We got this exquisite, heroic message a few years ago, in response to my email request for input when I was writing the Caregiver Stress imagery a few years ago.  

I recently came across it and again marveled at the beauty, wisdom, self-awareness and courage of this rock star of a mother – it’s an essential manual for anyone facing similar, heartbreaking circumstances.  

She helped me enormously with writing the narrative I eventually recorded, but more importantly, she’s just such a dazzling role model, who offers such excellent advice, even though she’s not trying to give it.

So it’s time to post it again, for others struggling under the weight of similar conditions – anyone caring for injured, impaired or chronically ill loved ones.  

I asked permission to post it and got her thumbs up.  Here it is.  It’s long,  but well worth every minute it takes to read.  She replies question by question.

Dear BR,

I was a full time caregiver to our severely brain-injured teenage son, with my husband overseas and our younger son to care for. This was for eight months, following six months of hospitals, and included a dozen surgeries, several of which were life and death - four of which took place after he came home. He is now confined to a state mental facility by the courts because of the extreme behavioral issues caused by the brain injury.

[In answer to the question: What was hardest for you about this care-giving situation?]
It was so constant, and felt so very lonely. I was concerned no one else could do it as well - that my son would feel abandoned if it wasn't his Mom there. I had to get up every two hours to make sure all of the breathing equipment was working correctly, so I never was rested, had very little time to fit exercise into my day, and while I tried to eat well, I would find I either over-ate - junk usually - or would completely forget to eat and not feel well.  I saw no end to the situation.

[What feelings did you contend with?]
Feeling inadequate because I was tired and wanted to experience some kind of joy again in my daily life; terrified he would die after all we had been through; concern for my other children - even to let them out of my sight - let alone go on living a normal life!

[Has it changed your sense of self?]
Definitely. It feels like there is absolutely nothing, no piece, left for you to be you. While you know you need to come to a "new normal", you are kind of on "autopilot" to get through the day, waiting for something to change, rather than owning the change. It takes some time to pull yourself up, to own your own life again and there are not very many folks who are willing to be a friend enough to talk about it.  Folks seem to think that you are so fortunate to have your loved one survive, yet they do not see that you have lost something /someone significant in a significant way and have no outlet to grieve that loss. You feel selfish for feeling a loss when you can still hold the body of that person, but you so miss that person in the way they used to be and there is the ongoing need to care for the body of the person that has been left behind.  

[What do you like least about yourself in these circumstances?]
Feeling tired, feeling as if there is no closure, feeling impatient at times and upset with myself for all of these feelings.  Guided imagery - the Grief (please link & show cover) tape and the General Wellness (please link and show cover) ones especially - have been helpful, so I don't tear myself apart so badly!  When my cycle of diminished self worth begins, I do them more often. It does help tremendously - especially when I compare it to the intensity and length of these bouts prior to my discovering this tool.

[What do you like most about yourself in these circumstances?]
I haven't given up, no matter how challenging the past six years have been. I have set that example for my other children.  I keep researching, keep drawing on other resources to strengthen the rest of us as a family.

Interestingly, I think that my husband and I are a better couple, our family is stronger and better for our experience. We know resilience, tenacity and the value of one another on a daily, ongoing basis. We don't take much for granted! We just love one another and say the things we need and mean to say.  I am really glad for that gift.  It makes me realize that from even the most difficult of circumstances, God provides gifts that are so very rich, we have only to have the insight to see them for what they are. We have met so many wonderful people along our journey, and while I would never invite or wish this experience on anyone, I also am thankful for some of the personal growth opportunity we have had.

[What have you found helpful with this?]
During my son's months of hospitalization, I found exercise, counting my fruits and veggies and water on paper and reading daily inspirational (short) stories, articles, etc.  I also found that I had to get my rest, because I needed to prepare for when he could come home. Somehow caring for my own body, setting that example for my other children, who were looking to me for guidance more than ever before, both the younger and the older, gave me some control in a life that I seemed to have no control over!

After a few months at home, we decided that I had to have some time away, for errands, lunch with a friend, to just take a drive or a walk in nature - to be one with myself, so to speak. That made a significant difference for me - just a couple of hours once or twice a week that I could look forward to just for me - to revitalize and hear something in my head besides a timer for medicines, a ventilator or suctioning a trach! It was amazing the difference that made!  Even when the weather was bad, when I gave myself permission to take a bubble bath or to read a chapter in a fictional book - not about my son's injury, etc.- for a brief "vacation" away from the reality of this all, I was more energized, less hard on myself and a better caregiver to my son, not to mention a better mother to my other children.

Also, letting others provide meals for my family was so helpful - not having to worry about what was for dinner was such a stress reliever. I just got some veggies and fruits to have on hand so I wasn't always eating casseroles, but for my boys, it was great.

[What have I found makes things worse?]
BEING TIRED. NOT EATING WELL, NOT DRINKING MY WATER, NOT EXERCISING, LETTING THE WHOLE EXPERIENCE DRAIN ME SO MUCH THAT THERE WAS NOTHING ELSE LEFT FOR ME TO GIVE, LET ALONE KEEP FOR MYSELF!  Not taking a few minutes to do something, a craft, a call or visit with a friend, even a cup of tea that I enjoyed or a television program that was just for me for just a few minutes. I think having someone say to me you need to do this, you DESERVE to do this, would have helped so much.

The other thing that people don't realize is that with so many caregivers, especially family ones, the help all comes in the beginning and no one is following up down the road. We don't seem to understand that "survival" often means ongoing, life changing, lifestyle altering needs for a family. We bring food, we offer to drive kids to activities, we feel good about it and then we go on to the next thing. Meanwhile that wife, husband, mom, etc. is still there with the same ongoing needs, afraid to ask because people have given so much in the beginning and the wear and tear of that is often overwhelming. The sheer "ongoingness" of caregiving is understated and not well understood or appreciated.

Another issue that is difficult is the issue of people not knowing what to say to you, so saying nothing, or worse, turning away from you or avoiding you. They don't want to say the wrong thing or seeing you or the "changed" person you care for is uncomfortable and threatens their comfort zone, whether for themselves or their own loved ones. This is lonely and painful. It is another component of the loneliness a caregiver (especially a family one) experiences.

We also know that most likely the time will come when, after everything we have worked to help our son through, it is likely that his body will give out. Knowing that we are preparing for the eventual loss of the body of our son, the new person in that body that we have come to love, and the son we knew and have already lost will be gone, is a challenge. We work to help care for him, we love him in new ways, we miss loving him in old ways and in the back of our minds, we have to, somehow, prepare for the eventuality.

[Is there a daydream or a memory that you find nourishing or sustaining to turn to as you cope with this?]
I try to remember my son's deep laugh, even as a little boy. I visualize the things we loved to do together. I visualize us hugging, tickling, laughing and walking together as we used to. I visualize all of us around the Thanksgiving table, around the Christmas tree, on vacation. I visualize the places we loved to go together. I would visualize my son walking with me hand in hand, instead of in the wheelchair he came home in.

I also found classical music, which he and I had loved listening to from the time he was very young, quite soothing - for both of us. I also found great comfort during my time as a full-time caregiver taking "mental" walks through and to places I loved to go, but could not logistically. I would visualize myself doing the things that brought me joy and just were not possible at the time. Taking a mini-mental vacation, especially on the really tough days, made a huge difference.

Thanks for the opportunity to share. I hope some of this experience is helpful for others. You can post this with our names.  The idea of having our experience make a difference for others helps to bring greater meaning and purpose for our family to these last six and a half years.  Please use what I have written with our blessing and appreciation.

Glenn and Sherry Butcher, Shandra, Matthew and our son who was injured is Eric Norris.