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 Last Days experience - with hospice care at home 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: Last Days experience - with hospice care at home
Leone, when planning for Mr Bobby's funeral, someone from Ponchatoula Voluntary Fire Department of which we have long been associated, called and said the men wanted to know what they could do. I answered, "everything". They did! They marched in review, it was so touching to watch each of them give Mr Bobby a goodbye salute with solo private time at his coffin. When the services were finished, they were waiting to put him on the fire engine and carry him to the cemetery... such care I could not have asked for more... as the truck with many firemen riding on the back left the cemetary, they delivered a moan from the normal whistle sound as they drove off. Please continue to plan with out boundaries for Dale... you know him best.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Mar 21, 2011 7:33 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 for writing, Dorthea. The mental image of all you described makes me smile. What a great send off!

I hope we will do as well for Dale. He was a super fun loving guy.

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


Mon Mar 21, 2011 7:53 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
Dorthea - that sounds just wonderful! Good for you doing what you thought he would have loved, and not worrying about "what's acceptable" or what's traditional. That really made me smile too!
The only thing at my dad's service that was sad was that we had an Army honor guard play taps and present the flag to my children. There were tears at that point, buy I knew my dad wanted a military component to the service when he died. That part was really hard on my sons.
The rest of it was all celebrating his life in an uplifting way. There were things about it that some relatives didn't approve of, but we did what we thought my dad would like and didn't worry about what other people thought. 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 11:34 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
It's hard to die. The body does not want to give up. This is the eighth day without food and water. There is no sense of recognition this morning. I'm not sure if he is sleeping or comatose. I'm keeping the morphine and liquid methadone going.... He is breathing quietly with just a hint of 'rattle.'

The body keeps producing dark 'tea.' It wants to drain until what's left is skin and bones. But, at this stage, the body isn't dry. It's clammy so we keep washing it - hopefully for comfort. The dark blotches caused by lying in one position are about the same.

I tried to shave him two days ago ... and he objected. It must have hurt so I'm not going to do it again. The hair isn't really growing anymore.

The hospice aide who comes every day to wash him and help change his bedding has become a close friend. I look forward to her visits.

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


Tue Mar 22, 2011 9:03 am
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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
That last stage can take a long time Leone. For my uncle it was 15 days. It seems like forever to the family and friends, especially the one(s) staying with your LO 24/7. It is hard to watch someone die. 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.


Tue Mar 22, 2011 9:51 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
My mother was 12 days without food and water. The hospice nurse said 7 to 14 days. I go to him about every 10 minutes and assure him that I love him and care about him.

He now has two open sores - from just yesterday. We had a pillow under his feet and a towel between his legs but he moved one foot off and now has an open sore on one heel. The other sore is on the back of his shoulders in another place from the first one. They told me to move him every two hours... but that is very hard to do. I can see that it is important though.

Someone clever needs to invent some sort of special padding that will cradle each leg. The Tempur Pedic pad didn't help though maybe it would have been worse without it. Maybe the legs need to be encased in foam. I had sox on him and that didn't prevent bruises.

A year and a half ago, Dale wanted to wear a condom catheter and that's been a great success for us. I'll bet he would have wanted protection from bed sores too.

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


Tue Mar 22, 2011 11:45 am
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Joined: Mon Mar 14, 2011 12:23 am
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Post Re: Last Days experience - with hospice care at home
Keeping you both in my prayers -how very hard this must be. Many years ago I elected to have a feeding tube put in for an elderly friend for whom I was power of attorney. I had no knowledge of what a feeding tube would entail. I learned from that and would not do it again. Her last months were spent hooked up to the solution ( it take s a long time for a feeing this way) and I can't say there were any more quality moments after the tube, she died several months later. Wishing peace to you both.


Tue Mar 22, 2011 1:06 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
Cara... It's interesting that you should mention the feeding tube idea.

Dale's daughter in law called this morning and asked, "Couldn't they feed him interveineously or with a feeding tube?" I said that's not what Dale wanted. She then said, "How did you know he couldn't swallow." I explained that I put applesauce in his mouth and it just stayed there. I had to scoop it out. Then, I tried to give him something to drink and he gagged on it.

She then said, "Couldn't you puree the applesauce?"

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


Tue Mar 22, 2011 1:15 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
Oh my, Leone, I'm sorry these questions came up about feeding and hydration, but it's just hard for someone who isn't present to understand what is going on when the body starts shutting down. In any case, you are doing what Dale wished and that's the important thing.

I'm thinking of you often, wishing a peaceful transition for Dale and relief for you both.

Julianne


Tue Mar 22, 2011 1:47 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
As ever, Leone, you are both in my thoughts and prayers. Ask his angels to take him home, because I know you have to ask angels for help when you need it. God Bless you both xxx

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


Tue Mar 22, 2011 2:06 pm
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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,
Don't feel bad about your decisions. You are the caregiver and the person who is supposed to be "one" with him. He made his wishes known, you are carrying them out. That IS being "one."

I wouldn't feel too bad toward the DIL...she is desperately seeking solutions for you and Dale. She does not know what goes on between the two of you...she has HER husband. Even the children are somewhat "afar" when it comes to this final stage, unless they have been the caregiver.

This disease is hard to understand and deal with, muchless to explain. You are coming to the end, soon. God give you peace.

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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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Tue Mar 22, 2011 2:09 pm
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Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
dareitz wrote:
she has HER husband.
You are a new friend and I appreciate your caring responses. Those who have been with me on this long journey know that Dale's bipolar son, her husband, died in prison. It will be two years ago on March 27th.

That's the 'elephant in the room' here... She was tired of dealing with his bipolar episodes and was planning on a divorce. She had filed the papers while he was in prison but he died because of a change in meds before they were signed.

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


Tue Mar 22, 2011 2:26 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: Last Days experience - with hospice care at home
Leone, it breaks my heart that anyone would question the care you give to Dale. I can only say this person does not have any idea what is going on. She could not take it. But you do. You are there for whatever comes. Accept those who are positive and give no time to anyone who says such idiotic hurtful phrases trying to make you second guess yourself. This is not the way you would have wanted it... not in a million years but this is what it is. We who are on the forum are more than proud of you. May God hold you close through the end. Dorthea


Tue Mar 22, 2011 3:26 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
Thank you, Dorthea. As you probably know, the decision to stop feeding Dale was the hardest I've ever had to make. I can't imagine a more difficult one. I have a kitchen filled with food he likes. It is so painful to think he can't enjoy any of it. I sat beside him for several minutes in total frustration when I realized that he could not swallow.

However, I do understand the desperation that prompts the questions. No one wants to accept death as the only option. Even when we believe something better is waiting on the other side, we're not in much hurry to get there or to have our spouses go there.

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


Last edited by Leone on Tue Mar 22, 2011 4:57 pm, edited 1 time in total.



Tue Mar 22, 2011 4:01 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: Last Days experience - with hospice care at home
Alright, Leone, now its you calming me down. This is not the way it is supposed to work. I'm alright with the remarks if you are. I guess I just feel so protective of you at this time. I remember grandchildren begging me to do something to help their grandmother when Mr Bobby's mother was at the stage that Dale is right now. I asked them if they wanted her to continue living like that. They were sad but they understood there was only one way for her suffering to be over. ... Family dynamics is never so obvious as in a time of crisis. Dorthea


Tue Mar 22, 2011 4:28 pm
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