For all the writing I’ve been doing about the experience of helping my mother end her life in the way she wants, I’m finding that I’m frustrated by my inability to convey what this is really like.
I’m sure that most of that is due to the fact that, for as rich and expressive as our language is, it has some pretty significant and sometimes crippling inadequacies. How does one adequately describe the conflict of wanting – but not wanting – your loved one to pass? What words do we use to express the feeling of wanting desperately to do everything within our power to make the patient feel comfortable and safe while at the same time resenting the fact that, in order for that care to happen, the care giver’s life has to be almost completely set aside? How does a woman reconcile to herself – never mind express to others – the King Solomon-like pull between her roles as daughter, mother, and wife, and the feeling like she’s failing miserably at all of them?
I really do think that, like childbirth, this experience can only be fully appreciated by those who have gone through it – or something similar. I’m even finding that my attitudes and thinking about this whole process is entirely different than they were before I found myself neck-deep in it. I remember feeling quite smug while I listened to Ellie warn, in our very first family meeting on the occasion of Mom’s admission to the hospice program, that care givers burn out very quickly. “That won’t happen to me,” I thought; “I love my mother and I want to do everything I can for her. My family is supportive, I’ve got the time and the skills. I can totally do this.”
Yeah, right.
I often find myself taken aback by some of the things I think and feel as this progresses. All the feelings (at least, those that I’ve copped to thus far) that my friends tell me are “perfectly human” are often shocking to me, and I would never in a million years have thought myself capable of any of them. I’ve experienced almost vicious feelings of resentment and ire, I’ve been blood-boilingly angry, and I’ve had to deal with crushing guilt over all of it. How can I be angry and resentful at my mother – this woman who loved and cared for me and who certainly didn’t choose for any of this to happen? And yet, that’s sometimes how I feel.
Despite all of it, I’m grateful for the experience; I’m learning things about myself that I would never have had the opportunity to see otherwise. I am, regardless of my conflicting feelings, confident that I am doing an astounding job; I will know that I did everything I possibly could and that it was good enough. For all of that, though? I will be so relieved when it’s all over.



I’ve never been through anything like this, so I have no idea what you must be going through or even how to respond to this post, but I wanted you to know that I’m here for you.
I think “knowing that you did all you could” has got to mean something. From what you’ve written, it sounds as though you’re doing an AMAZING job for your mom and couldn’t possibly do more.
I’m so sorry you’re going through all of this right now. I think all the feelings you’re going through are normal. It’s almost like you’re going through the grieving process now (I could totally be wrong…that’s just what your post sounds like to me – who’s never been through this before). Maybe your mind and heart are simply getting you ready for her passing in ways you never thought possible.
Please know I’m here for you…even on days I don’t comment. I love you! Hang in there. You’re constantly in my thoughts.
SAA, thank you. I’m feeling a little weepy over this response. Knowing that there are people out there loving me (even (especially?) people who’ve never met me in the real world) really does help keep me upright.
I think I AM going through the grieving process now. By the time she’s passed, I think my primary feeling will be relief.
I agree that we can’t really know what it’s like…but I just watched my boss go through this for the last year and a half, and spent a lot of time meditating on what it would be like if I was in that situation. And I find everything that you’re expressing completely understandable.
She was devastated when her mother finally passed…and although it didn’t remotely have anything to do with me, I found her devastation baffling. I would have felt major relief along with the grief – which I already would have been living with for many moons. As you are.
I remember the guilty relief when my grandfather finally passed. I think all of his caretakers felt it but none of us talked about it at the time. Mostly, I was relieved that his pain was gone. It was hard to watch him suffer.
I felt sometimes like time was frozen. I was aware of the world moving on with me suspended in this cancer world. And I couldn’t remember normal.
Sending much love. It is what I’ve got to give.
Being human is the blunt truth along with the compassionate, the enraged emotional responses with the shock they engender by the other side of the soul. This is messy, it’s complex, it’s frustrating, it calls for an immense amount of patience and it’s so fucking hard. Keep taking the breathers you can, put one thought in front of the other and be easy on yourself.
When my grandmother passed after all her organ systems failed, everyone was so relieved that he shiva – the gathering of all friends and family to celebrate the life that had gone, was sad but relief was palpable. I strongly suggest that if possible, the deconstruction, the communal relief sharing that you will experience with such a gathering (and you won’t need 10 men!) will help heal. If Bill is up to taking part, so be it, but really, YOU will need it first and foremost.
Peace will come.
Love!
Have you read any of the JD Robb “In Death” series? They’re set about 50 years into the future … and what I think about most when I read your posts is how in that future society a person can legally apply for and receive self-termination drugs for situations explicitly like this. The laws in this fictitious society cover things like the person must request for themselves, provide medical proof of terminal lingering disease/disability, must use the drugs by a specified time or forfeit them, or some such. Of course, this society is complete fiction, but I wonder if your mother would want the choice right now? Would I for myself? I don’t know … I couldn’t know until I was in the position your mother finds herself in. Tough moral questions, but something about the emotional costs of this terribly painful lingering makes me wish there was a way to bring peace to all.
Wxchick, this is something that I’ve been thinking a lot about lately (Gee, Chili; ya THINK?!). Why is it that we’re okay with euthanizing animals, but we balk at the idea of self-termination or assisted suicide?
What’s so astounding to me is this; if we had told Mom five years ago that she’d end up like this, I know, down to the exact words, what she would have said. “If I ever get like that, take me out back and shoot me.” Now that she’s in it, though, she’s thinking differently. I can’t understand what that’s about; it’s not me, it’s not my pain, it’s not my choice.
That being said, though, she DOES have the option of ending her own life whenever she wishes. When the hospice nurse came in, she told us that we were to keep all the droppers of her breakthrough meds filled and accessible to her. Ostensibly, it was so that she could reach them when she needed them and not need anyone’s help, but there’s no real need for ALL the droppers to be filled. She couldn’t have suggested the option, but making sure it was available was one of the first things Ellie did.
A few weeks ago, Mom asked to watch Million Dollar Baby (she’d seen it before, I hadn’t). After it was over, I wondered if she had an ulterior motive (SPOILER ALERT – the main character ends up paralyzed from the neck down and asks her boxing coach to help her die). and I asked her if there was a reason she wanted to see the film. She denied that she wanted to plant the idea in my head, but I told her that even though I could not actively help her (we don’t live in an assisted suicide state), I would not object to her making that choice.
my poor love. yes , I have been there…with the guilt of living in another country with small children, and thus unable to do what I felt was enough.
However much you are expecting it, it is still a shock when they go. My feelings were such a mixture of guilt and relief, and missing them being there, even at the end of a phone…someone to tell your triumphs and disasters to…
There was one unexpected joy afterwards, however.
Suddenly, their whole life and personalities snapped into deep focus, and I remembered not only that person who was recently suffering, but the person that they were when in their prime. That is still something to treasure…
I recall, and suspect I always will, the thought regarding my mother that it would be better if she let go, and the relief when our (her 6 kids) voted to “pull the plug.” Of course, recalling the thought recalls the guilt. I was terribly sad, of course, but have not found myself regretting the decision.
I was “lucky” my mom spent her last months in the hospital, and thus the messier parts of her care were seen to by professionals.
I have lost both of my parents, and were with them both throughout the process: my mother died 11 years ago. My children were 6 and 9. My Dad had a massive stroke on Fathers’ Day 2 years ago and died 3 weeks later. Both my parents had hospice care. I UNDERSTAND.
Having experienced this first hand, I will tell you that death often brings out the best and the worst in families. You are at your wits end, with no help from anyone, no wonder you are angry. You have that right to be angry, resentful of your life being pulled apart and you are sick and tired of all of crap. I agree that this may be one of the ways you’re coping as you watch your mom dying.
Death is so bittersweet in the end. You love your mom, yet at the same time you resent her through no fault of your own or hers. It is one of the most astounding moments in your life. One thing I know is that you will be alright because you are grounded and full of love.
We all know that you are doing a great job taking care of mom. Be extra kind to yourself during this time. It is OK to feel this way. In the end you will know you did the best you could do. Nothing more and nothing less.
However in the event mom lives longer, then you might want to suggest that since no one else is sharing the load that she may have to get up and help herself. OMG! Did I just say that? My twisted sense of humor gets the best of me at times.
May you find the strength to see you through this process.
been there, done that, and have the t-shirt. No one knows it until they have lived and then even that is different depending on the circumstances. I am a strong proponent of assisted suicide but not sure I could make that decision.
Be strong and remember to breathe…this is just another chapter in your biography.
You are doing what you have to do–finding the best of it and going with that. It’s difficult to understand what is gained by all of this, but at the very least, strong people get stronger and learn a lot about themselves. Sometimes strong people need a reminder (not-so-gentle) that they have limitations. This is a horrible way to learn lessons, but we have to take those lessons. That may be the only “bright” side.
May not help much, but the experience is one of those things that you HAVE to live to understand. The only good thing about it is that at some point, someone you really care about will be going through the same thing, and you can provide a bit of support…..
All I can say is you’re doing amazing things, and this is just one of those things in life that you have to stuimble through as best as you can…
Love ya sweetie, you know where i am..
The dicy thing about assisted suicide, in my mind, is the when. I think of all the wonderful things there have been about the time you’ve spent with your mom – her party, the movies, the important conversations, even what you’ve learned about Bill – and many of the people I’ve known who’ve taken that route have done it much earlier in the process thus robbing themselves and their loved ones of those moments. I don’t know what I’d decide but I do think about it. I am actually tagged for “plug pulling” duty for a couple of friends and I’m honored to have been chosen when others don’t feel they can do it but we’ve got timing decisions in place and that’s really important to me.
Gah. It’s the sort of thing one only gets in crash course format and it’s way too fucking much information, right?