How do I support a loved one with cancer, from far away?
July 10, 2013 11:55 AM Subscribe
My dad was just diagnosed with Large B Cell Lymphoma. The prognosis is good. He begins chemotherapy (R-CHOP) in a week - 6 cycles every 3 weeks, for a total of 18 weeks. I am a 7 1/2 hour drive away, and I don't own a car. What can I do to help?
My mom & dad live together, and my mom is a teacher who will be off until early September, and able to take care of the house and him. My younger sister lives with my parents, and can help out a bit, as well.
I will be traveling home (by plane, train, or rental car) for a long weekend in August, and hopefully more than once in the Fall. Other than that, I need some ideas for long-distance assistance!
Concerns for my family include:
- financial issues with loss of income/healthcare bills
- boredom
- trouble taking care of household chores
- health problems related to living in an old, chilly house
My ideas so far include:
- Benefit concert with my dad's friends (organize from afar and attend in August?)
- Pitching in with my two sisters & our significant others for an iPad mini (Dad is a vehement Luddite, though - might take him some getting used to) for him to use when he's cooped up or at the hospital, for history/science apps, ebooks, television...
- Calling every day with funny or interesting news stories, or just to talk (doing this already)
My dad loves history, nature and science television, and watching sports like cycling, golf, and football. He used to read a lot but his eyes aren't great now, though he still enjoys mysteries, sci fi, well-researched historical fiction, and history and popular science books. He read like every back issue of the New Yorker last time he visited me. He plays guitar and writes music. He hangs out with his dog.
We visited Scotland last year and he was taken on a boat up the River Clyde, on what he said was the "best day of his life."
I should mention that he really doesn't like being told what to do, and enjoys spending a lot of time alone.
If you've been through chemotherapy, or been a caretaker or family member (particularly of the type of dude who'll be violently ill for 9 days straight before he finally agrees to see the doctor), please tell me what helped!
My mom & dad live together, and my mom is a teacher who will be off until early September, and able to take care of the house and him. My younger sister lives with my parents, and can help out a bit, as well.
I will be traveling home (by plane, train, or rental car) for a long weekend in August, and hopefully more than once in the Fall. Other than that, I need some ideas for long-distance assistance!
Concerns for my family include:
- financial issues with loss of income/healthcare bills
- boredom
- trouble taking care of household chores
- health problems related to living in an old, chilly house
My ideas so far include:
- Benefit concert with my dad's friends (organize from afar and attend in August?)
- Pitching in with my two sisters & our significant others for an iPad mini (Dad is a vehement Luddite, though - might take him some getting used to) for him to use when he's cooped up or at the hospital, for history/science apps, ebooks, television...
- Calling every day with funny or interesting news stories, or just to talk (doing this already)
My dad loves history, nature and science television, and watching sports like cycling, golf, and football. He used to read a lot but his eyes aren't great now, though he still enjoys mysteries, sci fi, well-researched historical fiction, and history and popular science books. He read like every back issue of the New Yorker last time he visited me. He plays guitar and writes music. He hangs out with his dog.
We visited Scotland last year and he was taken on a boat up the River Clyde, on what he said was the "best day of his life."
I should mention that he really doesn't like being told what to do, and enjoys spending a lot of time alone.
If you've been through chemotherapy, or been a caretaker or family member (particularly of the type of dude who'll be violently ill for 9 days straight before he finally agrees to see the doctor), please tell me what helped!
Best answer: Books on tape/cd might be a thing. Perhaps you can source them from a local library and have your sister pick them up? That might be nice during chemo.
Chemo can really take it out of a person, so if you call to chat, but he doesn't seem up for it, let him go. The fact that you called to check in is all that matters.
Write him a long, old-school letter. My dad used to send hilarious letters to my sister and I when we were at camp. They were from the point of view of the dog, or talked about some nonsensical adventure he and my mom were having.
As for help with chores, if you have the dough, can you arrange for a cleaning person? If you don't, can you call their church to see if they can rally? Another option is to provide food. A pizza a week, or some nice Chinese. Call in the order with your card, and have it delivered. My mom only wants Won Ton soup when she's feeling pukey.
You can help your mom deal with insurance, etc. Also find out about short-term and long-term disability from your Dad's work.
Your Dad may not need your mom to hang out after Chemo. Either he'll feel fine, or he'll want to go to bed. Transportation can be arranged, call your local hospital for resources. That way your mom can continue to work.
My friend said that one of the times in her life she's felt the best was during Chemo. She's weird though. Chemo may not be as rough on your dad as you think it will be.
One thing you can do is to be a listening ear. Don't be so quick to offer solutions to problems, but just listen and don't judge.
Hang in there!
posted by Ruthless Bunny at 12:03 PM on July 10, 2013
Chemo can really take it out of a person, so if you call to chat, but he doesn't seem up for it, let him go. The fact that you called to check in is all that matters.
Write him a long, old-school letter. My dad used to send hilarious letters to my sister and I when we were at camp. They were from the point of view of the dog, or talked about some nonsensical adventure he and my mom were having.
As for help with chores, if you have the dough, can you arrange for a cleaning person? If you don't, can you call their church to see if they can rally? Another option is to provide food. A pizza a week, or some nice Chinese. Call in the order with your card, and have it delivered. My mom only wants Won Ton soup when she's feeling pukey.
You can help your mom deal with insurance, etc. Also find out about short-term and long-term disability from your Dad's work.
Your Dad may not need your mom to hang out after Chemo. Either he'll feel fine, or he'll want to go to bed. Transportation can be arranged, call your local hospital for resources. That way your mom can continue to work.
My friend said that one of the times in her life she's felt the best was during Chemo. She's weird though. Chemo may not be as rough on your dad as you think it will be.
One thing you can do is to be a listening ear. Don't be so quick to offer solutions to problems, but just listen and don't judge.
Hang in there!
posted by Ruthless Bunny at 12:03 PM on July 10, 2013
I've been through chemo a couple of times, and I'll say, if your dad is a bit of a loner, organizing a benefit concert might be overwhelming to him at this time. I absolutely hated any kind of super-attention, especially out of a small circle of family/friends. It's just physically exhausting to have to put on the game face, and the sensory overload can also be grueling.
posted by thinkpiece at 12:35 PM on July 10, 2013 [2 favorites]
posted by thinkpiece at 12:35 PM on July 10, 2013 [2 favorites]
Response by poster: Hmm.. I may have misrepresented him. He definitely needs alone time, but he. loves. to be the center of attention. LOVES to play his songs for people. He gets positively giddy. But if he's not feeling up to it physically, that would be a different thing, and it's something I hadn't adequately considered!
posted by Isingthebodyelectric at 1:55 PM on July 10, 2013
posted by Isingthebodyelectric at 1:55 PM on July 10, 2013
Best answer: When my mother was caretaking my grandmother through the end of her life, I was a thousand miles away and couldn't go help her. I did, however, often order in dinner for her, called around to find resources for her, did what thinking i could do from afar. AND I was her dedicated bitch ear -- I told her that she could always, always, always ALWAYS call me and bitch, and no matter how many times I had heard this complaint, I would always listen and make sympathetic noises. Always.
She later told me that it was the bitch ear thing that helped the most, knowing that she would always have a sympathetic listener.
posted by KathrynT at 2:07 PM on July 10, 2013 [2 favorites]
She later told me that it was the bitch ear thing that helped the most, knowing that she would always have a sympathetic listener.
posted by KathrynT at 2:07 PM on July 10, 2013 [2 favorites]
Best answer: My friend/roommate had the same kind of lymphoma and did R-CHOP a few years ago. I remember she would generally be completely zonked out on infusion day from the antihistamines they gave her in the IV, and then she would feel pretty decent for a day or two, and then feel like a crummy sore pile of ooze for about a week after that. Then when she started to feel better, it was infusion time again! Be prepared for a lot of energy and mood fluctuations - the combination of steroids and chemo doing its thing can make people behave very much out of character, and it is best not to take it personally.
If you can afford it at all, I strongly recommend you look into getting them some cleaning service or a food delivery service. His immune system will be in the shitter for awhile and nobody's going to really FEEL like scrubbing things down on top of everything else. My friend had a lot of trouble with hard/scratchy/crunchy foods tearing up her mouth, and had absolutely zero energy for actual food production, so if you can find a way to get them the foods that he can tolerate, it'll probably be super helpful. If they're close to local friends/neighbors, you could maybe organize a few of them to pitch in and stock the freezer. When you're there, try to clean or cook or do whatever odd jobs need doing. Once, my roommate's parents came to town for one of her infusion days. They hard cleaned the whole apartment. It was such a blessing.
I think an iPad is a great idea! He probably won't be very awake when at the hospital for infusions or other things - we spent a lot of time at the hospital when my friend was both getting infusions and then cooped up in the sterile unit when she periodically went neutropenic, and even though we brought books and devices, she mostly just felt like napping. But on the other days when there's nothing to do but sit around between naps and feel mediocre, some Netflix or downloaded TV shows and movies would be perfect. Also, maybe an Audible subscription if he likes audiobooks?
Also, yes, call regularly. Both because he'll probably enjoy hearing from you and because if he gets cranky during certain phases of the chemo cycle, your mom and sister will probably appreciate a break from him.
Good luck! Cancer sucks, and I wish your family all the best and a clean scan at the end!
posted by bowtiesarecool at 4:17 PM on July 10, 2013
If you can afford it at all, I strongly recommend you look into getting them some cleaning service or a food delivery service. His immune system will be in the shitter for awhile and nobody's going to really FEEL like scrubbing things down on top of everything else. My friend had a lot of trouble with hard/scratchy/crunchy foods tearing up her mouth, and had absolutely zero energy for actual food production, so if you can find a way to get them the foods that he can tolerate, it'll probably be super helpful. If they're close to local friends/neighbors, you could maybe organize a few of them to pitch in and stock the freezer. When you're there, try to clean or cook or do whatever odd jobs need doing. Once, my roommate's parents came to town for one of her infusion days. They hard cleaned the whole apartment. It was such a blessing.
I think an iPad is a great idea! He probably won't be very awake when at the hospital for infusions or other things - we spent a lot of time at the hospital when my friend was both getting infusions and then cooped up in the sterile unit when she periodically went neutropenic, and even though we brought books and devices, she mostly just felt like napping. But on the other days when there's nothing to do but sit around between naps and feel mediocre, some Netflix or downloaded TV shows and movies would be perfect. Also, maybe an Audible subscription if he likes audiobooks?
Also, yes, call regularly. Both because he'll probably enjoy hearing from you and because if he gets cranky during certain phases of the chemo cycle, your mom and sister will probably appreciate a break from him.
Good luck! Cancer sucks, and I wish your family all the best and a clean scan at the end!
posted by bowtiesarecool at 4:17 PM on July 10, 2013
Best answer: I've been in this situation, and it does indeed suck.
Concerns for my family include:
- financial issues with loss of income/healthcare bills
- boredom
- trouble taking care of household chores
- health problems related to living in an old, chilly house
Please add - the stress mom is under as she struggles to help dad, heightened by the fact that everyone will be focused on him and few people will notice how hard it is for her to deal with her own emotions while being your dad's pillar.
Echoing KathrynT, one of the most important things you can do long distance is support your mom while she supports your dad. Make it clear that you want to know how she's doing, and that it's okay for her to vent/complain/cry/whatever she needs to do even if she feels that she should somehow suck it up in light of what your dad is going through.
posted by scrute at 6:27 PM on July 10, 2013 [1 favorite]
Concerns for my family include:
- financial issues with loss of income/healthcare bills
- boredom
- trouble taking care of household chores
- health problems related to living in an old, chilly house
Please add - the stress mom is under as she struggles to help dad, heightened by the fact that everyone will be focused on him and few people will notice how hard it is for her to deal with her own emotions while being your dad's pillar.
Echoing KathrynT, one of the most important things you can do long distance is support your mom while she supports your dad. Make it clear that you want to know how she's doing, and that it's okay for her to vent/complain/cry/whatever she needs to do even if she feels that she should somehow suck it up in light of what your dad is going through.
posted by scrute at 6:27 PM on July 10, 2013 [1 favorite]
If you're interested in organizing loved ones for meals and chores, you can try a website called Care Calendar.
Shoppers and food bringers were the greatest help when I was recovering from a serious surgery.
Things that helped when I was in pain and mostly helpless:
-Food delivery
-Amazon Prime (if your parents can't use Amazon, then you can get it and they can tell you via phone what they need, it'll show up at their doorstep in 48 hours. helps for medical supplies, books, dvds and so much more)
-Netflix/Roku/DVDs (DVD gifts were so nice to receive from friends, especially box sets--maybe your dad is a Columbo guy?)
-Tools to help me remember med schedule. Someone made me a chart and sent me reminders.
-Someone at my workplace organized a get well card drive, new cards from friends and colleagues arrived daily until the entire living room wall was covered
It also sounds like your dad might like some Lapham's Quarterlies!
posted by dottiechang at 11:11 PM on July 11, 2013
Shoppers and food bringers were the greatest help when I was recovering from a serious surgery.
Things that helped when I was in pain and mostly helpless:
-Food delivery
-Amazon Prime (if your parents can't use Amazon, then you can get it and they can tell you via phone what they need, it'll show up at their doorstep in 48 hours. helps for medical supplies, books, dvds and so much more)
-Netflix/Roku/DVDs (DVD gifts were so nice to receive from friends, especially box sets--maybe your dad is a Columbo guy?)
-Tools to help me remember med schedule. Someone made me a chart and sent me reminders.
-Someone at my workplace organized a get well card drive, new cards from friends and colleagues arrived daily until the entire living room wall was covered
It also sounds like your dad might like some Lapham's Quarterlies!
posted by dottiechang at 11:11 PM on July 11, 2013
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My go-to recommendations for historical fiction are, as always:
- Patrick O'Brian (the Aubrey-Maturin series)
- Bernard Cornwell (the Richard Sharpe series)
- Ken Follet (Pillars of the Earth and its sequel World Without End)
posted by jquinby at 12:02 PM on July 10, 2013