Reprinted from my prior AFTD post
Though my beloved wife died from complications over two years ago now on October 10, 2019 (I mark the 10th of each month by lighting a candle for Maureen), I continue to read heartfelt posts and emails to me and engage so many caregivers locally in our support group. Many struggle with, “what do I do”; “am I doing enough or doing it right”; “does what I do even matter”. Some tell me they feel aimless – like somewhere along the way, they lost their purpose.
I hear them and am reminded of so many moments in my care for Maureen where I felt the same.
I would encourage any of you struggling with the day to day – look deep – this moment of sharing your FTD condition as it progresses or caring for your loved one may indeed be your purpose.
Don’t wait for the sunny days to find it. Your purpose is often amidst the rain. You might find happiness in the knowledge that you are sharing milestones in your own progression with this disease or realize your own privilege in caring for your loved one. I know it can feel overwhelming, so please try to make it your passion, and let that fill you up.
Understand that the work you did, or are doing now, for, and with, your loved one MATTERS. When you think you are failing, know that your efforts are noteworthy, substantial, and yes even epoch.
I look back and think on this often and feel my purpose changed (and still changes) as I suspect many of yours did and still does.
My purpose was to be Maureen’s husband and to try and be the best one that I could. I didn’t know it, but my purpose would later be to care for Maureen as she battled FTD and to help her find moments of joy during that time – to make her feel loved the rest of her life (play in your mind Bob Dylan’s “Make You Feel My Love”).
My purpose now is to be the steward of her memory – the best that I can. I released her book last April (please see our products tab to get your copy) so that was a start.
I share her story as often as I can with anyone I can. I discovered another person recently that was told their loved one has FTD – just by me opening up about Maureen. This colleague fell to tears and told me she got the diagnosis 2 weeks prior that her husband (whom I’ve only met a couple times) has behavioral FTD. She kept it in but felt comfortable now letting it out to me.
I co-facilitate a much-needed local caregiver support group as a volunteer for AFTD and receive people reaching out for help every month. Maureen died 3 months into me starting that work, but I still do it now in her memory. I am happy to donate that time and resources and our stories.
I have her bench up at Pittock Mansion and watch visitors notice the flowers I leave and read her plaque and smile and hold each other closer. I was asked recently to be on the mansion’s Board of Directors, so we’ll see where that goes.
It was suggested to me by a friend to stop posting memories and to instead post something positive about my present – to appreciate life as it is. The past shaped by present, so I bring up Maureen unapologetically. I DO appreciate life as it is – my purpose keeps evolving because of Maureen and all that she was, and is, in my life. FTD took her too early, but I still keep her memory alive – what a beautiful purpose.
Grab ahold of yours. Please take care.