Part of my experience becoming a caregiver was adjusting to constant change. Learning how to adapt to new roles and environments. Prior to Mike’s diagnosis, my only experience with nursing homes was visiting my Grandpa and my Memere on weekends. By the time they were admitted to their skilled nursing facilities, they had been widowed and were in their seventies. They were surrounded by other elderly people in similar circumstances. The idea of looking for a nursing home placement for my 31 year old husband was more foreign to me than buying real estate on the moon.
And yet, there I found myself, signing papers to ensure a spot for Mike on the secure unit of a neuro rehabilitation center (NRC). The moon would have felt like a safer place to land.
I had so many emotions that day. Anxiety and fear. Guilt and shame. Desperation and sorrow. I was all at once heartbroken and thankful. Unable to safely care for Mike, Noah and Dad all under one roof, I needed the help of the NRC to provide Mike with 24/7 care. I needed them to do what I couldn’t. While they were keeping him safe and clean and fed, I needed them to carry out that care with compassion, respect and kindness. But, how could I make that happen? With so many needy patients, how could I make Mike stand out as important?
I decided I would need a plan. A plan to make the staff fall in love with Mike. To fall in love with our family. I was determined that if they knew us, if they saw us as a family, then they would want to give Mike not only the care that was required, but the TLC that he deserved.
I hung pictures on the walls, large colorful engaging photos of Noah. Of Mike and Noah together. Of us as a family. I created a poster “Fun Facts About Mike” that listed his academic accolades, his love of Starbucks & Harry Potter and the town where he was born. Whenever I had the chance, I told our love story. I made a point of getting to know each staff member and I listened carefully to the opinions of the nurses, aids and activities staff. I wondered, is it working?
I thought so. The staff seemed to pay such close attention to him. He responded with big smiles and joyful noises when people said hello to him in the hall. They asked me to bring in moisturizing body wash when his skin got dry and made suggestions for toys he might like.
In January of 2009, Mike was admitted to the hospital with a fever due to aspiration pneumonia. FTD had taken away his ability to speak, walk, hold himself upright in a chair and even properly swallow his own saliva. His body was tired. So was my heart. We made plans to start hospice and I was comforted to know that he could receive hospice services at the NRC.
I followed Mike’s ambulance back to the NRC after a long emotional day. As I passed through the front lobby the receptionist let me know that they had moved Mike’s room. This didn’t come as a surprise, I thought that hospice patients might be in a different wing. But then I thought of the photos on the walls. Over sixty 12×18 images that would need to be removed and rehung in the new room. I walked down the hall feeling defeated and tried to encourage myself that it wouldn’t be too difficult a task.
When I walked onto the secure unit, I saw Mike’s room. Directly across from the nurses’s station and immediately recognizable because of the photos. Each and every poster had been carefully hung around the room. The pillowcase with Noah’s sleepy infant face. Mike’s iPod player and lullaby music. Stuffed animals and Harry Potter books. All in place. Ready to welcome him home.
It turned out that the heroic men and women who staffed the NRC were the real secret keepers. The simple acts of kindness and care bestowed upon Mike and our family by the NRC staff revealed their love and dedication to their residents. Today, my memories of their extraordinary love in that ordinary place evokes powerful emotions. I feel privileged to know their secret.