View unanswered posts | View active topics It is currently Thu Oct 23, 2014 2:51 pm



Reply to topic  [ 67 posts ]  Go to page Previous  1, 2, 3, 4, 5  Next
 Last Days experience - with hospice care at home 
Author Message

Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Last Days experience - with hospice care at home
Leone wrote:
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.



WELL, nothing like being the new kid on the block. :oops: I was wanting to use that red faced smiley for something....haha

_________________
~~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.
Image


Tue Mar 22, 2011 5:42 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Last Days experience - with hospice care at home
Mostly friends and family supported what I was doing to take care of my dad, but once in a while someone would question decisions that I or my sister and I made. I'd just calmly respond "have you visited my dad lately? Have you tried to do x,y,z with him?" I'd be very polite and respectful, and when I'd ask those questions they would stop and think and get off my back. One person said "why don't you have your dad stay at home and have caregivers come in?" She was very upset he was moving to anALF. I told her he didn't have $20,000 a month to spend on caregiving for who knows how long. When I drove her to see him a couple of months later it was a real eye-opener for her about the level of care he needed, and she never questioned our decision after that.
You just have to do what you know is best for your LO and you.
Lynn

_________________
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 9:43 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
No problem, Debra.... and I agree, Lynn.

This - the eighth day - has been a busy day with house cleaners, bath aide, pastor visit, and visiting friends... and I'm worn out. I took a long late afternoon nap and had a nice chat on the phone this evening with a close girlfriend who called ... but the waiting is getting to me and I can't deny that. So far, I've been able to keep busy and that helps ...but when I get tired, the reality of what is happening sinks in.

Dale was obviously in pain this afternoon and that hurts me SO MUCH because it is so beyond my control. His methadone was increased so I'm hoping he will have a peaceful night. I checked his pressure points tonight so I'm so hoping he won't have more open sores tomorrow. He does not like to be moved and they told me to move him every two hours. That's unreasonable.

One tiny thing annoyed me today. One hospice nurse told me I could give Dale the morphine every four hours and she said I might as well do that. Another nurse called today and seemed alarmed that I was giving Dale morphine every four hours. Again, we have medical advice that is conflicting.

Isn't that the story all of us can tell of our adventure with Lewy? The medical people never seem to agree.


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


Tue Mar 22, 2011 9:54 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Last Days experience - with hospice care at home
You said it Leone. I often felt like dealing with my dad's meds was like juggling balls, and everyone had a different opinion about what to give him and when. I was so glad when the new director came into the ALF where he lived. She was a BSN, had lots of ALF and SNF experience, and I'd talk with her, then advocate for him with better data.
Hang in there. Can you leave for a few minutes and have someone else sit with Dale? Even get out of the house for a 15 min. walk or something? Big hugs, Lynn

_________________
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 9:59 pm
Profile

Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Last Days experience - with hospice care at home
I would think the nurses would HAVE to go by the orders of the physician. If he orders Morphine every 4 hours as needed, then you can give it every 4 hours as needed.....no nurse can interprete this any other way. YOU decide if it is needed. Nursing has changed since I was a nurse..of course I was old school. We stood up when the Dr came into the nurse's station and offered him our seat. We also followed dr orders to the letter, no more, no less. our job was not to direct medical care, but provide it AS the dr ordered it.

_________________
~~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.
Image


Tue Mar 22, 2011 10:05 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
That's an excellent idea, Lynn. I think I need to ask the caregiver to come for a while tomorrow. My mental health is at stake! :mrgreen: You've improved my mood... Thanks, dear! (I'm not using the hospice volunteers. I have continued with the paid caregiver. I didn't want unfamiliar people showing up for Dale's sake.)

I do want to say that the hospice aide who has come EVERY day to help clean Dale and change his bedding has been MARVELOUS. She has done that job for 15 years and she is a total professional. I would like to give her a medal. She is comforting, assuring, and efficient. It's a beautiful combination.

Originally, they told me that an aide would come only three times a week... but I think this relationship is a bond that will go on even afterward.

I also agree with the post regarding the meds. The bottles do say, "As needed." That's clear, isn't it?

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


Tue Mar 22, 2011 10:14 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Last Days experience - with hospice care at home
Leone, how wonderful that your aide is so compassionate, competent and caring and that you are comfortable with her. A blessing, to be sure! You are in my prayers!!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 22, 2011 10:51 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Last Days experience - with hospice care at home
I also remain friends with my dad's favorite CGs. They became part of the family and I miss seeing them every month. But, some of us call one another, send cards, etc.
I'm glad you are going to give yourself a short break. It's just too much to be there day after day, every hour. You'll feel a little perked up, I'm sure! Hope you can sleep well tonight, Lynn

_________________
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 11:05 pm
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Last Days experience - with hospice care at home
Leone, you, and only you, really know what Dales needs are. I am not putting down the professional in any way, but what I am saying is that you have an instinct that none of these professionals have. It is like we were told when our babies were young - mothers know best. We have an intuition regarding the needs of our loved ones that no amount of college or diplomas will be bestowed on doctors, nurses etc. I am not, in any way, disregarding any doctors, nurses or professional carers, as they do wonderful work, but I am just saying that you instinctively know what Dale needs right now, and I think going with your gut feeling will be the right decision - whether it be regarding meds, or moving him, or whatever.

You do need some space, even if only for a few minutes. Do you ever do meditation? I find it a great help. I know its difficult in the situation you are in, but if you could find a way to distract yourself for even 10 mins. My thoughts and prayers are with you both as always, God Bless,
Ger xxx

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


Wed Mar 23, 2011 9:22 am
Profile

Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Last Days experience - with hospice care at home
Leone,

I hope today is peaceful. My mother passed at home with me. I am glad you are giving the medicine to calm the death rattle. My mother had it and I didnt want to give her anymore meds. They said that the rattle didnt hurt Mom so I thought I could stand it. It was soooo bad, I should have given the med so I could handle it. I am trying to remember but I think she had the rattle for a couple of days. I took a break, went upstairs, got on the computer for a few minutes, back down to check on her and she had passed. Part of me wishes I had been by her side when she took her last breath. I thought we had more time.
Sharon E.


Wed Mar 23, 2011 11:07 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Last Days experience - with hospice care at home
Sharon, that happened with my father, too. I went to bed for a much needed few hours of sleep and he died within an hour. My brother and sister were with him when he just stopped breathing. As I have posted before, I was very distraught being unable to tell him a final 'goodbye' but now I realize that, because I was his primary caregiver, he might have been hanging on for my sake. After reading others' experiences on this forum, I see it happens far too often to be a coincidence.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Mar 23, 2011 11:17 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Last Days experience - with hospice care at home
Dale left us just before 7 am this morning. I had just given him his first pain medication of the day. I had placed my left hand on his right cheek and told him that I hoped the medication would help take away the pain. His breathing stopped and I waited for about 15 seconds. A second breath ... and he was gone.

It's such a blessing.... He is free of pain. I wanted that for him. He has gone on to a better place.

He would have loved knowing that Elizabeth Taylor died on the same day. That would have tickled him.

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


Wed Mar 23, 2011 12:21 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Last Days experience - with hospice care at home
Leone, it must be such a huge relief to know that Dale's suffering is over, and a great comfort to know that you took care of him to the last. Now, I hope you will take good care of yourself. My condolences to you and your family.

Julianne


Wed Mar 23, 2011 12:25 pm
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Last Days experience - with hospice care at home
Leone, my condolences to you. You were a strong, caring wife and now I hope you can rest and relax, knowing that Dale is finally at peace. Take care, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Wed Mar 23, 2011 12:38 pm
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Last Days experience - with hospice care at home
Safe home, Dale.
My sincere condolences Leone.
Dale must be so proud of you that you hung in there till the end, and I'm sure now he will be glad of the opportunity to look after you.
God Bless you, and now let everyone care for you.
You are in my prayers, Ger x

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


Wed Mar 23, 2011 1:12 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 67 posts ]  Go to page Previous  1, 2, 3, 4, 5  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr