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Been busy physically and drained emotionally. I have not had time to post or read threads.

In the last couple of weeks, we have turned a page. We have gone from not being able to talk about our situation to, with many Kleenex, talking about her fears, her mind-frame, wishes for end of life treatment and other wishes before she passes. Her abilities continue to weaken very rapidly. We are being followed by a palliative care team of social workers, nurses, counsellors and doctors and continue to have care aides coming to the house for personal care. Our front door is a revolving door where physical and emotional support comes through. I am extremely grateful for the love and support her family, our friends and the palliative care team have shown in the last few weeks. Accepting the Dx, I think, has come and gone; now we move on to whatever next step in the process.

We will have a busy week this week because, her and I have made the decision to move her to the hospice. Her GP has revised her prognosis and if things continue to progress the way they are, by Christmas, she will have lost her manual abilities, her breathing will be critically affected, her ability to speak and swallow will be seriously diminished. She continues to refuse to use the BiPap machine or do any type of breathing exercises to help her breathing. So her death will be sooner rather than later during that time frame.
Even though this week's move to the hospice is "on a trial basis" or "to give me a break" (her words) I have a strong feeling (or the strong hope) that the hospice will provide her with the peaceful environment she needs to reach the next stage in her journey. I don't believe that she will be coming back home (which is heartbreaking for me) but knowing the timeframe, it has to be done. This also means that I have to let go of my role of full-time caregiver; in order to become her husband again. That will be the hardest part.

"One day at a time" ...
B.
 
Yes Bruno it will be the hardest. But, I am hopeful you can enjoy each other a bit. The last few months were brutal for me emotionally and physically.

It is very hard to go from running ragged to sitting down with nothing to do. 5 months out and I am still struggling to sit.
 
Bruno, thanks for sharing with us during your struggles. The decisions are so very tough. Giving up the role of caregiver is so hard but as you said it will give you the time to be her husband again. You can be by her side, read to her, talk with her and spend what time you have left comforting her. My thoughts and prayers are with you.
 
None of the decisions we are faced with are easy ones, and there is no one right answer. You follow your heart and gut and yes, a day at a time.

Please keep us updated xxx
 
Bruno, I am sorry for what you are going through and that it has progressed so quickly. We were diagnosed on 6/30 and Brian is still functional after an onset of symptoms in February.

Wishing you both peace and comfort at a very difficult time.
 
Hey. Again things are happening at the speed of sound and curve balls are being thrown at us/me.

Update:
My Margarite (her real name is Joan, but she prefers Joni) is in palliative sedation and is days away from passing.

Last Wednesday, After I bathe her, which is always appreciated, she was too tired to have her daughter dry and style her hair. She napped for a bit and she had visitors coming to the hospice with Dim Sum, which again she thoroughly enjoyed. Lunch was shorten because Joni needed to rest. Her daughter stayed with her for an hour but she could not wake her enough to do her hair so left her to sleep.

Joni had a stroke.

Since Wednesday night her brothers, sisters-in-law, father and daughters have “moved in” to the hospice and we have stood vigil. The nurses were happy with her consent to be put into terminal sedation on Friday night.
She had several good conscious moment early in the weekend but as the titration of medication gets closer to the “sweet spot”, there are no more eye contacts or smiles. My Joni without a smile is just not right.
I take some comfort in knowing that her last real conscious day, she had a wonderful bath, had a good meal with good friends and got to spend some time with her wonderfully caring daughter.
I put on a brave face but I am a mess. Emotional are never far from the surface and worse when alone.

Is it wrong of me to want this over now? And get on with MY life? I am tired, tired tired of this.

Don’t worry, I have a counsellor !!! ;-)

“One hour at a time”
B.
 
I am so sorry to hear about your Joni, Bruno. It does sound like the right kind of last conscious day, and no one is wrong for wanting the unendurable to be over. It sounds from what you say that it will be soon.

Meanwhile, don't walk away emotionally until it is time; be in the moment to experience what you want to take and give from these final days, and what you want to leave behind will ultimately fall away.

Best,
Laurie
 
Oh Bruno, so sudden and unexpected to suffer a stroke on top of ALS.

I so agree, just be in the moment with her, even if it is just making some skin contact and being with her inside yourself.

If they are giving her no fluids and just palliative meds it will be over very soon. No one would wish to linger long in this state, what you are feeling about that is what I call humane.

I'm thinking of you both and your family during this time, she knows you are seeing her out xxx
 
So sorry to hear about Joni! You are not wrong to want it to end soon.
 
Bruno - sending hugs and prayers.
 
hugs to you. many of us wish for the end to come fast---they have suffered so long and it is horrible to watch it go on and on. wishing for it for your self is not selfish--it is normal and understandable.

hugs to you in these last hours
 
Bruno, you are following her wishes and giving her a love-filled passing. Big hugs to you.
Becky
 
Bruno, I am in tears reading your post and I just want to say my heart is breaking. You are not wrong for wanting it over. As you said, she had a good life and is exiting with so much live surrounding her. Watching this process is so hard on the loved one. My thoughts are with you and I am reaching out with my soul to tell you how sorry I am.
 
So sorry that you are here....my mom is the one with ALS and she has been progressing super fast as well, last November her first symptom appeared and it was just a tiny bit of weakness in her left hand, she was running marathons and hiking mountains still. Now she is inching down the hallway with her rollator as well, can barely speak and when she does its very hard to understand and she is having trouble choking now.

Mom was very much the same as your wife as in "look what I can't do" and wasn't active in any therapies....honestly when they are progressing that fast I kind of wonder what the point is in the therapies other than psychological benefit of feeling like you are doing something. If she doesn't feel that she needs to go and doesn't want to go personally I say don't get worked up about it. If she weren't progressing so fast I would really encourage her to go but if she is anything like my mom she is progressing too rapidly for the therapy to really maintain anything. If she wants to watch 6 seasons of Grey's (and I'm biased because I love that show), I say sit next to her and watch too.

Her time is too limited for arguments, although this greatly affects your life this is the last bit of her life on Earth and I would let her spend it the way she wants to.

Probably there are many who disagree with me on here and if the progression weren't so fast I would disagree with me too.

I'm not sure if that helped at all or just confused you more.
 
Jenny,

Per Bruno's post, his wife, Joni, is at a hospice center and she had a stroke. She is in terminal sedation.

Bruno,

I'm so sorry you are going through this. I can't believe how fast she has progressed. Her and I were both diagnosed in June.2016.

Hugs,
Deb
 
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