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So my husband was in a nursing home and they allowed him to acquire a bone infection. The next nursing home had an outbreak of Covid and didn’t protect him let alone treat him at all. It’s been bad he fell out of bed and I wasn’t notified. I'd visit and he would be significantly worse so I’d mention it but no one would listen. To make a very long story short one day he was moved to the dementia/psychiatric ward and he really rapidly declined to the point that I was called and told he was being transferred to the hospital. Immediately I knew this had to be bad because they NEVER contacted me before. Then the hospital called me and asked me to come right away because they weren’t sure he’d make it thru the night and so off I went. I met the doctor who spent a total of maybe 5 minutes with me. I explained to her that I have mental health issues enough so that I’m on disability from the government. I collect SSD. That this was really hard for me. She foo fooed me in a placating manner and I sat watching my husband twitch and groan and not know I was there at all or if he did he know I brought zero comfort. Let me insert here that I am terrified to a phobic level of death. I didn’t even go to my own mothers funeral because it would have been too hard on me. So I stayed with my husband for 3.5ish hours. Getting home around 1-1:30am and fell into bed about an hour later. I woke up at 5:30am - nightmares and was up until 7 but then the neighbors dog started barking and freakin out my dogs at 9:30. Now I call the office at my apartment complex because this has been a recurring issue, and then the hospital calls and wants me back ASAP. I don’t think I can!!! I feel badly but my husband and I spoke about this years ago when mom passed that he didn’t want me to put myself thru any undo torture but I feel terrible not being there too. My sister is giving me crap saying I NEED to do this. I’m afraid HIS sister won’t understand. I KNOW the hospital won’t either. What on earth do I do? What do I say to get them to understand we knew this was how it should play out? How do I handle losing my best friend and watching him go thru what I can only describe as torture onto him? I don’t have a very strong faith component in my belief system so that’s just scaring me even more. I feel like I’m losing it, I’m gonna tip right off the edge of sanity!! HELP! Sorry this was so long as marbled but it’s how my mind is working.

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Katie, do you have a current therapist or social worker who can speak to the hospital social worker on your behalf?

Is husband on hospice? They might be a source of great comfort to you both.

(((Hugs))).
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KatieLee7210 Nov 2023
I do not have either because I had been in a really good place. This all happened so fast and unexpectedly I was completely blind sided but bet your bottom I’m gonna find one to help me through this. It’s blasted hard and absolutely every swear word I know, wouldn’t do it justice. Thank you for responding.
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Is there anyone else you can send to be with him instead... what about his sister? But bottom line is it's okay for you to not go. You can legitimately say you need to de-stress so turn off your phone if you have to.
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BurntCaregiver Nov 2023
Cwillie,

No it is not okay for someone else to go. This person is an adult. An adult who legally makes their own decisions and who does not live in a mental institution.

The person in the hospital is her husband. She owes him to be there in his final days.
Maybe not alone because everyone needs support. But be there just the same.
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Here's what you do. Look yourself in the mirror and say the following out loud:


This is NOT ABOUT ME. My husband who I love and honor is dying alone in a hospital bed.
I WILL get my sh*t together and be by his side for as long as it takes.
Whatever it does to my mental health and phobias, I will handle it because I am an adult.'

If you need to say this in front of the mirror a thousand times to make it stick, get over your damn self and do it.


Put your own crap aside for a little while and go be with your husband because it's very likely the last time you will ever be able to.

Your mental health issues and phobias will still be there when you get back. They aren't going anywhere.

Just go and do the right thing.



PS/ You're going to die some day. So am I and so is every living thing on this planet and even the planet itself.

Go be with your husband. Maybe don't go alone because everyone needs some support and help from time to time.
It's hard to watch the person you shared a life with suffer and be in their final days. But if you love and honor that person or ever did, you owe it to them.

In sickness and in health. You remember those words I'm sure.
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dafilia Nov 2023
Burnt - I believe her husband is an alcoholic and they were separated before he got sick.
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The answer to "what on earth do I do" you already answered for yourself and for us, when you told us that you CANNOT DO THIS.

I don't think "they" will understand.
But if they have known you some time, they may not be terribly surprised, and in the end it is of little import what they think. Thoughts don't kill.

I don't know what your mental illness is, but I do have mentally ill people in my own family ranging from depression to bipolar. They have help of therapy; they receive medication, and in most cases they function where and when they can/must albeit with some glitches, some help and some support. You are not alone in your feelings and your fear.

You have explained your fear of death to us.
We none of us are very happy about death and loss. Not for ourselves and not for those we love. Breakdowns and grief are expected, and in all truth they provide an outlet of pain gathered within us for many.

You are right now in a stage of grief that may last for a while.
Experts in grief work suggest that we spend a period of time wanting to BLAME something or someone else. The doctor, the nurse, the hospital take the brunt of this. But genes and family members come in for a few accusations as well. This staying in "blame" helps the person grieving in that it keeps the focus off of the loss. Blame suggests something could have been different. It is a kind of magical thinking. Grief understands that loss is final, and nothing can be done. No way out of it, but through it.

Keep in close touch with your mental health team, take your medications, take good care of yourself. Stop expecting others to understand.

I am so very sorry. I hope there are at least a few who support you through this terrible loss. My heart goes out to you. I so agree with cwillie, that if you can send your love through to your husband through others, that may help both him and you. Even notes and letters to him may help.
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KatieLee7210 Nov 2023
Thanks Alva, you have helped. I promise. Each and every one of you have helped me feel so not alone. My MH issues are vast but the one that’s getting the best of me right now is my boarderline personality disorder which is strongly rooted in fear of abandonment.
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I used to do death doula work and the most important thing I advocate, is SUPPORT not only for the dying, but also for YOU.
Do you have any friends that would go with you? Do you have any clergy that would assist you? If not, then I advise you call clergy (even if you do not belong to any specific denomination) and ask if there are any volunteers to sit with through this process.
Even if there is no time for you to do so, it may help you in the future with your fears and the fear of dying.
Faith is an accumulative investment. This does not mean that you have to be religious. It only means that you must believe in your own sanctity of peace. That's all. Rather than get into a long diatribe on what it is to become "spiritual", my suggestion at this point is to seek pure support. You're beginning to wrestle with guilt AND FEAR. So please, call a clergy because most clergy have a strong social work background.
I wish you peace and much much closure on the upcoming events.
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KatieLee7210 Nov 2023
That must have been interesting. I’ve heard of them but I don’t know what they do. If it hadn’t been happening so fast I would have liked to look into that. I have a neighbor who’s 2 out of 3 sons are pastors. She’s extremely spiritual and I talk to her all the time about my faith. The funny thing is I was just getting into a somewhat of a good place with that. I’ve been watching a lot of spiritual movies lately. I just watched the new movie “After Death” produced by Angle Studios. I highly recommend it to everyone who’s like me on the whole heaven/hell fence. I just have been praying and praying and it seems like everything just keeps getting worse. I mean I get God has his own plans but I can’t make any sense of it. Being a parent myself I try to understand how I love my children to how God love HIS children and it just doesn’t make any sense to me. And this is where the whole faith thing starts spinning g in my head. I I’ll take your advice tho and find someone with a completely objective perspective to talk to. Thanks for that piece of advice. I do want to ask you all about death doulas tho so maybe you can tell me about it when you have spare time.
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Call the hospital and lie, tell them you just tested positive for covid and you won't be able to go.

See if his sister or someone else can go if you cannot bring yourself to do this.

My condolences on your impending loss.
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KatieLee7210 Nov 2023
No one else lives near by. But I did go and sit for a while with him. I had all life saving measures stopped and put on comfort care. I’m home now just waiting for the final call. Thank you for your advice.
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Ask that he be referred to Hospice.
You could have him transferred to the Hospice In Patient Unit.
There will be staff with him and Volunteers that will be with him as well.
One of the things that Hospice will try to do is have someone with him 24/7 while Actively Dying the idea being is no one dies alone. So you do not have to be there, or if you are you will not be by yourself.
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sp196902 Nov 2023
The best answer and way for OP to deal with this.
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Profile says that she is sober 2 yrs. Her and husband were separated and getting along better. Then circumstances were such that she returned to the marriage.

" I sat watching my husband twitch and groan" I would hope DH has been put on comfort care. He should not have any pain or anxiety. If the hospital does not do this tell them u want hospice brought in. Hospice will make DH comfortable. You do not have to sit with husband 24/7. Go for coffee. The dining room should serve lunch and dinner. Go outside or walk the hall. You can go home after a few hours.

When my Mom was actively dying I took my nephew to see her. We stayed till 1:30pm. I got a call about 3pm she had passed but her death certificate said death was called at 1:50. 20 min after we left. She could have passed anytime in those 20 min. You could go to the bathroom and your DH could pass. Hearing is the last thing I have heard goes. So talk to him. He was there for you, tell him you appreciated that. Play his favorite music. Just sit and read a book. But if you feel you can't do it, then don't. Its you who will or will not regret it.
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AlvaDeer Nov 2023
OP and husband were separated, and now re-united? Thanks JoAnn for the extra information. Helps us get a picture of some of this.
Katie Lee, can you tell me if you are currently the POA for your husband, and whether or not you were currently residing as husband and wife?
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Advice I've received from others: Don't live your life for someone else. Do what is right for you.

The "hospital" - I assume you mean the people who are taking care of your husband - has/have seen just about everything, including people who don't want to be there when their loved ones die. It happens all the time. If you really can't, then you really can't.

My friend couldn't face her 35-year-old daughter's death from cancer. She asked her husband, the daughter's stepfather, to be with her instead. My friend sat outside the door while her husband held her daughter's hand at the time of passing. People understood. I understand. I've lost a child (suddenly through an accident), and although the geographical circumstances kept me from being there, I'm not sure I would have wanted to be in the room (he never regained consciousness after the accident) when he drew his last breath. So do it your way. And don't explain to anyone. This is your choice to make, and anyone who judges you isn't worth your attention. Maybe ever.

If you wish, you could ask your sister and sister-in-law to be with your husband when it's his time. Or, if you decide to be with him, ask them to stay there with you.

My sympathies on your impending loss, and I wish you peace. So sorry.
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KatieLee7210 Nov 2023
Thank you so much for your response. I did my best. I sang and we listened to his favorite kind of music and I talk and talked. I tried to reassure him that his family would be ok and that they are al together praying for him. I told him I’ll be alright and I promised to make him proud of me. I don’t actually think I will be ok but I didn’t want him to worry. The nurse suggested me leaving before it got bad for me and promised to be with him until the end. Apparently she has no other patients due to his condition. I told her all about him and us. Now I wait with his dogs and mine for the call that says he’s gone.
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Katie,

Please do whatever you feel most comfortable with. I struggled with these feelings too. I’m not at all comfortable being around someone who is dying. It doesn’t mean that I don’t care.

It has absolutely nothing to do with whether you care about someone or not. They already know that you care.

I am happy for people who wish to be with a person and they are able to make this happen. Sometimes, people are not able to be by someone’s bedside due to one reason or another. That doesn’t mean that they are ‘less than’ anyone else.

I have spoken to social workers in hospice about this and they say that a person should do what they need to do for themselves.
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KatieLee7210 Nov 2023
Hi. Thank you for your response. It was comforting. I stayed as long as I could and the nurse even encouraged me to go home. She will be there until the end for me and will call once he passes. I sang to him, played his favorite music, told him all I needed to tell him and put his sister on speaker so she could say her goodbyes too. I really appreciate your kindness during a very horrible situation.
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im sorry this last step of life is extremely hard.
Your mom’s death is utmost the worst one you have gone through. I get it .
Secondly, the place your husband got stage 4 bedsores was totally negligent in allowing his bedsores go to his bones. Blood travels. They couldn’t get him out of their facility fast enough it sounds like..
my MIL got stage 4,bedsores.. I don’t know if she ever got over then completely.
Once they transfer them out, they csn deny any wrong doing.
niw, how do you handle your hubby’s passing?
i found out, even the most atheist person has a bit of faith.. somewhere, somehow..
that’s another story for another time. Believe me.. he showed me after he died… he changed his mind.
you too will get signs from yourDH.
Take a breath… deep slow breaths.. before you go see him.. tonight.. close your eyes and see him the first time you met him.. smile. Tell him now in your heart how much you love him. Thank him for the wonderful times you shared.UNCONDITIONAL LOVE .

I am going to tell you the same thing I told my child, wasn’t sure about saying goodbye to grandma.. It is up to you, and nobody is going to make you feel guilty, but this is your chance to say I LOVE YOU for the last time in person. Just know you can always talk to them when they are liberated from their body, in spirit. And just know if you afk DH, he will answer you in a way that you will know..
but if he’s there and alone, holding a hand, playing his favorite music, anything you two shared… might help ease both of you..
seeing death is very hard..
and most people I know will wait for their loved ones to leave the room before they pass..
but to give you two that one last goodbye, may help you..

as a dear friend said::

DEATH IS OKAY
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The hospital will understand.
i don’t know, I find more people will wait for their loved ones to leave the room so they can pass over.. it happened a lot..
yiu and DH have discussed this, that’s all that matters.
Prayers are with you.
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KatieLee7210 Nov 2023
Thanks he does this morning
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You can only do what you can do . You don’t do what you can’t do . Many people don’t return to the hospital . Many people don’t want to witness the moment of death . The hospital will understand that . They call to give the “option” of coming back when death is soon . You won’t be the first person to decline returning to the hospital . You just tell the hospital , thank you for letting me know , I have said my Good Byes and am not up to returning . I would not worry what others think . You tell anyone that you made sure he will be comfortable , you had a long talk , etc, said your Good Bye and can’t go again and that a nurse will be with him . Now you need to take care of you . Grief counseling can help .
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KatieLee7210 Nov 2023
Thanks he passed. I will update on everything soon.
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My mother witnessed the moment of my dads death. It was supposedly peaceful but it’s something she is sorry she saw. Many elders actually put off dying IIf they can until they’re alone.

I would tell the hospital nicely that you’ve said your goodbyes but due to your medical conditions, you can’t keep coming every day.
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KatieLee7210 Nov 2023
Thanks but he passed this morning
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@ Katie:
Thoughts with you this a.m. on Thanksgiving, Katie.
Last I read your updates you were waiting for the phone to ring.
I am thankful for the support you have received from nurses you mention.

My experience of the dying, as an RN, was that they separate from even the most beloved of their own, and the ancient expression "He turned his face to the wall" comes of family's recognition that they choose and are busy with this passage, and leave the love of family to enter it.
I found this to be so, with some few mustering last moment to say goodbye, but more waiting for family to leave the room.
I do not fear dying because of all I learned watching the dying. I DO fear pain. I don't fear going, and think it is the last huge adventure of our lives.

Know that the thoughts of more than a few on the Forum are with you throughout this day. You say that you currently have no mental health support because of late you have been "in a good place". With your history, your fear of abandonment, your diagnosis, you are going to need support. Please reach out for it.

The only link I can find for a National Mental Health Hotline is this:

National Mental Health Hotline | 866-903-3787
They have a .org website as well if you look them up online.
I hope, if others have any resource ideas for Katie that they will post.

Hang in there, Katie. I am glad you have the support of the beloved Pets of you both, just hoping they are helping your burden more than adding to it.
Again, our thoughts are with you. Thank you for your responsiveness to us.
I hope you will update us.
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waytomisery Nov 2023
Very true . Countless times when I worked , the patients did not pass until all visitors left .
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Sending you hugs this morning and a thumbs up for your courage in going to see dh for 3 hours. I purposely left my dying parents rooms because I did NOT want to be left with the image of them taking their final breath for the rest of MY life.

I suggest you read this book when you are able:
Proof of Heaven: A Neurosurgeon's Journey Into The Afterlife, by Dr. Eben Alexander

It's a powerful book you can get on Amazon. Once you overcome some of your fear of death, life becomes a whole lot more enjoyable.

All the best.
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AlvaDeer Nov 2023
As Lea has recommended a book I will as well.
Not a new one, IS a short one, and one of the best books I have read.
C. S. Lewis A Grief Observed. He lost his wife. He was a believer (unlike me) and was briefly even angry with god, allowed himself that, returned eventually to his faith.
It is full of common sense to me.
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Thinking of you, Katie. And sending hugs.
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KatieLee7210 Nov 2023
Thank you but he died this morning.
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Katie, I hope you are doing well today.
(((hugs)))
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(((hugs)))) and hoping you had a decent Thanksgiving, Katie.
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KatieLee7210 Nov 2023
Thank you but he died this morning
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Thinking of you today, Katie.
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KatieLee7210 Nov 2023
He actually died today.
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So sorry for your loss Katie .
Glad you got to spend time with him yesterday and say good bye. He is at peace now .
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((((Katie)))
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Katie, I’m so sorry. He is at peace.
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Katie,
Peace be with you. It’s hard now, and grief will roll in and roll out like the ebbs of a tide.
You will find peace .
it gaoiens for my family and friends more often than not, they will pick a day to die..
Thanksgiving.. you two have this day in which to remember.
My GM died on July 4th, when her soul was liberated from her body.
my dear friend passed away on Valentine’s Day.❤️🙏❤️
I FIL died on my dad’s birthday. I ended up taking my mom n sunt for burial at sea on my Daf’s bday. Lots to remember for this day..
it’s ok. Death is ok.
Do not feel guilt
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Katie, I am so sorry for your loss.

In reading your replies, I suggest grief counseling eventually. You need to learn to deal with this anxiety you get. Death is a part of life and we all grieve but its not good to allow grief to take over your life.
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Katie,
My condolences out to you.
Please hug those pups, take good care of yourself, get the support you need.
I hope you will return to AC to update us on how you are doing.
I will leave this posting now, wishing you strength, peace and good support.
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I'm sorry for your grief, KatieLee. Your ex-husband is beyond all pain and suffering in God's good mercy now.

I'm proud of you for going and staying with him in at the end. I hope you are proud of yourself too because you should be. It takes a lot of courage and strength to be there.

Now you can grieve and get on with your own life in your own good time and with no regrets because you did what was right and decent by your ex-husband when he needed you.
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Consider counseling. It has helped me greatly. Mine addresses anticipatory grief for my 90 yr old Lewy Body mom, sibling issue and my ruined retirement. Counseling makes my life manageable.
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You get Hospice involved Immediately and get a social worker or therapist for support .
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You need a Psychiatrist or some support . I Know I dealt with Psychiatrists , doctors, social workers , therapists for support . Got Massages for the stress . Talked to the Nurses at Hospice . Talked to my Psychiatrists .... Always had a therapist or social worker .
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