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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
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
Cheryl my heart goes out to you and your beloved.
You are both in my prayers.
God bless, Janelle x
 

Jeanau

Distinguished member
Joined
Jan 21, 2015
Messages
336
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Pittsburgh
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.
 

sisterpain

Active member
Joined
Mar 3, 2015
Messages
31
Reason
Loved one DX
Diagnosis
04/2012
Country
US
State
Michigan
City
Detroit
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..
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
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.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,194
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Call hospice. They can keep him comfortable in his home.

But first, get the Advanced Directives done. A DNR is not enough.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
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
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
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.
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
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
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
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.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi Cheryl, just checking in on you. Hope all is ok today.
 

anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
270
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
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
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Still here holding your hand Cheryl xxx
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Thinking of you Cheryl and sending hugs. Steph
 

Lynda

Active member
Joined
Jun 4, 2015
Messages
45
Reason
CALS
Diagnosis
03/2015
Country
US
State
CT
City
Naugatuck
Giving you warm gentle hugs.....
 
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