Things were piling up on me again, but now that Vince is showered, had breakfast, dishes are done, and laundry is in washer, I can exhale. I am going to take a friend to lunch today for her birthday, and I am very much looking forward to sitting in a quiet restaurant, being served yummy food, and talking to a friend.
The aide will give Vince his lunch—since it has to be pureed, I try to make double servings of dinner, so for lunch the following day, the aide can just heat it up. So today for lunch Vince is getting turkey chili with black beans (made by Giant Food, not me), pureed with rice, fresh asparagus and white kidney beans; a side of pureed beets.
Okay, so what about the fish face in my title? Last night, we had pretty awful (let me call it) incontinence "follies" on the way to bed. Aide is here to help, but it takes two—it's a mess. So extra stress there. This morning we had the medication problems. First one went fine in the pureed tropical fruit. Second med, Vince's mouth clamps up, and his lips pucker out like a fish; this means he is stuck and will neither swallow nor spit it out. I look at that stony face of his with no emotion and feel that he is just taunting me. I know that's not true; I'm sure he loves me, but FXTAS has taken all the emotion out of him. It has been like this for YEARS. At this point, as I feel the stress rising, I leave him in God's capable hands, and go get my coffee. Vince eventually swallows what's in his mouth, only to get stuck again on the next mouthful. This is where I give up, get out the syringe, and suction it out because the aide is here and time to get him out of bed.
One of the most awful things about FXTAS over the years is the fact that Vince can't communicate. He used to say that he loved me if he said anything (YAY!), but I haven't even heard that for months. And has he ever said "thank-you" to me?? I don't think so, unless it was too long ago for me to remember.
Thank God for God is what I always say, because I sit down to read my morning prayers (new ones every day from the Magnificat prayerbook), and God speaks to me and comforts me through these prayers. So often, they relate to what I am suffering through. It is a miracle. Vince is not and will not be there for me, but God is and always will be. Again, thank God for God!
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As a caregiver myself, although my wife is not nearly in the condition of Vince, I know that a simple "thank you" or "I love you" can energize a caregiver for days. To not have that is awful. I am glad that you have God to take care of both you and Vince when you are not able.
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