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SauceBoss Asked November 2021

Dying Mom is in ICU. I am overwhelmed with guilt, that is self-afflicted. Need some opinions.

Good day everyone - I'll try to be brief, but get my point across. My Mom is in ICU, and there isn't much time left. I am her sole caregiver and have been since my dad passed away seven years ago. She has been in a steady decline over the last 3-4 months or so, but the last month has been the worst. Among the issues she suffers from are dementia, thyroid condition, cancer, stage-5 renal failure and some heart failure. Her dementia recently showed a sharp decline and she ended up in the hospital due to not being able to take her meds properly. We got her back to somewhat normal (normal for her) and got her into Memory Care where she was doing well for the first 3 weeks. This past week, the ended up in the ER with what was believed to be an allergic reaction, then showed fluid buildup and now she's in the ICU with pneumonia and the prognosis is not good. I have gone to see her every few days for the last months. However, in the last few weeks, it has been increasingly more difficult for me to see her. She is rarely lucid, and it's like I'm not there or not familiar to her. Now, since she's been in the hospital, the last few days it's causing my so much anxiety knowing that this is the end that I can't bring myself to go see her. Now, I did see her yesterday before she went into ICU and she was barely able to speak, not making much sense, but did occasionally have semi-lucid moments where she would mention people that had passed a long time ago and how she was with them. She even mentioned that her mother, who passed in 1974 was there and said she'd be back for her soon. So, I'm feeling guilty and really beating myself for not wanting to see her today even though I know it may be the last time and also know that she may not even know me or be conscious enough. I also know that up to this point I have done everything I possible could to make her life and transition to the next step as easy as possible for her, giving her the best of care. Am I horrible for allowing my anxiety to let me feel like this? I don't want her to be alone in her last moments, but I don't even know if she knows I am there. Also, somehow I don't think in her mind she's alone. Any advice? I should also mention that I am an only child and have been the only person with any involvement in any of this, besides my wife, of course who has been a wonderful partner and support system for me. The pressure is mounting.

AlvaDeer Nov 2021
I honestly think from the beauty and honesty of all you write to us you already know that your Mom is passing from this world to another. In my experience as a nurse the new word she is going to becomes the preferred world and those here trying to make her stay with them, respond to them, are more a burden than anything else to the transition she is making. It is very common for those passing to "see" and communicate with those who have already passed, and while, in my entire career as an RN I never saw a patient have a near death experience, I always saw them respond to those they "saw" who had already passed. I believe they long to go to what they see as peace and relief of the struggles this life has become for them. You have done all you can for your Mom. Your presence may comfort her and it may not; it may make her struggle to stay with you. I do believe, as I said, that you already have the answers you need. To be anxious as you lose the person who you have been thus attached to over 7 years is normal. Please allow yourself all the feelings, and allow yourself to recognize the beauty of a life long lived, and love well repaid to your Mom. We all grieve in different ways. We struggle with "guilt" when the more proper word is "grief". We question ourselves in order to suggest that there is something we might have done to keep the person, some way not to have to go into this final loss. Take your time and trust the process. I wish you the best. Social Workers can suggest to you a Licensed Social Worker who practices helping with life transitions and the grief process; they are often wonderful. I hope you have hospice which is such a comfort to the dying and to their families. Love out to you.
DILKimba Nov 2021
Beautifully said, Alva!
lealonnie1 Nov 2021
Your mother is not alone; she's surrounded by her mother and other loved ones who have already passed & who are filling her with peace & love right now, awaiting her arrival. She's told you that, so believe it! Plus, you know she's not lucid, so you going to visit her isn't for HER sake, but for yours. What a visit will leave you with is a last memory of her in THIS condition. So, only you know what the 'right' thing to do is, meaning, how will YOU fare if you decide to go for a visit vs. if you decide not to? Once she passes, will you be filled with remorse for not going? If so, then GO, even if it hurts you to see her in such condition. But, if you know in your heart that she's not alone, is being tended to by the hospital staff and won't even realize your presence there, then don't. But be okay with whatever decision you make. Of course you're not a 'horrible person' whatever you decide to do. No son who's cared for his mother for 7 years is 'horrible', no matter HOW you cut the mustard!

My SIL just passed on Friday and we couldn't go see her b/c she had Covid and was on a ventilator. My DH (her brother) is immunocompromised & awaiting a liver transplant, so neither of us are in any position to suit up and go into such an environment. And, even if we were, I'm not sure we were emotionally equipped to see her in such condition. So the chaplain called us on the phone so we could say our goodbyes to her; he held the phone up to her ear and we each had a turn to say our final farewells. We are at peace with that choice. Perhaps you can speak with your mom on the phone rather than go into the ICU for a visit, or the nurse can arrange a zoom call? I don't know, that's up to you of course.

However this turns out, I am sorry you are going through such a thing. Please don't be hard on yourself right now b/c you don't deserve any added stress. Remember your mom in happy times and cling to that memory. Wishing you peace and acceptance with what lies ahead. Sending you a hug and a prayer.

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SauceBoss Dec 2021
UPDATE FROM ORIGINAL POSTER - thank you all for your heartfelt responses, I enjoyed reading them and appreciated every one of them. My Mom passed peacefully on December 3rd after being admitted to hospice after 2 days in the ICU. I met with and prayed with the hospice chaplain after we spoke about all the things I mentioned in my post. Her take on it was that was most likely grieving this for quite some time and it became a relief for me when she finally passed. I certainly agree with the assessment. I did everything I promised my Mom I would do, from having a Catholic Priest give her the last rites to having her final resting place next to my Dad. Thank you all for your support, it was most appreciated. Merry Christmas and Happy Holidays.
bundleofjoy Dec 2021
my deepest condolences to you.

hug!!!!
againx100 Nov 2021
Don't be too hard on yourself. You do not need to be there all the time. Go when/if you want to. It's not so horrible for someone to die alone. It happens all the time. Again, don't be hard on yourself.

sjplegacy Nov 2021
Mental preparation for a LO's death is complicated, and at times even frightening, worrying about the future and a life without your LO.

We can plan in advance for our LOs passing, the paper work, the funeral, the cemetery arrangements. It's just a check list. But how do we overcome the emotions that always overwhelms us? Guilt ( and you're right, it is self imposed, but it's not wrong, it just is), grief, and the anticipation of her death, regrets of all kinds, worrying you won't be there, remorse, even anger, are all natural feelings we experience. (How many more did I miss). You just can't check off grief, guilt, or any of your emotions. These emotions are uninvited and unpreventable. But they all validate your love and concern for your mom. Without love, there's no grief. There is no one way we're supposed to feel.

You may not be there when she dies, that's beyond your control, unless you can be with her 24/7/365, which you can't. My wife was in a coma 14 days before she died. I got called at 3 AM by the hospice nurse because she thought my wife would die any moment. I spent 13 hours at her side before leaving. She didn't die, in fact, her breathing had improved.

During her coma, I tried to coax her into moving on. As Polarbear states, I, too, was told hearing is the last sense to go. So I told my wife that the Lord was waiting for her. I also told her that her dad, a German immigrant who loved cigars, had a “special” cigar he was waiting to light up to celebrate their reunion. It didn't help. My wife died without me at 10:25AM while I was at church that Sunday morning.

So you may not be there at the moment of death, so make the best of your time when you can. Speak to her, hold her hand, reminisce.
SauceBoss Dec 2021
Thank you for the kind words. My mom passed away very peacefully on December 3rd. After 3 days in the ICU, I was contacted by the Palliative Care Manager at the hospital and we made the decision that she would need to go to a hospice facility. On the second day, I spoke at length with the hospice Chaplain and prayed with her also. While I was not able to bring myself to see her again, I did make sure that she was well taken care of from having a Priest give her the last rites to the funeral mass she requested and also her final resting place next to my Dad in the family plot in NY. All in all, I am doing fine. Considering all I had done for the past 2 years, it was likely that I hade been grieving this before it all happened since I had been watching it all unfold. The chaplain told me that also. I want to thank you for taking the time to respond to my post and also for your kind words. Merry Christmas, Happy Holidays and God Bless!
Lizbitty Nov 2021
These times are especially difficult. I’m sorry you’re going through these hard times.

If I could give you any advice it would be a gentle word of warning. However guilty you feel now for staying away, it is nothing to how guilty you may feel later on after she has died. It’s unpleasant and heartbreaking as all death is, and makes us uncomfortable, but go and say goodbye. You’ll never get another chance.

Oftentimes people are taken aback once their loved one has died just how final it is. Of course it is, we all know it is, but it feels different when you’re in the thick of it.

If you can make peace with it and stay away, then stay away. If you think your future regrets may be larger than your current ones, then go and say goodbye.

Take care.

schnipley Nov 2021
Many of us kno& understand what yard feeling & going through.
How ever, I don't agree with some of the advice.
Not to say that this happens with every person, but my Grandpa didn't even recognize my Mom who spent everyday all day with him
I had given him a card with a photo of all 6 great grandkids.
My Mom & Aunt were just talking to him as if there was nothing wrong just as they had their entire life
They had the photo & were telling him the names of the kids pointing at each one, he had Alzheimer's for about 2 years & hardly spoke.
He looked at the photo & said something about each child.
He said "that's David & pointed to my son saying he's a good boy"
& then passed away 20 minutes later.
So you see you may think she's not there but there's not always tge case
I believe they can hear you but that's my belief
You have to do what's best for you.
YOU choose how to remember them
Years later when my Mom died I was with her.
Shw was nothing like her normal self but that is not how I remember her.
I hope this helps
sjplegacy Nov 2021
"YOU choose how to remember them". A great post, schnipley. I agree whole heartedly with reminiscing. It can be very therapeutic.
Silverspring Nov 2021
If it were me, I would see the hospital chaplain and explain how I was feeling. I'm thinking that person can give you some solid guidance on what you are feeling and how to handle it.
Maryjann Nov 2021
Good idea. They've probably seen it all and have perspective.
polarbear Nov 2021
SauceBoss - from what a Hospice nurse told me, hearing is the last sense to go. Even for those that seem unconscious, they may still hear what you say. Perhaps, you want to come and tell her what you want/need to tell before she passes.

I don't know if you believe in the after life. If you do, then be comforted by what your mom told you that her late relatives were there to help her cross over. This is a temporary good-bye. You will see your mother again.

Daughterof1930 Nov 2021
I’m sorry for what you’re going through. I was with my dad during his final week and can definitely say that dying is very much a solo journey. I was too emotional to say much, and that was okay, we both knew the love and care we had for each other. I’m sure your mom knows your love and care also. Being there for the last moment is to me highly overrated, despite being told the familiar “hearing is the last to go” my dad was completely checked out his last day and showed no indication of hearing much less responding. His kind hospice nurse told me he was really already gone and just waiting for his body to catch up. You’ve been an excellent caregiver and friend to your mom, now care for you. I wish you both peace

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