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 Last Days experience - with hospice care at home 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Last Days experience - with hospice care at home
Dale has entered the 'final phase,' which is completely different so rather than add to the 'hospice' thread, I've chosen to begin a new thread.

As of Tuesday, Dale could no longer swallow or speak. On Wednesday night, he had a 'death rattle' all night. On Thursday, we began meds that have eliminated the 'rattle' and the hiccups that followed. The nurse told me that the average expectancy without food or water is 7 to 14 days.

Today is the sixth day without food or water. Oddly, he is more alert today than he has been all week. He moves his arms in a jerking fashion and has limited facial expressions when I talk to him and clean him. I was told to expect this but knowing that he wants to tell me something and that speaking is impossible is painful. We've enjoyed the music of the CDs and that seem to keep both him and me calm.

His brother has been here for the past two days and Dale said a couple of words ('No' and 'ouch') during that time. His eyes filled with tears once.

His body is breaking down and there is no preventing the ugly red patches now. He can't move and we have turned him every which way and used soft pillows to protect the spots ... but still they appear. We've placed a large bathtowel between his feet which are resting on a pillow and that has kept them separated so he doesn't hurt himself.

The swelling in his hands and feet comes and goes and they are sometimes warm and sometimes cold. He was without urine production two days ago but last night, the bag was again full of 'dark tea.' I awoke this morning to an odor and I was sure he had a BM but there was nothing there. It's obviously gases. I'm realizing that I will need to air out the house after this is over.

I hope I'm not offending anyone but I had wished this sort of first person account of the final days was written by some lay person who had lived it. I opted to keep him here at home and am very glad I did.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 20, 2011 2:38 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Last Days experience - with hospice care at home
Thank you for your candor, Leone. I can't imagine anyone being offended by your account. On the contrary, it will surely be helpful to many of us who will be in a similar situation at some point.

It's wonderful that you have been able to keep Dale at home and care for him, as you wished. What a wonderful thing you are doing for him in his last days. His inability to speak must be very hard. You are so brave.

I think of you both so often and hope for a peaceful transition for Dale.

Julianne


Sun Mar 20, 2011 3:11 pm
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: Last Days experience - with hospice care at home
Leone:

We are all not only thinking of, and praying for, Dale and you, but we share your "death watch," at least that's what it seems to me.

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Gail, 70,[color=#80BFFF][/color] married 47 years to Charlie, 71. Recently[size=50][/size] placed in excellent memory care facility.


Sun Mar 20, 2011 3:18 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Last Days experience - with hospice care at home
All I can say as I cry fo you both, is God bless you, and grant Dale a speedy journey home. You are a wonderful, strong brave woman and I am in awe of your love and dedication,
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Mar 20, 2011 3:58 pm
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Post Re: Last Days experience - with hospice care at home
Leone, my hat is off to you. You have reserves of strength that are astounding. I find myself thinking about you often as our day goes on and I send good thoughts for strenth and endurance for you and a peaceful journey for Dale. Dale's birthday is May 1. You wrote that in another post someplace. Del also was born on May 1, and this year he will be 75. We have that in common, too.

Good thoughts your way, Nan


Sun Mar 20, 2011 4:23 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Last Days experience - with hospice care at home
I hope your husband's passing is peaceful.

I'm remembering that Dale raised the topic of brain donation in the past but don't know what ever came of it. Call the Florida Brain Bank to give them a heads-up, if you intend to donate his brain.


Sun Mar 20, 2011 4:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Last Days experience - with hospice care at home
I hope you are doing ok under the circumstances Leone. I think about you every day. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Mar 20, 2011 10:43 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
Thanks to all of you for posting such encouraging messages. I feel the love. At church yesterday, I was also enveloped in love. Dale's caregiver felt aware this time that he may not be needed much longer. We're all keenly aware that this is coming to an end.

A girlfriend came in the afternoon. We chatted with Dale on his bed between us and it was obvious that Dale could hear us. Dale wants a 'party' instead of a typical memorial service. The bag-piper Dale wanted has agreed to play outside the house to welcome friends to our home and the 'party.' In fact, Dale left me a list of what he wanted... and we are attempting to make it happen just as he wished. It will be quite unconventional but so was Dale!

Her husband, one of Dale's close buddies, will come this afternoon. He felt too broken up to come yesterday. Several friends have asked if they could come this week.. so I'm sure we'll have many visitors.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 21, 2011 5:19 am
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Joined: Wed Oct 28, 2009 11:53 am
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Post Re: Last Days experience - with hospice care at home
This morning, the seventh without food or water, is the most difficult so far. It seems to me that Dale is still able to focus with one eye and his face cries out for help. I asked if he could hear me and he raised his eyebrows. I said I love you and I wish I could help you. (Oh, how I wish!!!)

He is miserable and as I changed his catheter, he was aware of every move and attempted to protect his private parts. The urine bag is heavy with the darkest 'tea' yet. His hands are ice cold. I'm sure the morphine has not yet taken effect this morning. He was sleeping soundly so I waited to give it to him.

I could have waited until the bathing aide arrived at noon to change him but the odor is awful so changing him and his bed pads seemed to be my best option. I think being clean will make him more comfortable. I also used a mouth swab (flavored foam on a stick) and lip balm on his open mouth. His lips still bite down on the stick. He lips are dry but not cracked.

Writing this is therapy.... so thanks for listening..... I do hope that sharing our journey will be helpful.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 21, 2011 8:16 am
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Post Re: Last Days experience - with hospice care at home
It is very helpful Leone, but I have to say I find it frustrating too, because all I want to do is be there with you both and to give you a big hug. Just know that I am there in spirit, as I am sure everyone on this forum is also. May God soon grant you both peace, and take Dale home. I honestly do not know what to say, but again I reiterate how you are such an amazing, strong person. Wishing you both the best , Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Mar 21, 2011 8:48 am
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Location: Vermont
Post Re: Last Days experience - with hospice care at home
My dad's memorial service was more like a party too. He was a very funny man, with lots and lots of friends and lots of jokes. So we reflected at his service the kind of man he had been. There was a lot of laughter, very few tears (mainly my sons who are in their 20's) and then we had a really nice lunch at the country club, where my parents had been charter members in the early 1950's. Dad would have been very pleased. It truly was a celebration of his life. So many of his friends his age could not bring themselves to see him his last week - it was too upsetting for them, but many had seen the shell that was left in his final days. They all showed up for the memorial service, though, and they laughed and thanked us for such an uplifting get together. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 21, 2011 10:20 am
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Joined: Wed Mar 09, 2011 12:22 am
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Post Re: Last Days experience - with hospice care at home
Leone, being a nurse and the "go-to" nurse in the family, I have been in attendance of many deaths. Of course, each person is different, but there is a commonality when death is sitting on the "edge" of the bed. I would not go by "death rattles" as an indication...congestion is too common among most of the dying. It is the sudden change in breathing that I have noticed. The labored breathing eases, and breaths become very spaced, and many times there is a calm. (I have seen the opposite too, but most commonly the calm) Sometimes they also "pluck" at the stars or fireflies over head...kinda like shooing/thrashing them away.

My heart is so with you. I have three friends (you included) who are sitting at death beds this very hour! I have two who are also waiting to give birth. I have attended both birth and death...and death leaves me in awe, not birth. Birth is wonderous...but death is awe-inspiring. Angels await to carry your LO into the spiritual realm and into the care of the Lord. The moment they pass, you are standing in the presence of their spirit and the angels of God.

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Mon Mar 21, 2011 11:34 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
dareitz wrote:
"death rattles" - sudden change in breathing - breaths become very spaced, - -- also "pluck" at the stars or fireflies over head...kinda like shooing/thrashing them away.
All of these have been observed this week. The 'death rattle' of Wednesday night was controlled with medication and has not returned.

Thanks for caring. I think he's praying... His eyes are red and pleading... It is hard for both of us. He can still raise an eyebrow and almost move his lips. Most other movements are probably involuntary.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 21, 2011 11:54 am
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Last Days experience - with hospice care at home
Leone, he knows you are there and what a great help and comfort that must be for Dale. You have been through so much. I am amazed by your strength. So many of us have you both in our thoughts.

Julianne


Mon Mar 21, 2011 12:05 pm
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Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
It has been on my mind all day that this is the seventh day without food and water. Dale's condition is awful ... and I must admit that the thought has crossed my mind that if I had decided on a feeding tube, he might still be where he was seven days ago. That wasn't well but that wasn't dying either.

He didn't want that ... and the sane part of me wants to carry out his wishes.. but watching him wasting away hour by hour is almost more than I can stand.

We are now giving him liquid Methadone 10 mg. He is softly 'rattling' again and moaning. More pain medication seemed appropriate.

One of his good buddies came by this afternoon and I'm sure the visit agitated him more than the usual visits. The buddy was uncomfortable being here and Dale may have sensed that. I'm really glad his daughter in law and 10 year old granddaughter did not come. I was unhappy with that idea.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Mar 21, 2011 7:12 pm
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