I am sharing my story because I am so drained from feeling sad, helpless & guilty. My mother is stage 4 Breast cancer and on her last treatment. On 03/2020 contacted covid. She was ventilated & tube feeding (peg). Her cancer advanced because she couldn’t continue due to being unstable & weak. She’s been in and out of the hospital for all kinds of infection from uti to sepsis. I have 2 brothers that’s Dont even come see her or talk to me because they don’t want to be part of this. I am torn apart & don't know what to do. She’s dying slowly. She’s still responsive but I'm not sure if she’s really understanding or maybe the religious belief I’m not sure. I want to put her on hospice and that means she’s off the ventilator and will die. I am alone and so drained. I am not her poa but since I have always been involved in her care the responsibilities are all on me- phone calls,medical decisions, consent forms and more. I took care of her 6 years after my dad passed, she lived with me till she got very sick. I am so sad & always think of her when I eat or drink and feel her pain although we are far apart. I need help deciding it’s breaking my heart. I sometimes pray her heart would stop as she’s DNR so she can stop suffering from all her wounds. Help me God 😔
I do compliment you on facing the issues realistically though. And I hope it comforts you knowing that you're taking the lead in finding solutions that are the best for your mother.
I think the first thing I would do is contact your mother's oncologist and ask her to be frank about your mother's chance of recovery from the cancer. Has it metastasized? That's an important factor as well. If it has, and has compromised her lungs, brain, or ability to walk, that's a significant development which doesn't bode well for survival.
I would also ask one of the doctors treating her for COVID what her chances are. And also ask one of the treating doctors, if she can conquer COVID, what are the chances of getting off the PEG tube and the ventilator? As to the ventilator, has she been given a tracheotomy? Each of these issues have their own recovery factor, individually and collectively, along with the breast cancer.
Getting an assessment from medical personnel can help guide you to a decision. This isn't something you should have to decide on your own.
If I can offer any insight, my sister died of metastatic breast cancer which had invaded her brain, lungs, and compromised her ability to walk as well. Her oncologist and the infectious disease doctors both advised that there was no possible recovery (especially b/c of the lung destruction), which prompted me to make the difficult decision I had to, but once she was in hospice (at the hospital), at least she had some peace from the agony she was experiencing.
And you have nothing for which to felt guilty. You didn't cause or create any of the conditions facing your mother. Those are circumstances beyond yours and probably anyone's control other than the medical people providing the best and most appropriate care they can.
I hope you can find some peace that you're doing the best you can, carrying the torch for your mother while your siblings are absent and non contributory.
I think you will find that you will both get more services from Hospice than Palliative Care.
But if you do not feel ready for Hospice select Palliative Care and if you change your mind in a week or so they can change the admission from Palliative to Hospice without a problem. OR choose Hospice now and again if you change your mind you can have her placed on Palliative Care.
It is not like a contract you can not change you can change your mind. You do what feel right for you and mom.
The best thing is IF she is in a facility now and you want her home Hospice can help you. They can have all the equipment and supplies you need delivered to your house. They can arrange her transport. If her symptoms become unmanageable at home all Hospice have an In Patient Unit that they can admit her to so that they can manage pain and symptoms. the nice part of that is they will allow visitors (limited) so you can visit (as you can tell I am a big proponent of Hospice)
My mother just entered palliative care last week after 10 days in a hospital. She has a blood infection that can not be located. Palliative care was decided upon by the facility she was being admitted to. They are continuing with an oral antibiotic which will just stabilize her but we believe she is slowly slipping away. She is also on oxygen.
It was also explained that at least for a period of time Medicare would cover this care plan. They are continuing her medications now but not adding anything to attempt to cure what basically has become incurable.
It was explained to me that hospice would be at our expense for her. I believe hospice makes sure a person is kept comfortable but no typical life saving methods are used during this period.
You really should be receiving guidance from those who or where she has been treated. I am sorry for all you are enduring as you work to be your mothers advocate at this stage of her life. I hope in time you can find peace with being present in this role.
What your brothers do or did or will do has nothing to do with how you feel or how you participate in her care. Men sometimes react differently than women do when confronted by serious illness.
You are in a difficult and painful situation, and there are NO “best” decisions, so you are in the position to give yourself permission to do what you think will offer you and your mother PEACE and REPOSE.
If you have a connection to a religious institution or a hospital chaplain, be i. Touch with them IF you think it will benefit you and Mom.
Ask Social Services to explain the benefits of both Palliative Care and Hospice.
As a point of fact, the POA(S) SHOULD be involved, and if they’re not, please ask Social Services what your legal situation is concerning your mother’s care.
You are not alone. Most of us have endured circumstances similar to yours, and have moved through the loneliness and panic and despair into a place of ultimate peace. It may be the hardest, most painful thing you ever do, but you will do it in the best way you can, and that really is all that can be asked of anyone.
I pray daily “for all who suffer”. My prayer list is too long to say each sufferer’s name, but I know in my heart that prayer is heard.
I’ll be thinking of you and your mom today, and praying for peace to be in your hearts.
What does her doctor say about her chance of recovery?