Caregiving for Your Child in the Rare Disease World

This morning I had an interview with a student going to school for community health who is focused on caregiving. It is something that is near and dear to my heart - having been one of the caretakers with both my maternal grandparents until their last day and now as my role caring for our son with Addison's Disease and as Executive Director of Adrenal Insufficiency United where we support caregivers, as well as those affected with adrenal insufficiency. It gave my a chance to reflect on my life as a caregiver and a voice to speak out about a very real difference between my caregiving situations - taking care of an elderly family member with a progressive age-related illness versus taking care of your child with life threatening chronic illness.

I will never take away from the value of taking care of parents, grandparents or other aging family members. They have given so much of their lives, in many cases, to providing for the ones who are now caring for them - not just financially, but providing enriching experiences throughout life, teaching life skills purposefully or by living them out, and by literally giving us life. Spending time with them in that caregiving role is an opportunity to give back, but also an opportunity to know them on another level - there is a deepness that comes from caring for someone in those final months, weeks and days, that cannot be explained. I treasure those moments I had with my grandparents and most importantly, I treasured them while they were happening - not taking it for granted or grumbling for the change in roles. It was a blessing to be trusted in caring for these people who were so very important to me.

This is all very different from what I experience in the caregiving role as a parent. And as I gave this interview, I explained how difficult it was to have given birth to a healthy boy, had him growing fairly typically for 10-11 years and then slowly getting sick with little or no explanation. We were told after the Addison's Disease diagnosis that it was typical to go through a time of grief - grieving what could have been, the dreams we had had. And that was very true, but that grief was compounded many times over watching him grieve. I do not think that anything I can say can draw the picture of the emotions felt watching your child go through that sense of grief at such a young age. So many dreams were taken from him so suddenly through no fault of his own. As a parent watching him grieve coupled with my own sense of loss was a double whammy and something I still struggle with to this day in moments.

The other big difference in the caretaking situations is that in the case of caring for my grandparents, it was keeping them comfortable and peaceful and bringing as much joy as possible to those final times. There were times that I brought our little puggle to the nursing home to visit my grandma - and what joy that was to her!! She made little jobs for herself that had to do with keeping the grounds beautiful - she would take little sewing scissors outside and clip bushes and flowers - again it brought joy. One of my favorite memories in my grandfathers last days was bringing in music from their younger years and he and my grandmother holding hands listening (and at some level each remembering). While there is sadness and definitely hard times in caregiving it is such an honor to be part of celebrating a long life lived.

When caregiving for your own child, it is such a balancing act. You care and do not want them to suffer - and of course you want them to feel joy. But there are times when you need to make decisions that are really hard and not what the child would choose but what you know is better of the child in the long run. Feelings of frustration, anger and fear come - not just at the situation and systems, but often times with each other. There is the normal push and pull as we let our children "leave the nest". But there is a heightened sense of that push and pull - wanting to push your child towards independence, freedom, and living his own best life and at the same time want to pull them closer to the safety that they have known - with the doctors you have chosen, medical decisions you have made.

As I write this I see the similarity that in both caregiving situations it is about preparing to let go. With my grandparents it was letting them go into eternity with peace. And for my son it is letting him go out into the world with the knowledge that I have hopefully given him and know that I am here for guidance. Both are heart-wrenching experiences for everyone involved. I just want to bring light to those of us caregiving for our children because I feel it is not thought about as a traditional caregiver role yet so many that I know are living that life. I see you.

If you are a caregiver, please let me know if you relate to any of this.