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Assisted Living and DNR (Do Not Resuscitate)
Caregivers | Last Active: Mar 24, 2022 | Replies (62)Comment receiving replies
@ess77, I cannot imagine a more valiant warrior fighting the many alligators you and your son have faced, Elizabeth. It is both heartwrenching that you both have struggled so long without receiving the treatments that would enhance your son's life and heartwarming that you finally have hope from Mayo Clinic!
You have to be exhausted from your efforts, the grief for your son from his loss of career and chronic pain. The physical and emotional toll for you both deeply touches all of us who have served as primary caregivers. I am celebrating that he will begin receiving in-home help that is so needed and will give you some relief as well. "Just being there" for him is sometimes the best gift one can give another. I'd say he was a very lucky fella indeed to have you at his side!
Please keep us posted on how treatments go for both of you. May hope, peace and less stress in each day find you giving yourself more time for restorative healing as well. It will take you time to relax from the hypervigilence required over such a long period of time so be very good to yourself and liberal with self-care now that more assistance is on the way.
Eager to hear how the new bed works for you!
Replies to "@ess77, I cannot imagine a more valiant warrior fighting the many alligators you and your son..."
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Hello, fiesty76. You are such a joy. Your thoughts and prayers have buoyed me and given me comfort in the knowledge that I'm really not alone. We're really not alone. I cannot explain to you what a remarkable difference you and the others from Connect have made in my life. This last 6 months or so have been troubling, frightening, challenging. I was running out of hope for Rob's future. I am indeed exhausted from these years, it's taken it's toll, but as I've found Mayo and Mayo has brought so much healing within my body and spirit, I've found new strength from within. I have hope. We are seeing the beginning of a breakthrough in his hell.....
He saw the Mayo dystonia specialist, a leader in this field.....and is now officially his patient. He is scheduling Rob with other departments and specialties for diagnoses, treatment plan. He will take over his botox injections, the one treatment that gives him some relief. Now he will get the treatment from the best!
How wonderful is this!
I was watching my son withdraw into himself and fearful I was losing him. I've spent several days with him helping him understand the doctors with whom he'll be working are special, care and tops in the fields. They can be trusted. Today, I began to actually believe this is happening. Hope has arrived.
Thank you for giving your gifts to me. The support I felt from you and the others has given me strength to stay strong and calm. I can almost breath. Almost hope.
Blessings to you, from me.
And, thank you.
elizabeth