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Update Update -- Hospice?


Dianne is in the hospital, bedridden.  Her foot and ankle are in a cast.  She is not given solid food and very little liquid.  They say that this is because she is unable to swallow properly and water and food get into her lungs.
The lungs, in their turn, are already in very bad shape.  Monday she seemed incoherent and non-apprehending.

Today she was alert at least long enough to her the hospital doctor suggest hospice care.  With her lungs deteriorating and her right foot injured, i was already worried about how i could take care of her.  But she seems amenable to hospice (at home),

Hospice care implies a short life expectancy; but we do not treat this as prediction or forecast.  Her brother has been in hospice care for nearly two years now and seems in better health than now than he was then.  Still everything seems a little unreal.  (Of course, everything is unreal, but you know what i mean.)  Her lungs are not communicating the seriousness of their condition to her brain.  I can no longer say that she knows her body better than her doctors do.  Hospice seems the least intrusive alternative possible if we want to avoid immediate suffering.

I talked to our older daughter by phone to report on the conversation.  Thankfully, we know each other well enough that we can communicate.  I am fearful of talking to our other children about this, and i hope that she can do this for me.

I wish i knew how to grieve properly -- damned autism!.

Dianne is strong and does not fear death.  We are going to be o.k.

Comments

( 14 comments — Leave a comment )
cathy_edgett
May. 11th, 2016 04:21 am (UTC)
Oh, my, I am sorry. Please keep us informed. My thoughts are with you, and prayers.
bobby1933
May. 11th, 2016 04:55 am (UTC)
Thank you,
Yes, i will.
Thank you!
amaebi
May. 11th, 2016 12:36 pm (UTC)
Thank you so much for posting.
reginaterrae
May. 11th, 2016 06:31 am (UTC)
Oh, Bobby.... Love and prayers for you both.

There is no proper way to grieve, even without autism. Dianne knows how much you love her. Just keep loving her, grief will come in little bits, it's not constant.
bobby1933
May. 12th, 2016 03:54 am (UTC)
Thank you, Regina.
Yes, you are correct.
amaebi
May. 11th, 2016 12:35 pm (UTC)
Prayers to you both and all, and love, and bread for the journey.

For what it's worth, and not meaning to dismiss your individual situation: I don't know that anyone knows how to grieve, really. I think that figuring that out each time is part of the process.
bobby1933
May. 12th, 2016 03:54 am (UTC)
Thank you, Donna.
Yes.
nerthus
May. 11th, 2016 04:21 pm (UTC)
I'm so sorry she is suffering so with her lungs; grief is such an individual thing even as it's so universal, and there's no one way to do it or only one way to express it. My grief over my mother is not the same as the grief for my son, and both types change and evolve--sometimes daily--as I try to process them and in tandem with my own moods and daily life situations. I think hospice at home is a good start for now, and as Buddhism states, there IS only NOW and worrying ahead into the future will only stress you out. Not that you shouldn't be prepared to some extent, but I think you understand what I mean. I will be keeping both of you and your children in my thoughts as always and wishing the best for you all.
bobby1933
May. 12th, 2016 03:57 am (UTC)
Thank you.
Yes.
Thank you!
(Deleted comment)
bobby1933
May. 12th, 2016 04:00 am (UTC)
Thank you.
Both our daughters were at the hospital toaay,
One drove 500 miles to get there.
Both were understanding and helpful
pondhopper
May. 11th, 2016 09:05 pm (UTC)
Hospice is a good idea as it will give you some respite as well. I think that all that one can do is think of this as a great help and what happens and when it happens is a great unknown. Sending thoughts of peace and strength for you both.
bobby1933
May. 12th, 2016 04:01 am (UTC)
Thank you!
opakele
May. 12th, 2016 01:16 am (UTC)
I have been a volunteer hospice caregiver. You are right, it is not a forecast. It is a way to get resources you will need for Dianne to be comfortable and well cared for at home.

I have an idea how difficult this is. My best wishes to you and your family.
bobby1933
May. 12th, 2016 04:02 am (UTC)
Thank you, Stephanie.
( 14 comments — Leave a comment )

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