In September, my Mom was diagnosed with a glioblastoma brain tumor. Doctors recommended surgery, followed by a regimen of chemo and radiation.
I went with her and my Dad to the surgery, and was with her for a few days after the surgery. I also made a trip back to the hospital (3-and-a-half hours away) to visit her. We had a nice visit that day, and her memory seemed SO much better after the surgery. We were all hopeful, even though doctors only gave her 12-14 months to live.
Then she began the chemo and radiation. She seemed fine the first couple of weeks on radiation, and I visited her a couple of times and, again, we had nice visits.
But then she quickly, inexplicably, got worse. (My personal belief is the radiation--which I was against from the start--caused her rapid decline. It was a new protocol where they give three weeks of higher-dose radiation, instead of six weeks of a lower dose. However, my Dad and other family members wanted to follow the doctor's advice and go with radiation, so, I reluctantly agreed to it.)
Anyway, as she began to decline, I drove the 3.5 hours to see her the Monday before Thanksgiving, and went to see her again on Thanksgiving Day. No one in Hospice could say how long she had, but her death, they said, was not imminent. Thanksgiving Day was difficult. My poor Mom was very teary-eyed nearly the entire time, and when the CNAs got her out of bed to go to the bathroom, she cried uncontrollably because she was in such pain. Then, about an hour later, she awoke from a deep sleep crying hysterically. I said, "Mom, can you tell me why you're so sad?" And she said, "I don't want to go up there." I asked, "Up where?" and she responded, "To God." I didn't know what to say, but all I could think of was to say something where she might feel as if she still had some control over her life. So, like an idiot, I said, "Well, Mom, you're in the driver's seat on that one. YOU decide IF, or WHEN to go. No one else."
In retrospect that was such a lame thing to say. But, it did seem to calm her down. She stopped crying, looked into space as if she was thinking about what I had said, and they replied, "Okay." I should have taken that opportunity to talk more about the reality of the situation. But I had to turn away to get a tissue as it was, telling her my allergies were acting up. (I didn't want her to know I was crying.)
Five days after Thanksgiving, I got a call from Hospice, saying Mom asked, "Where's my company?" I called Dad (who can't drive due to being left 85% blind from a stroke) and got a ride for him to immediately go see Mom. I asked the Hospice nurse how long Mom had, and she said, "probably a week."
I should have immediately left home and driven to see her. But I had an appointment to get new tires on my car (the front tires were nearly bald) and an oil change that Friday. I was able to get the car in on Thursday, so I thought I would take the car in then, and head home on Thursday night or Friday morning. The Hospice nurse said she thought that I would still have time to see Mom before she died.
Well, on Thursday afternoon as I was getting ready to head home, I got a call from my cousin that Mom died.
Several things pain me about this: (1) That I didn't leave immediately. I could have rented a car (I didn't feel safe with the bald tires due to impending storms). Why didn't I do that?! (2) My aunt told me that my cousin, whom no one in our family had seen in over a decade, walked into my Mom's room, and five minutes later, my Mom died. My aunt said "I think your Mom was waiting for you, and she thought your cousin was you. When your cousin walked in, I told your Mom, 'Everyone is here. It's okay for you to go. Okay, so I lied that everyone wasn't there. But because you weren't, I didn't want your Mom to have to hang on and wait for you. She wasn't conscious anyway.'" (3) Nearly all of my relatives (except my Dad) have told me repeatedly I should have been there. And, I know they are right.
I have no idea why I WASN'T there. Mom and I were always so close. She was ALWAYS there for me. I wasn't there when she took her last breath. And I can't get over the fact that, if she did wait for me and thought my cousin was me, that she would have been so disappointed/angry w/ me when/if she realized it wasn't me who walked in at the last moments of her life.
The only explanation is selfishness. Ever since Mom got sick, I had a lot of anticipatory grief, and cried nearly every day after I talked with her on the phone. It was so painful to have "lost" my Mom before she even died. But I should have made it about her, not me.
I have waited for some sign from Mom that she is okay now. But have received none. My Dad received some signs, so I can only assume Mom's spirit is so upset with me about not being there that she doesn't want to contact me. The only thing I can do now is be there for Dad. Hope that will somehow make up for not being there4Mom, but I know it won't.
My mom and I would switch off seeing him. My mom saw him in the afternoon and he was OK. The nurse called me at 4 PM and said she just wanted me to know that they had started him on oxygen. I asked if I should come and she said no, that he wasn't dying. Ninety minutes later, they called me and told me to come. When I got there, my dad was in the room alone and passed away. I was shocked and yet not shocked if that makes sense.
For a number of months after that, I felt like I should have been there. I should have "known" my dad was dying. I lost sight of the other 9 years that I'd taken care of him and my mom. Of how I'd moved heaven and earth to take the best care of him and my mother that I could. Now, seven years later, I can say I did the best I could. I'm not a psychic. I had no way of knowing that my dad's time had come. I wasn't there for that moment, but I was there for NINE YEARS before that moment.
I hope that in time, you can give yourself permission to realize you're not perfect. You can't see into the future. You are as important as your mom and dad and cousins and other relatives. You did the best you could. I am SURE your mom wouldn't want you to beat yourself up over this. You loved her with all of your heart and that's the most anyone could hope for. So hugs to you...I wish you peace and forgiveness for yourself. You deserve it.
If anyone let your mom down, it was the family member who untruthfully told her that "everyone is here" (although it may have been done with kind intentions). As for the other family members who have been telling you that you should have been there, they are letting you down. They have no business trying to pile guilt onto a grieving daughter--a loving and caring daughter who visited her mom repeatedly during her last illness, a loving and caring daughter who is mourning her mother.
I think the other thing with me, too, was that I just got so caught up in the day-to-day stuff that I forgot to really stop and think, "Hey, I need to BE there NOW." Mom was the one who took care of all the bookwork, etc,. for her and Dad, so after she got sick, I took over paying the bills for them online, scheduling drivers to take my Dad to see Mom, scheduling Dad's doctor appointments while Mom was sick, scheduling Mom's radiation appointments, and then having multiple phone conferences each week with Mom's care team (doctors, radiation folks, hospice, etc.). All of this from 200 miles away and holding down a full-time job. How insignificant those other "duties" seem now in retrospect. I am, however, thankful that I was able to be there for her surgery, because she was really scared going into that, and she said multiple times how glad she was that I was there with her and Dad for that. But, as I said, it can't replace being there at the end.
Everyone did the best they could, your cousin felt her little lie would comfort your Mom,the rest of the family are just trying to pass their own guilt on to you. You have nothing to feel guilty about. Glioblastoma is a disease with an unpredictable end so even the most experienced of caregivers, find it hard to predict when the end is close. Try and find peace and relax and you will hear from your Mom when she feels you are ready.
We had said all the improtant stuff, the I love yous and the I'm proud of yous, and I had as many visits as I could squeeze in. With Mom, I always had to keep visits short and sweet, with Dad we could hang out and watch TV or do an activity for the better part of a day. I was there for Mom's passing, and wish I had been for dad's, but I will always feel more OK about Dad because we had done all that.
And you did a lot for and with your mom too. I am going to go out on a limb and say that the people who tried to make you feel bad about not being there behaved HORRIBLY. I hope for the sake of their souls they just didn't understand the cruel impact of what they were saying. You were not supposed to drive on bald tires in a storm, and if you thought you had time, why would you rent a car instead?
The signs some people see are things we feel and hope, and are beyond any kind of proof. Let go, look back through the mementos that you have and create some things from them that will remind and comfort you. Be glad too, that Mom loved life enough that she did not want to leave it. Don't worry that you said one thing that was not strictly "correct" - you did not want to lose her, and she that, plus she knew you wanted to comfort her and were in pain because she was so upset.
I will bet you will have more sense that your Mom is OK when you can feel OK for more than a minute at a time. That takes a while....hugs and blessings to you!
I'm sorry about your mom, but know your mom understood and still loves you. You may not know it but she did send you a sign. It was taking your car to get new tires. She was looking out for you. You could have been behind the wheel upset,going faster then you should and could have crashed and maybe been injured of died yourself? Then, your family would have had 2 people to mourn.
Your story calls to mind 2 stories, one personal and one that happened in the news. If you had not seen or heard, a 19 year old Missouri teen lost both his parents to a separate head on collision when they were heading to the hospital to see him. The man in the car that hit his parents head on had been in another accident earlier. Both his accidents were the result of being on an icy road.
Personal. even though it was not a person. my family had 3 extra days with our wonderful dog. She was scheduled to go to the vet on a Sat, my brother came too late to go to the vet. Going to run errands and crossing a railroad track the power steering hose in the car was damaged and the power steering leaked out slowly. Since it was a Sat this happened, the car could not be fixed until Mon. It was fixed Mon, and off to the vet our wonderful dog went. Well, my mom got the bad news that it was too risky for her to have surgery (she had a head tilt), so he thought it best for her to be put to sleep. My mom took her leash as they led our wonderful dog to the back to be euthanized. He thought it best she not see this, which was the right decision, because it would be too upsetting.
The point of these stories,is that God works in mysterious ways, but he does not do things to cause hurt and pain to us. You weren't able to make it to say goodbye to your mom, but your mom knows how you feel about her, you can believe that.
Wishing all of you the best.
I don't see any reason or justification for second guessing or chastising yourself for that comment. You wanted to reassure her, to calm her, and that was certainly legitimate and sympathetic. The fact that she was calmer after you told her is to me evidence that your comments were what was needed at that time.
Having car issues to address when traveling is certainly a legitimate reason for not having gone. In retrospect, it's easy to consider having rented a car, but you also acted on the advice that your mother had another week. That's why you didn't rent a car; your decision was based on what were the known facts at that time.
It's unfortunate that your other relatives have raised your level of regret by telling you that you should have been there. Losing someone though is not an experience that we go through on a regular basis, and in all fairness, they probably didn't realize the effect of guilt it would have on you. Perhaps they weren't as strong as you and were relying on you to be there and help them through their trauma.
In your "I have no idea why I wasn't there..." paragraph, I have a different perspective. Your aunt was very perceptive in recognizing that your mother was close to death. She provided comfort to her by giving her permission to let go. Had she NOT done that, who knows how much longer your mother would have suffered waiting for you to come?
I doubt your mother really would have been disappointed, but no one will ever know. Is it worth the anguish to wonder about this? I say gently that I beliee you're torturing yourself, but also know that from experience, this can easily happen when the bonds of care are tight.
From what you write, you had a close relationship with her; perhaps that was as much as she needed from you at that time.
As to signs, w/o challenging anyone's beliefs, there is no scientific evidence that communications exist from beyond death. I understand the need to believe this, and that's fine if it consoles someone. But if it this kind of contact is relied on, with no guarantee, it can only upset you if it doesn't happen.
I think there's another issue and that's that sometimes we do sense contact after death (13 years after my sister's death I still awake suddenly after having dreamed of being with her again, in a healthy, non cancer situation, discussing things calmly as if she never had cancer).
I know it's a reflection of some anxiety or emotional level of mine, and it's not real. What it tells me is that there are issues of care that haven't yet worked their way out of my subconscious.
Perhaps your anxiety and self recrimination are blocking the thoughts that you would perceive as contact from your mother. I think that's more realistic than that your mother's spirit is dissatisfied with you.
Others I've known who have been in caregiving situations also have strong feelings of loss, sometimes of inadequacy, sometimes of not doing enough. I think that the level of responsibility for some else's care creates that total reliance on a caregiver and the caregiver's perception of total responsibility. that heightens the level and intensity of the loss.
When the negative thoughts arise, make a conscious effort to rechannel them and think of all the positive things you did for her.
When my Mom was in hospital her last week of life I was there almost 24/7. Every day the nurses would say "probably tomorrow" It was so important to me to be there when she died. She had been unconscious that whole week and I kept thinking that maybe just before she died she would wake up one last time and we could say good bye. As it turned out the last day I visited her I stayed four hours. I told myself, just stay four hours today cause you are making yourself sick. I went home and three hours later the hospital called to say she had passed. So I wasn't there when she passed and I regret that but maybe that is the way she wanted it. I don't know. I'll never know and to live my life beating myself up about something I'll never know won't do me or anyone else any good.
So regret, change your name to I loved my Mom and she knew it. Cause she did and she wouldn't want you to be sad.
This is a terribly recent event. It is bound still to be very painful. Try not to force the pace, but give yourself time to come to terms with losing your mother: that is the the real source of your grief; and the self-blame, the searching for signs... these are symptoms. You loved her very much, plainly. Do you really imagine she thought you had suddenly stopped just because you couldn't be there at her end?
Big hugs to you, and take care of yourself as well as your father.