couple-ms-webAs a person living with pain, it can be hard, no matter how good your relationship may be with your partner and caregiver, to explain what you need from them.

What does a person living with pain need from a caregiver who is also their loved one? It’s a question with answers that may or may not seem obvious. You might be surprised if you’ve never directly asked.  Here are my insights into what I – as a person with pain – want from my caregiver.

  1. Love me for who I am — pain and all. I think a person with pain wants more than anything to be able to be who they are each hour of the day — let me be the person who snuggles on the couch because every fiber of my body hurts or let me be a gardener because I feel good today.
  2. Show compassion — try to understand that this is not what I wanted my life to be like either.
  3. Suspend judgment–don’t judge me by what I can or cannot do on any given day.
  4. Be understanding– there are days where the pain takes over and consumes all of me — my thoughts, my strength and it makes me angry. All I want to do is be by myself to deal with the pain the best way I can. I don’t want to talk; I don’t want to watch a movie or television show. Please, just let me get through this pain flair the best way I know how and please do not take it personally.
  5. Be flexible— let’s take life each moment as it comes and each day at a time. Join me as I try to go with the flow, because it can and does change quickly.

If we do not take the time to sit down and talk to our partner and caregiver, how will they know what we need?

I had the chance to speak to my partner/caregiver in life and here are his perspectives to the five things I mentioned above.

  1. I do love you, pain and all. I will always love you.
  2. I recognize that this is not something you chose for your life and ours. It can be frustrating because I cannot change this or make it better for you. I am supposed to keep you from harm, protect you and be your knight in shining armor. Pain took that away from me.
  3. I try not to sit in judgment. I know that you have good days, so-so days, bad days and really bad days. I don’t expect you to do anything that would cause you more pain on any given day. I do want you to enjoy the days that your pain is lower and I want to see you moving around. It has been proven that movement can and does help you. I find it difficult to see you sitting or lying around in that deep darkness that is depression. So on the days you can move easier due to less pain, please do, it makes me happy to see you mobile and living life.
  4. I work very hard to understand that on the most painful days, which it takes your full attention to deal with the pain. This is one of the hardest things to deal with. I don’t want to be pushed away. I want to help you, to try to make you feel better.
  5. I will bend until I break. I want you to always feel as if you can be the true you. I don’t mean to push you to move on good days, but I will not stand back and watch you lay around afraid to move on good days. I don’t mean to be over-protective on the bad days.

Keep in mind though that as a caregiver, we are constantly on a rollercoaster of not knowing exactly which way to go or what to do or what to say. We can get dizzy, unsure of our footing and nauseous from the uncertainty at time.

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