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My mom is 95 years old, on hospice because her skin is breaking down and she has several ulcers that need to be tended to daily. She us also on liquid Oxycodone 5mg twice a day.
I have been with her every single day during the lunch... She can no longer feed herself.
They are denying me access until she's "actively dying".
She has a private room, the last one at the end of the hall...
I'm going to copy and paste what I wrote to them.
She's going to slip away all alone...
She cries for me daily, and my heart is broken....
Any suggestions?


Your letter here states that "Family members for residents nearing end of life" will be allowed in.


Well gee, since my NINETY FIVE (95) year old Mom is a resident there, in a PRIVATE room, on HOSPICE, PAIN MEDICATION to keep her comfortable as her skin is breaking down, with NO HOPE FOR RECOVERING , I would think that would qualify as end of LIFE….


HOSPICE CARE IS FOR THE DYING…. It helps patients manage pain so they can focus on spending their remaining time with loved ones.


Time does not stop, and I will not be able to hold her, and tell her how much I love her, until her body shuts down and she doesn't know I'm there…
You are denying me, her only daughter, access to be with her, until she's "actively dying"....


“There is an emptiness inside of me -- a void that will never be filled. No one in my life will ever love me as my mother does. There is no love as pure, unconditional and strong as a mother's love. And I will never be loved that way again.”


PLEASE, I IMPLORE YOU, don't take these last moments, while her brain still functions, away from me.


Where is your compassion????

Is there a fire door at the end of that hall that would allow you to reach your mother's room without entering the rest of the building?

Would you be prepared to stay in your mother's room for up to two weeks?

I am trying to think of ways in which you could stay with your mother without increasing the risk to other residents in the NH. You couldn't come and go without bringing in with you, each time, whatever you've picked up outside. You couldn't walk through the building without shedding skin and other cells. But if you can enter the building without going near any other rooms or people; and if you then stay put; the increase in risk would be minimal.

Are you in touch with your mother's hospice team? What are they telling you about how she's coping?

I have to tell you: to the logical part of my brain, it makes no sense whatsoever that the quarantine rules are waïved for the families of people who are actively dying. Those patients will soon be dead, nothing further can be done for them. How is it rational to promote their families' comfort at the expense of increased risk to people who are not expected to die? How would you feel if your elderly but well mother were infected by someone who had only been allowed in to take leave of his dying father?

If you wish to appeal to the compassion of the people in charge of your mother's NH, you must first realise that their compassion is owed to EVERYBODY who is their responsibility; and protecting their residents as far as they can from risk of infection is their absolute priority. Work with it, don't fight it. How can you keep the rules AND see to your mother's comfort - that's the problem you need to solve.
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Reply to Countrymouse
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Linzy6 Mar 27, 2020
It's a heartbreaking situation, but I agree that protecting ALL the residents and staff from this very contagious virus must take precedence over allowing family visits.

A distant relative has been given special permission to have daily four-hour visits with her husband in a nursing home. She has to wear a gown and mask. But is this in the best interest of the other vulnerable residents?
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This is a tough situation. COVID-19 makes facilities want to protect their residents - who are all at risk of poor outcomes it they get the virus. The facility can teach and monitor staff to maintain social distances, wash frequently... but not visitors. That is why so many facilities are closed to visitors at this time.

On the other hand, your mom is fading. Of course, you - and other family members and friends - want/need to see her. If she gets COVID-19, she will get pneumonia and she will succumb. The risk might be warranted given her fragility and that she is already on hospice and not eating well.

If this was my situation (I am an RN), I would take her home and have round the clock hospice care. Everybody should wash their hands frequently and avoid touching mom's face. Other than that, give her the attention and care you crave to provide.
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Reply to Taarna
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First, I am sorry this is happening and that you are hurting. No one can blame you for feeling like this.

As much as it doesn't seem like it, the facility IS showing compassion (and obeying the law) by having such strict limits. They can't risk their patients or staff contracting the virus. The only way to do that is high restrictions like this. It's awful for everyone. The facility isn't trying to deny you anything; they're trying to keep their patients safe. One person with the virus there could wipe out several people, and this virus is sneaky... it can incubate two weeks until symptoms show up. In those two weeks, that person can infect everyone they're around or contaminate anything they touch. The facility has no choice but to be vigilant.

People on hospice (especially those who are still cognizant) aren't necessarily right at death. There's several stories from people on here whose loved ones have been on hospice for YEARS. The staff has dealt with this enough to know when the process of death has begun, and that's when you'll be alerted. I am sorry it's like this.

Your mother won't necessarily pass alone, and definitely won't pass doubting your love for her. I think in situations like this, the one who is passing has their own sense of control over when and how it happens.

This is tough and we offer our hope to you.
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Reply to LoopyLoo
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My heart really broke reading your post. I feel so much for you, and understand you so much. I would feel the very same.
Is there any way you can hire a nurse and take her home with you with all the necessary equipment?

I'd like to share this with you: many years ago my mom had a brain aneurysm: she went to be operated and during the operation the aneurysm broke; she went into a coma for 3 months. After she woke up she catched ALL the deseases one can catch in a hospital, from pneumonia, to very dangerous bacterial infections, 4th degree bed sores, and eventually septic shock cause they left her without hydration for too long... After her huge struggle to come out of the coma, she was dying for different reasons. I decided to sign against all doctors opinions and to take her home, thinking that she would have preferred to die at home. I prepared the home like it was a hospital. Sanitised everything, hired 2 nurses, bought all the hospital material I could find, from IV, to professional medications, everything. I was so scared of my decision that I was feeling sick for the worry. It seemed huge, and it was.

My mom started getting better from the first day she got back. We had many difficult moments, but it was much more doable than what anybody would have thought at the beginning. 14 years later she's still alive.

Go with your instinct.
Sending you all the courage in the world.
Arwen
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Reply to Arwen31
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I agree with most of the posters here, and I would do everything possible to try and bring your mother home with Hospice. I feel so sad for you both. Very difficult situation you are in. My heart goes out to you. Praying you and your dear mother will be together real soon. Insist on bringing her home. My prayers are with both of you during this terrible ordeal. God bless you both.
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Reply to earlybird
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I too have a mother who is 90 years old in a Nursing Home and with Hospice care for recurrent strokes and escalating dementia for about 4 years.  At this time with the pandemic the nursing home is now on lockdown, and all staff and residents are fine with no instances of the virus.  So I am happy they are taking good care of her, and hospice nurse visits her twice a week and hospice aides come twice a week to care for her -- and they report back to me on her condition and how she is filling. My mom no longer acknowledges that her phone is ringing since I had to admit her to a nursing home, after the whole family took care of her for 10 years after my dad passed away.  We remedy the virus problem by going to her room window outside of the facility, wave to aide or nurse who may be in there to sit her up so she can see us and wave and blow kisses to her to let her know we love her and haven't forgotten her.  The family takes turns doing this since we have a large family of her children, grands, and great grands.  This may be a solution.  It's hard for me and my brother not being able to visit her twice a week like we were.  I am her oldest daughter and POA at age 65 myself, but her medical safety with the little time we may have with her is more important.  See if this might work for you.  I will be praying for you through this.  Much Love and understanding.
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Reply to Regina2
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Yes, "actively dying" is the criteria for visitation. Nursing homes are doing what they have to do to protect the lives entrusted to them. Testing isn't available to 'clear' people.

You could bring your mom home. Or, you could explore moving your mom to an in-patient hospice. I don't know what their visitation policies are, but I imagine they would be much looser.

Your heart must be broken, as are the hearts of people whose loved ones are dying alone in hospitals where they are not making exceptions for the actively dying.
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Reply to IsntEasy
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This breaks my heart.I would bring her to your home with hospice. That is what I did for my late father . I am so sorry for your pain . And hers.
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Reply to grace18
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My mom is on Hospice too, but I have her here at home with me. The Hospice Nurse comes to my house and a bath aid, I do not allow anyone to come and see her . Even though she is on Hospice the Virus would make her end very horrible and it could kill me because I am at risk. I am so sorry that you are in this situation. There is a lot of good advice here. Hospice is very supportive I would consult them.
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Reply to llmusick
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omg....reading this makes me want to cry. When my mom was in the hospital where her kidneys were shutting down, she didn't know where she was or really who anyone else was but me. As soon as I saw her, I cried and told her I was there for her. She knew it was me and she cried too. Then all the nurses around her cried too. It broke my heart. I can't imagine they are making the both of you suffer. I don't know what to advise, but my heart breaks for both of you.
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Reply to kgaither
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LoopyLoo Mar 27, 2020
The facility is not making anyone suffer!!

They are doing all they can to PREVENT suffering! No one on earth is immune to this virus. It can kill people, especially the elderly. People aren’t understanding why these policies have been put in place.
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