CSN Login
Members Online: 12

Nasty road

jenene
Posts: 40
Joined: Oct 2010

I think that today was the start of our nasty downward spiral of death. I woke to my husband telling me he thought he has pneumonia again. Mucus/bile everywhere (clothing,bed floor). Hospice came, no pneumonia but did do a little fluids. She said this mucus is the dying process. His body is unable to move the secretions being made so he is coughing/gagging them up. All day long I got to see him talking gibberish. Not sure if it is the drugs, just started Morphine Friday, or the death coming. He is so weak that he tripped over the dog today and smacked right into the wall. He didn't want help up so I got to watch him sturggle to right himself. I don't blame him, what 38 year old man would. Now I sit hear listening to him wheeze and cough in bed knowing that I can do nothing about it. More drugs and lots of love. The hospital bed comes tomorrow. Hopefully I won't wake up to too much of a mess tomorrow. I know I will have a long night thinking about him. I wanted this to be quick. I want his pain and suffering to stop. Is that too much to ask. No one should have to go through this. Sorry for my rambling. It has been a long day and just needed to vent.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

See if hospice can get a suction machine for you and if your hubby is still wanting to be mobile a walker with wheels on it. Have the hospice nurse explain what the items are for and why they are needed, that might make the pill easier to swallow so to speak. With him falling, try to explain that if he goes down from dizziness or weakness that it can be better to get someplace in stages - living room couch to dining room chair, dining room chair to kitchen chair, etc. Also let him know that if he feels he is losing balance and nothing is close by to SIT DOWN where ever he is. It's safer and hurts less to fall on your bottom than to pitch forward. Tell him it's an ironworker worker trick. God gives extra padding on the backside for a reason :)

The body is unable to move to mucus, that can be just as much the meds too. Morphine relaxes all the muscles. For me it's when the body starts to get dehydrated that I knew. He went from coughing up all manner of goo to nothing. That was more of a tell for me than anything.

Take each day as it comes. If I started think too far ahead I would give myself an anxiety attack. Breathe deep, do something for yourself each day, and find your smile.

jenene
Posts: 40
Joined: Oct 2010

I will ask about the suction system. The problem is it only occurs when he is lying down. I'm hoping the hospital can help that because he can sit up more. As far as a the falling he would not hav e fallen if the dog wasn't right in is path, although he is very weak. My concern is the stairs. I am just going to tell him today that if he wants to go up and down the stairs someone needs to be with him very time.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Does your husband say why he needs to get up? My dear would say he had to use the restroom, and after a difficult struggle to get him there, he really wouldn't have to go. I suppose the dehydration that April spoke of was setting in. However, close to the end, and he really could not stand, I brought a bucket to the bed. He was able to relief himself, and I knew that made him very comfortable. Silly! With all the meds and equipment placed at our home by Hospice, a simple portable urinal would have avoided so much discomfort for him! On his last day, they did insert a catheter as he had become incontinent.

He did sit up often, once he said to me, as I was standing in front of him to help him up, that I needed to move out of his path, he needed a clear path to get to where he was going. I also believe that alot of what he would say was part of the transition period, a time when one begins to prepare for their leaving this earth. Yes, the meds affect them, also. Once they began to give him the super suppository he never got up or spoke again. Sad, but the beauty in that was that he no longer was in pain.

I hope and pray that soon he is able to calm down, rest and not be in pain. I know that they have some med to help with the mucus and fluids, also. Take care of yourself. Try to sneak a nap here and there.

Lucy

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello Jenene
I would suggest that you have him sleep in a more upright position. My dad ended up sleeping in his recliner more often toward his end. No more going up and down those stairs! Way too much effort and strength to do so. I know, he is stubborn and determined isnt he? Hang in there. Give him lots of love and support. Give him your blessing. Praying for all of you.
Tina in Va

jenene
Posts: 40
Joined: Oct 2010

Got the hospital bed today. He says some funny things that makes me want to laugh. We had a good talk today amongst everything and he was able to talk about life. He told me "I'm not ready to die yet, maybe in a week." He is still going up and down the stairs although I am helping him, which he doesn't l,ike. But I told him he doesn't have a choice in the matter. He does tell me to get out of his way while he is stumbling along. He told me today that he wasn't suffering anymore, which I know was a lie, but soon. He will be in a happy place soon. Then he can be as stubborn as he wants to.

Noellesmom
Posts: 1272
Joined: Aug 2010

Just don't have the words to help at this point.

I understand where you are and you will be in my prayers, Jenene.

Hugs.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I am not on the road you are for now, but my hearts breaks as I read your post. I wish I could tell you something useful. I Know my prayers and thoughts are with you.

Jennie

skipper85's picture
skipper85
Posts: 231
Joined: Sep 2010

Hi Jenene:

Your husband insisting on going up and down the stairs (as dangerous as it is) is more a matter of him retaining some control over things. I've been through the mucus thing as well. Hospice should provide you with something for that. My husband never talked gibberish as long as he was able to talk. I have to say that my husband was lucky. He went very fast - 11 days from the time he was admitted to the hospice program until he passed. Savor every word. You may even want to record his voice. I still am having trouble remembering my husband's voice but I'm told that will come back (I'm hoping). You and your husband are on a tough road. I know you will be putting all your energies into caring for him. I hope you will remember to take some time for yourself. You will need a break now and then both mentally and physcially.

I'm praying for you both.

Skipper

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I don't have any words of wisdom but wanted you to know I am here. My husband agreed to stop trying the stair thing when he fell and I had to call the fire department to help him back into his chair. We only have a couple of steps, so it wasn't too bad. It really brought home to him that he was losing control, though. That really bothered him. Anyway, hugs. My thoughts are with you. Fay

3Mana
Posts: 829
Joined: Aug 2010

Jenene,
My heart breaks for what you're going through. Your husband is only 38 years old and it's not fair that someone so young should have to go through this. Being a caregiver is so hard especially when it's someone you love.
I was a caregiver for my husband from January-March 25th of 2010. He had lung cancer, but was actually doing pretty good, but had a rare side effect from one of his chemos and he hemorraged to death in our bathroom. It was horrible. We hadn't even gotten used to the idea that he had this darn disease and then I had to go through his awful death. He didn't deserve to die like that and it's something that will be with me forever.
Anyhow, now I'm rambling, so I'll just say that I'm here for you and whenever you feel like venting this web site is great. Everyone on here is so caring and helpful when we're going through rough times.
Do you have anyone who can help you. like relatives or friends? If you do, ask for help. Don't try to do this alone!! Take care! "Carole"

neverquit
Posts: 221
Joined: Oct 2010

Jenene, No need to apologize for venting as many of us have been where you are now. I know how hard it is when your husband is trying to get up and do something/go somewhere in the house and you are so worried for him and want to help him. Just know that we are here for you and that you have our ear. Please take care and make sure you get the rest you need too.

jenene
Posts: 40
Joined: Oct 2010

Had a long night last night. Every little noice I flew out of bed. He keeps trying to leave the bedroom. I finally got him a bathroom for in the bedroom so he doesn't have to go far. He is sane most moments andthen talks to me about the SWAT team having just left. At least he is a comic relief. I finally convinced him today that he could go down the stairs much less make it back up. He finally realized that we will come to him. Hopefully he will remember that.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

I hope you are able to rest some tonight. Keeping you and your husband in my prayers.

Lucy

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Had those nights myself. Patrick kept asking about the (non-existent) dog for over a week, then he would get on the phone and "talk" to whomever was on the other end. He had a laryngectomy where his voice box was removed for one, then there was never anyone on the other end of the line on his cell. The best was when he got on his (non-existent) Nextel and was giving directions where the steel needed to go for the crane operator.

This comes from lack of oxygen to the brain and dehydration. Both of those and the meds will cause hallucinations. I tried for a while to keep him in the present if he caught himself, but there came a time when it was just too painful for me and him to do that so I rode the wave in.

As for the getting up, I agree with Skipper. With men, it's so much harder on them to lose control over things. So if they nitpick on things, or try to do things that could be dangerous for them, it's just their way of doing what they can for themselves. Two and a half weeks before he passed, Pat was still going up the stairs on his own. All I did was keep an eye on him.

Pat was much happier being in the living room versus the bedroom. Until he got to the point where he absolutely needed the bed, he lived and slept in the recliner in the living room. It also helped with the mucus. As he become weaker and more dehydrated, the mucus dried up and he stopped coughing altogether.

I know this may be a hassle, but is there any way that the bed could be re-set up in the living room? He may feel like he is missing out on the action being in the bedroom. It might also be easier for you and for anyone who visits.

Big hugs and I'll keep the coffee pot on for ya.

jenene
Posts: 40
Joined: Oct 2010

I asked him where he wanted the bed but there really isn't a place downstairs for it. With the animals and my 4 year old he would not have any privacy. I just keep having everyone go up and visit him. Of course today he fell in his room and landing against the door. Then he didn't want us to come in and help him. Even with his bedside bathroom he still tries to make the trip to the bathroom. Stubborn man.

MissTodd's picture
MissTodd
Posts: 28
Joined: Jan 2011

It was my last week of work before the FLMA kicked in. I got the call from the nurse that she was outside my house the front door is open and Todd was not answering the phone or the door. I was never so afraid in my life. I thought the worst. When I drove home and found him walking 5 blocks back from CVS. I was so mad at him for going out by himself, no phone, no keys, no ID. I cried so hard, I was so glad to see him, I was so angry with him. I was so scared for him.
All the emotions I went threw in that breif moment were so overwhelming.. All I could do was cry.
At 42 yrs old my husband should've been able to do something so simple as go for a walk without being disciplined like a 5 yr old. Mind you he could hardly manage the stairs himself. He forgot how to use the microwave. The cell phone would have been no help to him also, he didnt remember how that worked.
I prayed for a peaceful end for him. If came the evening of Oct 13th, 2010. A date I will never forget..
Peace & Hope... Amy

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

maybe he doesn't want the privacy and wants to be near to you and your little one and all the creatures in the "natural habitat" as much as possible. It's almost like Pat would sleep better when there were 5 people in the room, because as soon as everyone left for the evening that's when he would get up.

Yes he is and yes he will be and enjoy every single minute of it.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network