I've had some amazing caregivers over the course of my ALS journey. In fact, I've had some amazing friends who acted in place of caregivers, in my tumultuous early days, when I lost mobility and emotional degradation (unbeknownst to me at the time).
Marcie comes to mind. She dropped everything to care for me, despite the disadvantage of not having any real idea of what ALS was. As I deteriorated, my hands failing, using a cane, and becoming unable to dress myself, she prepared food and babysat me through the night. (My husband worked the graveyard shift.) If you saw the movie, "You're Not You", and remember the bathroom scene with Hilary Swank and her new caregiver, played by Emily Rossum, awkwardly maneuvering urination and wiping, then you witnessed Marcie and I. She was great but I focused and built upon perceived negatives (my motor neurons NOT at work). I severed our relationship due to exaggerated fear and anger. At the time, I thought I was astute and justified, citing all of her shortcomings (according to me). I was wrong.
Judy, Judy, Judy! She was recovery running buddy for seven years.We always meant to ride our motorcycles together but life got in the way. It seemed we'd have plenty of time, but time ran out. I regret that. Judy and I ran into each other constantly only living two miles apart. We got to bare our souls to each other and loved what we saw anyway. I admired her ability to be tough enough to take care of herself, yet remain soft enough to be vulnerable and open to love. She also shares my warped sense of humor and love of Starbuck's and bikes.
As I progressed toward becoming paralyzed, she was steadfast in her support of me. She held my arm to steady me walking with a cane, then a rolling walker, then an ordinary walker. She walked into my house, woke me up, helped me into my swimsuit, and drove us to water aerobics, to make it possible for me to attend. We'd dance and exercise with abandon. At first competing, then she would assist me and make sure I didn't drown myself. After a session, she'd shower me and change me into street clothes and take me back home or out for coffee or chai. She showed me the meaning of true friendship and love.
When my husband found an affordable wheelchair van, 500 miles south in California, she dropped everything to help us pick it up. I treasure our little side trip to the tiny community of Aurora, Oregon, where we wandered and photographed to our heart's content. We discovered red, ripe, juicy raspberries and were invited to eat our fill. Mmmmmmmmmm. She continues to visit and love on me. She's a rarity.
Her housemate, my long time friend, John, is a professional caregiver. He has a surprising gift in his ability to care for the sick and dying. I say "surprising" because many years ago when I met John, I was afraid of him. It's not news to him how scary angry he was. But John mellowed and came into his own over time. His daughter, Jennifer, and my daughter, Jennifer, played together. And, eventually, he helped me when I was getting debilitated with the ALS. He became such a trusted friend and caregiver to me that he toileted me when I needed it. A big hurdle for me...allowing a man to help with such an intimate need.
Another special person is my friend, Carol, whom I met at water aerobics. Despite having multiple sclerosis (MS), she opened her heart and home to me And became a defacto caregiver. Carol gave my husband respite when she stepped in and allowed me to spend nights with her. I loved spending time with her. She's so calm and calming and she's solution-oriented. When my husband tried to force me into a nursing home, she was my caregiver up until...I broke her.
Because of the MS, Carol needs plenty of rest or she can suffer relapse of symptoms. Taking care of me was way too much for her and her poor body was too heavily taxed preparing food, dressing and toileting me, and dealing with my wildly-fluctuating grief and anger. Her heart was so in the right place! I love her to pieces!
Kristin and her itty bitty doggie, Little Guy, took care of me and saved my life. I came down with a urinary tract infection which wilted me before her very eyes, she contacted the hospital with my symptoms and was told to rush me in right away. She saved me. An infection in my ALS-affected body is a serious deal now. And it explained my involuntary urine releases that I was attributing to ALS muscle loss.
Joseph was a real surprise. We were acquaintances but one day after learning of my ALS diagnosis, he asked my husband if he could take me to a local happening to give him a break. My husband agreed and Joseph and I became running buddies. Do not even think there was anything untoward going on. There wasn't. The local happening was something my husband and his wife weren't interested in attending. And we were never alone, always with a group of friends.
Thanks to him and my long-time friend, Eric, I found my last church home before going to a nursing home, Hope Fellowship. A friend in need, he installed my woodstove, another procrastinated job of my husband, 'and he modified my bed following an incident where I wedged my head between the bed and bedside table. I was powerless to lift my body nor head up to save my own miserable life!
Friends in need saved my sanity, loving me through that tough and ugly time, without them, my psyche would surely have split. For their tolerance, I am truly grateful. Thank you.
This list is, by no means, complete.
Marcie comes to mind. She dropped everything to care for me, despite the disadvantage of not having any real idea of what ALS was. As I deteriorated, my hands failing, using a cane, and becoming unable to dress myself, she prepared food and babysat me through the night. (My husband worked the graveyard shift.) If you saw the movie, "You're Not You", and remember the bathroom scene with Hilary Swank and her new caregiver, played by Emily Rossum, awkwardly maneuvering urination and wiping, then you witnessed Marcie and I. She was great but I focused and built upon perceived negatives (my motor neurons NOT at work). I severed our relationship due to exaggerated fear and anger. At the time, I thought I was astute and justified, citing all of her shortcomings (according to me). I was wrong.
Judy, Judy, Judy! She was recovery running buddy for seven years.We always meant to ride our motorcycles together but life got in the way. It seemed we'd have plenty of time, but time ran out. I regret that. Judy and I ran into each other constantly only living two miles apart. We got to bare our souls to each other and loved what we saw anyway. I admired her ability to be tough enough to take care of herself, yet remain soft enough to be vulnerable and open to love. She also shares my warped sense of humor and love of Starbuck's and bikes.
As I progressed toward becoming paralyzed, she was steadfast in her support of me. She held my arm to steady me walking with a cane, then a rolling walker, then an ordinary walker. She walked into my house, woke me up, helped me into my swimsuit, and drove us to water aerobics, to make it possible for me to attend. We'd dance and exercise with abandon. At first competing, then she would assist me and make sure I didn't drown myself. After a session, she'd shower me and change me into street clothes and take me back home or out for coffee or chai. She showed me the meaning of true friendship and love.
When my husband found an affordable wheelchair van, 500 miles south in California, she dropped everything to help us pick it up. I treasure our little side trip to the tiny community of Aurora, Oregon, where we wandered and photographed to our heart's content. We discovered red, ripe, juicy raspberries and were invited to eat our fill. Mmmmmmmmmm. She continues to visit and love on me. She's a rarity.
Her housemate, my long time friend, John, is a professional caregiver. He has a surprising gift in his ability to care for the sick and dying. I say "surprising" because many years ago when I met John, I was afraid of him. It's not news to him how scary angry he was. But John mellowed and came into his own over time. His daughter, Jennifer, and my daughter, Jennifer, played together. And, eventually, he helped me when I was getting debilitated with the ALS. He became such a trusted friend and caregiver to me that he toileted me when I needed it. A big hurdle for me...allowing a man to help with such an intimate need.
Another special person is my friend, Carol, whom I met at water aerobics. Despite having multiple sclerosis (MS), she opened her heart and home to me And became a defacto caregiver. Carol gave my husband respite when she stepped in and allowed me to spend nights with her. I loved spending time with her. She's so calm and calming and she's solution-oriented. When my husband tried to force me into a nursing home, she was my caregiver up until...I broke her.
Because of the MS, Carol needs plenty of rest or she can suffer relapse of symptoms. Taking care of me was way too much for her and her poor body was too heavily taxed preparing food, dressing and toileting me, and dealing with my wildly-fluctuating grief and anger. Her heart was so in the right place! I love her to pieces!
Kristin and her itty bitty doggie, Little Guy, took care of me and saved my life. I came down with a urinary tract infection which wilted me before her very eyes, she contacted the hospital with my symptoms and was told to rush me in right away. She saved me. An infection in my ALS-affected body is a serious deal now. And it explained my involuntary urine releases that I was attributing to ALS muscle loss.
Joseph was a real surprise. We were acquaintances but one day after learning of my ALS diagnosis, he asked my husband if he could take me to a local happening to give him a break. My husband agreed and Joseph and I became running buddies. Do not even think there was anything untoward going on. There wasn't. The local happening was something my husband and his wife weren't interested in attending. And we were never alone, always with a group of friends.
Thanks to him and my long-time friend, Eric, I found my last church home before going to a nursing home, Hope Fellowship. A friend in need, he installed my woodstove, another procrastinated job of my husband, 'and he modified my bed following an incident where I wedged my head between the bed and bedside table. I was powerless to lift my body nor head up to save my own miserable life!
Friends in need saved my sanity, loving me through that tough and ugly time, without them, my psyche would surely have split. For their tolerance, I am truly grateful. Thank you.
This list is, by no means, complete.
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