How to organize a group of caregivers to help a terminally ill friend

January 25, 2013 4:00 PM

One of my best friends was just diagnosed with late-stage cancer. My friend's going to need a lot of help, and I want to organize people to do it. Have you organized or been part of a caregiving group? I need advice from someone who's been down this road.

My friend is unmarried, supports a kid on her own, and her family lives in a different country. The doctors have given her a prognosis of a year to live, and plan to keep my friend on chemo until it's no longer feasible to continue it.

In the near future there will be a thousand tasks that need doing: cooking, cleaning, driving, tutoring, basic kid-wrangling, accompaniments to chemo, nursing/caretaking, administration of household bills and so forth. Friends and acquaintances keep saying "let us know what we can do to help." So I want to coordinate the helpers.

I found a book called "Share the Care" which tells you how to set up a caregiving group, and was wondering if anyone had ever used it, and what their experience with it was. I also found a website called lotsahelpinghands.com and was wondering if I could use both systems or if that would be too much. Alternatively, if you did it another way I'd love to hear about that too.

(At first glance, Share the Care seems a little intense, like people would feel like they were being asked to apply for a job if I put them through what the book suggests as an "intake" process; alternately, lotsahelpinghands looks like it will work well to marshal acquaintances to bring lasagna, but like as the primary coordinator I will never be able to step away for a week.)

Bonus question: I can already feel myself getting codependent, and my house looks like a bomb hit it (laundry everywhere, cat barf on the floor, food rotting in the fridge etc). Do you have any tips on how not to turn into a mess when trying to give care to someone you love?

posted by feets to human relations (10 answers total)

I think CaringBridge is the go to resource on stuff like that. They have an easy to use support calendar where people can sign up for chores or food delivery, stuff like that.

You might also want to advise your friend to consult a lawyer as soon as possible so that there aren't any issues to deal with regarding who can care for her child when she's too sick to do it.

As to your other question, just remember that you need to care for yourself (and your pets) before you can be a good caretaker to someone else. Obviously, stuff like laundry can wait, but you and your pets need to be healthy to allow you the free time to take care of your friend.

Good luck and good thoughts to you. Your friend and your child are lucky to have you.
posted by roomthreeseventeen at 4:15 PM on January 25 [3 favorites]

I've never done the organization myself, but have participated in groups organized by others. My friends used Facebook, posted regularly, and asked for help with specific tasks. I can only occasionally make an all-day commitment, but I CAN cook a few freezer meals, drive to doctor appts, clean for an hour, etc. It also helps me if the needs are set it up ahead of time. My friends would post stuff the week before, saying ok, next week we need x,y, and z. The regular posts helped me keep it in mind, and the specific requests helped me commit to doing whatever I could handle. They also asked for repetitive tasks, such as someone committing to one hour each week to clean, or bringing three meals every week, etc. I am also a hospice volunteer, and a big part of our work is just sitting with the patients for a couple of hours so the caregiver can leave to do whatever. Be sure you schedule that in.
posted by raisingsand at 4:20 PM on January 25

How to not turn into a mess: admit that you also need help. When I was helping some close friends through a crisis, I felt that there was a pyramid structure in place. I could help my friends because there were people in my life (most of whom didn't know my friends) who were willing to step up and help me out, with childcare and meals for my family and so on. I think someone even came and cleaned my bathroom once, but I may be thinking of another time. My point is: don't be afraid to admit that you will also need help during this time, and ask for it. My friend was the apex of the pyramid, and then there was a layer of me and other primary support people, and then we primary support people drew on our other friends for the help we needed as our lives were being disrupted.

A group of us read Share the Care when we were dealing with multiple ongoing health problems in our Quaker meeting. We found its ideas useful but ended up doing a modified version. We did find it helpful to set up support committees for each person in need; this meant there were 3-4 people meeting regularly to talk about what needed to be done and divvy up tasks, and also to serve as a conduit between the person in need and the broader community so that the PIN wasn't getting hammered with phone calls & visits that would exhaust them. Support committees also served as mutual support systems for the people most heavily involved in caregiving. We were doing this within the context of a Quaker meeting, but I think that a group of friends could do something similar.

In my homeschool community now, people use on-line meal sign-ups a lot when people need that kind of support. And use Facebook as a way to communicate news to the wider community efficiently.
posted by not that girl at 4:21 PM on January 25 [1 favorite]

I am in the midst of using lotsahelpinghands to help a relative and it seems pretty easy and intuitive, at least on my end as a volunteer (not organizer). Can you make more than one person the admin so you can share the tasks?
posted by BlahLaLa at 4:37 PM on January 25

I've done this as primary organiser (never for someone with terminal cancer, but for someone in the midst of massive grief + medical stuff, and then for friends with a new baby and some unexpected bits.) The things that might help you:

- The person doing all the task coordination does not necessarily have to be you, and it does not necessarily have to be local. (You need good communication with them, and your friend needs to be able to trust them to do confidential stuff and keep their mouth shut, but in fact, it's often sometimes easier if the person doing all the coordination is a step removed from the emotional processing about it.)

The ideal someone is detail focused, is available regularly for updates (at least daily, and 2x a day is a lot better), and ideally knows most of your friend's friends, but who isn't necessarily enmeshed closely. (Recognising names is a big help, but remembering their faces isn't as much a big deal, if that makes sense. This last bit is optional: someone can learn names if they have to.)

- When planning task coordination, think really carefully about your friend's preferences, and about who is doing what. My best friend, when she was having the grief+hard medical stuff, got really specific with me: some people were great for the grocery store, but would go on about their own medical stuff at the doctor's office in ways that made her unhappy, others were great for the doctor, but would take forever in the store, so she'd be in pain and exhausted at the end of it.

Some people are awesome people, but just aren't restful to be around.

- Related, figure some way to do general updates (so your friend doesn't answer "So how are you doing this week, dear?" fifteen times a day). usually this is some combo of filtering non-urgent messages + info blasts, and there's tools that make all of that easier (CaringBridge is the best known)

- In additional to the predictable stuff (both weekly "X meals" and the "doctor's appointment a week from Tuesday"), see if you can possibly arrange one or two people who have flexible schedules, and who are lightly used in the other tasks. It can be *really* helpful to have someone who can run to the grocery store for X, or to pick up something specific at [whatever store] or any number of other things. Tell these people that's what you'd like to use them for.

- Take time for yourself, and also take some time to think through what would keep your life running smoothly. That might mean taking a day to clean your house/get someone to pick up a massive bag of catfood, do a run for shelf-stable food you don't have to think about eating. Streamline your wardrobe for a while, so that nothing needs extra attention when getting washed. That kind of thing.

Seriously consider where throwing money at a problem might help - a cleaning service, for example, is something that distant family/friends could help you pay for, so you could spend your time helping your friend, once you got it set up. Ditto paying for food delivery or something similar if that works for you. Even once a month cleaning would make it easier for you to spend your time on the small daily stuff you need to do yourself.

Also, ask the hospitals involved if there's any kind of parking benefit for people who are there all the time or for long periods - sometimes there is, and it's deeply discounted from the regular rates.
posted by modernhypatia at 5:15 PM on January 25 [2 favorites]

Ditto on pairing the right people with the right job. A few notes from the experience of caring for my father while he died of cancer:

There's a TON of end-of-life details to trawl through and you will want to get started on them now, so things like probate and funeral arrangements can go as smoothly as possible (it will be so much easier if your friend can participate as much as possible in the decision-making). There are many checklists out there that cover things like bank accounts, wills, etc. Your more analytical friends (especially those who want to help, but have difficulty with the touchy-feely aspects of caregiving) can help a ton here.

Schedules are your friend. Checklists, too. Not only do they keep your organized, but they give your other caregivers very clear, actionable items to do. My group - me, mother, sister, and parents' best friends - had short pow-wows every few days to make sure short and long-term plans were being taken care of. If someone wasn't up to a task, we reassigned it (meeting with the funeral home took a bit to get organized; it was tough because it's a huge omg this is happening moment). We also kept a log book of medications and how dad was doing throughout the process, which was very helpful when we needed to call the hospice nurses for advice on things like medication dosages.

Don't be surprised if people's ability/willingness to do certain tasks change as your friend begins to deteriorate. People are weird about death and dying and we all handle it in different ways. When my father was dying, his best friend absolutely could not bear to be present that last day when we all knew dad wouldn't last the night. When dad finally passed, it took his friend hours to come pay his final respects, even though he lived only minutes away. Don't get upset if something like this happens. Well, given the circumstances, being upset is normal... don't hold a grudge.

If you are your group's organizer, take care of yourself, ask for help if you need it, and pass off any duties to someone capable if you need to. It has already been said and I cannot repeat it enough: You are NOT a bad person if you need time to yourself; in fact, meeting this need will make you a BETTER caregiver.

Asking for help and being honest are the best and bravest things you and your friend can do throughout this process. Ask yourself if you can make tough decisions alone (if it need come to that... and it may). If you feel you can, tell your friend you are there to make the tough decisions on her behalf. Find the opportunity to ask her to be absolutely frank about how she wants to die and how she wants her child cared for. It may take many conversations until she feels safe to express her desires. And even then, these may change -- For months, we had made plans for my father to die at home (we got in-home hospice care, the hospital bed, everything). But just before that final coma, my dad had a sudden and very frantic change of heart, asked me that he be taken to the hospice facility... and then he passed out. Everyone immediately looked to me as to whether or not we should call the ambulance and go to hospice. (I called the ambulance immediately. He died 3 days later. No regrets. Hospice staff is AMAZING.)

So, be flexible and able to change plans/rally the troops at a moment's notice. Having your "who-contacts who" flowchart figured out early on is vital. (We delegated that job to my sister -- since she was mostly remote, she was the best candidate to do all the notifications when major things happened.)

As for ways to cope... what worked best for me was reading up on what the process of dying is like. Everything from months, to weeks, to minutes until death. It sounds morbid, but not being afraid of the physical signs, or offended by the mental and emotional withdrawal that can happen... it was of great comfort to me.

Best of luck to you and your friend. You and your group will give your friend a final, beautiful gift of peace of mind and a good death. It will not be perfect, but then, life so seldom is.
posted by Wossname at 6:56 PM on January 25 [2 favorites]

My mother was part of a Share the Care group for a friend of hers. She (and the group) found the book quite helpful. I believe that they may well have modified it to suit their needs, but they found it a good guideline.

It may be worth noting that they kept up (and were able to keep up) the group for several years. Said friend had a neuro-degenerative condition and required assistance for a long time. Although it was difficult, especially near the end, my mother still regards the time and the group as a gift.

As others have said, make sure to take care of yourself too. There's a reason they tell you to put on your own oxygen mask first.

Best wishes to you and your friend.
posted by wiskunde at 8:27 PM on January 25

I just coordinated care for a friend recovering from major surgery. She needed about a month of support, and we just used a Google doc for sign ups and coordination so people didn't need to make accounts on new sites or anything. One thing that worked extremely well was having a slot for "backup support person" for each day. If any of the other care fell through - and it will, people have busy lives - my friend wasn't left alone or without a meal, etc.
posted by judith at 3:55 AM on January 26

I am assuming you are in the U.S. Your friend could benefit from hospice services, which can be provided in the home or (sometimes) in an inpatient setting. Your friend's oncologist can assist with referral paperwork. It may be too soon for a hospice admission right now, but your friend (and you, and her other caregiving friends) could benefit from learning more about hospice. Many hospice agencies provide not only nursing services but can coordinate additional help for errands/light housekeeping/laundry/meal prep for your friend. It sounds like you're already struggling with the situation and I'm afraid as your friend's condition deteriorates you may find yourself second guessing what she needs without benefit of some professional hospice intervention. I'm sorry you're going through this. It's a privilege to care for a dying person, but it is also very difficult...logistically and emotionally.
posted by little mouth at 6:02 AM on January 26

First, I am so sorry for you, your friend and your shared community. I just did this, as part of a larger group, a couple of moths ago for a dear friend with cancer. Caring for her at the end of her life was the most terrible privilege I will ever have. Our time frame was much shorter, but that means you have more time to create a functional end of life team.

You have already received a lot of good advice above, so I will focus on two aspects we found challenging: communication and self-care. My friend had a huge community of friends and family, absurd really, and communicating developments was a logistical challenge. We created a Facebook page to which we posted regular updates and established a call tree. We also had designated people at her house to answer the phones (her landline and cell) and schedule visits when she was no longer able to leave. If you choose to go this route, be sure you put people on the phones who are able to be diplomatic, kind and have the stamina to face other people’s grief in whatever form it manifests. And check in with your friend as to the level of communication she wants with people and follow her lead until she no longer wants to or is able to decide. And the suggestion of creating a list of tasks to delegate is great. In our experience, people desperately wanted to help but needed concrete direction.

Self-care was the second huge challenge and will likely continue to be a challenge for awhile after all said and done. Take days off. This is so important I will say it again, take days off. Individuals in our community also took turns hosting open houses where we could be together for comfort in a place that wasn’t a burden on our friend and her direct caregivers and also gave her caregivers a place to escape to for a bit. During the most acute period, it was difficult to be alone and difficult to be with people who were also not experiencing this loss. This may become more important has her condition changes.

And though we all did a fantastic job of watching out for one another on the care team, one thing I wish we had done was establish a non-contest “safeword” or someway of indicating to each other that we thought the other person had to take a break, without argument. As you have already experienced, it is easy to get lost in caring for the other person, but self-care is community care.

Don’t be afraid to laugh and enjoy the moments you can. There will still be humor and love and stupid jokes. This is nothing to feel guilty about. Take those moments when they come because these are the foundations on which friendships or built, not grief, and you and your friend deserve those moments. While I am still dealing with an immense and unwieldy amount of anger and sadness I am also full of gratitude for my friend that has passed and the friendships built and strengthened in last days of her life.
posted by Hopeful and Cynical at 10:06 AM on January 26