Covid Collateral Death -- Beloved partner refused medical care. I am alone with delayed shock and increasing emotional pain. Any advice?
Apologize for length, I am writing and shaking while crying.
My 88-year-old partner of 45 years suffered a horrible year-long collateral-Covid decline and death. He had many co-morbid conditions.
Beginning March 2020, he increasingly refused in-person diagnostics and medical care strictly due to Covid exposure fears. In video consult with his PCP last August, he lucidly refused a bone marrow biopsy, after his bloodwork revealed extensive abnormalities and Thrombocytosis.
December 2, he fell and was transported to ER. December 3 he was somehow admitted to the hospital without communications with me, his Health Advocate (legal papers were on file with the hospital). These legal papers were from out-of-state (California), but our Michigan attorney assured us there was reciprocity and they should be respected. I don't know if my partner approved of the hospital admission or not. Hospitalists never returned my calls, and messages left with nurses for the doctor to consult with me were ignored. There appears to be no Ombudsman, and patient relations was disrespectful of me. This was a Level 1 Trauma Center, not a bare bones rural hospital.
My partner apparently refused medical care at the hospital, but was put through two days of testing anyway. He was isolated, scared, and alone due to the hospital Covid visitor ban. The hospital record states that he was "confused" though "aware of place and person." On Dec. 4, he had to beg a nurse to phone me so he could ask me to bring him home Against Medical Advice, which I quickly arranged under Hospice discharge. Back home on Dec. 5, within 48 hours he declined so quickly that regular Hospice service had not begun, only intake and a starter pack of Morphine. I was otherwise on my own as he died with great distress, because Hospice had no nurse to send. Hospice could not increase Morphine beyond 10 mg. He struggled, was agitated and gasped violently for 24+ hours before death on December 7. All I could do was hold him. Yes, I was out of my mind.
Almost 3 months later, I am traumatized, grieving, and guilty beyond belief. I can't accept how I was treated because I was "unmarried" and not "immediate family" and my partner was too weak to sign an in-hospital directive. Apparently nobody thought of a "verbal ok" from my partner for doctors to talk to me. Why didn't I challenge that? My therapist tells me I am suffering "disenfranchised grief," and that my partner and I were treated unconscionably.
Two months after my partner's death, I was able to extract his hospital medical records, because I am now my partner's Successor Trustee and Personal Representative. It may seem ridiculous that I am still obsessing over my partner's conscious state. But for me, it feels like I was banned from our last emotional intimacies and connections, when he could still talk and reason.
There is no way I'm going to legally challenge any of this. I just am having a very hard time accepting what I cannot change. That my loving partner felt abandoned, had to beg to come home, and then suffered so badly. I was ineffectual in providing love, comfort, or rational responses to intensive traumas for a year. Maybe I deferred too much to his wishes. I feel left to the wolves and wear a Scarlett Letter for closure. I should simply have lied and stated I was my partner's spouse (there are no hospital spouse police, are there?). I beat myself up because this never occurred to me. I have Hospice grief counseling and a therapist, who seem to agree that we were both treated badly.
I guess I am grateful he didn't die alone in the hospital. I am humbled and full of empathy for others who are dealing with life-and-death cusps and isolation. I am sickened, shaking, and cannot come to terms with any of this.
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And if I can share a bit of my husbands hospice story with you, it might help bring a little peace to yours. My husband was under in home hospice care for the last 22 months of his life, and when his six week dying process started on Aug.5th 2020, he was in such excruciating pain, and agitated, that hospice could not ever get under control. He was on the highest dose of fentanyl, haldol and lorazepam, and nothing touched it. It's horrific to watch the person you love suffer so, I feel your pain in that. My husband gasped as well the last 24 hours of his life as well, until he finally died on Sept 14th 2020. And that was with the hospice nurses coming every day, so the fact that there wasn't a hospice nurse assigned yet for your partner, I'm not sure would have made a difference or not. I guess I'm just saying that the fact your partner went fairly quickly, was probably a blessing, in that he didn't have to suffer long. Again, I am truly sorry for all you've been through. It is very traumatic, and I'm glad you are seeking out some therapy. May God's loving mercy, and comfort surround you in the days, weeks, and months ahead.
You did all you could have done under dire circumstances, my friend, where services were unavailable and where your partner was refusing medical treatment to boot.
Thank God you were able to bring him home to pass with you by his side. For that you should commend yourself. The post traumatic stress you're now feeling goes with the territory I think, and you should be prescribed medication to help you with the hyper-sensitive reflexes you're undoubtedly feeling right now as a bodily response. It's awful, I know. Let your doctor know what you're going through and allow him or her to help you through this very difficult time. PTSD is a physical as well as a mental/emotional crisis you're dealing with, make no mistake about it. Paxil helped me tremendously when I was dealing with it in 2000.
Wishing you the best of luck dealing with all you have heaped on your plate right now, and sending you a hug of love and compassion.
Hoping it will get better soon for everyone.
Your story broke my heart. I am immensely sorry for the agony that you and your partner went through.
I am glad that you have a therapist that understands the grief that you are experiencing.
I am happy that you have found this forum to share your feelings with other caregivers.
I hope that you know without a shadow of doubt that you did everything that you could have done for your partner.
He knew and felt your love. He was able to rely on your warmth and compassion.
It’s impossible to erase your trauma but I do hope that in time you will be able to remember the special love that you shared in happier times.
He would want you to remember those times and be at peace.
For now, grieve and honor your feelings.
Please know that the intensity of what you feel now will one day become tolerable enough for you to bear.
Your feelings are painfully fresh at this point. Even later, there will be waves of grief that will knock you down.
Dear lady, from what I read in your words, you are much stronger than you think you are.
You fought and endured until the very end. You signify a pillar of strength.
Now is your time to nurture your needs.
Wishing you peace as you transition into this new phase in your life without your dear partner.
As you say, there is no way to really do anything about this. You are among so many family members who, whether married or not, go through the exact same thing, unable to be with their loved on until the end, if then. My brother died in May in ALF, not of covid, but the restrictions were the same.
This pandemic is devastating. I am so relieved to hear you are seeking therapy. Only time can heal completely, and you will always have regrets that you could not be more support, but I hope eventually your trauma will move to your having good memories more than those that hurt so very much. I wish you the best.
That's the part I don't understand. If your partner had been refusing medical care for the better part of a year, who OK'd him going to the ER? If he agreed to be transported, then he's the one who made that choice. Nothing the hospital did from that point on seems to be the hospital's fault.
In December, hospitals were overwhelmed with Covid patients, and getting information on loved ones was extremely difficult. I know, because my mother was in the hospital for two weeks in December. I had to talk to case managers to get any information on her, because I couldn't get hold of anyone who was actually interacting with her. Finally, a doctor called me with an update, and he clearly didn't know much about her condition. It was a train wreck of a hospital experience for me, but nonetheless, she was properly cared for as a patient.
I can't get into the legalities of Michigan honoring patient advocate paperwork. I'm in California, and it's a power of attorney called an Advance Health Care Directive, not "health advocate." Regardless of what paperwork you had, if your partner was able to make his own medical decisions, your paperwork wouldn't have been valid anyway.
Nothing the hospital did had anything to do with the final outcome for your partner. It sounds like he should have been on hospice long before this episode, because the ER trip wouldn't have happened, and hospice nurses would have been on board and able to treat his issues and help with comfort care at the end. They couldn't have guaranteed a "pretty death," so all the woulda/coulda/shoulda grief you're going through doesn't change anything. He is at peace now, and you now have to decide to move ahead and honor his memory rather than dwell on what cannot be changed.
I suggest you get the book, "Healing After Loss," by Martha Hickman. It's a year's worth of reading to help you through this process. You read only one page each day, so it isn't too much to digest all at once.
I'm really sorry you're going through all of this. Death can be terribly traumatic to watch, and I think a lot of people just don't realize how difficult a process it can be.