Help me make the most of the time my mother has left.
July 28, 2014 2:52 PM   Subscribe

My mother has terminal cancer, and I don't know how much time she has left. Others with experience losing a parent: what would I regret not doing with this time?

Five months ago, I quit my job and moved home to be my mother's sole caregiver as she deals with terminal cancer. She was doing maintenance chemo until last month, when her oncologist said that at this point, the chemo is doing more harm than good, so it seems like she's moving out of the treatment phase and into the palliative care phase. She still has both good days and bad, ranging from being unable to leave her bed for 24 hours to working a full day (she's still technically full-time because she is amazingly tough and she enjoys working and wants to continue to do so until she can't).

My father died suddenly several years ago, so I know from that experience that there are often things I wish I had asked him, conversations I wish we'd had, and experiences I wish we had shared. Now that my mother is dying, I'd love some suggestions from people who have been through the death of a parent on how to minimize these regrets (knowing that some regrets are unavoidable). I realize I should probably be able to answer this myself, given my experience with my father's death, but being a caregiver is exhausting, and I think I'll probably get a better list from people who have been through this and made it to the other side than if I try to sit down and make one myself.

I already made her a journal with questions about herself and her life for her to answer (based on advice I found in this question), so she's been doing one a day throughout the year, and I've really enjoyed reading her responses and talking to her about them. But I'd still appreciate suggestions for things that I should ask her before she dies, as I'm certain I overlooked some things I could have asked her when I made the journal. But I'm also looking for more practical questions as well, like, "what diseases is our family at risk for?", as well as questions like "when were you in love?". Anything I would regret not knowing the answer to. And for her good days, I'd also appreciate suggestions for activities we can do together that I would regret not doing with her before she died. Her biggest constraints at this point are fatigue and eating. She can't eat very much at once, due to the nature of her disease (it's appendiceal cancer, which has moved to multiple organs, including the colon), but activities revolving around eating may still be okay for her good days, as she still enjoys food...just not in large quantities (which make her sick).

One of the most difficult aspects of her impending death is that she will never get to be a grandmother, which is something I know she desperately wants. I want to have children some day, but after giving the question a lot of thought, having them in the midst of caring for her would be a terrible idea for multiple reasons. So anything along the lines of Things I Will Want My Children to Have or Know About Her would also be great. Maybe videos or audio recordings of her? But recordings of her doing what?

Some extra information: Here are some things my mother loves, in case this information is extra helpful: her dog, board/card games, watching TV as a family, bookstores and fiction, the beach, swimming, geocaching, walking/hiking, her job as a teacher. I also have a brother who lives and works out of state, and who comes home as often as he can (every two months or so). My mother also has a husband who lives and works out of state and comes home every other weekend. Both of my mother's parents are still alive, but they are elderly and live half a country away, and are not dealing particularly well with my mother's disease (so having them visit is not an unequivocally good idea). I'm living nearby with my husband, but stay with her when I need to.

I've done a fair bit of searching for topics like this, but most of the "my parent is dying" questions revolve around caring for the parent or self-care, which is not what I'm looking for, as there are already many questions addressing those issues (1, 2, 3, etc.). I'm hoping for concrete suggestions of things that I can do with my mother that will make me feel that I spent her last days/weeks/months well. Thanks so much for your help.
posted by joan cusack the second to Human Relations (26 answers total) 23 users marked this as a favorite
Best answer: Oh, my condolences. What a tough road, but what a gift you have now. I think you might always have regrets - you'll think of things to ask her years from now. So, try not to worry too much about recording everything. I would absolutely do a few video recordings - are there songs she sings? Or have her tell a story or two, or read your favorite picture book. Little nuances, like how she tilts her head when she thinks, are hard to remember later. I would also make sure you have any recipes, and if there are any old photo albums, have her tell you who these people are and related stories of your ancestors.
posted by umwhat at 3:06 PM on July 28, 2014 [1 favorite]

Best answer: The first thing you should know is that no matter what happens between now and her time to go, it won't be enough.

All I can say is don't fixate on what you "should" do - just do. Be with her, talk to her, but don't treat her passing as a checklist of items that have to be accomplished before the end. All of the questions you have for her can be answered, but don't focus on getting them answered at the expense of just being with her, telling her a dumb joke, or even watching a dumb TV show if that's what she feels like doing at any particular moment.

My parents both died of long illnesses, 20 and 31 years ago, and to this day I don't regret not asking either of them The Big Questions. Just be with her, let her know she's loved, and if you get some of your answers, great.

And please, since it sounds like you've taken a lot on yourself (and since I've been there) - find yourself the occasional escape, even if just for an hour or so every now and again. Your health is just as important as anything else that's going on right now.
posted by pdb at 3:07 PM on July 28, 2014 [3 favorites]

Best answer: I am so sorry to hear about your mom. It was a huge regret of mine that I didn't get round to making a recording of my mom talking about her life, which is something we'd vaguely discussed. I miss her voice and the way she spoke as much as what she had to say sometimes. Maybe combine the journal idea with an audio recording? Not every day but perhaps when she's feeling up to it.

Again, I'm sorry you are all having to deal with this, but from the way you are approaching things I think and hope any regrets you may have will be minimised by your closeness and openness. My sincere best wishes to you both.
posted by Martha My Dear Prudence at 3:09 PM on July 28, 2014 [3 favorites]

Best answer: First, I'm really sorry to hear about your mother's condition and I know from experience that situations like this are also extremely difficult for the care-giver. Hang in there.

People are fond of saying "It'll be OK". I'm a fan of "It'll be."

Now, on to advice. While video is great, there is something that feels substantially more timeless and intimate about audio. I think one of the great things is that it is easier to forget about the recording device (as opposed to a video camera which, even on a cell phone, sort of feels in your face.) I've also found that with video I tend to end up losing my own memories of an event and having them taken over by the camera's perspective.

As to what to record: I've appreciated recordings about their past as well as just normal, banal, daily conversation. Both of these things can really capture a person in unique and powerful ways.

Finally, touch. Just revel in gentle, reassuring, non-care based touch. Taking the time to savour, and hold on to a moment of physical contact with a loved on is reassuring to them in the moment and deeply affecting for you when they are gone.

Good luck.
posted by lucasks at 3:11 PM on July 28, 2014 [2 favorites]

Best answer: A big part of my relationship with my father was based around learning (he was a teacher). Now, approx 18 months after his death, I find myself missing him most in situations where I would turn to him for advice about things he knew well: gardening and yard work, for example. I want to build a chicken house; I did several with him. I need to retain the slope; he managed several big ones. I wish I had captured some more of that knowledge, rather than assuming it would be an unlimited resource on tap, available until it was exhausted and I would be well into my dotage.
posted by smoke at 3:13 PM on July 28, 2014 [1 favorite]

Best answer: So sorry to hear about this.

One concrete idea: you might like to make a recording of her talking about old family photos. A project I did with a grandparent involved scanning their pictures with my iPad, then use an app to attach sound memos to the photos.

Mostly though? Just try to stay in the moment, in your own grief and in service to her, rather than worry too much about planning mementos for the future. You have her now. Be here, with her, now.
posted by Gray Skies at 3:22 PM on July 28, 2014 [2 favorites]

Best answer: Both my parents have died now. My father just a few months ago. I'm so sorry you're going through this. A few thoughts:

I'm a parent with two daughters and some really banal questions I wish I'd asked my mother were about her and her mothers experience of menstruation, pregnancy and menopause. My sisters can't remember and sometimes it's relevant for your own history.

I also wish I had written down the names and dates of birth of her grand parents and their siblings. Silly things that sort of interest me...but have been lost with her.

If she's of a mind to, she could write a letter to the child you might have one day. Things a loving grandma would tell a future grandchild.

I loved my fathers hands. They were always so big and strong and gentle and I'm really pleased I have a photo of his massive hand touching the head of my tiny firstborn.

I'm also pleased I know my mothers favourite song. I can play it whenever I miss her...or whenever I hear it, think of her. I also asked her a few times how she'd like to be remembered. It gave many moments of hilarity as undignified and embarrassing things happened and we joked that I'd remember her for those. Hilariously I can hardly remember them now.

Also...maybe your mum can create a photo book of her favourite photos of herself and her life for days when you're struggling or you want to talk to her grandchildren that you'd like to have one day.

Hugs for you. This is hard, tiring and unpredictable. Many, many hugs.
posted by taff at 3:38 PM on July 28, 2014 [2 favorites]

Best answer: I'm so sorry for what you're going through.

I lost my dad last fall, three months after a terminal diagnosis. He was a quiet and thoughtful man, and we really didn't talk much, especially the last month. Sometimes I'd tell stories about what I liked about him, or things that meant a lot to me growing up and as an adult. We just sat side by side a lot or I'd massage his shoulders, which is something he'd always loved. In the end, I just wanted nearness. Just time, knowing he was warm and comfortable and peaceful. The biographical details don't matter to me as much as I thought they would.

I fell asleep on the couch beside him during a movie and woke up thinking: he's still here! And it was so nice to wake up to know he was there. Because he wouldn't always be there.

The hospice nurses encouraged touch. They brought over several different essential oils to try, and we spent hours in the quiet while I massaged soft scents of lavender and eucalyptus into his hands and arms and feet. I rubbed lemon butter into his cuticles. I memorized the knuckles and spots on his hands, marveled at the stretch of them. He used to be able to palm a basketball.

I guess my point is, I love the idea of your mom writing some things down for posterity, but if she doesn't, it's OK. This time with her is so valuable.

Remember her hands.
posted by mochapickle at 3:47 PM on July 28, 2014 [8 favorites]

Best answer: Listen to music together and talk about it--music that reminds her of different times in her life, music she loves, music her parents love, music you love, etc.
posted by sallybrown at 4:01 PM on July 28, 2014 [1 favorite]

Best answer: The thing that jumped out at me when reading your question was about the grandchildren. Since that's a shared interest - you want kids, albeit not now, and she wants grandchildren - you could try engaging her around what she would teach her grandchildren, what she would tell them about herself and about you, and so forth. Make a recording if you can, both for them and for you.

Both of my parents are now gone. My dad passed some years ago, when my mom was still strong enough to handle most of the day-to-day aspects of his decline. My mom just died a year ago, when I was primarily in charge.

You should know that, as she declines, it will be harder and harder for her to form thoughts, to talk, to interact. For me, that was the worst because I'm very extroverted and also because I felt like I was missing so much that we could share and discuss. She just wasn't up to it; she was tired and retreated into herself more than she did when she was younger. If I have one regret, it's that I didn't honor her reticence enough. I kept trying to engage her in conversation, certain that she had things she wanted to say if only I could coax them out of her.
posted by DrGail at 4:31 PM on July 28, 2014 [1 favorite]

Best answer: The thing I regret the most was not actually failing to ask her more questions about herself, because her brother is still alive and can answer (and enjoy reminiscing about) most of those questions. The thing I regret the most, beyond imagining, is not asking my mom more questions about my father, who, as with yours, died many years before she did. There is no one left alive who can answer these questions for me and it will vex me forever.
posted by elizardbits at 4:38 PM on July 28, 2014

Best answer: You ask for suggestions for things to do, but I think you answer that in the "extra information" paragraph; do whatever she enjoys doing, and as often as you possibly can and she has the energy for.

My mom isn't dying, but she... isn't well, and I'm keenly aware that we have no idea how much longer we're going to have with her. So if she wants to go to the zoo? We schedule a day and pack up and go to the zoo. Is it a pain with the wheelchair and diapers and her not being able to stay for more than a couple hours before she starts to tucker out and the oxygen tank? Hell yes. Do I always manage to feel as loving as I should on these days? Of course not. :) But every picture I can get with her at the zoo or the science center or the terrible crafts fair she hauled me out to a couple months ago or whatever is going to be worth it when she's not with us (even if I may text my best friend with argh, would you believe what she said now).

In addition, my general rule is that what mom wants, mom gets, within reason (obviously I'm not bankrupting myself for her, I have to pay my bills too, but). Did I really want to cook a whole turkey last Thanksgiving (instead of the infinitely easy turkey breast)? No, but she wanted the turkey, so we roasted a whole bird.

I'm not saying you're not doing all you can for her, OP; it sounds like you are and that she and her are terribly lucky to get this time together. But I've found that these couple of guidelines - just getting out and doing things with her, even if it doesn't sound like that much fun to me, and getting her what she wants (within reason - she would drink Starbucks twice a day if we'd buy it for her!) is really helping. So, get out to the beach, break out the board games, find geocaching sites that aren't too hard to get to, take out her out to that fancy restaurant she always wanted to try (even if most of it is going to come home in takeout boxes). Take lots of pictures. And try not to mourn the whole time you're doing it - I look at my mom and just want to wrap her up in bubble wrap and stay Lady Time from doing her thing - but we have better days when I can let that go and just be with her and enjoy our day.

Best to you, and best to her, as best as things can be.
posted by joycehealy at 5:32 PM on July 28, 2014 [1 favorite]

Best answer: When my grandfather died, we found all these old documents relating to his parents immigration to this country. Some of them mentioned people by name who me knew nothing about. If I could go back, I would love to have him tell me the story of how his family got here. Who were his parents and grandparents? What were they like? Why did they come here, of all places? So much we don't know about that, and alas, too late to find out.
posted by JoannaC at 5:53 PM on July 28, 2014

Best answer: I'm sorry you're going through this. Record her voice -- it doesn't even matter much what she's saying. I plan to play the handful of voice messages left on my phone after my father died for my kid someday.
posted by thursdaystoo at 7:32 PM on July 28, 2014 [1 favorite]

Best answer: So sorry you're going through this; many hugs to both of you.

Since you've already lost your father, you probably think you know what's coming, and how you'll react when your mother passes --- I hate to tell you this, but in some ways it'll be worse. It's odd, but no matter how old we are or how long we've been on our own, no matter how long you've been a self-sufficient adult it's still an emotional shock (quite apart from and in addition to the shock of losing a loved one) to lose that last parent. You may have a career and a home and family of your own, but suddenly you no longer have that emotional backup to cushion you: you might not have asked them for advice for years, but now you CAN'T. Now YOU are the family elder that people turn to for advice..... And that's a surprisingly shocking feeling.
posted by easily confused at 8:28 PM on July 28, 2014 [2 favorites]

Best answer: What I wish most is that I had the opportunity to ask questions, or even just have conversations, about things that happened growing up. Memories aren't always accurate, heck you might even disagree strongly with your mother's version of events, but there are stories that only you and your mom will know about and it's hard when you don't have anyone to talk to about them or confirm details. I know it's not a specific question I'm giving you to ask, but think of it this way - just start taking about your childhood, your room, school picture day, when you got "x" injury, etc. It won't be possible to get every event, but you'll love listening or reading it later.

My kids like knowing about favorite things of their grandmother - foods, season of the year, music, etc. It's an easily relatable point, oh I'm like/not like her. Also, they like to know what she was like at various ages, was she a shy 5-year-old hiding behind mother's legs? Or fearless and got in trouble, and how does that compare to how she was at say 10-years-old? Again, it is very relatable to their world.

Also, it would be could if you could think about sentimental item(s) you might wish to have later and make sure you know where they are. It was very stressful when I was trying to sell the house and could not find my great-grandmother's ring. In my circumstance it was just me, so I do not mean to imply that you are keeping items for yourself versus family members getting them, rather that you talk to your mom about those objects in a story-telling context and get her help to look for them so that they are available for you all as a family. If it wouldn't be contentious or upsetting you and your brother could talk about what you would like to have and give your mom a chance to talk about what she hoped would happen with certain items.

I'm sorry if I'm repeating other people's posts, but I discovered while reading your lovely, heartfelt question all those emotions flooding back, even after several years have passed, so I just couldn't bring myself to read too closely. It was also my last parent, and it is, indeed, very difficult, I wish you strength.
posted by dawg-proud at 11:39 PM on July 28, 2014 [2 favorites]

Best answer: 1. Stories about her grandparents - this is the knowledge that gets lost with each generation.
2. Her experience of being a mother.
3. The stories behind her knick-knacks (which ones have sentimental/historical value and which ones are junk from a second-hand shop)
posted by superfish at 11:44 PM on July 28, 2014 [3 favorites]

Best answer: I've given the same advice in a couple of similar threads.
posted by MrMoonPie at 7:42 AM on July 29, 2014

Sorry for my typo - I think the meaning was clear, but just it case... It would be good if you could think about those sentimental items....
posted by dawg-proud at 8:30 AM on July 29, 2014

Best answer: When we knew my father was dying but he wasn't yet feeling the effects of his illness, us three kids got together and we made a long-ish video one night of the four of us sitting in his living room asking him questions about his life. He was a big joker, so all throughout it he was his usual dry-jokey self. We had heard most of the stories he told before, but it's a beautiful piece of him we can revisit over and over.

Also, one thing I'll never regret is asking him about his favorite songs of all time. He loved the Bob Seger song, "Turn the Page," and I'm not exaggerating when I say that every time I have heard that song since he passed away I feel his presence with me. It's always been during a particularly trying time, when I needed his love and guidance the most. I know it sounds woo, but I swear he's reaching out to me.
posted by Falwless at 9:08 AM on July 29, 2014 [1 favorite]

Best answer: Sorry to hear this. You're getting some wonderful ideas here that will help the process.

Am seconding RECIPES. My mom passed away a few years ago, and provided me and my siblings with a recipe book of her own recipes.

Being able to make some of the dishes I had growing up and into adulthood - even if they don't have her magic touch in the kitchen - is like having her with me again. So profoundly comforting. Makes me miss how many talents she had and how much love she shared with us.
posted by LittleFuzzy at 9:25 AM on July 29, 2014 [1 favorite]

Best answer: I wish I had more recordings of my mother, audio or video. I miss her face and her voice. She didn't much like being photographed, and looks very serious in most photos. And though she wrote beautifully, she didn't write often, so I don't have much to reread or to listen to when I miss her. After my mother died, my sister sent us all a copy of a voicemail she'd left, and it means a lot to me to have it. I wish could re-listen to some of the conversations I had with her.

One of my favorite things is a video that my mother took of a sunset...except she didn't realize she was holding the camera backward, so it's an inadvertent video selfie instead. She's relaxed and unselfconscious, talking about how pretty this off-camera sunset is, and it feels like a gift to have it.

On the other hand, our focus while she was dying was on doing what she wanted. So when I start to wish for ___, I try to remember what I do have: the knowledge that we focused on what she wanted and needed, ephemeral as it was. That does console me.
posted by Fretful Porpentine at 10:13 AM on July 29, 2014 [2 favorites]

Best answer: My mom died at the end of May. She had dementia for quite a few years before that. I had thought she'd done a good job of labeling photos in her photo albums, but have found that wasn't really the case--so if you have albums with pictures of relatives that aren't labeled, it would be good to go through them with her and have her supply names/stories. Maybe record her while she's doing that.

Also, get the financial stuff figured out. We had a trust, but unfortunately, one bank account was outside the trust (combination of bad advice and bad banker) and we are going to have to go through probate for that--attorney is saying it may take a year! Fortunately, we don't have a need for the money. If your Mom is comfortable with it, having your name on her bank accounts (as in joint, not just for signing), will keep them out of probate.

But the most import thing is spending time together doing whatever.
posted by agatha_magatha at 10:53 AM on July 29, 2014

Best answer: I lost my mother when I was 23, almost 4 years ago. I was lucky we were like best friends, that when she passed, we literally have talked about everything in her life -- her old dreams, the men she met before marrying my father, her honest wistfulness as she ponders what-could-have-beens, the depth of her faith, her hopes for me. I agree with the advice above about just being loving and present, because it's these simple conversations I end up looking back on and find so beautifully revealing, so deeply inspirational.

But what I am most grateful for, ultimately, is not what I asked her to leave behind that I can preserve, but what I had the chance to say before it was too late -- which is that I'll do my very best to live a life that honors her memory and her sacrifices, that I'll roll with the punches and make the best of it all, no matter what, for her.

The fact that I got to express all that to her has given me tremendous peace.
posted by tackypink at 12:33 PM on July 29, 2014 [2 favorites]

Best answer: I wish that I'd recorded my dad reading my favorite childhood book out loud, so that I could play it for my kid.
posted by feets at 5:20 PM on July 29, 2014 [2 favorites]

Response by poster: Thanks so much for all of your thoughtful responses and support. I really love and appreciate this community.
posted by joan cusack the second at 3:02 PM on July 30, 2014 [2 favorites]

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