Struggling with profound sense of sadness: How do you cope?

@kjc48 Thank you, Karla, I appreciate your many helpful replies to me and to others in this group! That sounds like a wonderful program at your FL clinic. We used to spend our winters in FL but now are up north, closer to family. I feel our neurologist’s office offers a lot of support, especially through the social worker, and others in the office. Best to you and your husband !

I love the idea of being closer to family. we're considering the same. Best to you too! in our journey here as caregivers. Karla

@2me, I’m sorry we’re on the same path, not a path we’d sign up for if given the chance. I do love that this forum connects us to others who are also navigating this journey. It’s nice to be able to read posts and in honesty to know you’re not alone.
My husband is to start on the IV infusions at the end of the month. I feel lucky that his neurologist has been pretty proactive with his care, things moving quickly since his diagnosis. Trying to change my mindset back to being my positive self, limiting myself from the 0-60 thinking..one day at a time.

@laneywj -exactly, THIS! So many families are on this path…not what any of us expected, and no manual. I am ever-so-grateful for you and others, and to Mayo Clinic for this group! I’m feeling confident in our Neurology office and trying to take one day at a time. As with you, I’m typically a “glass half-full” kind of person. Please keep posting on here, and feel free to send a message, should you wish to! Best to you!

@laneywj I saw this thread this morning on Mayo Connect and felt I should answer it again, because I feel your pain, and that of every caregiver. This week, for me, wasn't the best in dealing with a missed MCI infusion that we later scrambled to get to, a doctor's call that I don't even remember, insurance, remodel, and financial paperwork, that creates havoc in trying to figure it all out alone, while my husband's new childlike escapade is going out and "looking for golf balls." He's even got me doing, it so I keep thinking about the @memoriestomoments post about creating even the smallest moments of joy, to help change our worry, fear, and guide us in a way, that we can seek some inner calm from the uncertainty and chaos every day. I try to find the good things; I'm thankful my husband is still mobile, so I find the "together time" joy that we've now made a competition, on who can find the most stray balls in an area where we are renting, while remodeling. In between searching, we even watched the "The Devil Wears Prada" last night together, he never wanted to watch movies! How I navigate this new journey: we just do, we wake up, try to create some morning inner calm, navigate in nature, if you live on water, reflect in its stillness on a calm sunny day, and find the joy I'm sure you do in your dogs that I find in my recipes and cooking. I made a delicious "Jennie O" freezer to oven turkey breast the other day, with wild rice and cranberries, and roasted honey carrots. Who knew? And easy too. Surround yourself with only kind loving people - no drama or chaos or negative thinkers. And when you do get sad or depressed, seek out God, pray, ask him to walk with you today, and every day, and feel his loving presence. We are not alone.
Best, Karla