How to Let People Know How They Can Help You

I’ve been reading different people’s blogs and comments and have noticed a common theme: Friends and family ask how you are, but not how they can help. And even those who do want to help don’t quite know how to go about it. They may say things like “let me know if I can do anything for you.” It can be frustrating, because it’s hard to ask people for help. It would be so much easier if they would ask specifics such as “can I bring you a meal this week?” or “do you need help driving anywhere that I can help you with?” etc. Here’s my story of how my friends helped organize other friends and neighbors into helping our family in different ways. I hope this gives you some good ideas.

We don’t have any family here in Austin…they all live in California. But our church family has been tremendous helpful to us, as have been many of our other friends. But even so, most people aren’t proactive, and give us the ol’ “let me know if I can help.”

But we are very fortunate that 3 of my friends started organizing the support for us. One sent out an email to everyone at the church telling them of some of our needs. She organized meals for my husband and me, as we were ALWAYS at the hospital except for the night hours when the ICU didn’t have any visiting hours. So 3 nights a week we would come home to a prepared meal (dropped off by friends and other supporters, some of whom we didn’t even know personally) and had plenty for leftovers for the other days.

Another friend called and emailed everyone and told them our wants and needs regarding visitations, so that we didn’t have to do it. (Sometimes it was overwhelming to have too many visitors at one time, but it’s hard to tell people that you don’t want them there at that moment. So my friend was like my “guard dog,” making sure that we were not overwhelmed. She also got together with the other two organizers and one other friend and came up with a schedule for their visits once Lizzie was out of ICU and was in the rehab hospital. Between the 4 of them, someone was with Lizzie and me every M,T,W,Th,F for one or two hours at lunch time so that I could take a break and go down to the cafeteria to grab a bite, or else get out and take a 20 minute walk or so.

The third friend organized people to come to our house and take down all of our Christmas decorations and pack them up and put them away. As spring arrived she called out the troops to come over to our house and mow our lawn, pull weeds in the garden, clean the house, etc. And her efforts to organize gave other people ideas on how they could pro-actively help. One boy scout troop, and our church youth group, really wanted to help, so my friends would find other projects for them to help with.

Over the 6 months that Lizzie was in the hospital, and even once she came home, they continued to update everyone when our needs changed. If anyone ever said to them “just let me know if I can help in any way” they were sure to tell them exactly how they COULD help.

So my suggestion would be to find even just ONE friend who could take the position of being a coordinator/advocate for you. Sometimes people really want to help, but just don’t know how to be proactive and sit down with you and figure out what your needs are. Or even to simply observe and figure out some needs that you don’t even realize you have (such as the Christmas decorations for us…we would have happily left them up until August if that’s what we needed to do, but it was really GREAT to have other people figure out that they could be a big help to us by doing it for us.) If you need someone to drive you to the doctor, that friend can call or email your friends and get volunteers to help you with that. If preparing meals is difficult for you, your friend can coordinate meal deliveries for you. If you need help shopping, they can coordinate people to help you with that. Etc. This is good for your friend too, because it gives them a purpose, and a way to help you without being completely overwhelmed his or her self by trying to do everything for you his or her self. It’s a win-win situation.

A few of my daughter’s friends have been very loyal and supportive, but most of them have a really hard time dealing with how different she is, especially when she was in the hospital. She was so critically ill for a long time: all the tubes and and the ventilator in the ICU were pretty overwhelming to see, and pretty scary for kids who just graduated from high school. And then, once she was taken off the respirator, she had to have a tracheostomy, so the sight of her with a big tube going through the middle of her throat was a but scary. And to add to that, the trach was “cuffed” because her vocal cords were paralyzed, meaning that no air could pass from her lungs to her mouth, so she could not talk. Because her ataxia (extreme tremors and jerkiness) in her arms and hands, she could not point to the letters on the spelling board. Nor could she type into a computer. So we used sign language to communicate (thankfully I had taught her how to sign the alphabet and a few simple signs when she was 9 or 10.) Since I am the only one who knows the alphabet or signs it meant that I HAD to be with 24 hours a day in order to translate everything she said to the nurses, doctors and therapists, as well as to visitors. YIKES. She had a few friends who were very loyal, visiting often (one visited every day during Christmas vacation.) However, ALL of those friends are in college, so once vacations were over they had to leave for school. NONE of her friends who stayed in Austin after graduation are mature enough to handle it, so they would text or email her and say “im gonna visit you next week” but then never show up. :frowning: So now her loyal group of friends for most of the year are all adults. She’s adjusting, but it’s still hard to have her friends all off in college, living the life that she is supposed to be living right now. Gets her pretty depressed sometimes. So I’m her advocate in that area, letting her more mature friends know that they are welcome to drive our car to take her places, like the mall or the movies. (They have to use our car because she is in a power chair and our car has the power lift to get the chair in and out of the car.) I have taught them each how to use the lift, as well as how to help her transfer in and out of the car, so during holidays and summer vacation she does have some fun with her friends. But it took me and one other friend to be her advocate and to help coordinate these friends and to give them concrete ways that they can help.

Anyway, I’ve blabbed on and on…sorry. It’s therapeutic for me to get this off my chest, but mostly I hope this is helpful for all of you who read this.

Best wishes, and hugs,

Great post, very insightful. I get the stroke smart magazine (free for survivors) from and it mentioned a free online calendar and scheduling website (free) to help coordinate help from friends/family. Got to I remember it b/c it seems like such a good idea!

Btw, I really think that you find out two really important things when something like this happens. You find out how amazingly wonderful some friends/family are and you also find out the ones who aren’t very good and frankly, aren’t worth your time. Why waste your energy on friends who aren’t going to be there when you need them, right? I think it’s a gift to know both really. When my mom had cancer a couple of her closest friends were never there for her, which shocked us and annoyed us. She had my two sisters and I and we loved and adored her, and dad helped too, so even though it wa really just the 3 of us to support her, we were with her non-stop. I lived out of town, so I took time off and eventually took a leave of absence. The best moms are worth any moment of time you get with them! For my recovery, I was very lucky. My family and closest friends were amazing, and other friends would cheer me up occassionally, kind of just when I needed it. Weirdly, it helped that we’d gone through my parents’ cancer problems, b/c my sisters were really well-organized about the whole support thing from day one, taking shifts at the hospital and after, kind of had a good system from early on.

I think it’s hard to be the caregiver. I’ve been on both sides. When I was recovering, I remember yelling at my oldest sister forcing me to move my legs the first week of recovery, I was so mad at her (and the world)and she was telling me to do ‘just one more’ leg lift in the hospital bed. It really hurt and I was wiped out from just sitting up, but the physical therapist said it’s really good to do as much as you can as soon as you can, and she like a marine sargeant. She said ‘good, pretend you’re kicking me’. She was VERY patient with me, and that was funny to me. I was down to 100 pounds, and I’m not a big eater anyway, so they badgered me to eat and eat and eat. I was very mean to them, and they let it roll of of them.

I also would add that I’ve managed many projects for jobs, and if you don’t give people specific tasks with specific instructions, even the brightest people don’t keep on track. Vague action without specific dates and actions go ‘undone’. It’s human nature for most people. I always had to send follow-up emails and have a list of actions, the person directly assigned to do it, and the date due. Otherwise, nothing ever seems to get done and this to worked. I’m sorry you have to go through such difficulties, but I’m hoping you’ll continue a greate recovery journey. Sounds like you’ve all mad amzing progress so far.

it’s good that you have the perspective of being both caregiver and care receiver. Whenever Lizzie would get angry with me, or with the world and just take it out on me, I would tell her “just make sure you remember this feeling, so when I have a stroke one day you won’t be upset when I get angry with you.” :slight_smile:

It is very hard to be the caregiver, and that was something Lizzie has had a very hard time coming to terms with. But she has a friend here in Austin who had an AVM bleed 8 years ago, when she was 28. Kimberly is always able to get Lizzie to think about the parents’ perspective by telling her how much she remembers taking her anger out on her mother, and looking back at it she realizes how hard it was on her parents. They live in Houston, but on one of their visits to Kimberly we all went out to dinner and got to know each other (Kimberly, Lizzie, Kimberly’s fiance, and us 4 parents.) And the last time they came up and visited Kimberly my husband and I had a wonderful, emotional dinner out with them. It was wonderful, in a very tearful, remember-every-awful-detail of the miserable days when our children were in the ICU in comas, because we finally had someone who actually understood what we were going through. I don’t know if it really harder on the caregivers in our case because of how disabled Lizzie is now. I remind her that some days it’s just awful for me, but that I know that every day is tough and challenging for her. Thankfully, all of her deficits are physical, so she is still very much the same smart, funny and lively girl (and total fashionista who must be perfectly made up, coiffed and dressed every day) that she was before. She just has difficulty talking, so she speaks very slowly. But when she sends a text message or an email I can still hear her old voice speaking to me. Perhaps that’s why her friends who are away at college are so easily able to be with her…they mostly communicate through text messages, so they still hear the old Lizzie too. :slight_smile:

Thanks for responding to my blog. I hope you will keep in communication with me.

Wonderful posts, Kati…they were very insightful. Several people have said that same thing to me: “Let me know if you need anything.” I feel too embarrassed to ask for anything. You are very fortunate to have those friends to pick up the ball for you!


Last night after I read your comment I started feeling like I really didn’t deserve such devotion and care. Sure, I’ve waited with Mary Lou numerous times while her husband, father-in-law, daughter were having surgery, but those were only short term, easy things to do. And then I thought about Lynn and remembered how when I visited her in the hospital right after a horrendous car accident I asked her to give me some specific thing that I could do for her, and per her request I drove across town to pick up her new glasses from her ophthamologist’s office and drove back to the hospital to give them to her so she could see. And went to the ICU from there to check on her 8 yr. old daughter who was in a coma, because they wouldn’t let Lynn leave her room to see her. And one time I brought her and her family a meal once she and her daughter were back home. But those were only small, easy things to do. And what about Mary? All I’d ever done was visit her son in the hospital once and bring her family a meal after he had come home. And Kim? She’s never once asked me to giver any kind of big help? So how do I deserve such long term devotion?

Oh yeah, I was Kim’s 2 daughters’ violin teacher for 6 years, and was Lynn’s daughter’s violin teacher for 4 years, and gave Mary Lou’s daughter occasional free violin lessons in High School and college. And I was a youth volunteer at my church for 9 years, and every one of their children had been with me in the youth program. Hmmm, maybe I WAS of service to them, even if I was just doing fun stuff. So maybe I really DO deserve their love and devotion. (And of course, they all love Lizzie so much that they would do ANYTHING for her!)

And then I started thinking about how much I love visit people in the hospital, bring meals, and run errands or be of service in any other way that would help. And I realized that perhaps they have helped me in the ways they have because that’s what they do well and truly enjoy doing.

So thank you for making me think about it all. It helps me to not feel so guilty about accepting so much help for such a long time.

That started me thinking about everyone else in this AVM community, and I’m betting that every one of you all have shared yourselves with many other people, even if just in little ways. And thus, shouldn’t be ashamed or afraid to accept help from friends…even for long term. And I’m betting that each of you can think of just ONE person in your life that you could ask to be your “coordinator” in the help department. That way, when someone asks what they can do for you, you can tell them that they should check with (insert friend’s name here) because he/she knows what needs other people have volunteered to meet and can tell them what needs you have. That takes the pressure of having to actually ask for help.

So go for it! You may just find that a great burden is lifted from you and your family, and you may actually be giving other people the opportunity to feel uplifted by being of assistance to you.


Kati…I totally understand your blog…In my case, at first I heard from everyone, but I had no idea how they could help me…I didn’t know how to help myself! I had my brain bleed on 12-23-09 and I just felt that I had messed up everyone’s Christmas. And I did. Then people came to visit, but I didn’t know who they where. Then when they came to visit after I go out of rehab, couldn’t understand what to say to them. After one month, my family stayed away. Then my good friends stayed with me, but they have their own lives, so I don’t want to ask them for help. It’s been 1 1/2 years since my bleed. Now I am asking my daughter to move out of my house because she has a depression disorder and it’s making things too hard for me! So now I’m doing everything myself. Please don’t think I’m complaining…I talk to my family ever day, but they truly don’t understand how I am. I know have to find a new place to live because I can’t afford to own my home now that I’m on disability. It’s hard to think how I’m going to do this, but I have to. Everyone has these issue…but it’s so much harder having a brain injury. I am a Type A person, so I will make it!

I’m sorry that your family is having such a hard time dealing with your injury. It is so hard not having their help. I certainly understand what that is like. My oldest daughter, Victoria, who has an anxiety disorder and Bi-Polar disorder, was living in CA with my mother at the time of Lizzie’s bleed. She immediately came out to be with us, and stayed for about 2 weeks. She was pretty good about visiting, and was able to handle seeing Lizzie in the ICU. But the sound of her being suctioned made her feel anxious and sick to her stomach. After she went back to CA for school she felt so guilty because she realized it was easier on her emotionally when she was not around Lizzie on a daily basis. My mother doesn’t deal well with these situations either, but won’t admit it. When I asked her to come out she said she wanted to wait until Lizzie was home again and she could be of more help to us. Plus her calendar was so filled, etc. i finally put my foot down and told her she needed to come out in early February, that it didn’t matter what she wanted…her granddaughter wanted her to be with her NOW, and she needed to step up. She came, but really had no idea how to help us. She willingly visited Lizzie, but when I asked her to stay with Lizzie while I ran errands she just couldn’t handle the idea. It was far more work and stress on me to have her here, but it was what Lizzie wanted, so I just had to put up with it. My brother never once made it out to see her, not even when we got home. Every one else in our family has been tremendous, though. Unfortunately, they all live in California, so their opportunities to visit were limited. But they all did it.

Our friends were really wonderful. Our church family is truly our family here in Austin, and they were awesome. On Christmas Day we had lots of visitors (I say we, because Lizzie was still unaware of who was visiting, and really can’t remember any of it still.

I’m sorry you are having to worry about where to live. Have you contacted any agencies to help you find housing? There ARE agencies who can help, but it is really difficult to find out who they are. Is your doctor’s staff able to direct you to someone. The case manager at Lizzie’s rehab hospital was instrumental in directing agencies to go to in order to help Lizzie get medicaid and disability income.

I wish you much luck.

What a great post! I’m going to feature it now.


I’m glad you have good friends !!! I find people are who they have always been with me, the few that will help do help. The others give lip service. I thank God for my husband and my two daughters, they are helping me everyday. I need what I need when I need it, I hear a lot about folks days off, I tell them I’m not on their schedule, I can respect that they have a schedule, but I may be resting on the days they say they are available, resting is very important too. People who really want to help figure out how, just as your friends did. I’m not thinking too much about people these days, I can’t take the stress.
My husband and I just took my 17 year old to school 8-15-09, my 22 old is pregnant.
My paralyzed mother lives with me, I can’t take are of her and my youngest is in school now, I’m focused on help for my Mom now that my youngest is in school and not around to help anymore, I don’t want to wear my oldest out because she is pregnant. She doesn’t live with me, but she comes over everyday. The same so called friends have never lifted a finger to help me with Mom, so I don’t expect anything from them now. I know one person that didn’t want to help her 90 year old grandmother, but claims she wants to help me, I sure don’t believe it.
Thank God for the good in your life and mine.

Ameenah, It certainly seems like you have your hands full. Isn’t that the way it seems to go…you are dealing with your own physical problems, yet there are other people depending on you to take care of them. Life is hard…sigh.

I enjoyed your post on how your friends were proactive and helped in so many ways. I think it is a wonderful showing of how people could and should be…When my husband had his craniotomy, he had support from our 3 beautiful children, 25, 20 and 10 year old. We had some family and friends who said to let them know if we needed anything…but at the time you really do not know what you need. I think you just need someone to do with out asking (if it makes sense). I found that we were very alone through the past year and people think he is fine…he is up and about…but everyday things that came with ease in the past become more difficult. While this was all going on I never realized the toll it was taking on our youngest child. We were fortuanate that her teacher voice some concerns, when we told her what her dad has been going through and she offered so much advice on helping her cope with the worries. (when her dad went back to work it was amazing how the weight of the world seem to be lifted off her shoulders.) The support I received from work was not so good…I found that there was very little empathy as to the stress I was under and pretty much had to beg for time off…and sometimes denied. I work at a place where the summer is a very busy place and was told this spring that I would be fired if I got teary eyed at work, like i did last summer, I defended myself that the tremendous stress I have been dealing with a husband who needed me full time, a young child who needed me fulltime, and another daughter who needed me because she had to have her jaw surgery and wired shut for 6 weeks (this happened 4 days after Bob was released from the hospital) and then of course I had to work fulltime. I had to work becasue we needed the money, but I think Bob;s recovery seem to take longer becasue he didn;t rest like he should have. I am so sorry to talk about this…but I can’t seem to get over the fact that we have always been there for others and be supportive…and when we needed it…it didn’t happen. We are still struggling financially from the snowball effect the recovery from this seems to create…but we are extremely gratefully and blessed he is still with us.
thank you for letting me vent.

Hey Kathy
It is, being one who has lived it spending three months in ICU then three months in physical therapy, it was hard to tell my best friend who supported me through it all thank goodness he stuck by my side, and even though my sis at the time was five she was one of my guardian angles, yea it takes a toll on everyone even if you don’t notice it, ya not everyone has a heart