screaming in frustration

If you want something you have never had, you must be willing to do something you have never done

Fact: Caregivers need help.

Fact: Many caregivers have trouble asking for help.

Fact:  When friends and family say, “Let me know if there’s anything I can do”, caregivers stifle the urge to scream.

 

There are so many things wrong with this ‘offer of help’.  First, it’s a lazy response to a real need – it’s an easy ‘out’.  A person who truly wants to be helpful should try to imagine your situation and offer some possible actions that will lighten your load; actions that a friend will actually carry out within days.  Secondly this ‘offer of help’ puts the onus of asking on the caregiver which feels like a veiled way of discouraging a caregiver from actually putting in a request.
As a caregiver community, we need to have a ready response to this ubiquitous saying.

An Experiment: Think of three things that someone could do that would be really helpful. These might include walking the dog, delivering a prepared meal or staying with your loved one for a couple of hours once a week.

The next time anyone says, “Let me know if there’s anything I can do”, have your answer ready. Say, “thank you for asking, yes!  Would you…?” and just pick one task from your list of three. At first, tasks should be one-time, simple jobs that are easy to complete. Once people get in the habit of helping and they know your daily reality a little better, they might expand the range of their helpful actions. Remember to put a time frame on your request – pin down a commitment. Offering heartfelt gratitude when someone does follow through is a good way to keep them coming back. Everyone likes to know that their helpful act has made a positive difference.

Try this and let me know how it goes!


Donna Thomson is a caregiver, author and activist.  Her book, The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (House of Anansi Press, 2014) is available from all major booksellers in the USA and Canada.

Originally posted on The Caregivers’ Living Room

Written by Donna Thomson
Donna Thomson began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer. Donna is the Special Advisor for Caregiving at Tyze Personal Networks and is the International Advisor to the PLAN Institute for Caring Citizenship. She is the co-founder of Lifetime Networks Ottawa, a PLAN affiliate and is a member of the Cambridge University Capability Approach Network. Donna is also an instructor at the Advocacy School (Ottawa, Canada), teaching families how to employ best practice political advocacy tools when advocating for care. Donna holds degrees in Fine Art (Theatre), Education and Theatre in Education. Donna’s interest in new modes of social engagement for marginalised families led her to sit on numerous boards, such as the London International Festival of Theatre, Women for Women International Leadership Circle and Dovercourt Community Association. Donna has spoken on disability and family wellbeing extensively, including at the London School of Economics, the Skoll World Forum, and the International Centre for Evidence in Disability.

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11 Comments

  1. I have often spent hours a sometimes a few days taking care of my wife after an infection flares up. I learned that I just could not rely on some people to be there when I needed help even if they offered. I learned for those people it was merely lip service and a way of making talk. But I have one friend who took care of his mom after she had a stroke. He also broke his back in an accident years ago and had some vertebra fused. Because he has been there and done that, he has more understanding of what I need. My wife calls him her big brother and he is definitely like a loving brother complete with the family squabbles at times! But there is a world of difference between him and many in our church who give the lip service but are never really there when you need them. Be careful about asking pastors for help. They are usually spread thin and they are often working with many people all of whom want their time. I know that place well as a former pastor. People will come to a pastor and ask for help and the pastor will hand it off to a designated volunteer, but if the designated person is unreliable it makes the pastor look unreliable too. Often the pastor is as upset and offended as you are.
    In our own home, we have learned who is reliable and who is just not there, even when they are there physically. It is lonely at times, and frustrating and also somewhat liberating, because once you know your real allies you won’t make the wrong choices in care and asking for help.
    We are members of a large Bible study group, that meets every Sunday. We learned about expecting too much from people who offer help. There are some people in our group that just show up or write notes and cards. Very few people, unfortunately, but they are there. We have had our special van fixed by a mechanic, gasoline bought for the van and often when I was running from hospital to home to work, food provided at the times the meals were needed. This often came at times when I was especially stressed and stretched thin and it always seemed to come from the same people, Thus, I learned who I could count on. I don’t ask church members for help. I ask for prayer for specific needs and certain people will show up meeting that need. Asking for help makes some people feel awkward, and asking for prayer will motivate the right person who is moved by compassion and genuine care to act.
    David

    Reply
  2. The way I look as a caregiver is that is what GOD put me on this earth for, I took care of my brother and mom for 4 years he was a quad and a 400 lb man. some days I had mom in bed at one end of the house and my brother at the other end. It was all very rewarding. Now i’m mom’s sole provider and believe you me she is harder than my brother was because she can walk. She has Aphasia from a stroke and I have a brain aneurysm behind my right eye. So there is a great big problem with communication. I as GOD for strength everyday so I can finish the job he put me here for me. I’ve even cared for my 3 grand babies while their mother had knee surgery. That is why I am on this world, believe me it isn’t easy. I haven’t had a life for the last 14 years but my reward will come when the LORD takes me home with him. That’s my story.

    Reply
  3. It isn’t that simple. With Mom, she needs help with personal care and she isn’t going to agree to allow someone she doesn’t know to help her…it is embarrassing for her and took a while for her to not feel badly about my helping. She also has bouts of smoking and many people do not wish to be around smokers, due to allergies and/or the smell. My sister finally was able to do these things for her, although it actually was hard for her, to give me a break; however, my sister lives a few hours away, works full-time, and can’t be here very long when she does get some time off from her job. I’ve had offers to help and I thank them for the offers. It helps to know others do think of you and the one you care for…and I know at some point Mom will have to be more accepting as she has in the past when I needed some medical attention out of town. At that time she was able to get up & down. She has grown physically weaker since then, so personal care is an issue…something some cannot handle.

    Reply
  4. I asked a friend early on to watch my husband, who had a stroke, while I went to church. She said yes. Then I saw on Facebook that she was going out of town that morning. When I asked her about it, she said she was going to call methe morning she needed to be here and let me know. I have never asked her again and I have not seen her in over a year an a half. I think she has avoided me. It would be nice to see her again, but I am not making the phone call. Am I wrong to feel this way?

    Reply
  5. Last time my husband was in the hospital, I really needed help with returning a piece of medical equipment. When my pastor asked, ‘Let me know if there’s anything I can do’, I asked if he, or someone in the church, could return it for me. He said, “(x) works out that way. I’ll get him to return it,” then promptly forgot about it. I paid for an extra two weeks rental because it took that long for me to be able to return it. I am discouraged from ever asking for help from him again.

    Reply
  6. I think sometimes us Caregivers are afraid to ask for help, because the help that we really want may be too much to ask of people. For instance, paying for a tank of gas, etc.

    Reply
  7. Many people don’t KNOW what to say, so they end up saying “Let me know if I can help”. SO PLEASE…LET THEM KNOW! I realize that some may be “just saying” it, but give the others a little grace…and go with those (as suggested above) three things you’ve thought of. As a person who rarely “needs” help, on the occasions of actually needing help, I was embarrassed to ask. It made me feel “weak”, and less than myself. (Could this be pride???) But asking for help actually bonds you with the person who is helping. And there may be a way that both parties can “help” each other in some way…maybe not now, but in some way, some day, the shoe will be on the other foot. Scripture says, “Bear one another’s burdens”. 🙂

    Reply
  8. I was waiting for my sister and brother to say such a thing so I could make suggestions for them to help. They never even bothered to ask.

    Reply
  9. So many times people say, “Let me know if I can help.” But most of us are reluctant to call and ask someone to do something. I think that it would be better to tell the Caregiver that you will be over on a certain day, at a certain time to sit or take over and for them to make plans to shop, movie or just walk the mall. I know that when someone asks me that I am hesitant, because it doesn’t seem sincere. Sometimes an offer to buy a tank of gas, (my husband is now in the nursing home) or cook a meal. My husband is a former pastor and a group of minister’s from the Minister’s Fellowship came to visit at the nursing home and as they were leaving one of them slipped a twenty dollar bill in my hand without the others knowing. Such a sweet and kind thought. On Memorial Day, pick up some barbecue and fixings and take over to the Caregiver, eat with them and talk for awhile. It’s lonely caring for someone sick. I took care of my father with Parkinson’s and my husband with Alzheimer’s now. So lonely, it makes one want to give up.

    Reply
  10. My neighbor offered to go read to my husband who is still paralyzed. I loved that it was a thoughtful, doable suggestion.

    Reply
  11. I always preferred the general “Let me know if there’s anything I can do.” I always found when people offered specific suggestions, they would get upset if they suggested something I didn’t need help with. Rather than listen to me, they often became focused on this one idea, pushing it at me over and over until I was near breakdown.

    It places too much pressure on me to have to think up creative ways they can help me that will satisfy them (so they will stop pushing the issue).

    For me personally, better advice is:
    Do offer to help, but be respectful if the answer is “No Thank you”.

    This issue has caused me a huge amount of grief and stress.

    Reply

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