Thank you for your heartfelt post and sharing your journey. I too am approaching 10 years with the decline of my husband, although the first two were spent in frustration wondering “ what the heck is going on?” , without any real diagnosis - I think we both were in denial. I too am finding that I am more at peace with the situation in general as time has marched on. I used to get so sad when I would see other couples, many much older than I, having engaged, fun conversations in restaurants, planning activities together, while I am sitting with my dear spouse who struggles with the most basic conversation and activity. The Lewy Body dementia with Parkinson’s has impacted both mental and physical aspects so his mobility is limited, his voice is thready and hard to understand at times. As it has become more and more challenging for us to go places our world has gotten smaller. It is is easier and more beneficial to enjoy the simple things at home together, and when we do go out, I no longer feel the pain I did at seeing other couples living what appears to me to be “full and happy lives”. I can just appreciate that they have that time together and I pray that they know how blessed they are.
Overall, my depression is less than it was in the early years about our situation, even as the situation has slowly become much worse. I guess that is the peace of acceptance? I do find that I want to find some kind of balance, where I take some time and have freedom to do things that I would like to do in my life while I still can, and also be here and be fully present for him. I know I am missing out on many of the things that I would choose to do if he didn’t have this horrible health situation. His decline is so slow, I don’t want to “wait” to live MY life and then find out that I waited to long, and am unable to physically or mentally do the things that I wanted to do. Trying to do trips with him now, is frankly more work than it is worth for me. Any type of air travel would be arduous and stressful. I don’t even know if he would be able to enjoy it, it would also be very tiring for him, and let’s be honest, he wouldn’t remember anything from the trip, so what would be the point? I also wonder if it is easier for me to take advantage of this time, before he gets worse, for me to do some trips and activities on my own. As he declines, it will only get harder for me to be able to get time away and find respite care for him. It’s hard to know what to do and how to balance my own self-care and life goals with his needs. I don’t know if anyone has all the answers, but if you do, please let me know!