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smoochiegal

Active member
Joined
Jan 3, 2015
Messages
87
Reason
Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
My sweet man is getting so weak.
He is just done. He wants it over. He has a DNR (Do not Recesitate) in place. He does not want a feeding tube, a vent or any measures that will prolong his life with this disease.
On Tuesday, he was enjoying a beer when suddenly he spewed it everywhere and was struggling to breathe. It turns out that the whole sip went into his lungs. His cough is so weak that there was not way that he could clear it all out. He was ok again after about 5 minutes. But my mind was screaming aspiration pneumonia!
Fast forward to Thursday... he has been coughing more sounding more congested.. the nurse listened to his lung and his right lung is not clear. They have always been clear up until now. SHe heard crackling and rubbing she said. So, I asked him right out. If this turns into pneumonia what do you want to do. He said 'I do not want any treatment'.
So here we are watching and waiting to see if a fever develops or if the coughing gets worse.
It seems too real.
Not sure what to hope or pray for.... I guess just peace...
thanks for listening.
Cheryl
 
Cheryl my heart goes out to you and your beloved.
You are both in my prayers.
God bless, Janelle x
 
Cheryl...I'm so glad that you are sharing your honest emotions with us. It helps me see into the mind of a caretaker. I'm praying for a peaceful journey for you and all of us on this board.
 
Cheryl, Please get hospice involved if you haven't done so yet. Having him calm and peaceful should be your ultimate goal at this point. Morphine and attivan are the life savers. I just lost my sister 3 weeks ago. She was in a very similar situation like your husband. we managed to control her air hunger (although she was on bipap 24/7, still it was not enough) and her couphing spells by use of morphine. Started low and increased it as she needed it.We managed to keep her last 5 days completely asleep, very calm and no struggle. A combination of morphine and attivan at particular times worked really well.

When it was t me for her to go and her breathing was just up her throat, we managed to take off the mask and she was gone in one minute with no struggle. The moment she passed, she had a smile on her face that i will never forget. She was free.. I hope your experience is as smooth as ours, just remember that you are in charge of managing his care and you know him better than anybody..We had candles and background music the whole time..
 
Cheryl, so, so sorry- more for you than him! He will be free and at peace. As others can tell you, our PALS who have died did so peacefully- what we wanted for them. Wrapping you in love as you endure this horrible time of waiting.
 
Call hospice. They can keep him comfortable in his home.

But first, get the Advanced Directives done. A DNR is not enough.
 
Cheryl, you will be in my thoughts all weekend. I hope so much that this doesn't turn into Pneumonia. and for his sake, I hope he is not suffering. You are a strong, wonderful woman. just be there for him and support him like you always do. Hold his hand, and remember when you are feeling overwhelmed that we are all here holding yours so you are not alone.

Barbie
 
Oh Cheryl, holding your hand!

I know the pneumonia route. With lots of good palliative medications you can make this peaceful for him. I've just been away for a night, and I had a real feeling I needed to check here, and found your post.

I know you are busy just being with your man and that's all that matters. Even if you don't read this straight away I believe you will feel the love and strength I'm pouring your way.

I hope you find peace, I found a real calm when I knew we were in our last days and the meds kept Chris calm and he had no fear for the first time in his whole ALS experience.

Love you girl, you are performing the ultimate act of love by giving him what he wishes his way. You will always know this.
 
Hi Cheryl, so sorry for you both, I feel so helpless reading this and being so far away, wish I could hold your hand and give you a big hug. I hope hubby is being kept comfortable and you are surrounded by your loved ones.
Love Gem
 
I understand your husband completely. By doing as he asks and trying to bring him comfort you are doing all the right things. This disease gets so mentally and physically exhausting that you just want it done. Having someone to hold your hand and say that they understand and support your decisions is the best thing that can happen. Cheryl, I admire your courage and strength to do something that hurts you so much to lovingly support him.
 
Hi Cheryl, just checking in on you. Hope all is ok today.
 
I, too, share your distress with all the othes here. It is hard to imagine the depths of pain you both are going through. I pray you may have strength and courage. Even though I don't know you personally, I wish I could be there with you, helping in some way.
- Charlene
 
Still here holding your hand Cheryl xxx
 
Thinking of you Cheryl and sending hugs. Steph
 
Giving you warm gentle hugs.....
 
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