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. 
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,
Kati
