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Mother in last stages..need advice

Discussion in 'After dementia — dealing with loss' started by DaughterN, Feb 6, 2007.

  1. DaughterN

    DaughterN Registered User

    Feb 6, 2007
    14
    United States
    Sadly I lost Dad in 03. A few days after his 8 years struggle with the disease I had to face the fact that my dear mother who was 80 had the disease. It started a year before that I suppose but I was too caught up in Dad's situation. It is now probaly her 5th year into it. We had to rush her to the hospital by ambulance because she nearly choked to death. She stopped wanting to eat or drink(must be hand fed) so her food was now blended. It turns out she has aspiration pneumonia. They told me she will never eat or drink again. They have her on a fluid bag and her electolites are still good but she has no bowel control for over a year or more..she doesn't speak seems like she tries to but its bad. She hasn't been really lucid in a few years.

    She has been confined to a wheel chair and became dead weight so I got a hoyer lift and hospital bed. She was up in the afternoon most days dressed and in her chair. I noticed recently aside from the eating problems that she had her head was hanging back now and her mouth is open. I never experienced this level with my Dad...he was still walking after 8 years he had a sepsis infection he died over night at 88 yrs old...very quickly. I now look at that as a great gift. I can overcome any obstical because I loved them both but this I believe is suffering. She is being treated by antibiotics for the pneumonia...how could I have not...

    Her throat looks dry and like a wall of cobwebs of mucas in her throat...her mouth no longer closes. We have kept her in her own home and have managed with help coming in. She needs full time care. They are suggesting a feeding tube...she will be 86 in April and has lead a long healty life before this happened. She was a beautiful classy woman who would be mortified at what has happened to her. She never liked a hair pulled. There is no living will. I am it. I have to make a decision in a day to stick in a feeding tube. She has no real quailty of life anymore and I do have a dnr order. She speaks with her beautiful eyes...and maybe a mumling word or 2. She does know pain because I see her face when the nurses touch her. I think this tube is not a good thing I need to hear some of your opinion of those of you that have similar situations. I am thinking maybe comfort care in a hospice might be more humane and respectful. I see no where to go but probably but next in a fetal position...bed sores possibly and God knows what. I flip flop back and forth ....with this. Any info helpful.
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear DaughterN, I'm afraid that I haven't been in this position, although I suspect I will be soon, although I have given it a lot of thought. From everything I've read, when the desire to eat has gone, the body no longer feels the need for food. Provided the lack of food isn't causing distress I would, personally, not insert a feeding tube. It is simply staving off the inevitable, again in my opnion. I fullly understand why people go this route, but I would definitely not choose it for myself, and I won't choose it for my mother when the time comes. Fluid to mosturize the mouth, yes, but that's about it.

    Love

    Jennifer
     
  3. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi DaughterN,

    I'm sorry that you are facing such a difficult dilema, but it sounds like in your heart of hearts you already know what is the right thing to do.

    You might want to look at this thread which deals with a similar situation involving another member of Talking Point recently:


    http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=4788


    Also, the Alzheimer's Society here in the UK has a position paper on palliative care that you might want to take a look at:

    http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/palliativecare.htm

    I'm sure others here will offer advice and support at this difficult time.

    Take Care,

    Sandy
     
  4. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hello DaughterN,

    I am so sorry you have gone through this with first your Dad and now your Mum. I have been too afraid to even look too closely at this type of post before, but I now find myself in a similar position. My Dad stopped eating and drinking and last week they had re-hydrated him. When we drove to the hospital that day I was dreading my Mum and I being asked if they should remove the tube. Luckily the doctor took away the decision from us, saying they only re-hydrated Dad in order to give him some anti-biotics intravenously. The doctor said in the latter stages of Alzheimer's the ability to know hungry and pain are lost, although they will keep watching for any signs of pain. They are also cleaning Dad's mouth. We reached a point when we knew this was the only humane course of action for Dad. Every case is different of course, but I hope this helps in some way.

    love, Hazel.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear Daughter N .

    I suppose the medics have to suggest anything and everything, until they get an idication from the next of kin that enough is enough.

    However difficult that decision is, now, with your mother, I don`t believe you are prolonging her life, I believe you are prolonging her existence.

    If you have Hospice care available, I would also consider that. The Hospices have such a wonderful reputation, know how to manage the pain you believe your mother suffers, and don`t avoid the issues relating to the end of life.

    I hope you get the strength to make the right decision for your mother and for yourself.

    Love Sylvia x
     
  6. DaughterN

    DaughterN Registered User

    Feb 6, 2007
    14
    United States
    Worse days of my life

    After several nose bleeds and nights of twisting in my sleep this past week I believe I have made the decision to put mom in hospice...the feeding tube after what I have read just adds more suffereing. Yesterday they took me to the hopital Hospice Wing...It was a strange feeling...almost like entering a safe haven...people just resting in bed...piped in music...just waiting for the time to be at peace...my heart is paining me...I still want to keep her going but I know aspiration pneumonia and loss of eating and drinking is a final stage of this horiffic disease. It's been a long 5 years of battling every obstical there was....but this ...this is awful....no hope for any quality at all......the little bit she had...I held on to for dear life. Now I pray.....Take my beloved Mama gently to Heaven to be with My Father and ....their grandaughter Colleen, my little girl. Please God take her home and please don't give her pain. She has suffered enough.
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hi DaughterN,
    Be at peace with your decision - you are doing what is right for your mum - all you have to do now is make sure that you say to her everything that you want to say.
    Hold her, stroke her, speak to her, cherish her - let your love surround her. She will know it and feel it - I am sure.
    We will be here for you.
    With love, Helen
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,578
    Kent
    Dear DaughterN,
    Through all your heartache you were still able to feel in a safe haven in the hospice. That shows you are making the right decision.
    I feel your pain. Love Sylvia x
     
  9. bertie

    bertie Registered User

    Jan 21, 2007
    5
    burton on trent
    hi
    i truly believe you have made the right decision hun, we too had to face this dilemma with my mum at age 64 when she no longer had the ability to know how the eat or drink, the doctors at the hospital wanted to insert a peg ( feeding tube) into her stomach but we as a family made the decision that this was not what mum would of wanted, it was a very hard decision to make but in the end i believe the right one.
    it sounds like a wonderful place you have your mum now, if only we could of found somewhere as nice for mum,
    i am sending very strong and warm thoughts to you at this time, and please believe you have made the right decision!

    love

    Sal
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hello DaughterN

    I've just caught up with your thread, I've been away. I'm so sorry you're in this position, it's so hard, not wanting your mum to suffer, but still not wanting to lose her. I was in that position with my Mum, and like you I took the very tough decision not to have the tube. I think you are right.

    The quote from your post is so beautiful, and follows exactly my feelings at the time. I too lost a beloved daughter.

    When it was clear that the end was near, I asked my Mum to seek out my daughter and tell her how much I still loved her. I like to think that this gave Mum peace, and took away her fear of 'the other side'.

    I hope you and your Mum have the peace you pray for.

    Love,
     
  11. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Hi DaughterN

    I'm sorry that I don't have anything to add, but I just wanted to say how much your post touched me.

    Libs
     
  12. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #12 DeborahBlythe, Feb 9, 2007
    Last edited: Feb 11, 2007
    To tube or not to tube

    I don't know if this posting that I am going to make will help you or not. It's just my experience.

    My mum was eating poorly this last year from about November 2005 onwards. She was sent to hospital in March 06 for tummy pains which later proved to be merely indigestion however her 'home' would not, at first, accept her back. The hospital environment was confusing for her and the food regime unreliable, the food poor. The consultant told us that my mum's poor appetite meant that she could only have months or less to live. I was determined not to let my mum go further downhill in hospital simply as a result of the ward staff not having time to concentrate on feeding her. ( She wasn't the only elderly person who didn't seem to get enough attention with feeding). I noticed that some patients were being allowed to 'slip away': moved to a private room and given only water. I was very anxious that no assumptions should be made about my mum, and I managed to re-awake some appetite with chicken soup which I brought into the ward most days in a flask.

    The consultant geriatrician had also said that she thought artificial feeding methods would be of no use as my mother would reject them, but other patients were being offered them and I heard a member of staff say that if they were refused three times then they would not offer them again: a statement which alarmed me considerably.

    One day I was rung at home by a member of hospital nursing staff saying that they were going to try to insert a naso-gastric tube to feed my mum and they wanted me to be there. I asked her whether it was a matter of life or death. Would my mum die without it? The answer was they thought so, and were amazed that she had survived so long on such minimal intake. I dithered about this, flopping to and fro about the ethics etc etc etc, just as you have done. I delayed making a decision for about three days. Then I spoke to a retired doctor friend of mine who said that a naso gastric tube process was not such a big deal and that it is used routinely and that if it was 'life or death' , that I would feel bad if I prevented it happening. I don't know if this was good advice or not, but it swayed me to go ahead at a time when I couldn't see the wood for the trees, so to that extent it was welcome.

    The afternoon arrived when the tube was to be inserted. My mum agreed to the process but of course once they started inserting the tube she found it horrendous and was extremely upset about it. I tried to calm her down but she was very angry with me. However as soon as the tube was in situ, she didn't feel any pain and forgot about it. Unfortunately, after the tube is inserted it has to be x-rayed to make sure that it is in the right position. There was a delay taking my mother down to the x-ray theatre, then a further delay taking her back to the ward, and a further delay whilst we waited for the results to be approved by the doctor. All in all it took about four hours from the time that the tube was inserted until the time when the feeding bag could be connected. I left the hospital at just gone 10pm and I rang first thing in the morning to see how things were.

    My mum had ripped the tube out during the night but had taken in about 300 mls of nutrition. The staff said that they would not repeat the process again because if she ripped a tube out again there was a danger that pieces of it might break off and be left in the gastric system.

    I would not repeat the process and I would not claim that she fully turned a corner on that occasion, but her appetite has returned to some extent and now, several months later, she eats small to reasonable amounts , takes fluids and supplements readily and in the case of tea, very eagerly. She has had the attention of a palliative care nurse withdrawn because they say that she is 'not terminal'.

    I am pretty sure that my actions have helped to keep her alive. Yes, her life is very circumscribed by her frailty, but she still has moments of pleasure, still has a sense of humour, still enjoys certain aspects of her day. I am not saying that anyone else should do as I did, just letting you know what happened, and you must make up your own mind. Your circumstances are very different and every situation is individual. I would not presume to criticise anyone who acts differently, but there have been several occasions when people around my mother have begun to assume that she had 'given up' on life. Recently a dietician visited her and my mum complained that she was ' being starved here' and that she 'WANTS to LIVE'.

    Some days, like you, I too have wanted her to be at peace, away from the indignity of some aspects of her existence, but by and large, I think I have a duty to try to keep her comfortable and well-cared for as long as I can and whilst she wants to eat and drink, to make sure that she gets the right sort of care to ensure that this happens. I'm always making mistakes with my mum's care; I'm not always consistent, and sometimes I have to back away simply because of exhaustion, but I'm not going to beat myself up about it and I don't beat myself up about the tube episode even though it caused a fair amount of distress to my mum for not much outcome. With less delay in the hospital and better supervision at night, it might have worked more effectively. My mum forgot the discomfort as soon as the tube was in place, but during the night was perplexed by the tube coming from her nostril, hence the desire to remove it. Anyway, maybe my description of what happened will help someone else see the pitfalls that I didn't see. Whatever decision you make, everyone here will want to support and help you and I want to send you my very best wishes and love too, from Deborah
     
  13. DaughterN

    DaughterN Registered User

    Feb 6, 2007
    14
    United States
    My mother has passed

    Thank you all of you for your support...Mom has passed away. It was the end of a long batttle. I vision her with Dad and my daughter...whole again and beautiful. I am greatful for the years I had her. She was going to be 86 in April. There is a poem on the Alzheimers Asso. site....it best describes an Alzheimers patient. It kept me going and helped me to understand what my parents went through.
     
  14. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    So sorry for your loss, but what a beatiful way to look at it.

    Take care

    Libs
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear DaughterN

    So sorry about your Mum. It's lovely that you can now see her with your Dad and your Daughter.

    You gave her a lovely peaceful end, and you will always remember that.

    Love,
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Dear DaughterN

    I am so sorry for your loss.

    Thinking of you

    Jennifer
     
  17. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Dear Daughter N, so sorry to hear your news. Please accept sincere condolences and kind regards, Deborah
     
  18. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Dear DaughterN

    I am so sorry for your loss. My thoughts are with you at this very sad time.

    Carolx
     
  19. daughter

    daughter Registered User

    Mar 16, 2005
    824
    So sorry DaughterN, I am thinking of you and sending {{hugs}}
     

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