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My mom is in her mid-70s and is nearing the end of her four-year cancer journey. We are one MRI away from confirming that her lung cancer has metastasized to her brain again. The sudden onset of symptoms is a familiar refrain; she went through a similar decline last December, had a sizable brain tumor removed in January, recovered exceptionally well while in the hospital and inpatient rehab, and then she endured intense radiation therapy that obliterated her quality of life in the months since. This time, we suspect multiple areas of the brain are impacted, so neither surgery nor radiation will be options. Her cognitive faculties and mobility are diminishing rapidly.
I live three states away. I've spent much of this year at my parents' home helping out with her care (which required minimal effort until now) and giving my dad a break from household obligations and grocery shopping and the like. I've been back in my home state, where I live with hubby and teenage sons, since the end of September. It was only a couple of weeks after my return that she started to decline, and her mental and physical issues have deteriorated enough in the last two weeks that her oncologist ordered the MRI. My siblings live in the same town as my parents, so they have been doing their part in and around work obligations.
I'm in my mid-40s and have never lost anyone close to me. My parents, siblings, and I are very close; we don't have many extended family members, so it's always been just us. I don't know how to deal with the grief I'm feeling now, nor can I fathom how I will deal with the actual grief once she dies. I feel like I'm standing on the train tracks, watching as the train barrels closer and closer, and there's no escape. I am filled with anxiety and dread, and feel physically ill will worry much of the time.
As an aside, I see a therapist every week (while I'm home) and take medication to actively manage clinical depression and anxiety since relapsing into the darkness 3.5 years ago. I have worked hard to get my life and career back on track, and I'm terrified that my mother's dying will pull the rug out from under me and put me right back there. While I'm not above begging for more meds to numb me through this process, I would prefer to avoid that if I can. I frequent these boards often and know that many of you have experienced significant losses. I'm hoping you can share what you've learned with me, so I can find my way through this.
I am sorry you are going through this and I do understand your concerns as I dealt with losing my own mother when I was 41, but I lived about 5 minutes away and had been very close to her my entire life. We lost her to cancer ultimately - but she had also gone through uterine cancer open heart surgery, and ultimately developed adrenal cancer which metastasized to her other organs and her Hospice nurse believed it had reached her brain there toward the end.
I will tell you that I found that even when you know the outcome - the end is still hard to accept. For me it was no easier and I was no more prepared to let her go at the end than I was early on. My mother had been so ill for so long and we knew she was not going to recover - but still - hope lingers in ones heart. While she was still lucid she made it very plain that she wanted no more surgery, no more treatments - only to be kept comfortable and to just let it run its course. It nearly killed my Dad to watch her go - they had been married almost 53 years.
Watching his grief only made us kids more aware of how great the loss was - not only our own but his. She had been his world for so long - and he was losing his primary reason for living. I was the youngest kid, and the only one not married. Dad and I were very close - so I refocused my attention from Mom onto Dad - after she was gone - and it was a distraction for me, but I never really got to grieve her as much as I felt I needed to. He needed me - and I was there for him...
I would encourage you to get Hospice involved with your Mother - they can provide her with excellent palliative care - and they can also help you kids channel your grief and point you to groups where you can talk to others going through the same situations you are going through. There are many things they can assist you with - and I have never ever known nursing care such as Hospice nurses. They are remarkable. I think ALL nurses are - but Hospice nurses are in a category all their own. How they cope with death on the level that they do - and with such dignity and compassion - is amazing to me. Your mother and your family would benefit greatly from what they can offer - please speak with your oncologist about contacting them. Whether you realize it or not - you have already started to grieve - it's natural when you know that death is coming. They can make it so much easier to understand it and make it less scary.
I never went to therapy - maybe I should have but I really had no time to focus on any of that. I was working full time and I had to immediately focus on my Dad - I was afraid I would lose him too. You don't need to be numb right now - you need your faculties about you so that you can experience this time with your mother - and absorb her as much as you can while she is here. If she is still lucid - it may not last long. Make sure that she knows how much she means to you and that there is nothing between you two that is left unsaid. Let her know how much you love her and also that when she is ready to "go" that it is okay...
I know this will be a difficult thing for you - and yet somehow we get through it. Our parents got through it with their parents. Somehow there is something inside us that comes through when we need it to - and you are stronger than you realize. Again, I'm sorry you're going through this and I do know how much it hurts. It does bring back a lot a pain - but know that when the heart heals the memories of your mother and the love you two have shared will always be there. She will always be in your heart. I will keep you in my thoughts and prayers.
My Mom passed away 4 years ago due to metasized colon cancer. She was a widow as my Dad died tragically when she was only 45 years old. I was 23 when he died.
My Mom had always been so strong and stubborn. When she was first diagnosed she told us that she would only try chemo one trial. Well she ended up doing extremely well and ended up with 12 rounds and then had a stroke. She had to move into a care facilty where I work.
My older sister and I talked so much at the beginning about what this was going to look like. We hadn't known anyone close to us with terminal cancer. As the months turned into a year with a lot of ups and downs, we would joke with Mom and sisters about life. My younger sister didn't live in our town so she had a extremely hard time not being with our Mom.
Mom took a turn for the worse, we could tell the cancer had spread to her brain. My younger sister came to stay with Mom. I was so glad when she called that Monday morning around 6:30 am to come because Mom was going to go soon and we wanted to be with her at the end.
Having her 3 daughters with her was nice, I know she knew we were with her. I remember vividly that I needed to pay attention. To see her rested face, to touch her soft hands, every sense of mine was working realizing that I would never see her again. So glad I stopped for a mila second to pay attention. Moms death was beautiful. She was not in pain, we stayed with her for a couple hours. I'm so glad we had talked so much prior to her death about what it might be like. It was very peaceful.
I truly felt like an adult orphan for a while afterwards. My younger sister is still having a difficult time with her grieving. One year later our only brother died unexpectantly.
Take care of yourself, please don't feel any guilt about not being there daily. There really is a trade off when caring for a sick family member. Some days we were burn't out {working, being a mom and a daughter} others we were so glad we got that extra time with her.
Dear ERH. I am so very sorry you, your mom and family have been going through this. My mom also went through a five year battle with cancer. She and I were extremely close. I remember doing laundry one day prior to her dying and thinking to myself, "I cannot do this, I cannot lose my mama."
I do believe we grieve before they die. I know I sure did. The tears flowed many times over those five years. Surprisingly, when she passed, I didn't cry at all since I was just so relieved she was free from her suffering, although she didn't suffer an extreme amount, for which I will be forever grateful. However, over the years, yes, I have cried for her many times.
Try to live one day at a time, my dear. This will be a rough journey for you, but I can tell you from experience, it will get better after a while. I still miss her terribly after 21 years. A dear friend of mine reminded me shortly after her death that I was indeed very lucky to have so much love from such a dear woman for the 37 years that I had her, and that some people live a lifetime not knowing that kind of love.
Sending you many hugs. No guilt, my dear. We are all on this journey of life, living it as imperfectly as we must because we are human. Don't be afraid to feel what you feel, and take meds if it will help. It helped me. Do whatever you need to do to get through this.
Your mama knows you love her, and that is all that matters.
Thank you all for your kind words and advice. I have been back to this thread daily to re-read your posts, and it has helped tremendously.
Today we got the news we'd been expecting but dreading all the same. Mom's cancer has infiltrated her brain again. This time, it is inoperable and no further treatment is indicated. My brother and sister-in-law have the unpleasant task of trying to help her and Dad understand (and face) the road ahead. They will meet with hospice later this week.
The doctor gave Mom a sliver of hope, saying that it was feasible to do targeted radiation to attempt to shrink the primary tumor and restore some of her faculties, but it was not something he would recommend, since her post-radiation quality of life would be greatly diminished. That, plus the fact that she has metastases in other parts of the brain and bone that are not near the primary tumor.
She, of course, wants to try it, but her logic is compromised by the tumor. She's not thinking clearly, nor understanding just how much lower her quality of life will sink. She and Dad have been each other's entire world since they were kids, 60 or so years, so I really think in the absence of pain (she is pain-free at present) she would do anything, at any sacrifice, to stay with him.
I also think he is really the only one who can tell her it's time to give up the fight and let nature take its course, but he will not do that unless my brother can convince him otherwise. It will, of course, be the absolute hardest thing he's ever had to do, but hopefully he can find his way to that conversation.
It's a difficult time, only just beginning really, but I am managing well so far. If nothing changes with her day-to-day health, I will return in mid-December with my kids for the holidays, then stay behind until she's gone (and after, to care for Dad as needed).
If anyone can shed light on what this first consultation with hospice will be like, what to expect, etc., I would greatly appreciate it.
My husband died of a primary brain tumor, and was under hospice care in the last 3-4 weeks. My advice is to get them going as quickly as possible because it does seem to take a week or so to get the full services together. Speak up and say what you want. An example: I told the hospice nurse that I did not want to be there when my husband's body was taken away, as I did not want that memory. She was totally willing to call the (pre-arranged) funeral home, wait until they came and supervise all that happened. When they knocked on the door, my son and sister and I went out and sat on the deck. The nurse came out and told us when it was over. The final day of the dying process was similar for both my mom and my husband, though she died of vascular dementia (atherosclerosis of the brain and lots of small strokes.) Have the nurse go over the process of dying carefully with your family. It can be scary if you don't understand what is happening. The body has pretty predictable patterns of shutting down. Be sure to keep the lines of communication open with your dad. The last thing you want is to have him regret allowing some service that wasn't necessary and that he may have seen as intrusive. You and your dad need to make sure that there are no regrets about how the whole thing progresses. Do not hesitate to call for a hospice nurse in the middle of the night, if that's what you need.
My hospice had a support group that was immense value to me. It was a "spousal loss after 60" group of 10 men and women, and was once a week for 8 weeks. I don't know your dad, but for me, this was very helpful in connecting with others who understood what I was going through. There may also be support of other family members. Always remember, for your father's sake, that losing a spouse and losing a parent or grandparent are different things. We all feel grief, but the degree and nature of the grief is different. I truly believe that you don't understand what the loss of a spouse means until it happens to you. That's why support groups can be so valuable.
Dear ERH. I am so very sorry you, your mom and family have been going through this. My mom also went through a five year battle with cancer. She and I were extremely close. I remember doing laundry one day prior to her dying and thinking to myself, "I cannot do this, I cannot lose my mama."
I do believe we grieve before they die. I know I sure did. The tears flowed many times over those five years. Surprisingly, when she passed, I didn't cry at all since I was just so relieved she was free from her suffering, although she didn't suffer an extreme amount, for which I will be forever grateful. However, over the years, yes, I have cried for her many times.
Try to live one day at a time, my dear. This will be a rough journey for you, but I can tell you from experience, it will get better after a while. I still miss her terribly after 21 years. A dear friend of mine reminded me shortly after her death that I was indeed very lucky to have so much love from such a dear woman for the 37 years that I had her, and that some people live a lifetime not knowing that kind of love.
Sending you many hugs. No guilt, my dear. We are all on this journey of life, living it as imperfectly as we must because we are human. Don't be afraid to feel what you feel, and take meds if it will help. It helped me. Do whatever you need to do to get through this.
Your mama knows you love her, and that is all that matters.
What a beautiful answer. I lost my mother back in '93 and I was like you. I knew she was dying, but losing her was still a shock and terribly devastating. I didn't cry when I heard she'd passed, and didn't cry at the funeral and burial, but I made up for it in my "alone" time. Sometimes I had to pull to the side of the road because I couldn't see through my tears.
I was also lucky to have her for 40 loving years of my life. She was a wonderful mom and gave her four kids the best upbringing she could after my dad died of a heart attack years earlier. (I was 10 years old)
To the OP, I'm sorry you are going through this, and as trobesmom said, it will get easier. It just takes time and a lot of tears. (HUGS)
Thanks, G Grasshopper and gouligann. So far, I've managed to keep it together, but talking to my dad about everything he's having to deal with daily just makes my heart ache. I will be going down there Sunday, a week earlier than planned. We're still not clear on whether someone will be coming out to the house 2-3X during the week to give him a break, relieve him while he runs errands, etc. Should we ask for this, or will they offer?
My mom is 70 & has stage four cancer while her doctor didn't give her a set time he did say that at this point what's left of her life should be about quality not quantity. This time the cancer is on her typhoid's
she did chemo (even though she said she never would again & did some radiation.) At this point if she did anymore she would go even quicker. She always had some type of starting at the age of 27. There are times where we are out together & I see how small she has got & I weep when she isn't looking my wife see's is but my mom doesn't. I cry sometimes as I go to sleep or when I'm reading a book & I look up & see her with nothing but skin & bones. She's lost so much weight. It's hard knowing that she might not wake up one morning or I may leave & come back & she has passed. She tries to be tough likes she's always been though out her life. As much as she needs help around the house & with her animals she doesn't like the help while she's still able to do it herself. Nor do we do it right as far as she is concerned. But we try to look past it as best as we can.
I know everyone grieves differently this might sound harsh but I think most of my grieving is going though this & watching her go. I don't think I'll grieve when she does I'll be to exhausted to do anymore.
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as far as she is concerned. But we try to look past it as best as we can.
