I know that this sounds like a ridiculous inane question. Like "really"?
You have no idea what to do ...?
But it really is so much more perplexing than it sounds.
Whatever you do.... do not be me.
I was in denial and completely unprepared emotionally and physically and financially. I had a terrible team of doctors and health care people taking care of my husband. They did not answer my questions even tho I kept pushing and then COVID19 hit.
I say COVID killed my husband because in a very real sense it is true. More accurately the staff at hospitals and facilities were callous and lazy mostly and with COVID visiting restrictions I did not know what they were subjecting my husband to until it was too late. The hospice people that evaluated him prior to placing him in hospice care had to tell me because I could not see.
My husband died October 27th 2020. He had cirrhosis and the excessive ammonia in his brain left him with permanent damage after being in 2 ammonia induced severe encephalopathy comas.
The doctors who he went to during his battle with liver disease could have been forth coming about what to expect in end stages....but they were not.
I learned as we went and always had to feel like I could have done so much better by this man I loved so dearly. the man who loved me and always put my needs before his. So many things they could have explained would have helped and info often was given once it was too late to be helpful.
I am still shocked and appalled at the lack of education health care people have about encephalopathy dementia. They showed no patience or empathy for him or me. They blatantly mistreated him and gave him subpar care because he was loud and yelled alot and argued ,was difficult and mean to the staff mostly because they were mean to him. talked down to him and were anything but compassionate and reassuring.
My biggest mistake - and mind you I made this mistake because the one time they offered real advice it was done in such a way as to not engender any trust or feeling that they truly had his best interest at heart.
He had lapsed into a coma after being taken to the hospital, Even with COVID I was able to see him. They allowed me to come up after I demanded to see him since they were outright badgering me to sign a DNR and pull life support.
They pulled a chair up by the bed ... and then stood there. They would not leave me alone with my own husband for 2 minutes. It made me very angry that they could not give us a little space and a little privacy. So unfeeling and rude. Then they had promised me I could sit with him up to an hour and once the doctor came by pestering me to sign a DNR once I refused they had this chaplain come up and she grabbed my arm and started trying to pull me down the hall Normally I would have knocked her out cold for putting her hands on me like that.
If they had only shown us 1 iota of consideration and respect I would have listened to them . I could have spared him much anguish and pain because their opinion would have held some meaning and retained some worth in my eyes. He was in the hospital 2 months almost at that point. He was a handful - calling 911 from his hospital bed in the room claiming they were holding him against his will. Refusing to cooperate with PT so he could walk again. Refusing much needed meds. Being blatantly abusive with the staff because he had dementia and brain damage. The very worst thing they did - beyond purposely starving him leaving him alone all day to just yell all alone. was to keep telling me that he was "confused". Dementia is not confusion Confusion is some disruption to your thought process about your perceived reality. No one took the time explain I could not see him they let him believe I had dumped him did not want to see him and was never going to bring him home I was so ill prepared . I have sad memories He deserved better. I do not deserve to feel guilty for not dealing w/him better.I should have signed the DNR

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There are no words that can take your pain away. Others have made wonderfully valid points that don’t need repeating.

Your feelings certainly deserve to be acknowledged. You are entitled to feel a range of emotions. It will take time to process everything and come to terms with what has happened. It may be helpful to join a grief support group. I am glad that you posted on this site. It isn’t healthy to suppress emotions.

My deepest condolences for the loss of your husband. Wishing you peace during your time of mourning.
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Reply to NeedHelpWithMom

I’m sorry that you feel so bad. Most people have something to regret after the death of someone they loved – what they should have done, could have done, should not have done etc etc etc. And of course what others should, could and should not have done. It can be as hard to let that go, as to survive the loss of the loved one. That may be where you are stuck at present.

One suggestion that worked well for me after my mother’s death was to go on a group tour that took me to new places every day, interacting with other people every day. Going on holiday by yourself can be miserable, but if you can go with friendly people, it can help you to realise that other lives go on, and yours will too. If it’s possible, perhaps you give that a try. Best wishes, Margaret
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Reply to MargaretMcKen

I'm terribly sorry for what you've been through. It is indeed traumatic, and there's no way to prepare yourself other than to take the initiative to do online research on your own when you didn't really have access to doctors during COVID.

However, I will never criticize any healthcare professional in a hospital who has suffered what those people have been through in the past year. Hospitals are not equipped to handle dementia patients on a normal day, but throw in COVID, no family members allowed in to be that extra set of eyes and to calm the patient, and add in the need to try to find the time to communicate to the family while dealing with a greater caseload than normal, well, you've got people working to their breaking point.

My mother was in the hospital for two weeks at the end of December 2020, and it was like pulling teeth to get any information. Finally five days in, a doctor called me at 10 o'clock one night -- the only free moment he had after having done a 12-hour shift that supposedly ended at 7 p.m. I was extremely grateful, and it was about all I was able to get the rest of the time she was there. I'm sure she, too, was a handful, because when I could get hold of a nurse on the floor they'd say she was pretty feisty (which is a nice way of saying she was a handful). They simply couldn't devote extra time to her care beyond what they were already doing, and I understood.

When she got out, the first thing I did was have her set up on hospice, because we're not doing that again -- COVID or not. She'll get the care she can get where she is, and that's the most we'll do. I doubt she'd survive another hospital stay.

I understand why they were trying to get you to sign the DNR, because we went through that with my grandfather 30 years ago. Without one, they would have had to do CPR on him and try to get him back when he started to die. CPR is a violent thing and it breaks ribs when done properly, so there was no way we were going to have that done to an 88-year-old man who was dying naturally. My step-grandmother signed the paper although she didn't want to, and my grandfather died peacefully two hours later. The nurses were trying to save her and my grandfather from a terrible end, and they succeeded.

I think you should look into some grief counseling, because you've been through a traumatic experience that has clouded some of your reasoning. You've lost your partner in life, and it isn't something you get over easily, but the anger isn't going to help until you can move past it. It's one of the stages of grief, but you don't want to get hung up on that stage. Eventually you have to move to acceptance in order to move on.
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Reply to MJ1929

Your post is so emotional, so well written and so honest in addressing the challenges you and your husband faced.   

You've already received consoling advice, and I can't add to that except to suggest that you try to find ways to help you through this troubling period.   And that's said easily; I can't imagine the horror of what you've experienced.   
I would be distraught if I had to experience what you did.    And it's very difficult to determine what the best decision is at such a trying and challenging experience.

I do think you would be justified to contact an ombudsperson and make a complaint against the offending facilities.  Hospitals seem to be in a consolidation mode; larger ones are acquiring others, and turning more into conglomerates with an eye to the bottom line than toward healing.   And some are being run like subsidiaries of a large corporation. I've seen this accelerate locally during the pandemic.

Nothing may be changed but at least the hospitals, and the holding company if there is one, will be put on notice that performances were at a sub par level.   If  corporations want to get into the  medical field, they need to be held accountable, and shareholders of these corporations aren't going to be happy when the corporation loses money b/c of poor health care management.

I wish you peace and solace as you walk this lonely and troubling road.
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Reply to GardenArtist

It sounds like you have a lot of feeling you need to vent. You experienced the trauma that so many who have lost loved ones in the time of covid have experienced. It has left you with dreadful memories. Do know that the medical personnel struggling to save people, knowing they cannot supply the time and skill needed by those people, are experiencing the same PTSD that you are experiencing. I am a long retired RN, but I truly loved my work, and I can guarantee you that most people are not in medicine not merely for a job, but to help people, and that their entire self-worth rests on being able to have the time, the room and the equipment to do that.
SJPlegacy always has great advice and gave you the recommend of a book. I will add to it. Get the short beautiful book A Grief Observed by C. S. Lewis. He allowed himself to rage at the God he so loved, even. Grief is often not something we walk gently through.
You now will need to deal with you grief. And GRIEF is the right G word. You aren't a felon. Guilt belongs to felon. Words matter.
Do seek help. Get a good therapist. Often Social Workers trained in the life transitions of loss are better than regular psychologists. But find one that is right for you and begin the work of combing through this painful tangle so that you can move on.
I am so very sorry for your loss, and I wish you the best. I hope that the time WILL come when the memories of your dear husband will bring a smile to your face before a tear to your eye; time is a great healer. Please take care of yourself, be good to yourself, create a memory book in which you "talk to your husband" and decorate it with pictures, memories, collages. Doing that has been a great healing thing for me in the loss of my brother just a year ago.
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Reply to AlvaDeer

Are they (certain feelings) inevitable? Despair, loss of hope- no. Loneliness, especially with the loss of a spouse- yes. Guilt (or better, regret ) for what you did or didn't do- no. And one more- grief, the pain we experience at the loss of a LO. Unavoidable. It is a testimony to how special your husband was to you. The longer the relationship and deeper the love, the stronger the grief, your pain.

You cannot prepare for how you feel after your loss. The pouring out of emotions is inevitable. It's necessary. Whatever emotions you experience accept them as a necessary step in grief recovery. Affirming your emotions can be therapeutic and cathartic. It can help to shorten your grieving period.

You may feel despair, hopelessness, but remember, you did not die, although you realize a piece of you is gone, you have a life to live. Some in this forum have experienced a loss of their spouse and are working on their own grief recovery, or have gotten thru it, i.e., they have accepted their loss and have reinvented their lives as a single person.

Loneliness is the feeling that may stay with you forever. It still resides with me after over 3 yrs of losing my wife. But you can't go around moping, you have to adjust. Probably the biggest remedy is to re-engage. Socialize, learn new things, be active in the community, and take vacations (which may exacerbate your loneliness). Focus on your present and your future.

And guilt- for what? Trying to be the best caregiver you could be? We can all look back with some regret and 20/20 vision and say, “maybe I should have done something else”. Maybe you should have signed a DNR. But you didn't and you can't do it now.

All of your feelings are wrapped up in your grieving process. “Getting to the Other Side of Grief, Overcoming the Loss of a Spouse”, Susan Smeenge, can be worth reading.

I wish you peace.
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Reply to sjplegacy
AlvaDeer May 16, 2021
This is so beautiful, as are so many of your responses to people in pain.
You DO NOT “deserve to feel guilty”. No statement you can say to yourself can be more true.

The Covid crisis was, and is, unprecedented. It has touched, slapped, shocked, harassed, ruined, betrayed every one of us who are and were caregivers, whether we were broken by its direct effects or by the damage that was caused our LOs by being on the fringes of this horror.

You have detailed what you did, what he did, and what they did. There is NOTHING in your anguish that should result in the slightest trace of guilt.

All any of us were able to do during those horrible, relentless days was the best we could come up with, in the face of the overwhelming tragedy that our LOs were living in every day that they lingered here.

That was what you did. Whatever you feel now is presently so battered by your loss that you have to try, when you can, to consciously give yourself a break from it, whenever and however you can.

There will be sources you will be able to access to address the despair and loneliness. You won’t solve them, but time will allow the best of memories to emerge, and help your pain to soften.

So think- was this man, a man whom you loved so dearly, ever a man who would allow you to feel guilty for being UNABLE to do what you wanted to do for him in the face of insurmountable burdens far beyond your control?

Every good thought I can send, every hope for relief, every small light and Blessing I send to you. Please treat yourself as well and as gently as he would want you to be treated. As his Champion in Death AND LIFE , you deserve THAT, AND NOTHING LESS.
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Reply to AnnReid

I am sorry for your loss.

I lost someone close to me with ammonia in the brain, and same behaviors. He was not at all competent. Mine was jumping from windowsill to bed and back again yelling, cussing, etc. I don't have a clue on how staff would be able to compassionately care for him. It was impossible, even medicating him, he would throw meds at staff. A psych hospital may have worked better. Medically induced coma through withdrawal maybe? I just do not have a clue.

It is a very difficult illness to treat effectively. Compassion in normal circumstances is hard as staff have other patients that need care as well. Then add Covid that presents a whole new set of challenges.
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Reply to gladimhere

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