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Struggling with profound sense of sadness: How do you cope?
Caregivers: Dementia | Last Active: 54 minutes ago | Replies (15)Comment receiving replies
@laneywj -we seem to be on a parallel path, you and I. My husband just had approval to start Lequembi, and once the neurology department gets done negotiating with insurance, we should be ready for him to start infusions also. I have no tips…just trying to adjust my sails on a daily basis, and there are so many wonderfully helpful people here. I don’t comment often, as I feel I have little to share that is helpful, but I am very grateful for you all, and to have found Mayo Clinic Connect.
Replies to "@laneywj -we seem to be on a parallel path, you and I. My husband just had..."
@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.
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@2me check with your neurologist. Ours in south florida has a GUIDE program set of people in his clinic that follow up after the patient has their lequembe infusions. They offer, caregiving resources if you and when you need them, a nurse available in their program if you have questions, etc. I'm not sure your neurologist has that, but check on it. It's helpful just knowing someone is there if you need them. My husband is on lequembe too. His 19th infusion. Best, Karla