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Topic: Response to Alla's posting

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Alla….. I have learned that the use of TPN in bowel obstructions is controversial.  In one way it can prove to be life extending; on the other hand though there comes a time when it provides no benefit to the patient in fact, it may prolong suffering.  It was difficult for my husband to understand that refusing to let go of the TPN did not prevent the inevitable. 

I strongly believe that our loved one has the right to make choices of how he/she wants to proceed with an illness.  My husband wanted to do whatever he could as long as he could stay alive. 
I  honored his wishes.  It was only then when all signs of impending death became apparent that I stepped in and made the choice of my heart.  I called in Hospice, TPN was removed and the morphine pump was attached. It is important to know that his nausea and vomiting subsided within minutes.   He passed the following day. 
My husband was at home - where he wanted to be.  However Alla, a nurse was with us daily for the last two weeks; physicians checked in on us regularly (he had many friends) and due to the close contact with his doctors, I was able to control his pain well, but the nausea and vomiting became a major issue to the point that even saliva caused him to vomit.   
Alla,  what are your husband’s wishes?  Does he prefer to stay in the Hospital?  Are you able to tend to him at home, with Hospice? 

It is difficult to see beyond our fears and wishes, but ultimately the decision has to be made as to what is best for your husband and for you.  This is a discussion I would have in the presence of the doctor. 
My heart is with you,

Hugs,

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
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Re: Response to Alla's posting

Thank you, Marion. I think we found a hospice that would allow TPN. Now checking if insurance would pay for it. That is what he wants as well. Basically he does want to prolong it, but we also discussed that if it gets unbearable, as in vomiting non stop - then we will make different decision. We decided its worth a try. And for my piece of mind, I'll know we tried it all. Otherwise if he decides to go without tpn, you can't change your mind later. If it doesn't work out with insurance, then we'll continue with home health. In either case, he will be home. There is no hospices here that have in-patient facilities. For now, they removed NG tube completely and we are waiting to see if he can manage pain and nausea. Thanks again!

  • Lainy
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Re: Response to Alla's posting

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Dear Alla, I feel you have come to a good decision. It is most important to control the pain and vomit.  I am glad that your husband is going home with Home Hospice.  There is nothing like being home. Sending a ton of hugs and prayers your way. Be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 12 May 2006
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Re: Response to Alla's posting

Alla...fingers are crossed for control of nausea and pain.  Please, keep us posted.
Tons of positive wishes are heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Roanoke, VA
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Re: Response to Alla's posting

I appreciate it.

  • From: Roanoke, VA
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Re: Response to Alla's posting

Thanks, Liz
Well, husband is home now, but pain is not under control. Took a whole day to get him home, lots of waiting - for doctor's orders, for home health nurse to bring pain pump, for hospital bed to be delivered and set and so on... A lot of coordination between different agencies. Glad that part is over. Pain wasn't quite under control in the hospital either. Hospice nurse said his settings on a pain pump are way too low and was going to talk to his doctor tomorrow about trying out morphine 2 times a day (just what you said, Lainy!) + prn meds and/or getting pump settings up - increase the doze. She also said that patches usually work less efficiently on skinny people, as it needs fat tissue to get absorbed, and my husband as skinny as can be right now. So she thought it'd be better to switch him from pump/patches to morphine...We'll see what the doctor says. She also wants to try dulcolax suppositories for him to relieve stomach pressure (if doctor approves). She seems efficient and pro-active. Not sure if she'd be his main nurse or not - it was after hours visit, therefore it was on call nurse; will find out tomorrow. Not quite used to whole hospice idea, time will tell. Thanks for listening!

  • Lainy
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Re: Response to Alla's posting

Dearest Alla, I am so very glad you are both home and that Hospice has started. OMG, I was right about the Morph????  Yikes first time this year! LOL I just want to see them get your husband pain free or close to it! It is all strange but just give them the chance. Not sure who you will get we had quite a few different Nurses. Not to worry though as they look up in their computers to see what the others have noted. Once he is settled with all that he needs it runs like a well oiled machine. You are almost there. The Morph is binding so the Ducalax is a good idea. Do not be shy about asking for things or asking questions of Hospice, that is why they are there. Welcome home!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 12 May 2006
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Re: Response to Alla's posting

Alla....great to know that you are home again.  Alla,  Percy posted a link which also addresses constipation: 
You will have to scroll half-way down.
http://www.cholangiocarcinoma.org/punbb … 520#p66520
The article also refers to suppositories for those suffering from chronic constipation while bedridden.   
Is George laying flat or is there a specific position he feels most comfortable in? 
Alla…I sure hope that you both will be able to get some rest tonight. 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
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Re: Response to Alla's posting

Thanks, ladies. Marty had a rough night. I woke up to check on him, he was in a lot of pain, saying pump is not working and asking how to hook it up. It was working for me. I guess he was in so much pain, he couldn't think strait. Gave him last 20 mg oxicontin, 5 mg oxycodone and after a while he fell asleep. Called hospice to speed up the changes in pain meds... Dropped of prescription for morphine spray (prn). First they said they didnt have it, then found it. Will pick it up soon. Hope all will get resolved today... Frustrated!

  • Lainy
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Re: Response to Alla's posting

Alla, you are doing such an amazing job of taking care of Marty, hang in and be strong. I have one question, when ever Teddy needed drugs I NEVER had to run out to get a thing. They delivered daily to the house. Its an extra step you don't need, that is if they deliver. Have you got anything left to give him in case the Morphine spray does not work or you run out.  I had a little box of emergency things they gave me to keep in the Fridge. I hope Marty can have a pain free day.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
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Re: Response to Alla's posting

Thank you. Pain is a little better - nurse stopped by and increased the dosage on the pump and I got liquid morphine for the mouth. But he keeps spilling stuff from his urinal or missing it, confused at times… Scares me, when I ask him question and he just stares at me… A lot of times not answering at all. Not sure if it's from meds or is he progressing sooner than I expected. He is sleeping now. I thought we'd be talking today about important documents, his wishes etc, but he can't even carry on simple conversation about his pain level. Seems like he answers one time, not answer other at all, then fusses at me that I already asked the question - seems like in and out at times. Then he winked at me. I'm so confused! Yesterday his mind was fine.
Let me know if you experienced something like that?

  • Lainy
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Re: Response to Alla's posting

Alla, this is a difficult question. It could be progression it could be MEDs. You blew my mind when you mentioned the winking. Teddy always used to wink at me to let me know things were OK. As for the confusion Teddy never had that but he did start getting nightmares and they gave him Haledol (sp) which worked for that. Most important is the pain control and I am glad that is better. Make sure to mention all your concerns to Hospice when they come each time. I am here if you need me and will answer as much as I can.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Roanoke, VA
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Re: Response to Alla's posting

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Thank you, Lainy
It shocked me how much worse he got in one day, that's why I'm hoping it's meds. Yesterday he walked, took steps, walked to the bathroom, but today - confused, can't carry on conversation, stares a lot. It took an hour to go to use a bathroom. On the way back we had to use wheelchair. I'm just surprised how quickly it changed. Is it possible to progress this quickly?
And I did absolutly nothing that I planned for. Constant phone calls, people come and go, deliveries and the main part - taking care of my hubby. But I must admit - seeing him like this, I think will make it easier for me to let go. I don't want him to suffer. I just wish he regains his wit enough to talk to the kids and tell them what he needs to say to them. And tell me his wishes, as I still don't know!
His older son is coming tomorrow and he is a PA, so hopefully he'll help me with care and explain what is going on...

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Re: Response to Alla's posting

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Alla, it's all ok and will be ok. I just talked to Lynn and she is just about where you are. I believe that both your wonderful husbands are in their own peace as they prepare (I like to call it prepare). Everything will calm down once you get all your deliveries and people stop coming. Just a suggestion, as we got closer to the end I stopped all phone calls and instead made an e mail list at which time I updated family and friends every evening. I actually asked people not to call and they were all so good about it. So much easier than answering calls. I limited visitors to 2 at a time and for short visits. I felt more was too hard on Teddy and me and if someone wanted to see him they deserved to have the one on one visit. Hoping everything calms down for you tomorrow and you can concentrate on just your little family. Even if hubby is sleeping you might want to let the kids talk to him as he will hear them. I really understand your preparing as well because sometimes we just have to say, enough is enough. As for his wishes if he doesn't let you know you do the best you can, no one can expect more.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Roanoke, VA
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Re: Response to Alla's posting

Thank you, Lainy. I appreciate your kind words and wisdom. He is sleeping now and I'm trying to relax. When I asked about pain earlier, he said "no", but moaned when tried to lay down. Not sure if I should trust his answers. Periodically he gives answers that make no sense, while other times answers fine. Got him bedside comode, hopefully it'd be easier for him to handle.
Planning to talk to the kids tonight. Not looking forward to it...

  • Lainy
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Re: Response to Alla's posting

Alla, I think after you talk to the kids you will feel a big relief.  That has to be the hardest thing to do. Teddy had a very high pain tolerance but it seemed that Hospice had a way of really nailing it down, they were really good in home. My mind is with you tonight! Be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Roanoke, VA
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Re: Response to Alla's posting

He woke up tonight and gallucinating... Seeing bats flying, kids eating, not recognising the room he is in and worse - trying to pull pain pump tubing, getting agitated. Then talked to me about getting up early and painting. Scared me! He did know I was his wife, but everything else didn't make sense. Gave him ativan to calm him down. Called hospice - I think doze is too much. Nurse is on the way...
Told one of the kids 6 years old. He cried, then asked if he would have another new dad. What a fun night I'm having...

  • Lainy
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Re: Response to Alla's posting

Oh, Alla, I am so very sorry to hear all of this. Did they lower his doses? I am heartbroken about your little boy. I am at a loss for words. Just know that I am with you in mind and spirit and if it was in my power to make everything better or go away I would! There is just so much love pouring out to you and I hope things calm down and improve as they find the right doses for your hubby. Sending you the biggest hug ever!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Roanoke, VA
  • Registered: Fri, 05 Oct 2012
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Re: Response to Alla's posting

Thank you, Lainy
Yes, nurse came and lowered the doze (it was 0.5 yesterday per hour, then 1.0, now 0.8). He was telling nurse about getting up early and feed the horses... We don't have horses - he had some years ago in California. I gave him another Ativan, so hopefully he won't start pulling the tubes out again.
Talked to our 15 year old, cried together and hugged. Hopefully he will come to me to share what he feels. Got some booklets for him to read from hospice - about grieving for the loss of the parent.
6 year old now acts like nothing ever changed. I've read in the booklet that it's normal for kids 4-7 years old.
It is easier that I shared this information with them. If only my hubby get back to the right mind!
Found old baby monitor and will try to use it tonight. I'll keep you posted!
Thanks for the hug!

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Re: Response to Alla's posting

Alla...I so much hope for an easier night.  You have so much on your shoulders yet, you are holding everything together for all.  I am glad that Marty's older son will be by your side tomorrow. 
Hugs and love,
My heart is with you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Roanoke, VA
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Re: Response to Alla's posting

Thank you, Marion. Hubby is still confused, pretty much on a different reality. Talks about something that makes no sense or about something that is not happening.
Sensitive
Got new problem - bleeding either from rectum or pee, not sure. Discovered after he used bathroom. Called hospice and they contacted doctor - most likely from bowel obstruction. Nothing they can do... Part of a process, they say.
Can't wait for his son to get here, so we can evaluate the situation.

  • Lainy
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Re: Response to Alla's posting

Alla, Morning, I got up early and saw your post. When is his son getting in? I am so glad that you will have him there with all of you. I hope you got some rest, yesterday was a bear for you! I will be watching for your updates and be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: NSW,Australia
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Re: Response to Alla's posting

I think you may get a window of clarity here and there and you can take advantage of that when it occurs to chat.
Pretty awful symptom to deal with ,the bleeding,even though its part of the process,it makes us panic a bit to see it.
I think he is declining quite quickly now so I am glad his son is on his way and if there are other close friends and family,gather them around.
                          Janet

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Re: Response to Alla's posting

Alla,

I am so sorry to hear of what you and your family are going through.  Many of us have been through the same and know how you are feeling.  I am glad to hear his son will be there to help and support you.

Many thoughts and prayers coming your way.

Take care.

Love & Hugs,
Darla

"One Day At A Time"

25 Reply by marions (edited by marions Sat, 13 Oct 2012 11:36:25)

  • Registered: Fri, 12 May 2006
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Re: Response to Alla's posting

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Alla....I hope that his son has arrived. At this point I switched over to dark blankets, sheets and towels.   
May strength and love continue to surround you in this difficult time.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER