This is my first official Reeve Connect discussion, and I'm not really sure I'm doing it correctly. However, someone will probably clue me in if I'm not. I write a regular caregiver blog for Reeve, and in a recent blogpost, I expected some commentary. I'm generally surprised by what gets a lot of shares or likes and what doesn't. So this was a passage from the blog where was very honest about how I'm feeling at the end of long winter with my patience in caregiving between working full time, being a mom and wife, and pursuing my own secondary career as a writer.
"For example under the home page for relationships, there was this great post called “Managing your guilt about everything and anything” by Dr. Dan Gottlieb. I read it once and then a second time, and then I read all of the comments below the thread, and when I got to the one by WAGS, I took a really deep breath. Geoff has been traveling for two weeks in Bulgaria for work, and as much as I love and miss him, I do NOT miss taking care of him. There I said it. I said it out loud, and I feel pretty awful for saying it loud. But his travel allowed me to take time for me and not be a crazy maniac in the morning yelling at my kids to get ready before school. I’m wondering if I should put that in the Reeve Connect under that thread. Or, does that just make me look like a terrible person? It may to some, but I’m guessing that is a very real feeling of guilt for a lot of people like me. I recently shared Dr. Gottlieb’s post with a friend who cared for a family member for a long time, and that person has since passed away. He feels guilty for having time again and being able to choose what to do at that time. But that thread helped him too. That thread in Reeve Connect validated feelings which needed validation.
I can’t wait for Geoff to come home. But it’s also okay that I got to have some time without him. Thank you WAGS! Thank you, Dr. Gottlieb! Thank you to everyone else who has begun to weigh in at Reeve Connect. Thank you Reeve Community for developing this forum, and thank you to our own community for our endless support."
Since this is a discussion thread, I should pose a question, right? How do we articulate to others in caregiving capacity that the spectrum of emotion is natural? I had always been very independent and about 3 years ago I stopped saying, "Yes, we are all set, but thank you" whenever someone offered help. How do you let others take care of you from time to time?
We've all heard the jokes about a mother being a cook, a maid, a butler, a nurse, a chauffeur, and much more. And being a mother is after all being a caregiver, we give our kids the care they need and want. But becoming the caregiver of my child after he became paralyzed kind-of striped me of some of the 'normal, everyday' mommy stuff; it upped the everyday stuff to a whole new level.
Those milestones he had struggled to achieve throughout his life, first steps, going potty, dressing himself, brushing his teeth, even the simple task of getting in and out of bed - all those proud moments of independence are now gone. And, those everyday tasks have now been brought back, once again placed front and center in our lives. Only now, he's not an infant nor a toddler - he's a teenager.
I'm no longer the mom that gets to say, hurry up, get up, you're going to be late - instead I am now the mom-caregiver that he needs to help him begin his morning (two hours earlier than we did before). He requires my help to remove his night-time braces, PJs and sit him up, cath him and transfer him from the bed into his chair, dress him, put on his AFOs, and brush his teeth. He no longer gets his books ready for school, I get them ready and into his backpack the night before.
As both mother and caregiver I wonder, am I doing it right, am I doing enough? Am I doing to much for him? Am I helping or hindering his progress?
Sometimes being mom & caregiver are exactly the same, but at other times the mom part of me has to step aside and let the caregiver take control, such as pushing him through the pain of his physical therapy, making him go into the stander he hates (the mom in me wants to give him and not make him do it, but the caregiver knows it has to be done). At those times the mom in me whispers words of comfort and encouragement, while the caregiver in me, while remaining encouraging must also be firm.
Some days I feel like I have been robbed of just being his mom.
Then I am harshly reminded he has been robbed of just being a teen and has been forced back into an almost child-like existence.
She is a prominent figure in the WAGS of SCI community and has a keen interest in Accessible Design/Interior Design for homes. She recently started her own company "Lavender Accessible Design" that helps people renovate and design their spaces to suit a wheelchair, with style! She posts content daily to her 14,000+ followers about her and her husband's home in Indiana
Here's a photo of her and her husband Derek, and their cute dog Barkus
Leanne is doing an Instagram takeover for WAGS of SCI next week (Wednesday June 26th), and is also appearing in for our next Reeve Instagram takeover on Monday June 24th to talk about all things Accessible Design.
We will be promoting this over our social media channels but we wanted to give all of you first dibs on asking Accessible Design related questions that we can relay to her to answer!
Please comment below with anything and everything Accessible home related and she will answer your questions live on Instagram next week!
Brooke and Elena