Stories from Caregivers: Mona from FLORIDA
FL
Mona
FROM FLORIDA
Imagine a world where even the smallest step is one of the hardest things you will do in a day. Imagine a world where everything except your brain is no longer working. Imagine a world where you are a prisoner in your own body. Imagine that world, with NO cure. Imagine YOU making a significant difference in the life of someone facing that reality. The heart-wrenching story you are about to read is highly emotional, yet it is also a tale of courage and bravery. Daniel, my beloved father and devoted husband, has been struck down in the prime of his life, with a very rare and fatal brain disorder, MSA-C (Multiple Systems Atrophy). He was diagnosed just 3 years ago, but nothing could have prepared us for how rapidly this would progress. Individuals who develop this devastating disorder feel perfectly fine one day, and then suddenly are hit with a cascade of catastrophic symptoms, causing slowness of movement, muscle rigidity, slurred speech, loss of balance, urinary complications, orthostatic hypotension, vision changes, severe sleep apnea to name just a few. To watch a dearly beloved father, husband and friend slowly lose their independence, their ability to stand on their own two feet, their ability to speak and communicate, besides all of the automatic functions one takes for granted, such as swallowing, breathing, bladder and bowel control, is beyond shattering. Just 6 months ago, Daniel was still independent and strong, going out every morning for his daily walk. However, in mid Jan. 2014, he took a bad fall and was rushed by ambulance to the hospital. Since then, the rate of decline has been alarming. He has been in ER four additional times and in a rehabilitation facility twice. He needs constant physical & occupational rehabilitation, speech and swallowing therapy, special supplements, and with each decline - new medical equipment to help make life safer & easier. Each and every month there is another emergency to try and contain, with its myriad of costs. Daniel now needs assistance to walk and requires the use of a walker full time. His neurologist ordered a scooter to help him get around easier and protect him from further falls. Seven months later and we are still fighting with the insurance company, who refuses to cover the cost. He can no longer climb steps. Several of his automatic systems are now in distress. He is losing his ability to communicate and speak. My parents do not have the financial wherewithal to face this alone. The financial burden to families of persons diagnosed with MSA is exceedingly high. Entire savings can be quickly exhausted because of the extraordinary costs involved in the care of these patients. Daniele's small pension, doesn't come close to meeting these expenses, especially with a son still in college. I am trying with all my heart to make my Dad's remaining time more peaceful and allow him to enjoy some quality of life, spending precious time with his family and doing the things he is still capable of doing, until that phase comes when he will most likely be bedridden and require more assistance than any one person could humanly provide. We need to create a space where he can, at the very least, be supported in a loving way at home. There are very few safety nets or places to turn to for help. Those like my mom, who become full time caretakers, working tirelessly 24/7, receive no recognition for the vital role they play. There is no vacation or break from this. The toll it takes on one's health and energy is not to be underestimated. And something like this could happen or strike anyone of us, in the blink of an eye. My mom can no longer handle everything alone. Please, I ask you to find it in your hearts to support Daniel's fight in this terrifying journey and allow him to face all that is to come, with some degree of dignity. No one should have to live under the constant stress we face on a daily basis. It is all encompassing: physical, emotional, mental and financial.
