Trauma Survivors Network - provided by ATS

Helpful and unhelpful help

How do you deal with people who want to help, but are either trying to do too much or just aren’t giving you what you need?

Reply: Helpful and unhelpful help

I`m sorry, I tried answering this, but honestly can`t give a good answer.

Reply: Helpful and unhelpful help

I find that everyone likes to say they want to help any way they can. When it comes down to needing to breathe a minute no one can make the time. Especially when dealing with a survivor of a Traumatic Brain Injury everyone sees the survivor as “healed” physically so there is no need for any other help. There is always someone else’s schedule of kids soccer or a long day at work that takes precedence over helping out.

Its like asking someone to help you move. Everyone is there to support and encourage you to find your dream home but when it comes down to actually moving stuff everyone is conveniently out of town, has a baby shower or hurt their back.

Its easy for those friends and family that don’t live with you or don’t see the survivor at their worst to assume that since you appear to be juggling your new life fine that your aren’t in fact slowly going under.

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Thanks for this reply. I agree – it’s really hard for people to understand that especially for a tbi, even if you look ok, there’s still a lot going on. Did you manage to get the help you needed? It sounds like this may be something you still struggle with.

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Susan, this is a a great question. I am positive that you are not alone in wondering how to deal with friends and family that are over-zealous in their approach to your recovery and others that might have provided you empty promises. Throughout your recovery, many people will surprise you, both good and bad, and you may even surprise yourself at times. I always encourage honesty; some people think they are being helpful, but don’t understand their imposition or the pressure their presence may put on you. The only way to genuinely clue someone in is to tell them. I am also positive that other survivors will be able to relate to feeling like people make empty promises to help. I like Hapless-Romantics analogy of moving day. Your trauma, your experience, will certainly highlight other’s intentions, genuine or empty. It is often helpful to share these experiences with others that might be going through the same thing, as it can be a continued part of your trauma to realize that those you thought would help aren’t, and you maybe surprised by those you thought would never step up, that do. The first step to figuring out how to advocate for yourself is doing things like posting here; possibly seeking out other survivors, and sharing your story. Connection is direction…and you seem to be moving onward and upward.

I wish you continued recovery. May you find the right help. Reach out to your local trauma center, or check this site for an affiliated trauma center near you. There are many support groups running throughout the affiliated program areas.

Reply: Helpful and unhelpful help

Susan,

You don’t say what injury you are recovering from or the circumstances. But if you are looking at a long recovery (and really what trauma isn’t a long recovery?) I suggest that you be very specific about what your needs are. Your friends and family want to help you and would be upset to know that they were really being more of a burden. I learned during my recovery that I needed to advocate for myself. To my doctors regarding my care. To my husband for my needs. To my extended family and friends for help.

Perhaps if you have a trusted friend or family member that you can speak openly with and share your frustration. And then they could serve as a gatekeeper and delegate tasks.

And for for friends who are doing to much, remember to thank them for what they are doing, but kindly redirect them to what you really need.

There’s no roadmap for your recovery and your friends and family are trying to do the best for you but may need more specific directions.

Take care.

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Hi Susan,

Your post hit. for me. upon the most unexpected and most painful part of my recovery – which is saying quite a lot given the physical pain I am in and the limitations my “new” body places upon my life.

Over the past year I have been overwhelmed with gratitude for the outpouring of help – sometimes form the most surprising places. But it is the ways your loved ones struggle to cope with your injuries, especially when their struggles leave you high and dry – that can catch you the most off-guard and hurt you the most.

I’ve gone through (and am still going through) several different versions of this. My mom dropped everything, moved into my home (she lives several thousand miles away), and stayed for over 2 months to take care of my family (husband and two kids) and run my household, as well as to be with me 24×7 once I was discharged from the hospital. Sounds great, right? Well, by the end of that time, she and my husband were hardly speaking (control issues), and then my in-laws, who love me very much, came home from their winter break in Florida. It was my hope that mom would go home and my in-laws could take over. The transition didn’t go at all well, and within week my parents and in-laws (who had been friends for 20 years) were hardly speaking, and my husband was speaking to neither my mother nor his own father. Of course, all of this left me high and dry for the support I needed, except that they were all here for me individually as long as I didn’t expect them to be in a room together. I had resentment from my adult sister who was back home with my dad wanting mom to come home to them. Although most of these relationships have healed, the big shocker is the damage that this past year has done to my 20+ year marriage. When I say my husband and I had the type of relationship that you pray for, I’d be understating it. Of course we weren’t perfect, but we were solid. I never looked at another couple and thought “gee, I wish we were like them.” But to my utter shock, the accident and it’s never-ending after-effects have left their mark there, and I’m still not sure we’re going to make it. He has excelled at the day-to-day logistical support – getting me to doctors, taking over household chores, taking on a bigger share of the parenting responsibilities. He would never leave me to fend for myself. But emotionally….he can’t fix me, and he doesn’t feel comfortable constantly staring at a problem he can’t fix. In the early days I was eager to let him escape from the stress of my injuries by going out with his friends – now that’s the only place he turns to for enjoyment. I’m not all that fun to be around – I can’t keep up physically, and I have too many days where the stress leaves me tired or cranky, so he’s lost the desire to be with me. Over time my ability to cope with my trauma has improved, but I “returned to the living” to find I’d lost the companionship of my husband, and so mow my stress and irritability come from that – making me just as unpleasant to be around, but now it’s the bitter cycle of “you were too difficult to be with after the accident, so I found relief by avoiding you, now you’re sad because I’m avoiding you, but your sadness stops me from wanting to come back to you…”.

I think I’m veering off topic – I just wanted to frame where my partial advice is coming from. For most of these failures to be the support system I needed my closest loved ones to be, I’ve found that I need to understand that my accident surprised them as much as it did me, and that just as I have been given no survivor’s manual, neither have they. They are going to screw up, even though they surely don’t want to. Each of them has a certain amount available to give, and that amount is different from person to person. If I love them, I need to forgive them for their failings, and since there is no handbook saying “how to be the _____ (husband/mother/sister) of a trauma victim”, I have to be that manual for them. I have to ask specifically for what I need, and then I have to understand and forgive them for sometimes saying no. If they break down and have what we call “a crazy moment” (like the fight that broke out between my parents and in-laws), then we just have to call it that, forgive, and move on. Right now my personal challenge is to do that with my husband – but being let down my someone that intimate and finding a way to forgive that lapse is proving much harder for me than it has been with the rest of my family.

Another thing that helped me and my family, and I know that not everyone has this luxury, is to accept help from strangers – paid strangers if necessary – whenever you can. What I mean by this is…if you need a ride to rehab 3x a week, and can pay a neighborhood teenager or college kid, or if there are community transportation services for the disabled, then USE THEM! If you can’t be left alone at home, can you get a companion (I’m avoiding the term “sitter”)? Can you use a grocery delivery service instead of asking someone else to do the shopping? I found that removing the emotional ties to many of these chores helps avoid burnout in my family (which made them tired and cranky!), and also stopped me from placing any emotional significance on whether my loved ones could help me with any specific task. By asking my loved ones for help with only the “big stuff”, or only when I was stuck, helped them to say yes more often when I did ask.

Obviously I need a lot more help myself dealing with the tangled web of emotions that comes along with always needing help, as well as the pain of feeling let down when not everyone has been there for me in all the ways I need. I hope that you can see some ideas in the things that have made it better in my situation…and if anyone else has found ways to make peace with these tings, please chime in!!!

Reply: Helpful and unhelpful help

HI Susan:

I deal with this by using my voice. If they are over helping, I just let them know that I truly do appreciate them, but that right now I just need to learn to do some things on my own. If they are under helping I use my voice to let them know I really need their help and how they can help. Usually this gives me good results. It is very hard to bite my pride to ask for help, but I would rather suck up my pride put on my big girl panties and make my needs known then to hold annimosity for not speaking up.

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I would make a written list with two sides: ASK/MAY NEED and DON’T ASK/DON’T NEED. Then I would list the things I want people to ask about, or help me with, and the other side I would write things that I don’t want people to ask or offer. Then, I would post it in a conspicuous place. Every day, I would amend the list. I hope this helps, and I’m sending you good vibes!

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I know they are just trying to help me… but they don’t understand. They say to just forget about what happened… how can I do that with these scars on my face and all over my body?

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I found lots of people offered their help, which being the person who is normally the ‘giver’ can be hard to accept. But it helped to give them something specific i.e. Can you do some washing for me? Can you take the kids to a place? Think about what you really need and do not feel guilty in asking. My boss was great, some people at my work place wanted to buy me flowers. She rang me and asked what did I really need? And from that I had people making meals so my family was fed and they put together a hamper of groceries.
As Shannon B says also – utilize any community services that you can and if you are able to financially pay someone to do things like mow the lawn or clean the house, do your shopping online and get it delivered. thing that bugs me at the moment is my house being really messy. I’m not a clean freak but it is frustrating me to no end not being able to do simple tasks. My kids are trying. I’m so embarrassed I cancelled an appointment for a physio home visit

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Distance yourself from them. I’ve chosen 2 live my life in a reclusive state of mind. It drives others that know me crazy but no matter how I explain how I feel it seems not 2 get thru 2 them. It’s almost as if a great big tidal wave flies over their heads. Don’t get me wrong they mean well, they need to get some help on their own with researching what condition you have or what is bothering you. Without any choosing 2 do this, they are walking blind in the dark. Make sure you give them clear boundaries of what you are going to put up with them. If they drop in without calling and you don’t feel like seeing them, you need 2 ask them 2 leave and they should take the initiative 2 leave. If they don’t leave and plead with reasons why they believe you should see them, they are not respecting your boundary and you could choose 2 distance yourselves from them and limit contact with them.

Reply: Helpful and unhelpful help

hi

Reply: Helpful and unhelpful help

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