they never pushed it or tried to coax or cajole her. I must say it was a very difficult decision at the time (not to send her to hospital for IV fluids) but we never once regretted it afterwards. I think she had simply had enough and it was kinder to let her go peacefully, in familiar, comfortable surroundings.
     
  8. Goingitalone

    Goingitalone Registered User

    Feb 11, 2010
    1,685
    Hi, RedTrojan,

    Your circumstances sound similar to ours. My Mum died in November, about a month after she was discharged from hospital to a nursing home for palliative care. It was understood that she would not be readmitted to hospital should she develop another chest infection. She had COPD, diabetes and Vascular dementia.

    For the first 3 weeks she ate and drank a little. All her meals were pureed, her drinks were thickened also as she was struggling to swallow. She couldn't speak and her facial expressions were mostly fairly blank.

    I understand your feelings of grief. It is as someone else described, a sort of state of holding your breath, waiting for the inevitable. I don't know if this will help you, but I feel that my grieving process started when Mum was no longer able to eat properly or speak to us. Consequently, I have coped better since her death than ever I thought I would.

    The last week or so of her life was hard, but it gave me the opportunity to tell her how much I loved her and I spent several very peaceful nights with her which I will never forget.

    Make the most of this precious time you have with her to tell her how much you love her and tell her everything you need to. Above all, show her she's loved.

    It gives me great comfort to know that Mum knew how much I loved her, right up till the end.

    I wish you peace of mind and a peaceful end for your dear Gran. It's clear to us all that you love her very much and she is fortunate to have such love at this time.

    Maggie
     
  9. jax2015

    jax2015 Registered User

    Feb 8, 2015
    5
    #9 jax2015, Feb 10, 2015
    Last edited: Feb 10, 2015
    Food and drink

    My mother was in hospital she was refusing food and drink,she was sent to have a drip twice to hydrate her,she was offerd food constant and it was distressing to see,every time she turned or moved she had a drink put in her hand or offerd,I was took to the office and was able to tell the staff to stop and agreed with them she should not be sent to another hospital for the drips to feed her,however mom started to eat and drink again and we have moved her to a care home,she is continuing to eat and drink well and loves cream cakes.seems the physical side of moms health as improved loads and I have unfortunatley took this to mean that there as been some improvmen in moms health,the care home staff said moms condition had deteriorated,this was confusing but it's been explained the physical improved not dementia.wish some one could tell me what to expect for the future but that's not going to happen,can any one tell me what moderate stage means how long it lasts or how this stage is assessed ?
     
  10. CJW

    CJW Registered User

    Sep 22, 2013
    213
    It is such a difficult time, when we are torn between not wanting to loose a loved one and struggling to cope without knowing how long we have to hold everything together. My mother died after a few weeks of palliative care. She refused food and drink and this went from taking just a sip or two to turning her head away. it was obvious to the CH staff and me that trying to give her food and drink was only distressing her and because we knew she had kidney failure the decision to stop trying to persuade her was easier. We knew she only had days left anyway. In the end I told the CH to stop offering her food and not to insist with liquids. while it is a sad time as others have said there is something beautiful about being there while your loved one lives out the last days and hours. It is a precious time even if it is fraught with worry and upset. take care of yourself and trust your instinct and love to guide you. You won't go wrong and you will find the strength to cope and help your Gran for however long she stays with you.
     

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