The photos I display on every surface document Burt’s days with Lewy Body. Everywhere, there are pictures of him as the disease progressed and some of us at ballgames or on walks by the river. It’s a 10 to 1ratio. What strikes me in the pictures I snapped during our journey is the joy IContinue reading “Documented”
Category Archives: Acceptance
Time
Time which I hoarded is now mine to squanderI have so much of it to fill at my leisure andCommand. I needed it when there was careAnd worry and doing so I set aside a block ofHours that were mine alone to fill with a lunchOr a Zumba class or, often with a learning ofHowContinue reading “Time”
The sun will
The last five years have been harder on me than I felt as they rolled along. Caregiving is an encompassing experience. It holds your focus; your loved one keeps you focused on doing for…. Burt was the center for my worry and care. I was a model for selfcare, I say with no boast orContinue reading “The sun will”
Unsolicited
If you are a caregiver, I am going to give you some advice. Remind yourself that you love your person with dementia. Love is complicated. Caring is love. Holding love makes the journey easier. Applaud yourself for the care, patience and [yes] love you are giving. Applaud yourself for the compassion you are living. CareContinue reading “Unsolicited”
My Burt
Burt looks through his intense old man’s eyes, with a seriousness that is touching. The look is fully reminiscent of the boy in him. Like that boy, he is sorting out the ways of the world. Conversations that draw simple and astonishing conclusions flow much of the day. He has lots of questions and gets manyContinue reading “My Burt”
Ambiguity
There is a pet term for the grieving and loss we feel as our loved ones dwindle and decline. As they lose themselves to confusion and disorientation, they are lost to us. Sometimes, the diminished cognition, reductive common sense, and other unraveling occur over many years. Each new feature of this unwinding is another lossContinue reading “Ambiguity”
The practice of care
Best practices include the care of our darlings but as caregivers we need to look out for ourselves. Care for the caregiver includes respite, a topic dear to me and upon which I have expostulated at length. Self-care can and should be done in the company of others. Spend time with friends. I have lunchContinue reading “The practice of care”
It’s heavy
In my encounters with friends and acquaintances, I feel heavy. Physically, of course, I am. It is the sorrow I carry in my heart that makes me feel weightier. This, I think, at each conversation is not the gravitas I hoped to achieve. I have toned down the impulse to spill it all. I noContinue reading “It’s heavy”
Letting go
What was true a week or maybe two ago has changed now. It will always change. I can not cease worrying because there may honestly be something worse or just different about to happen. Things are harder with Burt in bed all the time. Have I mentioned that? I know I have spoken of noContinue reading “Letting go”
Love is lovelier
Oh dear. The second time around. 🎼 For me, the second time is really the years after diagnosis and the symptoms. I am the second wife, but Burt is my first. And only. I know, I am laying it on with extra schmaltz. There is something to what I heard from a recently widowed LBDContinue reading “Love is lovelier”
this is our life 