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My mom's doctor just called to tell me that my mother's latest blood test results are very worrisome. She has a UTI - the 6th one in 10 months. Every other time, they gave her oral antibiotics and they did not work, so we called 911 and whisked her off to the ER. She stayed in the hospital for a week each time - one time with septic shock in the ICU. They brought her back with IV antibiotics and fluids, but she has had a very limited quality of life and the UTIs keep happening and the cycle continues. She is 85. She told me the other day that she will not go back to the hospital under any circumstances, which I fully understand and respect. Yet she refuses to admit that the alternative is she will die. She never will. She will receive hospice services at home now, though she has no idea. She is pretty out of it. I'm scared and not sure how to go about my daily life with this constant massive knot in my stomach. I have to do something besides worry about her, right?? Silly question, I know. On top of it, people keep telling me I should be there a lot, but I'm getting more scared to go. I see her 2-3 times a week and lately she has not engaged at all and even asked me to please go and let her rest alone. So it's not like she's asking for me. People say "be gentle with yourself," and to me this means not forcing myself to see her die. She has incredible aides who will see her through this. I'm not saying I refuse to go right now, but I think when they tell me "it's time," I might not be able to go through with that experience and I don't want to feel obligated to. She would not want me to be traumatized more than I have been already.

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Wow! What a turn around. From non-verbal and almost died to wide awake and wanting to go out at night and resume physical therapy? Amazing.

Getting back to the reason of your post...In my opinion, I don't think it matters if you are there 'exactly' the moment she passes away. I think what's more important is that she knows you HAVE been there.

I was staying with my dad in the hospital 24/7 after his 2 severe strokes. The ONE night I slept at a friends house (close to the hospital), the nurse called me at 4:30 am and said it was close. He passed before I got there.

I started to feel guilty that I wasn't there for dad but then I stopped to think that he knew I'd been in the hospital a week with him. He knew he wasn't alone.

I firmly believe that dying people have some "wiggle room" as to exactly when their body ceases to exist. I've had patients hang on for a specific reason. They die after someone visits or calls.

I also believe that only part of us dies. The old, sick, tired, dysfunctual body. But the soul-the "essence" of who you are-lives on, now free from the constraints of an ever aging body.

I don't expect everyone to share my beliefs but it brings me joy to think of my dad without all the illnesses that bothered him in human form. As a spirit being, he's free to exist in that realm.

At the time I lived in Puerto Vallarta, Mexico and he was in Northern California. I flew up when he had the mini strokes. After he died, I told him to "fly" down to Mexico with me when I returned home and be with me. I believe he did.


Here's a thought you may want to consider to ease your fears.
A birth and a death are somewhat similar.
When born, a baby may sound gurglely and need help to clear their airway from mucous.... so does someone dying.

They both may have oxygen to help them breathe easier.

Both are helpless and dependent.

They both are journeying into unknown worlds, completely different from the existence they had.

A baby may pee or poo during or immediately after being born....so may the dying as they are departing.

A baby screams and cries coming into a bright, cold world and an elder is agitated about transitioning into their impending journey also.

We wash the baby in preparation to meet their familiy and we wash the elder in preparation to meet their Maker.

The baby has family all around....so does the elder.

However, the baby's journey is seen as a joyous event but the senior's journey is seen as a tragedy.

I believe the hardest time of life is here on earth. We joyously welcome a new human to our planet but we have the wrenching heartache to let the departing go on with what's next for them.

The baby will have a long lifespan.
The elder will depart this world forever. (Physical) Death is final. Being forcibly separated is the one thing we can't control. Draw on your faith to have peace.

And if you can't be there, don't be. And don't listen to anyone giving you flack. It's none of their business.
Good luck to you and mom.
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My mother seems to have recovered from her recent UTI (which had her at death's door last week) and is now remarkably with it. She keeps asking me who the hell put her on hospice (thanks to the stupid nurse who introduced her as the hospice nurse even though I told them not to use that word around her). She wants to go out tonight and re-start PT. It's a good thing, but this mother of mine confuses me!
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Yes, we are here with you. You are doing all that you can for your mom now, so go ahead and live your life too - do what's important to you. Life goes on, even though it seems like it should stop when your parent is coming to the end of hers. Hugs...
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((((((hugs))))))) Xina. Thanks for posting back. We are here with you.
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Well my mother is officially getting hospice care now. Boy, they are amazing, just as people say. Yesterday (Saturday) I was having a really hard time. I was reluctant, but I called a social worker w/the program who spoke with me on the phone for 30 minutes. She was the sweetest person and very comforting. She had someone call me and check in with me today, too. As awful as this is, we are just so fortunate to have access to these services.

They also delivered a "comfort care pack" which includes morphine! I knew they used it for hospice patients, but I had no idea you can just have it on hand like that! I will be tempted to try some myself!

On another note, I am having a very hard time compartmentalizing. I am looking for a job right now and it's so hard not to sit around feeling sad and scared. I don't spend a lot of time with my mother - she doesn't even want company at this point - but I feel like I'm living on another planet from everyone else right now. I can't suspend my job search, and I don't want to.
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Xina; Google "complicated grief". I'm glad you'll be talking to the hospice social worker. ((((((hugs))))))))
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Thank you all. I called my mom today and she could barely speak. She told her aide she does not want to talk to anyone. Nurse came and her vitals and breathing are fine and she is taking the ensures.

I think it is helping in a way that she is not wanting to talk or necessarily even have me around. She is partially gone. I keep having these panicked moments where I desperately want to call her, but she doesn't want to speak and is less and less lucid, so that is almost as painful as not talking to her at all.

Micalost, that is comforting to hear. I do need to do what is best for me. If she were asking for me, that would be different, but she's not. And she knows I'm a wimp. It's weird how now that's she's going, I think only of her good qualities and her recent vulnerability and cuteness. I wish I could access the very difficult and angry feelings I have about her too so I could feel less heartbroken! She has been so sweet and lovely since her stroke 2 years ago, so it's been a while since I've been furious with her.
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Oh poor dear, you do not have to do anything that you don't want to. I struggle with how to face this when the time comes, I know that I will be lead to do what is right for me. Believe for yourself that whatever you are meant to do, you will hear and feel the leading and respond. Death can be a beautiful experience or it can be frightening as h**l. It in my opinion is easier when a person leaves before their body dies, the struggle for life has already stopped, so rapid breathing, maybe deep breathe but no traumatic fight to stay alive, they are already gone.

I want my parents to know I love them and will do the best I can. I have the added benefit of knowing that no matter what I do they will not be pleased, so I only have my heart to contend with.

I pray that what ever you are lead to do, you find peace and acceptance in your heart with it.

I'm am sorry you are facing the lose of your mom. May you be granted grieving mercies and wisdom for this journey.
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The couple days before my dad passed I knew the time was near and stopped visiting. The morning he passed I called them before they called me. They wanted to know if I would come to see him before the coroner took him away- I said no. It was all just too painful and frightening for me. I was having panic attacks as it was when i visited - i couldnt handle seeing him leaving me.... - I couldnt even pick up his ashes and didnt bury him for months, and then they brought his ashes to the cemetery. ... I miss my old farty dad so much.
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You have made a good decision to have hospice there will be a grear deal of support for both Mom and you.
You don't have to be there when she dies if it is so painful. Many times the loved one will actually wait till they are alone before they pass. Visit if you can and share final thoughts with Mom, tell her you love her and that she is free to go and you will be OK going forward although you will miss her and never forget,
She is entering her final stages and it is usual for a loved one to with draw and prefer no visitors and stop eating or drinking. it is the loved ones way of prearing for their final journey.
During this time they may recieve spiritual visitors, often loved ones who have gone before or just friendly people they have never met. I personally believe these are visiting angels comming to prepare for the passing and who will guide them when the time comes.
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So glad to hear it, Xina.
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The hospice lady called me today and they are sending a nurse to evaluate her and start services on Friday. I really look forward to the social worker I'll have access to. That's going to be critical for me.
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Xina, hospice made my mom's passing very peaceful (which is what I had hoped). No gasping, just rapid breathing at the very end.
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xinabess I hear you. The hardest lesson I've ever had to learn because I'm a "rescuer" and a problem-solver, is that I don't rule the world and I can't control everything. I had to learn that when I had a dear, dear friend dying of kidney cancer. At first, I believed with just the right information and doctor we could save him. Over time I came to understand that I didn't control the outcome. He passed away when it was his time and I had to acccept it. I had another dear friend who passed away of cervical cancer. It was the same with her. Despite my best efforts and research, she still died.

Once you let go of the belief that you control the universe through your actions, life gets much easier for you. You can let things go and only worry about what you can do and have control over. Your mom will pass when her time comes whether you're there or not and no matter what you try to do to stop it. Maybe that's a lesson to be learned to make your journey easier. It won't be easy in the moment, but it's a lesson that will serve you well for the rest of your life. Maybe that's why my mom's passing wasn't so traumatic for me, I had already learned that lesson with two friends who passed before her. We will be here for you. Feel free to PM me anytime you want. We're here to support you.
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Wise words, blannie. I sit with my mom a lot these days. She is quiet and doesn't say anything unless you ask her something. Mostly, she stares into space. I feel calm at these times, but I fear being with her when she is "actively dying," meaning gasping for breath and gurgling and other symptoms I've read about. That will scare me and make me want to rescue her or run out of the room for sure. I know myself. I don't think it would be helpful for anyone for me to be there at that point - but as her only child, I feel like I have to rally, Sigh.
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I wasn't present for my dad's death, they called me right after he passed away. I felt terrible for a long time that I wasn't there. But I didn't know the end was coming. With my mom, when the hospice nurse said she'd probably pass that day, I stayed with her until she did. But I was in another room resting when she died. I guess I had been through so much with mom that being there to the end seemed like the right thing to do. It wasn't scary, it was just tiring and draining, since I didn't know how long she'd go on.

I don't like to give fear power because when we give in to fear, it grows in strength. My brother was afraid to go to a funeral. He avoided it until he was 70 years old. He even missed his mother-in-law's funeral (he'd been married 29 years) because of his fear. Now he's been to a funeral and he survived. Was he scared? I'm sure he was. I'm scared every time I go to a funeral. But I go.

So do what feels right, but if your reluctance to be with your mom is fear-based, please challenge that fear and what it's about. We're all going to die, it's a part of the circle of life. It's sad and scary and can be uplifting and full of grace and spirit. Please consider that part too. Sharing that journey with a loved one can be a very powerful, emotional experience. {Hugs}
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Xina - I understand your fear. I felt that same fear when my mother was very sick and close to dying. I was afraid to open her bedroom door and find her dead. Very afraid. My mother pulled through, though. I just hope I will not be alone when that time comes.
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The hardest part for me was being 3000 miles away from my mother when she was in hospice care. But i called everyday and made sure she had what she needed at home. They day she passed me and my mom had a great conversation. I told her i loved her and that I would talk to her tomorrow. My mom died 4 hours later peacefully. I know it is scary but i would visit as much as i could. She'll know your there. I think my mom felt i was there by her side all along.
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xinabess, so sorry you are going through this. Just listen to your gut on what you want to do.

For my Mom, when Hospice told me Mom had only 48 hours left, I decided to stay with her because in the past she didn't like to be alone. Mom was pretty much in a coma state for the past week, but for me I was glad I was there.

For my Dad, when Hospice said it would be quickly, next thing I knew Dad was in a coma state, I told Dad I loved him and that it was ok for him to join Mom, etc. I believe my Dad waited until I wasn't in the building when he passed as he didn't want me to view his death. So don't be surprise if you do visit that your Mom waits until you leave.
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It's hard for some people to understand what we go through when someone is in a declining stage of their life. Of course, the logic would say we should spend what little time with them that we can. But, it's not always easy. There are all sorts of conflicting emotions and priorities in our lives. We have other family, friends, jobs that can't necessarily be dropped for the unknown space of time in which our loved ones may pass away. I also found it difficult to face what was in a way my own mortality when watching my mother deteriorate from her dementia. We did go to visit, but not too frequently and in fact, when she passed (on mother's day) we were on our way to visit but got the news before we left the house. We lived several hours away from the home and it just wasn't possible to go constantly and we never really had a huge indication that it was imminent.

My advice is do what you feel you can. I think it's probably the right thing to continue regular visits even when they don't seem particularly responsive. But, you can only do so much and it's ok to be scared of the process. I think your hospice may be able to help you with some counseling resources as well so that you are more prepared. The fact is that you have arranged great care for your mother and at some point we have to accept that we just do the best we can. I hope you feel strong enough to continue being there for her but if it is too much to bear, you can't beat yourself up over it. You can't be a comfort to her if you are falling apart.
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Xina, I was very much where you were mentally before my mom died. I was pretty sure I didn't want to be there. I ended up being there, and it was so very very peaceful! Just be gentle with yourself, and accept no guilt from outsiders.
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I can only speak of my experience with my mother’s death. Once we knew for sure it was coming she was completely non responsive to everyone. She never had food again but was kept hydrated. I saw her a few times and it was very hard to watch. It was clear she was physically alive but already “ somewhere else” if that makes sense. There was never any indication she knew I was there. This went on for just over 2 weeks. My father was there most of everyday. She was alone when she died. We’ve always been mostly at peace with that as she had seemed already gone in so many ways for the weeks prior. Only you can decide what you’ll be at peace with in the days and years after, go with that. Blessings in the days ahead
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