Who was in your support network during crises?

December 26, 2024 1:19 PM

I'm the caretaker for a chronically ill parent. During past emergencies, I discovered that my support network was sparser than I wanted. My friend network was great for sharing fun times but less reliable when my mom was in the hospital. What are your tips for building a stronger support network for future medical tough times?

I know many of you have been through hardships such as cancer, long illnesses, and losing loved ones. I'd like to learn who became your support network during those times.

Here are a few specific questions, and I want to hear your general advice too.

1. Most of my relatives are in a different city. Were your family and friends in other cities able to help, or did you rely solely on people in your city?

2. Did you need more logistical help (e.g. deliver meals, pick up supplies) or emotional help (e.g. listen and be supportive) or both in equal measure?

3. In past emergencies, I was surprised that some acquaintances stepped up and were generous with their time and assistance, while some of my closest friends became unreliable at responding and had to be asked several times to return my phone call. Is there any way to predict who will turn out to be the helpers versus unreliable (other than seeing how they behave towards other friends in need)?

4. Other tips on building up my support network? I already follow the Golden Rule by trying to be a supportive friend to others in their times of need and in everyday life.

Thanks!

posted by roastbeef to Human Relations (15 answers total)

One thing that has helped me and my friend group--although thankfully we have yet to test our network on anything very serious--was simply having some conversations about it. They don't have to be super-deep or serious, but simply raising the topics of "what kind of help do you appreciate when you are not feeling well?" and "what kinds of things are easy/hard for you to do for someone in crisis?" has resulted in some pretty good discussions. It turned out others--even some of the good-time people--are thinking about many of the same things.

These discussions also helped us to be realistic about who can and will do what in a crisis, and to think about the value of different contributions. For example, I have some friends who are probably not great at comforting gestures but are fantastic at coordinating things like grocery pickups or care schedules. Our friend group now has a good understanding of what support for each other would really look like, and pretty much everyone knows they can play a helpful role, however small. Opening up the subject has had both practical and social benefits for us all, and made us all closer.
posted by rpfields at 1:58 PM on December 26 [8 favorites]

Best answer: I'm sorry you and your parent are going through this. I took care of my mother for years and although it wasn't intense all the time, it was very, very hard for both of us sometimes.

In my caregiving, I relied on people in the area. For me, this was mostly because I was closest to people close by and I wouldn't have felt comfortable asking distant relatives to help out. If you are close to people who live out of the area, there are many ways they can help out. You might need help with logistics, like with arranging services or help for your parent, and this can be done by phone, online etc. If more resources would help (because caregiving and healthcare is expensive and really time-consuming), family and friends far away can help with that too.

For me I needed equal amounts of logistical and emotional support.

Yes, it was absolutely true for me that people I thought would be helpful were not in reality helpful at all and other people who I didn't even know very well came out of the woodwork to provide support. In general I think it is hard to predict who in your life will help both in a real crisis and with the dispiriting, depressing daily grind of caregiving for someone with a chronic illness. One small predictor might be if the person has been a caregiver and or gone through illness and significant hardship in their own lives. Sometimes people understand what's needed because they've had these experiences already. Maybe another predictor is how much is going on in their own life. In retrospect, some of the people I thought would help me had too much going on to really be available for me in the way I wanted them to.

I got a lot of help from a transportation service provided by my mom's health insurance. This wonderful service gave her weekly rides to the doctor while I was at work. It was also helpful near the end of her life for her to go to adult daycare and for me to have a month of respite while she stayed at an assisted living place. I would encourage you to try to get as much help as possible from community services and healthcare services, as well as from your personal support network.

I have no idea if this applies to your situation, but one of my big regrets is not spending enough money on resources to help her and me and instead trying to do it all myself for a really long time. I was very frugal and tried to do the caregiving with my labor and love, and this was so hard on me I almost had a breakdown after she died. I wish now I had just paid for services to help her and me, much earlier in the process.

I hope some of this is helpful!
posted by LittleLadybug at 2:04 PM on December 26 [7 favorites]

For building your support network, what you're doing already sounds positive. This may not apply to you, but many religious organizations are great at supporting people in need. I didn't try this myself, but I wonder if joining a support group for caregivers might help. Groups like that do exist in some places. I really wish you and your parent the best. This is a hard time in your lives, but it also can be good if you have a close relationship with your parent.
posted by LittleLadybug at 2:13 PM on December 26 [3 favorites]

1. Some emotional support otherwise no chance

2. Logistical. Emotional sure but practical help >>>>>>> someone listening to me vent. Coverage most needed.

3. People with personal experience of caregiving, especially if religious

4. Unlikely people will be your allies, see 3. Probably not your party friends.
posted by cotton dress sock at 2:16 PM on December 26

Best answer: Regarding being a supportive friend yourself, also just be in contact. Like, keep your weak ties connected. It's easy to get out of this habit when you're busy caretaking; you're staying in so you don't see your casual friends from book club or the coffee shop. Try to keep in touch with people who you don't normally have to work to keep in touch with--not just for the support you'll need, but because those loose ties are HUGELY valuable mentally, outside of the crisis periods.

I'd also suggest thinking about what you can ask for and being ready to ask for it. People want to help but don't know how. For me, meals were huge because I hate cooking at the best of times. Meals are also easy to ask for, as are other things like rides. But a lot of people won't know what to offer, so think ahead about what might work for you so when someone says "whatever I can do to help," you can have an answer.

Like, only another caregiver would think to say "can I come over and sit with your loved one while you go get a coffee?" But there are plenty of people who would respond to "could you come read out loud to her/watch TV with her while I run a couple of errands?"

I'm sorry you're dealing with this. It's brutally hard. I find that the little things I don't realize I'm missing are the ones that are chipping away at me the most, and I need to find ways to fill them back up.
posted by gideonfrog at 2:47 PM on December 26 [10 favorites]

Best answer: Friends who are also caregivers tend to get it more, but also I've gotten surprising help from coworkers, neighbors and actually, yes, my party friends. I've gotten less help than expected from my closest friends, but we are mostly in the having small kids stage and most are barely coping.

I rely a lot on my parent's friends to keep them (and me) sane, these are not in the same city, but regular phone calls and visits give them someone other than family to chit chat with. It helps me a lot, as then my visits can be more practical/in and out rather than also providing much needed social interaction, which frankly I don't often have it in me to give (I am the organizing friend). My mom's bestie will always say she's getting her smokes as an excuse to visit my home bound parents. She'll pop by for 10-15 minutes, chit chat a bit and be on her way. If you can encourage your loved one to maintain their social networks, it's really important.

For my own personal support, I don't shy away from telling people that my weekend plans involve caretaking, or that I'm stepping out to deal with a doctor or family emergency. It's life. It's not exciting, but it's where I am. There's funny and beautiful moments in it just the same. Some coworkers have given me incredible grace and that is appreciated.

The other surprising corner of help has been younger cousins, either in or out of college. One of my cousins came and visited my mom every Tuesday and Friday between classes one semester when he had time to kill and she was in a rehabilitation place for her foot, he brought her coffee and then they would go sit outside. He didn't even ask if we needed that, he just... Did it, his schedule is different now, but he still sends her memes. Another one brings her baby over to visit my parents once a month and my dad talks about nothing else for days. It's great, and it's inspired me in turn to go and do things like go with a friend to a playground to watch their kid for an hour coffee in hand. Low stakes stuff really counts and really helps.

My more social friends make a point of constantly inviting us along, or giving us outs in events that are too much. One even started having a dedicated "introvert fire pit" at their house parties where silence is encouraged specifically to make sure my partner felt welcome/could be social without being social. Turns out it's pretty popular in general, everyone wants a quiet time out together sometimes.
posted by larthegreat at 3:19 PM on December 26 [16 favorites]

Find the people who are already helping and organizing for their community and join them. Become friends in the process, through your shared values.
posted by stoneandstar at 3:59 PM on December 26 [1 favorite]

Best answer: This isn’t quite helpful in your active situation, but as a predictor I think there’s a lot to be said for how you show up for other people in the day to day. Like I hate going to Trader Joe’s because of the small aisles and business, but a friend stops by there every week after a routine medical appointment so she’ll ask if she can pick up anything. Among my friends it’s common to cook too much dinner or many baked goods and randomly just drop off food texting “porch drop” with no expectation to have to socialize, though it often turns in to “come in for a minute!” I’ve found it to be immensely helpful to accept soup (or drop it off) when someone has a cold and could have soldiered through or done door dash. Doing small things for each other routinely, makes it so much easier to ask for dinner to be dropped off when you’re having a hard time, or asking for someone to just come over and sit with you on a bad mental health day.

Certainly those who have had a similar experience (loss of a close family member, care taking, being disabled temporarily or chronically, having a kid, etc) are better at showing up when a friend experiences it as well.
posted by raccoon409 at 6:42 PM on December 26 [6 favorites]

We were new to Chicago when our first child was born. Family all lived 900+ miles away. Friends were more acquaintances at that point. As first time parents we had no idea what we were doing. We were overwhelmed. I remember saying to my wife that this darn thing does not come with operating instructions. Just going to the store to get diapers or formula or food for us was a logistical nightmare (at the time).

The people that we found we could count on were people who were similarly situated. A neighbor down the hall we had never spoken with beyond the good morning head nod in the elevator had given birth two months prior. They totally "got it" and offered any help we needed. When they were going to the store they always asked if we needed anything. An older empty nester couple in the building also "got it" and volunteered to be local grandparents.

Our lifelong friends from NY were very helpful. At least they would call us and check on us regularly. They would send us care packages. This was before Amazon or other online services that can easily send you needed items, but they had had experience with newborns and would reassure us that if the swaddle was not tight enough, the kid would still thrive.

If a lot of your friend group has not gone through trauma or traumatic situations, they might not understand how it affects someone. I think you need to appreciate what your friend group has gone through and rely on those who have "been there, done that" so to speak. While there are people who will help under any circumstances, they are less prevalent than those who have been through it before.

I also think that the answer above about friending those who are proactive volunteer types in the community is likely to lead to those who will step up in an emergency. I served on a local community board where I live now and while I consider my fellow board members to be friends, I am not socially friendly with them, but I know (it has been tested) that they would come to my aid in an emergency no questions asked.

As for emotional support, it is hard to anticipate who can meet your needs as it is hard for them to know what those needs are.
posted by JohnnyGunn at 11:28 PM on December 26 [3 favorites]

Best answer: gideonfrog makes a great point above. I would add that I am most helpful to others when I get specific requests or specific tasks. If you told me to drive 100 miles to some store that has a specific item that your family member needs to help them feel better emotionally, I would leave in 5 minutes no questions asked. If you say, any and all help is needed, I would not know where to begin. If you are specific with people, I think they are more likely to contribute. Even, "I need a shoulder to cry on" is better than "I am so spent with this."
posted by JohnnyGunn at 11:35 PM on December 26 [3 favorites]

Best answer: I was once advised to divide support into three different categories: emotional processing, logistical help, and friendly distraction. Be clear about which one would help in the moment, and ask someone who is good at the one you need. Most people are good at one but not all three, and asking, e.g., a distraction expert for emotional processing is going to be frustrating for both of you. I think thinking in those categories also helps one value the skills that people have, rather than being disappointed in the ones they don't.
posted by lapis at 6:23 AM on December 27 [10 favorites]

For your point #3, it is important to remember, especially as we all get older, and the world becomes more uncertain, that everyone is fighting their own battles, and not everyone is open about what is going on in their lives. I have found that help often comes from surprising places, and my preconceived model of how it was all likely to come together was way off. Try not to judge people as having let you down if they are unable to chip in.
posted by jimfl at 7:43 AM on December 27 [4 favorites]

Sometimes the difference between a helpful person and just a friend is personal experience.

In other words if they experienced what you are experiencing (the pain of not getting support from treasured friends when you need it most, or the reassurance of finding out someone in your world is an absolute rock), they are likely to be more helpful and even think of things you might not.

As a simple example, I've had many close friends die in the last five years. Some friends can talk about this and provide support. Some avoid it - usually ones for whom everyone is still living.

This can be hard to expose, but I've found that talking with my friends about the issues that come up can help me gauge their level of experience and helpfulness, so I don't ask people inexperienced with help and understanding for things they're unable to give.
posted by fake at 1:05 PM on December 27 [1 favorite]

Best answer: Hi roastbeef, and I am sorry you are in this situation.

I am a former caregiver for my mother with dementia, and a sometimes caregiver for an aunt with dementia. I also was a caregiver for my father-in-law with cancer.

Your specific queries, keeping in mind I have very little family other than my spouse. Also I’m sort of trying to sum up three very different experiences so I apologise if this doesn’t exactly answer your questions.

1) no family in other cities, so no data points. Family in the city where my mother lived at the beginning of her illness, some help, but only as support for me and not her. Some limited practical help, mostly emotional support. My spouse provided excellent support.

2) Thinking back, it’s not easy for me to recall what division of logistical help I needed versus emotional support. I think it’s safe to say, I needed more of both than I expected. While I always needed emotional support, the need for practical help varied and could be unexpected (after a medical incident, or something seemingly as minor as urgently needing to obtain sheets or toilet paper).

3) Nope, not for me.

4) I worked very hard at building a support network and this helped me tremendously. This response is going to be solely in terms of being a caregiver for my mother with dementia. Once we had a diagnosis (because there were several years where Something Was Wrong and there were many medical things to manage but I did not know she had cognitive impairment), and she was safe (in a care home/assisted living), I realised I knew nothing about her condition. I am a Person who Researches and wants All the Information. I read all the books, everything I could find online, and contacted the US Alzheimer’s Association. At the time they offered in person education workshops and support groups. The educational programs were fabulous. The support groups were hit or miss, but I found some that fit my schedule and were helpful. I was incredibly lucky to attend a group led by not only a neurologist whose practice was limited to dementia in all its evil forms, but also my mother’s neurologist who saw her regularly at her facility (the universe helped out there), and he would answer literally any question. I also received a great deal of support from the fabulous staff at her facility. The online forum for the US Alzheimer’s organization was hit or miss for me (I am not on social media; this probably hampered me in finding online people), but the UK Alzheimer’s Association had a very active forum at the time and this was an amazing support. When Covid happened, all my in person groups shut down, but the US Alzheimer’s Association quickly put support groups online. Instead of having to wait for the second Tuesday I was able to join any group anywhere in the US, and found several (not local) that suited me well. I had ongoing support from some unexpected people, such as the parents of a childhood friend. I have a friend who was experiencing caregiving for her own mother with vascular dementia- we are still our own support group of two! People from my exercise classes showed up for me emotionally, and my workplace was understanding. I got a therapist who specialises in caregiving, grief, loss, and trauma. I went on anti-anxiety medications. I hired an accountant to help with taxes and financial stuff. I already had a financial advisor and a lawyer for money things and legal things. I stopped trying to do everything by myself all the time (to the best of my ability). I would not have survived the experience as intact, without this support. I still suffered damage to my physical, mental, social and emotional health.

Other thoughts in no particular order, some personal experience, and some knowledge gained by untold hours in support groups and talking to people in similar situations.

Families often disappoint. Friends inexplicably disappear. People you think will understand and/or offer support, do not. This is NOT YOUR FAULT. Try not to spend energy on them. Easier said than done, I know.

Total strangers may help you-allow them! Never turn down assistance.

As others have said, when you are able, be specific about what you need. Many people wish to help but don’t know how. Some people are up for anything and others, not so much. I know that when you are deep into caregiving it can sometimes be difficult to identify what you need, and what you can outsource, and it can also be hard to accept help at times.

Try to be kind to yourself, and to take care of yourself as best as you can.

I could rabbit on and on and on. If you have other questions, please ask; feel free to MeMail me.

All best to you and your parent.
posted by kyraU2 at 10:40 AM on December 28 [1 favorite]

I am currently the caretaker for my husband who has stage 4 cancer and an uncertain amount of time to live. We find ourselves with a good support network and I don’t really have much advice about how to go about getting one, we got lucky there. I wanted to throw in my experience of how I have best received support.

Money

It feels transgressive to even write it out and maybe it means I have a less than shining character. It doesn’t have to do with us not having enough money; we are average middle class people lucky enough to have good health insurance and jobs with generous leave and disability insurance. We’ll be all right.

I haven’t straight up asked people for money, though if I needed to I would. It’s just that after a certain number of hand wringing conversations along the lines of “I wish I knew how to help” I just found myself wishing that every person that said that would give me $50.

And then two things happened that directed money our way so that I could confirm how lovely it was. One was that a friend set up a MealTrain page and MealTrain has a button that just lets someone send a GrubHub giftcard. Many local friends signed up to bring meals, but lots of more distant friends and family used the giftcard option and we ended up receiving more than $1000 in GrubHub credit. And honestly it was wonderful to be able to choose what food and when to receive it. We could afford our own takeout but it really did feel like a gift to use the Grubhub FOR FREE.

And then another friend became aware of a bucket list trip my husband longed for. And she set up a GoFundMe to raise money to not only send him but take our whole five person family which we could not have afforded. And people were incredibly generous and we got to go on this wonderful trip!

I mean that’s how money is supposed to work right? A medium of exchange. I give you money and you spend it on whatever is useful to you right at the time you need it. Meals, housekeeping services, transportation, utility bills.

Obviously not every need a seriously ill person has can be fulfilled with money, but money can really go a long way, especially towards assisting the primary caretaker.

So, in conclusion, my crazy advice is: be open to the idea that sometimes the best way to receive support (and give support, if you are a person reading who wants to help) is MONEY.
posted by Jenny'sCricket at 12:09 PM on December 29 [1 favorite]