This disease it such a rollercoaster— Im so happy to see that some of you are at places in it where you are able to think about and write beautiful and poetic things about the journey. — thats really really nice. I wholeheartedly applaud that thats your place today. be grateful for every second of peace— may it refresh you and reinvigorate you to face whatever tomorrow may bring. each day in our situation is a brand new scenario. A brand new level of heartbreak and chaos because our medical system has so far ‘completely’ failed us—
by shaming the caregiver ‘in front’ of the person for putting them through an unnecessary appointment— by telling the one who is cognitively impaired that there is NO reason to BE tested because we should be able to handle this at home together with good communication up until the time the person needs to go into long term care—telling us BOTH that there are NO medicines that will slow the progression—there is nothing that can be done— and that the reality is, Neurologists just simply dont want to tell you that they cant help you…so they will offer medicines which actually do nothing for the disease. Here we are, trying to get help—and he says all of that— and then directly asks the one who thinks hes fine and absolutely is NOT fine—yes, the one “without” cognition, “do YOU want to be tested? you dont need to be— but we will do it if YOU want, even tho in my opinion, its a waste of time. I'm speechless. We leave- i’m deflated- alone- nowhere to turn, no kind of hope for any help- trying to care for an impaired husband whose decisions and thinking ability are so poor now— that he can hardly be left alone.
thats what this disease
IS for us today. I really AM glad to know that maybe some peaceful days might come in the future—where we feel such gratitude and solace as you….thats a gift to be treasured for a certainty for you guys— im happy for you and sending many hugs your way .