Life continues to be a roller coaster, but Mike is still with us. We were able to get away for a couple of nights at the beach over spring break. We mostly stayed in the hotel room, but the change of scenery was very nice. We did go down and play in the sand for a bit one day. The sights, smell and sound of the ocean soothe my soul.
And some cell phone photos since that is how I capture the moments usually.
It’s still hard to give updates because everything besides today and this moment feel like a blur. Yesterday Mike had a lot of confusion and was asking if he works and if he’s still in the military. There are a lot of random things he asks about and he realizes that he’s confused right now, so that is hard for me. I hate to see him anxious or stressed. He really hasn’t had a good day in awhile where he stayed out of bed, showered, ate and still had energy. It seems to be a constant cycle of trying to find energy and brain power to do simple things. This is why getting away to the beach was perfect. We had a change of scenery without him even having to get out of bed if he didn’t feel like it.
He has been on hospice for 3 months. In that time he has lost 40 lbs. He sleeps a lot and when he is awake he paces around the house anxiously. I guess its called “Wandering” much like what dementia patients do. The bright spots in his day are “his babies.” He’s always asks “Where’s my big girl?” “And my other big girl?” “And my boy?”
He’s doing well though overall. The fact that he still gets out of bed, eats, talks, even leaves the house on occasion to ride with on an errand…that’s not something I take for granted. It’s not all rainbows and butterflies. There’s confusion, headaches, anxiety, and tears. But it’s better than nothing. With him being so young and healthy, he’s proved to be pretty unpredictable. Don’t get me wrong, I’m thankful for every moment…but I will be honest and tell you that coming up on a three year anniversary of the onset of all of this makes me look back with a lot of sadness. Its been a long hard road. We have lost him in slow motion this past three years. I always try to focus on the positive and remain thankful for what is. But its been full of sorrow, grief, and just plain old rough days. My life has changed and has been at a stand still. I cherish the moments because one day I will miss even the worst days. But I’d be lying if I said it wasn’t hard. It has felt almost impossible some days.
Mothers Day three years ago was the noticeable beginning of the roller coaster of this journey, even though his actual diagnosis was in June. We are coming up on his three year milestone.