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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????

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My mom just passed away 2 days ago, at home with me and other family, and her caregivers. She had been on hospice for a month, and declining rapidly, but it wasn't until a week ago that she was diagnosed as having maybe 2 weeks to live at most. I got there in 2 days, and she survived 4 more. During that time she lost speech, all motor function of limbs, communicating by blinking only, drinking only 20 mL or less per day. Over the last 7 weeks, she had lost 40 of her 115 pounds. Then, the last 2 days, she could not cough or move anything except eyebrow reactions to speech. The 36 hrs there was no measurable blood pressure, and low oxygen saturation. Mom was still there...she refused liquid from me but then, a few minutes before passing, took 3 sucks from a sponge stick from her caregiver, provided by hospice to prevent aspiration into the lungs. Mom then tried to speak, but she could not. She had been on oxygen, but drawing thru her mouth instead of nose where the oxygen was supplied. She then closed her mouth and tried in her last breaths to draw oxygen through her nose and speak again, but no words could be seen or heard. Then she was gone. All of this, on the last day, was after administering increased doses of morphine and lorazipan to help with pain and breathing I guess. Mom hadn't said a word in a whole week, since a very faint , but audible whisper "bye bye" to me over the phone. Those were only her second last words - her last, to a caregiver who asked if she was more comfortable, was "no." Mom wanted to live forever, or at least to 100, and probably thought she disappointed us by just missing her 93rd birthday. My point here, if lost in the emotional stream, is that hospice is for those expected to die soon, but isn't actively dying, which my mom was experiencing. My other point is that actively dying is neither a pleasant nor peaceful experience. My mom was home where she wanted to be, and recieved the best care, from exceptional, privately-hired 24 hr care. She had been in hospitals and long term care, would say she could do assisted living if she had to, but whenever there, she hated it. She liked having baked salmon, see family, feed her cat, read the paper or have it read, any time or every day. Your mom, I believe, is not yet actively dying, but you may decide not to wait and take your LO home before that time. I just hope my input allows you to make the most informed decision.
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NeedHelpWithMom Mar 2020
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YES - I get the risk to the living vs risk to the dying. Why can't there be an exterior space where the dying could be housed that is accessible directly from the outdoors? In this time of tents for triage, why not tents for hospice???????
????? ????? Where is the compassion and American ingenuity?
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I am in almost the same situation as you are. My mom is 93 in Memory Care and on hospice. The only difference is that she is “actively dying”.
I am not sure what the exact criteria is for being “actively dying”, but you should explore and find out. If your LO qualifies, you will be allowed in. If not, thank God that she isn’t and continue to teleconference.
NOTE: Last week when Mom was not “actively dying”, we would talk On the phone about the party we’d have when they allowed me in. Maybe planning such a party would improve both of your spirits.)
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As there is going to be no clear answer, I am praying to God for you. Dear Heavenly Father, please hear Joodlan's cry for help. Thank you, God. Amen.
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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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LoopyLoo Mar 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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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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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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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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Not sure if this would work under the Covid19 scenario, but some hospice providers have inpatient services...if yours does not, research which do and see if that is a better option.
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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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Home, if possible. It may not be easy and you need to go in with your eyes open to all that this will entail as no one is likely to be with you to help 24/7...make sure you have and can afford shifts of help you will want/need...but with the bond you have and love you feel, my guess is you will have no regrets. Sending hugs.
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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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Can you have her transferred to your home?
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CaregiverL Mar 2020
I don’t especially recommend bringing her home since when this nightmare virus passes...it will be difficult to bring her back to SNF. Mom may not pass for a long time & “family” available to care for her at home will be only daughter. I speak from experience since it’s 3 years since I discharged my mother from SNF. She just turned 93 Wednesday. It’s only me & paid private caregiver. Brother has a business & doesn’t participate in helping & certainly doesn’t do caregiving...& doesn’t pitch in $$$$ either. Leave her there, my opinion. Virus will pass before her mother will. If possible call on phone but call Nurse station & have them put her on phone to hear your voice.
Hugs 🤗
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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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Why don't you take her home.
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Joodlan, I can’t imagine the pain you and your Mom are experiencing. Heart breaking. Is taking your Mom home on hospice an option?
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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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I am in the same position you are in. My 95 year old mother has been in a nursing facility for 8 years. While the law infuriates me, it is the law, and if the facility makes an exception for me, then everyone in our position (and there are more people than you know) will want to gain entry. This would endanger the lives of all residents everywhere. Please don’t think about even trying to enter the facility using a fire door! This would be irresponsible and endanger the lives of others.
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They don’t know when she will die. My brother was put on hospice on a Friday and died the following Weds at a few minutes after midnight.
That is so cruel to keep you away from her. I suggest taking her home if you can. My brother and sister both died at home with hospice coming out several times a day. My brother lived in a little town and they still came out several times a day. So sorry you have to go through this.
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Joodlan, I'm so sorry about he anguish that you are going through. I can't imagine. They say not "until she is actively dying", then you feel bad for wishing she was actively dying just so you can see her. Catch 22. Is taking her home on hospice an option? Just a thought. If not I only have these words for you. When all is said and done and she has passed, what will count the most is all the many many years that you have been with her and loved her and cared for her. Please don't let the last little bit of time define your relationship. She knows you love her. Her soul knows that there are reasons beyond your control that you are not there. My mom died when I had left to get a bit of rest, but I have to think that this is how it was meant to be, and it was all ok. You will be ok. She will be ok too.
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Joodlan my heart breaks for you. I read your story and the similarities are remarkable. My father has been in ALF since October after 9 years of Home Care. My mother and I were always actively involved in his care. Since th Ban the last time we saw him physically was 3 12. Believe me ..we raised all kinds of hell to the point where she was do considering taking him home again . at 76 herself it was scary. We got to "visit" through a screen Saturday. The next morning this past Sunday he was rushed to the ER, pneumonia (again) kidney failure, organs shutting down etc. Mom elected comfort care. Now the hospital is saying he's "Outpatient" hospice meaning we take him home or he returns to the facility. If he returns to the facility we wont be with him until he passes which could be very soon. If we bring him home we could see him but would he be getting good care? Can we handle it? This COV 19 ban has been hell in earth for us all. I'm praying for you and hope an answer comes. I completely understand your frustration and concern
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KaleyBug Mar 2020
For home care Hospice you can expect the nurse to come at this time and a CNA to bath. Here all the volunteers have been stopped. I made the difficult decision for the safety of my dad that is in good health to let mom’s hired help go and only have the Hospice nurse come in. It was a hard decision. So the care will be on me. But I know by doing this the risk of exposure are slim now. Wishing you the best! I had them give me a Hoyer lift, it has helped a lot.
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I am so, so sorry. I was with my mother every day to hold her hand, including the day she took her final breath - I can only imagine the degree of anguish and heartache you and so many others like you are suffering.
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Will they allow you to take a cot and live in her room with your mom.
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LoopyLoo Mar 2020
Likely not and they shouldn’t!
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Countymouse as usual makes such good sense. You really don’t have an option here. If you were not staying with her 24 hours a day, chances are good should could die without you being there. You are making yourself crazy trying to get them to change their minds. They cannot. Please don’t accuse them of not having compassion. They do and they are showing up daily trying to keep all the residents alive. Try to find a way to get to a peaceful place yourself and perhaps call your own doctor for some meds that may help you.
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Joodlan Mar 2020
Thank you, I don't need any meds...
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Joodlan,

I read your post several hours ago, but I couldn’t answer because it brought too many memories of my father’s recent death. He, too, had SCALE (skin changes at end of life), that no amount of treatment would heal as all his blood and nutrition were going to his vital organs, trying to keep him alive.

I see you have not had many responses, probably because caregivers like you are facing this now all over the world. It is tragic, and heartbreaking, and normal suggestions don’t apply. I have an extended family member who has a good friend in isolation on a ventilator, battling for her life due to the corona virus. She is not permitted to see her either and she is the only “family” that she has.

Call hospice daily, ask them to Facetime during their visit so you can see your mother’s face and she can hear your voice. Talk to her, sing to her, let her hear you pray for her. If hospice doesn’t come daily, ask one of the nursing home staff to do it. I know they may be understaffed, but the calls could be as short as five minutes to bring comfort to you and to your mother. My mother’s nursing home is doing this for those who request it. Ask the director what provision is being given for your mother that will take the place of your daily feeding of her.

I know you are angry, and frustrated, and frightened. Know that the nursing staff is feeling the same way. I am praying for you and your mother that a way is found to bring comfort to you both.
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Joodlan Mar 2020
Thank you for sharing your experience with me.... I was able to use WhatsApp and talk to and see my mom today, it was wonderful.
She's been in the nursing home over 10 years, and I never miss a day seeing her and spending lunch with her... It hurts so much not to be able to touch her sweet face and tell her everything will be alright...
I hope and pray she lives long enough so that we can spend whatever time she has left together. ❤️
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No answers, I’m just so sorry you’re going through this
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What if you walk in with a hazmat suit...but then take it off in Mom’s room otherwise she’ll be scared out of her wits ..ask them if that works .Hugs 🤗
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LoopyLoo Mar 2020
The nursing home cannot allow visitors, period. Hazmat suits are needed by medical personnel now.
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I am so sorry. You may not believe me but even if she is unconscious she will know that you are there with her. This is what hospice nurses told me when I was with my brother as he was dying.

I don’t know how I would have coped emotionally had it not been for the wonderful nurses at the end of life hospice facility where my brother was.

The nursing staff, social worker and clergy were a huge comfort to me during this time for me. Everything the staff does is for a particular reason. No one. Is ignoring you or your mom. The opposite is happening. They are active caregivers.

They will answer any questions that you have. I did ask questions. It is better to express concerns rather than assume. For instance, my brother no longer wanted his oxygen. He asked that it be removed.

I thought the staff had decided to take his oxygen away and was confused. When I asked why he wasn’t using oxygen the nurse explained that he did not want it.

So, please ask them in a kind non accusatory way any questions that you may have. They will gladly explain why things are as they are.

I am so sorry that you are caught in the middle of this horrible virus while your mom is dying. She will know you are there.

The way the nurse explained it to me was that even patients that woke up after being in a coma related every detail of what was going on around them.

She won’t be able to express her feelings to you but I was told to softly speak and touch my brother at the end because he would know that I was present. I believed his nurses.

They have seen many die. Hospice nurses are around the dying every single day. They were more knowledgeable than I was on death.

I respect their experience and their loving care. They were extremely kind to my brother during his last days and final hours.

This is hard for you. It is hard for all of us to let go. The dying are ready to leave. They are at peace with dying.
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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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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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Linzy6 Mar 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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