What does the end usually look like?

[bohojack]

I have read on here a few times about people being in bed sleeping a lot, losing color and just generally declining right before the end, and a few cases of people seeming to bounce back and have a last burst of energy before declining again... I'm wondering how common this is? What does the last stretch usually look like?

Mom has been mostly bedridden for the past year as she has paraneoplastic syndrome as well, but she would normally be awake, able to talk and socialize and get up and down a few times during the day. When she was on steroids she could move around almost normally, if still stiffly. The homecare nurse has suggested we make 'preparations' and asked if she wants to be in hospice, etc. She's pretty much been in bed sleeping since last Monday, with one or two good days here and there. Her color is pale and she seems weaker and more confused. She'll slip back into sleeping in the middle of a sentence and gets huge headaches from just moving. It's hard to get her to eat or drink, and my whole family is very worried. My dad is next to her all the time now and every time I go in their room he seems to have a scared look on his face, just under the surface, without meaning to.

Is this what things usually look like? They said we might have up to 9 months but now none of us are so sure. I guess I'm just looking for some advice, reassurance, I don't really know. Seems like a question you wouldn't generally want to know the answer to even if you could...

[Nick C]

There is no way to know. We were told my grandmother had a day, she made it 8. I think we can tell you what it looked like for us...but it doesn't mean that that will be the same for you.

Your home aid has probably seen things that give her a database of knowlege that none of us have here. Doesn't mean she's right...just means her guess is more educated. Hospice doesn't mean you've given up, and calling them can be a great informative support to your family.

[RandyW]

This is a tough question to ask let alone answer I think!!

My experience with the end was very different I have to say but I will tell YA about it briefly.

Deb was home with me on friday having dinner around 6 and she started gulping for air. She couldn't catch her breath. We called 911 and she was rushed to hospital. SHe did well for a couple of days. She could eat and move around and what not on her own. every once in a while she would start gulping for air and she had a treatment (Nebulizer) and occasionally a morphine shot for the pain. Suddenly in the middle of the night the nurse did not hear her suddenly and she just stopped breathing. By the time they got to her it was too late! She was thinner than i had noticed previously.

Everybody is different.. Deb was only 50 so that probably made a big difference.

Something she said before she passed I will never forget is this though.

"I am tired of this. IF I see the light I am going to it. I won't turn around and look for it though. But IF i see it that's where I am going!"

Share this with your Dad! It has helped me quite frequently and Might help him a little bit also!!!!

Prayers and Hugs for peace and Comfort

[Carleen]

I think the end is different for many people.

For my husband, it was a lot quicker than I expected. On Friday he was racing me through the hospital pushing me in a wheelchair after I completed an invetro fertilization treatment. Monday we went to the hospital for a pain in his shoulder and after that, he seemed to immediately just slip away from me.

While in the hospital he slept all the time. I thought it was because they were giving him so much pain meds. He was never on a ton of meds before and now he had an automatic pain pump that kept him doped up and sleeping all the time. We decided to bring him home on Wednesday. Doctors told me they thought he only had a few weeks left.

That night when we got him home, he was so groggy and just couldn't stay awake, by the middle of the night he wasn't even talking, barely getting the point across that he had to go to the bathroom etc... Some time during the night, around 3 AM his breathing changed to something a little more shallow and raspy. His color also changed to not only paler, but a more blueish cast, and the most telling thing was that his skin was so cold to the touch. I'd kiss his lips and they were always so warm and soft, and now they were cool. He passed at 9:54 AM. He was sleeping and his breathing got louder and he was moaning, not like in pain, but almost like he was just vocalizing. We gathered around him to pray and he quieted. We thought he was listening or sleeping more peacefully, but then he gave out a few Gulps and gasps for air and it was over.

To this day, my biggest regret in my whole life is my wondering if giving him those pain meds shortened his days. Even if it was only by a few weeks, did I rob him of those weeks. He was completely alert and 100% mentally there up until the moment that pain pump went in. I hate doubt. I wish we could see the future and know the right decisions ahead of time. Then there would never be regrets.

I'm sending you prayers for you and your family. God Bless you