Dear Steve, when my husband was in care about six months, he experienced an incident of such agitation that it put others at risk and it caused the visiting LPN, who we called Dr. Mike, to put him on enough haledol to keep him pretty much knocked out. I called in a hospice provider, which turned out to be one I would not recommend. The hospice provider weaned him off most of the haledol, and trying other drugs instead. I went aa long with it, even though I knew those drugs would be unsuccessful because they’d all been tried, while he was still at home with me. In retrospect, it really only prolonged his increasingly agonizing agitation and mental torture for another year, before he went to in patient hospice, this time with the right hospice provider, who were wonderful. I still remember Dr Mike saying “trust me” and I still regret not doing that. I could have saved my husband a year of suffering. But, as I’m sure you know, it’s just so impossible imagining letting them go.

Dear @A myALZteam Member: I've posted this before, but it's been a long time, so you may not have seen it:

When my son was in a coma, following his Traumatic Brain Injury, we honestly didn't know whether he would survive, so I was understandably distraught. At one point, I looked up the definition of the word "merciful", and found: "showing or giving mercy; to show forgiveness or compassion to those in need" (which is what we think of) – but what was most helpful to me was this part of the definition:
"GIVING SOMEONE RELIEF FROM SOMETHING UNPLEASANT".

That concept, of giving relief from something horrible, was of tremendous help to me, in coping with him being in a coma – because what he was going through medically would have been pure torture if he had been awake.

Similarly, if someone at the end stage of life is suffering with great pain, then giving them merciful relief through sleep can be very good pain management.

I truly believe that sometimes, we have to pray for the most merciful outcome and trust that God will provide relief to our loved ones. I realized that a coma can actually be merciful.

Sometimes we have to make choices for our loved ones, and it's our responsibility to choose the most merciful route. What’s truly merciful may not always be what we initially think it should be. A very big hug to you, Steve.

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A myALZte...

I am so glad I checked in tonight to read these very poignant descriptions of your end of life and choices re: your loved ones suffering...physical and mental. These questions have been haunting me wondering if I made the right decision for John to go into hospice when his anxiety, agitation and behavioral issues became unmanageable with homecare. It was initially intended as a supervised stay to change medications and then presumably come home stabilized. That's not what happened and John's issues and suffering as I've described became more intense. The hospice MD recommended sedation and antianxiety medications which worked to calm him but eventually within a couple of days led to his becoming virtually unconscious. He was at peace and not suffering and I truly thought he'd awaken in a calmer state. John died a few days later. I have questioned myself so much about the what ifs had I made a different choice. No way to get that answer.
Fast forward to the last few weeks helping with the care of my brother-in-law diagnosed with an aggressive leukemia mid August. I was with him through his last days of life and while my sister had engaged home hospice my brother-in-law suffered greatly his last few days. The treatment wasn't executed quickly enough to spare him that pain and suffering.

@A myALZteam Member. Helen, your wisdom helps all of us.

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A myALZte...

As I understand it, Hospice Care is for people with a terminal illness and a life expectancy of less than six months. It's purpose is to keep the patient as comfortable and pain-free as possible. As people, who are in pain are likely unable to place their thoughts elsewhere, being in a painless fog is probably better than conscious, relentless pain. However, if the patient is sufficiently cognizant, I believe it would be best to ask what he or she prefers. Were I in that position, I believe I would prefer the lesser pain, even with its attendant diminished cognition. When pain is that bad, most people cannot think clearly anyway.