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Who decides when the main caregiver can see a family member in the nursing home when they are on Hospice?
My mother has been on Hospice 4 days at the time a Kennedy ulcer appeared, and I am told she may have a week at the rate she’s declining. Since COVID, is it the decision of the state or the facility when I can see her before she passes? She’s been crying for me for weeks as it has been, but knowing she may not able to have closer and tell me what she needs to before she passes seems just as much of a neglect as not supplying water.
I don’t know how high up to go looking into getting “permission” to see my own mom who lived through COVID, and has one request.

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I am so very sorry that you are having to go through this. I'm really not sure how nursing homes are handling when someone is dying, but they may have to wait until she is in what is considered the "active stage" of dying before they will let you in to see her. Again, I'm not clear on that. Is it possible that you can have her transferred to the Hospice facility? I do know that they will allow 2 visitors a day per patient. That way you could at least spend time with her before it's too late. I know that Kennedy ulcers can be fatal, so time is of the essence, so find out what the nursing homes protocol is regarding someone who's dying and if need be have her transferred to the hospice facility. God bless you in this trying time.
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RSmith1232 Dec 2020
Thank you so much! The Hospice facility is across the street and, not having gone through this, I haven’t needed to look into that. I will check into that today.
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Have you spoken with hospice and the facility. Try to make your questions as non-adversarial as you can, as they are in charge of when you get to see your Mom. There is no state law; facilities are making their rules now for the protection of their elders. They will also dictate the protective gear you will wear. Call the administrator directly, and ask what the protocol is. Some are being told that the needed criteria is "actively dying". As a nurse I can tell you this isn't easy to predict. I would tell them that your Mom is crying, you are suffering, you want her to be awake when you are there to tell her goodbye; tell them you will abide by any rules.
Basically I am tellling yourself to throw yourself upon their mercy. But do know that all across our nation now people are dying at the rate of one every 30 seconds from Covid. The protections taken are extraordinary, and many (I include myself, tho my brother didn't pass of covid, but of an illness, with hospice present) have lost loved one, with only the phone to connect our last communications.
I am so very very sorry that you are going through this.
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RSmith1232 Dec 2020
Thank you and I’m very sorry for your loss.
I did just that with the facility social worker today. She said once Hospice is called, they dictate the time family can go in and they follow their riles on that. So I then spoke with the Hospice nurse and she sounded very experienced and confident in knowing when to contact me and let me know of any changes, even though I am of course allowed to call her any time with questions. She understood the importance of my concern with Mom having closure as well and me, and her being awake. Mom is working to be very clear when she’s awake and I can tell she knows everything going on.
I am able to FaceTime her which has helped when she needed pain meds before they were around the clock, and when they weren’t strong enough. The Hospice nurse told her she was getting her stronger meds today, and I believe mom knew she meant morphine and Mom knows that isn’t a good sign. I think any questions of what was going on was cleared up when she realized that.
Im glad she likely knows, when I do go in, I’m sure she wants to make sure I know and am ok. (Of course not but what can you do!) The morphine came in tonight and she was finally able to rest. It was a long restless day until they decided to go ahead with it.
Im glad we have had such good nurses, CNAs and Hospice care. The COVID thing got crappy right about 6 weeks ago when I knew things weren’t getting better and I wanted to be in there. I can’t imagine the families with 90 year old grandmothers they haven’t been able to see at all passing in COVID or not, and not allowed in or suddenly passes.
We have been blessed even through all this.
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Typically the Hospice facility will allow visitors (right now it would probably be 1 at a time)
Talk to the Facility and ask what the protocol is now.
(typically once a Kennedy Ulcer is observed EOL is 48 to 72 hours but it could be 2 weeks) given that the facility should allow visitors.
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RSmith1232 Dec 2020
We are up to a week yesterday and I spoke with the DON today and she said (in basic terms) if mom is on the way to catching the Jesus bus, she’s at the point of packing her bags. I don’t know if that description included the bus stop is in front of her house or down the street.
anyway, this week she started eating so much better, it did confuse me. The pain in her legs has been horrible and I just assume it’s the ulcer touching nerves. They won’t let me in until they see her vitals go that direction like the heart rate change and such. That also has held up pretty well.
She told me of a resident who was in the active stare of passing so they let the husband in to be with her and he stayed to feed her lunch (apparently more than once) but she started to improve and they had to make him stop visiting. That is so messed up. But if we aren’t able to bring them home for care, we have to follow the rules the people who pay the facility set.
It’s ben an anticipatory thing since mom had her stroke 5 years ago, but she’s done well until now. It’s even moreso strangely enough. Our family isn’t one to do things half way I guess. lol
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I would imagine that where your family is physically may be taken into consideration such as the infection rates in your area.

A month ago my mother became quite ill and was taken by ambulance from the AL facility to a hospital. I had not been allowed to see her since March. Now I could see her in the ICU as well as her hospital room. My husband and I could not see her together but one of us was allowed at a time.

Then it was determined she should be placed in palliative care. We could see her together as well as my 3 children who traveled because the situation seemed grim.

She expressed a desire for PT which she has very little energy for yet this plan is being continued for now. Now none of us can see her. We go outside her window and wave but because she is on oxygen she can't really hear us. 2 of my children are coming for Christmas along with 2 grandchildren. They will not allow children in but they can also visit outside her window. They were here in the summer but were not allowed to see her. If things worsen then we could see her again but that would likely mean she is dying.

Its a terrible way to have one lifes end but there is no point in fruitlessly arguing the situation.

Basically the situation is that we could see her if the end is near but if it's not then we cannot see her and visit and offer companionship. I will add that she is in a facility that has not had a single case of Covid amongst the residents.
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