Another Hospitalization; Outlook Not Good

Discussion in 'ARCHIVE FORUM: Support discussions' started by KarenC, Aug 28, 2005.

  1. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    My mom has not rallied well after her hospitalization (for infection and dehydration and the ill effects of a fall) a few weeks ago. She went back to her GP this past Wednesday; the GP noticed she had lost weight and seemed *much* more confused than the last time he had seen her. They did blood work while she was there, and a day later we found out her sodium was way high, indicating dehydration.

    So Thursday she got shipped back to the hospital, where they got her on an IV and got her rehydrated again. At this point the outlook is dubious, however. The hospital doctor talked to both me and my husband (in separate phone calls) yesterday, and said if she starts eating and drinking reasonably well, then she'll be OK, but if not then we'll be faced with the choice between putting her on a feeding tube and getting her in hospice care with the understanding she will probably not last too long. My parents have always been clear that they would not want to be kept alive just for the sake of being kept alive if they were in bad shape; we would not put her on a feeding tube; the hospital doctor, Mom's GP, and the staff at her Alzheimer's home all seemed to think that was a good decision.

    We haven't given up hope. They've reduced some of her medications (she was on a strong narcotic for pain relief, but seemed reasonably comforable in the hospital with less) which may help her alertness and appetite. And we've arranged for a one-on-one care giver, whose main job will be to encourage her to eat and drink, in the hopes we can get her back on track in the next few days.

    This afternoon they discharged her from the hospital. We visited her earlier in the day, at the hospital. That was pretty sad. She was asleep and did not wake up while we were there, even though I stroked and patted her and we talked to and around her. (I understand she was awake and talking earlier and later in the day, however.) She at least seemed comfortable, but it was sad for me to think "This may be the best shape I'll see her in." :(

    Then we went to visit my dad (at a nursing home, not the Alzheimer's home where Mom lives), and gave him the bad news. Now I'm kind of bouncing emotionally between dealing with my own feelings of impending loss, and trying to figure out how to help my dad deal with his.

    Karen
     
  2. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Karen,

    I can only imagine, at the moment, how hard this must be for you, although I do know what it's like to put your own feelings about my Dad on hold for my Mum's sake. I hope the one-to-one care giver is beneficial in getting your Mum to eat and drink. I'll be thinking of you.
     
  3. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Karen

    I will be thinking of you, what a horrible situation to be in.
    Hope your dad copes with the news ok and your mum stays comfortable, whatever the outcome.

    Kathleen
     
  4. Fran

    Fran Registered User

    Jul 8, 2005
    7
    Hampshire
    eating and drinking

    Karen

    Just to say I feel for you and know exactly what you are going through. Trying to encourage someone to eat and drink when they don't feel inclined to do so is an absolute nightmare - we are having the same problems with my Mum (who was also hospitalised for severe dehydration) and anaemia. She is back home now but more confused than ever and totally switched off eating and drinking. I do hope the carer is able to encourage your mum. Take care and try and keep strong.
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Karen and Fran, I can well remember the feelings you are going through. All you can do is your best, it is a difficult time for you right now. Let them know how much you love them, I found that so important to my Mum. Then, whatever the outcome you can do no more. Thinking of you, love and hugs, She. XX
     
  6. tinkerbell

    tinkerbell Registered User

    Aug 28, 2005
    2
    Hello Karen
    I can understand how you feel ,my grandad had dementia and i would'nt let him have a feeding tube either ,Idont like them but also i've seen a lot of men on my ward fitted with them and I still dont like them chin up love :)

    Tinkerbell
     
  7. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Karen,

    I'm sorry to hear about this recent change in your mom's health.

    The idea of a one-to-one care giver sounds excellent. At least you will know over the coming days that she will be getting all the support possible.

    It's also a good thing that your parents clearly expressed their wishes regarding extraordinary measures to prolong life. Hopefully it will not come to that, but at least you will not have to wrestle with that dilema (along with everything else you must be going through).

    Take care,

    Sandy
     
  8. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    Thanks all for your good wishes.

    One of the tough moments yesterday was with my dad, after we'd told him the bad news about Mom's condition. He was quiet for a few moments, then said "I've been thinking about Kathy [my mom] and I." Another long pause, then "Why aren't we living together any more?" His memory is not great, and I think he doesn't much remember the sequence of events over the past few years. I reminded him that as he got physically more disabled a few years ago he needed the higher level of care of the nursing home part of the 3-tier retirement community; for a while Mom was in the "independent" level there, then assisted living, but last March her dementia got so bad in a difficult way (agitation, aggression) that this retirement community could not handle her and she had to move to the dementia home.

    This brought up the issue of possibly moving someone -- probably Dad -- so they could be together. Silverado said when Mom moved in that Dad could come, too; they are not a skilled nursing facility but can handle people completely wheel-chair bound as he is. My husband and I (and the social worker where Dad is) think that would not be a good place for him, however. While his mind is not totally clear, he is not in another world like most of the folks in the dementia home. I also think it would be very hard on him seeing Mom deteriorate -- whether it is a fast decline from here to death or whether she rallies somewhat but continues in a mental world that is increasingly out of touch with "reality" as Dad and we see it.

    Dad did not say he *wanted* to move; he's smart enough yet to realize he doesn't really know what he wants or what would be best. It's another issue to deal with, however.

    If Mom does decline rapidly, I don't think we would consider moving anyone. I am thinking however about Dad visiting her (which he has not done since she moved).

    When they were both at the same retirement community, in different buildings (nursing home for Dad, assisted living for Mom), neither wanted to visit the other except when we were there. They didn't have much to say, and I think it was sad for each to see the other decline. Since Mom moved to the Alzheimer's home, we've just taken her to visit Dad, since she has been ambulatory and easy to transport.

    If we are near the end of Mom's life now, I want to at least give Dad the option of getting over to visit. I don't know whether to encourage or discourage, so will probably just try to sound him out and do what I think will suit him best.

    We haven't gotten much update on Mom yet -- too soon to tell, really. The one-on-one service started; she slept OK last night; she was awake this morning; that's about the news so far.

    Karen
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Karen, so many decisions for you. What you say about sounding your Dad out sounds really sensible. It is so hard weighing all these things up and trying to do the best for everyone isn't it. Thinking of you, love She. XX
     
  10. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Hello Karen

    I wish there were words to help you at this most difficult time but I and many others are thinking of you.

    Love Linda x
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Karen
    it's all so sad.
    I ask myself why?why?why?
    There is no answer for us.
    Thinking of you
    Norman :confused:
     
  12. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    Somewhat More Hopeful

    The outlook is a little better the last few days. The home reports that Mom is not eating exactly well, but is eating around half her food, is taking Ensure (nutrition drink), and is acting more "normal" for her -- talking, interacting with other residents. Too soon to say she is out of the woods, but we are more hopeful of her getting back to close to the condition she was in a couple of months ago.

    Karen
     
  13. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Karen,

    So pleased to hear the Good News about your Mom. My Dad's done this a couple of times now - giving us a scare and then returning to his "normality". It certainly brings a tentative sense of relief and appreciation, doesn't it?! Thanks for letting us know.

    Best wishes,
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Karen, glad to hear things are improving for your Mum. Your heart skips a beat every time these things happen doesn't it? Thinking of you, love She. XX
     
  15. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    #15 EllieS, Sep 1, 2005
    Last edited: Sep 1, 2005
    Constantly judging yourself and your decisions

    Dear Karen

    You sound like a wonderful daughter who's doing absolutely everything you can for both your Mum and your Dad. Be kind to yourself, it sounds to me that you're making good sense all the way down the line.

    When I first read your posting I was thinking maybe it would be an idea for your Dad to see your Mum - it sounds like the right thing to do, but in reality it's not easy when everything is so complicated and you're dealing with "life decisions" for someone else . You can only do your best. Hope any decisions you make on this prove to be the right ones.

    When Dad was very very poorly in 2001, my Mum and I fed him with a syringe - the Nurses were not able to do this as it was deemed to be "force feeding". He would bite the syringe and sometimes us but we got him through that bad time and he had a couple of reasonably good years before he died February 2004. But I would be lying if I said that I didn't ever wonder if it had been the right thing because he really did not deserve to suffer the way he did during his last months. But on the other hand I wouldn't have wanted to miss even one of those blue eyed smiles.

    We never noticed poor Mum's deterioration during this time (she was caring for Dad at home) and her memory had deteriorated and was not giving Dad his meals or drinks or medication - so it became a vicious circle. They both suffered really badly and Mum was left a lost soul - unable to care for herself and is now in an EMI Nursing unit.

    The good thing is that I've recently moved her to be close to me and my sons (she was on notice from the Care Home she'd been in) in the hope that our regular visits might, just might, make a difference. It makes me nervous to say it but she moved 4 weeks ago and she is communicating much better - but maybe it's just a blip!

    Anyway, keep up the good work but don't forget to keep some time for yourself!
    Best Wishes
    Ellie
     

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