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Debbob5 Asked December 2020

Mom on hospice and can’t visit until she is actively dying. How will we know when that time has come?

A month ago, Mom went into a NH. Hospice was started this week. She is 90. We can only do window visits due to the pandemic. She is sad, confused, in pain and frustrated. Cries a lot when I call. Eating very little. Needs help with everything. Hospice dr put her on methadone and discontinued most of her other meds. Part of her problem is a compression fracture in her back. We cannot go see her until she is actively dying. How will we know when that time has come? I am so worried we won’t be able to be with her when she is still coherent.

Debbob5 Dec 2020
They have provided her with a new inflatable mattress . Are are keeping an eye on it. The hospice staffer this morning says it is red and excoriated. It is on her coccyx. If after Friday, there are no more positive tests for corona in the NH, residents or workers, they will allow me a compassionate care visit. Not really sure what that means but I will take it.

Windyridge Dec 2020
I just went through the death of my father in September. He was on hospice in a nursing home. The hospice nurse was very good and made sure I was allowed to visit in person for his last couple days. He had a very peaceful passing. He’d lost interest in food and water the last few days and just went to sleep. He was getting some type of morphine to help with his breathing. I don’t think he knew I was there but I talked to him and played his favorite country music CD.

You should be able to get updates from hospice and nursing home staff. Death can be hard to predict sometimes. Best wishes to you.

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Debbob5 Dec 2020
She is now suffering from a pressure sore on her tailbone that she says is from the bedpan. The first I heard of it was today. She said they took pictures of it.
funkygrandma59 Dec 2020
If it's on her tailbone, it's could very well be a Kennedy ulcer, which in most cases is fatal. I would certainly be asking the Dr. about exactly what they think it is. Unless they are leaving her on her bedpan for hours on end, it wouldn't be the cause of a pressure sore.
AlvaDeer Dec 2020
Deb, this is so dreadfully difficult for all involved. The sad truth is that Hospice is likely to know when this time is near. There are things they looks for, cooling of extremities and lividity and such, but the problem is that by then the elder is often medicated and unable to respond. Trust me I understand as I could communicated with my brother last May only by phone, and with someone there telling me he was squeezing their hand when I was mentioned, or what I said to him. It is beyond excruciating not be be able to be there.
Keep telling the facility and all involved in Hospice how important this is to you. I hope you will be able to visit. I am so sorry for this; it is what is happening in our times and we are helpless against it.

Grandma1954 Dec 2020
The staff at the Nursing Home is aware of what is going on. Hospice staff are either there often or they can be called when there are signs of EOL.
It is also possible that if she is in extreme pain you could ask for her to be transferred to the the Hospice In Patient Unit for pain and symptom management. Typically at the Hospice building they will allow visitors on a limited basis. (at the Hospice where I Volunteer it is no more than 2 visitors in a room at a time right now) If the Hospice has room at the In Patient Unit (IPU) they might be able to place her there it would make visiting a bit easier. But understand if they can not do this.
If she is in a lot of pain and they increase her pain medication it is possible that you would not see her while she is coherent. Given the option I would rather my loved one not be in pain.

sjplegacy Dec 2020
Hospice nurses are familiar with the dying process. The signs of dying are usually displayed at least several days (sometimes weeks) before death. The nurse should keep you abreast of your mom's condition so you have ample time (at least days) to visit. Hospice care doesn't mean immediate death so it could be sometime before your mom reached EOL stage. Nevertheless, keep in touch with the nurses.

funkygrandma59 Dec 2020
Can you have your mom transferred to a local hospice facility, as most if not all hospice facilities are allowing 2 visitors per day? It has to be the same 2 people in a 24 hour period, but at least you could go spend some time with her, while she is still coherent. By the time your mom is "actively" dying, she will more than likely be unconscious or in a coma, but they say that hearing is the last sense to go, so mom will still hear you. I know it breaks your heart to not be able to be with your mom right now. Hopefully she understands the reasons why. And remember too that just because she is under hospice care doesn't mean that she will be dying any time soon. My husband was under hospice care in our home for 22 months before he passed in Sept., so just continue to encourage your mom, let her know how much you love her, and make sure you leave nothing left unsaid. God bless you.

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