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.
Why ICU in the first place?
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.
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.
Please try to figure out what you are anxious about. Is it the deterioration of her condition? She will get to a point of "sleeping" most of the time and she will probably retain fluids since her kidneys and heart do not work well. Is it how she will pass? She will most likely have increasingly shallower breathing and be very sleepy and even impossible to rouse. Most likely she will pass quietly. Is it knowing she will be gone? Please contact a leader/pastor of your faith community to help you through this. Many people find that joining a grief support group is helpful for about a year. The members are either experiencing grief or have already journeyed through grief. Sometimes a counsellor leads the group. Is it the "what comes next"? The hospital staff and social services department staff can advise you on next steps once your mom has passed.
In the meantime, try to make short visits daily. Let her know you care. Let her know that everything is taken care of. Let her know it is OK to let go and to leave. As an RN, every patient seems to know the best way to leave. Some wait until all family have come to say good bye. Some prefer to have everybody around them while others wait until everybody is out of the room. Many may need a spiritual leader performing whatever last rites are important to the patient. Usually, people die peacefully.
* Please know that many of us feel a sense of guilt when a loved one dies. The 'why didn't I do xxx or more xxx'
This is a very normal reaction to feel even though knowing it is normal and many people feel as you do may NOT support you to feel differently. We can all, in retrospect, consider what we could have and would like to have done differently after someone passes, or even before. We can't go back; we can forgive our self and free up that space with healing and good energy - to be present in the moment/now.
* Please consider that honoring your feelings without judgment is respecting yourself, with compassion and understanding, and a way to honor your mom. Separate out the feelings from the thoughts (judgments).
First, recognize that these are two separate entities / parts of you. This will provide some perspective/focus that will support you through a difficult time.
* You are not allowing or disallowing your anxiety to be any specific way. It is how it is (honor it however it presences itself to you, knowing you are going through something that needs and wants to release / come out. Be with it. Do not push it away, honor it by acknowledging it and it will change).
In response: NO ---
"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."
* If your mom feels she isn't alone, all the better. She may be in a transitional state of mind (due to drugs and dementia). She will find comfort 'knowing' in her mind that she isn't alone. Be grateful she feels this way.
* She may not know 'in this plane of existence' that you are there although I believe she knows through energy and the atoms in the air that you are there, even if consciously she doesn't know. Most information transmitted is non-verbal.
* You have been there for seven years. Reframe your thoughts about your experience, commitment, time, caring;
- Consider / reframe the emotional / psychological and other ways of how you have extended your SELF - the essence of who you are- to her.
* It is time for you to be at peace within yourself. Whether you are religious and ask God for support or a Buddhist and sit and meditate (on your breath) or reflect on the 'good times' with your mom, imagine yourself 'floating on your red carpet of anxiety' and let it take you where it needs to go. Know that the red carpet is a soft cashmere, or if you mom knitted or crocheted, see it as something special she made for you.
* I send you a hug
* Know you can - and only you can - release the "pressure that is mounting" as you say. Simply let it go. By saying and focusing on releasing it, it will transform as this is your intention. This will allow you the space for peace and comfort.
*** And thanks and prays to your partner - how fortunate you are.
In the light, Gena
I made mistake of taking my mother out of hospital too soon. They did numerous tests & only came up with “worsening dementia!” & that I should increase the Seroquel. Well, she has these all day scream 😱 fests that are happening on a regular basis. Her screaming 😱 fire 🔥 & accusing me of setting fires 🔥. She will not take any food, drink or meds from this “fire bug” It gets so that I’m starting to believe I’m a mentally ill fire bug!! It’s called “mind control “ & she is succeeding. She believes I burned 2 houses down. I practically have given up control to her. As a matter of fact, I believe I practically have to set house on fire to stop her from torturing me! This past Tues when she started in with the fire business & was trying to escape the bed, I called ambulance & told them she’s hallucinating. I asked them to find a place for her. However, the places that would take her were awful & one of them was in Brooklyn. I live in Queens. Another she was in before when she needed emergency surgery 5 years ago & it was terrible then! I noticed many mistakes with meds dosage & got her into another SNF ..for 10 months. But it was costing a fortune…so I took her home…4 years & 8 months ago …& dementia getting so much worse with these hallucinations.
So don’t feel guilty at all. I wish I had more courage & patience to keep my mother in hospital longer till a better place would accept her.
Oh & btw, my Dad died 29 years ago in ICU because he needed blood transfusions. My mother & I were with him & right after we left room, he passed.
Just tell her you love her…
Good luck & hugs 🤗
Thank you for sharing your experience, you are doing the best you can, which is a lot more than most people would do.
I had a wonderful dad. As he was actively dying from Parkinson's, I know many of the times I went to be with him, he was 'someplace else' and didn't register my presence. If he spoke, he spoke of people from the other side who were coming for him. He was peaceful. I had NO issues that needed 'dealing with' before he passed.
There was zero guilt, because none of us had done him harm. He was lovingly cared for and we lovingly 'let him go'.
If you cannot handle seeing mom like this, either make phone calls as on poster said--or keep your visits very short.
Right before my grandma (aged 96 (?) died, she commented that she had more 'friends' on the other side than she had on earth and WHY couldn't she just DIE already? A widow of 37 years, she was aching to be with granddad. Her passing was sad, of course, but so, so joyous on the 'better side'.
Good luck.
When my dad was passing, the nurses had his anticipated time of death down to a three hour window. With that information, we were able to be there for the passing. It’s likely that the ICU will be able to the same within a day. So if you need to take a day for yourself, then take a day off. They staff will tell you it’s the very end. If the staff says, this is it, then I recommend pushing through and enduring until they require you to leave.
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
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.
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.
Now is the time to practice it. I agree that it’s really hard to not be there that moment, but I believe the people she she’s are there for her so she won’t be alone. But if that doesn’t lessen your concerns, it’s a tall order but maybe your wife could make an excuse for you. Or, go see her and tell her you might not be able to be present when she transitions but you’re always with her, or whatever it is you need to say.
I also believe that those who have passed before us know what’s going on with their loved ones while they are with Spirit (NDE).
Dont live or do things out of obligation alone, your stress won’t go away. Forgive yourself if you feel you need to, pray, and give yourself many breaks.
Wishing you healing.
hug!!!!
(((((((hugs)))))let the guilt go. You are doing nothing wrong and have done so many things right. You have seen that your mum has the best care for her conditions. Much caregiver's guilt is totally unwarranted. I wasn't there when my mum passed though I was there the day before. Give yourself a break. Some people wait until they are alone to pass. Its OK to stay away if you are finding it too hard to be there.
Your mother is already where she wants to be and it isn't here. Its ok to not be there. She knows what you are going thru and wouldn't want that for you. Would she?
Try to see from her eyes as if they are clear. She wouldn't want this for you.
It's just like God, He loves us and would never want us to suffer in any way because we thought he wouldn't forgive us or understand. He would and so will she. I'm trying to deal with this myself and I keep searching for answers but in the end, know she loves you and she is already where she wants to be. My mother was too. I have a brother that was and is no help at all. He never went to see her after she left the house to the nursing home. I was also the sole caregiver for 5-6 years without help of any kind. So I am in the same place but my mother has already left. Just know she will be going to a place more beautiful than we will ever know until we go ourselves. And she will be pain-free and happy there. Believe it. Don't beat yourself up. It is difficult, I know. I feel the same way but I know she is out of pain and that helps me a lot.