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????
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.
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?
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.
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.
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.
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. ❤️
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.
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
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.
Hugs 🤗
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.
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.
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.)
????? ????? Where is the compassion and American ingenuity?