On hospice

[Larrytbm]

My PALS decline has been fast, making it difficult to get things ready in time. And now the change comes even faster. She has been on palliative care for several months, but within about 10 days, first a UTI, then thrush and another infection in the cheeks and jaws have brought us to hospice. The cheeks were slightly swollen on Friday, started antibiotic on Saturday but by Sunday morning she was in terrible, terrible pain. She decided on hospice even before the nurse arrived Sunday. It took a lot of morphine to get her pain level down, now she is unconscious and resting. Some family and friends got to see her conscious but in pain, now she may not regain consciousness. She was ready to go when it was time and it looks like that time has come. We are at peace with everything except the terrible pain she felt.

 

[lgelb]

Very sorry, Larry. Has she decided against antibiotics at this point? I am glad you are with her and her pain is now controlled. Whatever happens, if she slips away, she knows that you have been with her for the full ride.

Best,
Laurie

 

[affected]

So sorry Larry.
I know at the end we had infections, antibiotics and then fungal infections raging and getting things back in balance just didn't happen. Treating the fungal infections caused GI upset and it was downhill sliding at a fast pace.

For us, just going palliative rather than more aggressive fighting things was so peaceful.

I hope you can both find peace in this too. The monster just never stops taking.

 

[KateEmerson]

I am so sorry Larry. My thoughts and prayers will be with you and your wife, Kate

 

[tripete]

was the infection in cheeks and jaws from biting the cheeks? i do this uncontrollobly. i also have rear bed soar are these what cause the infections being spoke of? i am sorry for your wife but glad she is sleeping comfortably.

 

[KarenNWendyn]

My thoughts are with you Larry.

 

[Chincoteaguer]

My thoughts are with you Larry.

My wife also had UTI in addition to a kidney stone and kidney infection. She then had thrush. Antibiotics for kidney stuff and grape fruit concentrate for flush were effective.

I recall the first threads that I read back in December 2017. You were among the contributors. Thank you for being here.

Ernie

 

[swalker]

Larry, I am so very sorry to ready your post. I have watched in awe as I have read what you have done for you PALS.

You both are in my prayers.

Steve

 

[pittsburghgal]

Larry, you and your wife are in my thoughts and prayers.

Sharon

 

[Narrowminded]

Praying for you and your wife Larry, for comfort and peace.

Hugs

 

[Nikki J]

Praying for comfort physical and emotional for all of you Larry

 

[Larrytbm]

Antibiotics have done almost nothing, swelling in the cheeks is slightly down, but now her entire neck is swollen. There are no self initiated breaths. On Saturday she requested our pastor come visit. He comes tomorrow at 11 am and with the kids we have decided to take her off life support.

Just my guess, but infection in the cheeks, jaws and neck are common with the thrush. Eileen's speech was the first symptom of ALS and even with suction, cough assist, swabbing, different medicines,etc., we couldn't control secretions enough to prevent infection.

 

[affected]

Bulbar onset is truly cruel. I wish for a very peaceful passing as the suffering ends.
We never want to lose the one we love, but the cruelty is beyond measure.

 

[NinaP]

What to say really. I hope she finds peace and you too.

 

[Jrzygrl]

Wishing her a comfortable transition. And peace to you and your kids. Love transcends all.