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 The Long Goodbye 
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post The Long Goodbye
Hi Everyone,

This has been a really hard week and i missed this forum so very much. I had some kind of glitch for over a week so I could not post at all. It felt incredibly lonely as I feel that you all are the people who truly understand. I am very grateful for the help from Matt Rife who helped me finally be able to communicate on the site again. It took me awhile to post because I am not in a place to be so encouraging to others these days. So many years ago I started the long goodbye with Mom and now we are at the end, I feel so many things I can't even begin to express. It is so hard to believe yet I am accepting it as best I can. Her decline has been very rapid since last week. She developed an upper respiratory infection and her body did everything it could to try to kick it, in fact it cleared up. But I guess the struggle has been too much for her body and now it is shutting down. She kept trying to get up each day and eat but wanted to sleep most of the time. Of course she started talking about God and her family and she was seeing them along with her usual friends and also my brother who passed many years ago. She took to the bed on Tuesday but was still eating and drinking a little and talking. By Friday, she would just keep her eyes closed and slept. Mom isn't talking anymore. Yesterday was very hard as she was up all night, moaning and agitated, didn't want any covers on her, wanted to get out of bed. moaning and was suffering. The meds and dosages from Hospice just weren't helping her at all. Today I think we have her pain under control and she is resting peacefully, I feel at peace that she isn't suffering. I will be up most of the night tonight to continue the medication regime to keep her comfortable. I just have to say, that I really appreciate this forum and the people that are here. I have been educated, supported and comforted here. I will continue to do the same for all that come here.

Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Sun Jul 18, 2010 11:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Long Goodbye
Nancy, I know you will keenly feel the loss of your mother but you know it's time. You also have the blessing of knowing you have done all that is humanly possible for her. I cannot imagine a more caring and devoted daughter. God bless you both!

_________________
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.


Sun Jul 18, 2010 11:55 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: The Long Goodbye
Thanks Pat,

As always, you are a wonderful support. As I read your post, I thought I can't imagine a more caring a devoted mother, she taught me well :-)

God bless you too and thank you so much for your kind words.

Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Mon Jul 19, 2010 12:11 am
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Re: The Long Goodbye
Dear Nancy:

It is the best of times, it is the worst of times. The conflict is never ending. We want our LO's suffering to end, yet we cannot bear the thought of them leaving us. Life was never the same once Lewy came into our lives, nor will our suffering end when their life ends. We must go on, we have others who love and look to us. It was comfort to me that I did all I could for Charlie, right up to his last breath. Knowing that continued suffering was infinitely worse than a final peace with God gave me the strength to let go.

May the Lord give you renewed strength and courage for your caring giving. I am so sorry you are going through this sadness and pray the Lord will relieve your mother's pain and distress.

Joy


Mon Jul 19, 2010 12:51 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: The Long Goodbye
Nancy,
I hope your mother's passing is very peaceful. It sounds like it will be. You've done your job very well...all that's left is letting her know again that she can let go and you'll be OK without her.
Robin


Mon Jul 19, 2010 1:12 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Long Goodbye
Nancy, You're right, your mother taught you well, you have had the chance to return all the love and care she had given you through the years. Just know she will no longer have to suffer and will be freed from this horrible disease. My thoughts and prayer are with you, Take Care of yourself.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jul 19, 2010 7:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: The Long Goodbye
Hi Nancy - sending you lots of warm thoughts and comforting hugs as you help your mom pass on. I know how hard that is - I was with my mom 24/7 for the last 4 days she was "alive" on life support. I was so comforted that I could be there with my kids, husband and other family members surrounding her when she died. Being with her these last months and days will be comforting to you after she passes. You have been doing a really hard job and the best you can under extraordinary circumstances. You take good care of you, too, and come here often for support. I'm sure you can also provide lots of great advice to others who are just starting on this very difficult journey. 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 Jul 19, 2010 9:40 am
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: The Long Goodbye
Thank you every one. I wish I could say that things stayed better but it turned out we didn't have Mom's pain under control. I was up all night giving her meds every hour but this morning she was still having a lot of pain. The taste of that stuff (sub-lingual morphine) must be awful because she always moaned every time i had to give it to her. I just knew it gave her a few moments of relief. The hospice nurse thought that maybe it was urinary retention so we had to put her through the pain and discomfort of putting in a Foley catheter. Still no relief after causing her all that pain putting that thing in. In fact it just made her more uncomfortable and she started pulling at it. I asked her if she wanted it out and she nodded yes. So I called and asked what the point was, after several hours no urine in the tube and bag. I took it out. I promised her we would get this fixed if I had to call them every five minutes. Finally this afternoon we started a sub cutaneous morphine pump and for the first time she is resting and truly looks to be at peace and comfortable. I have such joy about that I can't tell you. In the middle of all of this the priest came to give her the last rites and that was the only other time I saw her at peace all day. Hopefully this will help others who are on this journey too.

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Last edited by NancyC on Mon Jul 19, 2010 10:43 pm, edited 1 time in total.



Mon Jul 19, 2010 10:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: The Long Goodbye
Hi Nancy - I'm glad your mom is now on morphine to make her comfortable. Hang in there and I hope you can get a good night's sleep 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.


Mon Jul 19, 2010 10:31 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: The Long Goodbye
Hi Nancy. I'm so sorry about what you're going through and that dying isn't more peaceful for your mom. My dad just died and we were lucky that it was fairly peaceful, especially on the last day. Hospice really helped us, but then my brother and sister in law slept in the same room with him and took care of all the meds. I was like you when an intervention was called for (your mom's catheter). I got upset when we were given the instruction to move him every hour because of a bedsore. I couldn't bear to watch his agony and agitation when we tried to move him. It seemed cruel. finally, I got my brother and sister in law to agree to simply prop a pillow under one side then the other, which seemed less painful. My dad wanted to sleep on his back and it seemed the least we could do for him. I hope you are able to get some sleep. We held vigils every night until we were all exhausted. I was so tired that my own cognition was questionable and I even experienced auditory hallucinations. Is there an aide that can spell you so that you can talk a walk? I found that short walks helped, even sitting in the sun helped. God bless you for giving your mother this gift. I know in the long run you will never regret the pain you are experiencing now.


Tue Jul 20, 2010 2:12 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: The Long Goodbye
Again thank you all for your support and encouragement. It means so very much to me. Unfortunately, again this morning we still didn't have Mom's pain under control. At first the hospice Dr. resisted the idea for the family to be able to give Mom a bolus dose of the morphine to keep her more comfortable. It is crazy. These machines are programmed not to allow you to give more than one bolus for a specific time period but she was worried about it. The nurse had to practically beg her to get it for Mom and the nurse said that most of her other patients in Mom's stage had this because they had other MDs managing their care. And this Dr. has been to see my Mom just once in the 5 1/2 months I have had her home. How the heck can she even make that assessment of what she might need? It is insane. I was planning to call her and tell her to get her butt over here and do an assessment if she didn't trust what the nurse was telling her. I do plan to write her a personal letter about it once all of this is over. Once it was ordered, It took well over 5 hours to get Mom to the point where her pain was actually managed. I am angry about it and writing so you all are aware that this is sometimes the stuff you have to deal with. Mom seems to be at peace now, still conscious and responding, but significantly less pain. I just hope and pray that she isn't going to go through the same thing tomorrow. Any of you who read this tonight, if you are so inclined please do say a prayer that this part of my mother's suffering is over.

Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Tue Jul 20, 2010 9:39 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: The Long Goodbye
Nancy, I am sending you prayers that your mother is more comfortable now. There's nothing worse than to see your loved one in pain. I have a terrible doctor story to share. My dad's final hospitalization was in an emergency room, where he had been several times, trying to get to the bottom of his chest pains. That last time they took x-rays of his sides and found a ruptured ulcer, which had apparently been the cause of the pain. The doctor came into the room, stared at dad and said "You have a big hole in your stomach. Without surgery you'll last two day." Can you imagine the heartlessness of that? I hope your mother's doctor will indeed visit her.


Wed Jul 21, 2010 2:10 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: The Long Goodbye
Nancy,
My heart goes out to you and your mom. I certainly am praying tonight for her to be comfortable and free from pain. I also pray God will overwhelm you with strength, rest, and peace. You've been blessed to be able to take care of you mom at home and I'm sure she appreciates it and that it brings her great peace knowing you are there. I take care of my mom at home too, so I understand what you mean by the "long goodbye". Since they're not capable of the mother/daughter conversations we used to enjoy with our moms, it does feel like we started saying our "goodbyes" such a long time ago. God bless you.

Kitkat


Wed Jul 21, 2010 10:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: The Long Goodbye
I heard this wonderful story at my support group yesterday. A woman whose father recently died after 6 months with cancer told this to the group.
Her dad was near the end, in a lot of pain, and needed a lot of assistance with everything. She told her dad she was so sorry for the pain he was in, and he responded "I'm doing this for my family." She asked what he meant, and he replied "I am going through this terrible death from cancer so that after I die, you'll be happy that I am no longer in pain. If I just died suddenly you would all be so sad and I don't want you to be sad after I'm gone. This way you all will feel some sense of relief."
What a parting gift he gave his family. 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.


Thu Jul 22, 2010 1:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Long Goodbye
That's a good one, Lynn!

_________________
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.


Thu Jul 22, 2010 3:50 pm
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