There’s a lot of serendipity afloat at this end of our journey. I get glints from the universe that all provide points of light from Burt’s life. Or maybe, my experiences spur my memories. Memories are giving me context to our history, mine and Burt’s. I knew his background, I think, because Burt was alwaysContinue reading “His story”
Tag Archives: #at-home
A sea change
Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk. Today we are expecting a visit from a nurse from VNS to assess the damage. We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.Continue reading “A sea change”
Short bursts of energy
There’s a support group that «puts the I in caregiver« which I value for its honesty. It’s akin to the one urging us «to be selfish.« I take about 5 hours for myself each day. It’s a necessary indulgence. Let me try to explain what my time away does to benefit me. When I getContinue reading “Short bursts of energy”
The sign
It’s been at least two years since I first met this sign on a stretch of East End Avenue. I took it both at face value and as an indicator. Life, our life, had definitely hit a patch of the rough. In our case, we had not had or did not heed or were notContinue reading “The sign”
A weekend routine
We were going out on Saturdays and Sundays. We went to Karl Schurz Park or to watch the waters along the East River Esplanade. We stopped at an ice cream parlor on our route to or from. When the park outings proved too much, we still went out for an ice cream. We went out.Continue reading “A weekend routine”
Here’s where the focus shifts
Burt is having more interactions with hallucinatory visitors these days. He experiences delusions and a good deal of confusion. This lessens his involvement and connection with those of us with him; the ones actually in the room. For instance, when I told him I was his wife and I was home with him, he said,Continue reading “Here’s where the focus shifts”
I did it again
Oversharing, longer answers than the question called for is the hallmark of my current convos. A neighbor asked how I was doing. She was sincere, but I tried to be brief. Midway to just saying, “we’re ok, thanks.” I proceeded to add, “we just got him a hospital bed, so that’s a whole new levelContinue reading “I did it again”
Management
Most nights, I’ve been going to bed at 8 o’clock since I can never be sure if Burt will awake in the middle of the night. We’ve had several 4am chatfests. I am generally bone tired by 8 from keeping farmer’s hours. I awake early, thanks to going to bed early. It’s a cycle. SleepContinue reading “Management”
Home away
It’s a quandary we face. The person we love and married is no longer the same. I miss him all the time. Life with a p.w.d. is far from easy. Is this the right time to place him or her in a residential home? A social worker once told me, “You will know when theContinue reading “Home away”
No aide
I take my respite seriously. I’ll admit sometimes too seriously. Time away from the unusual thinking fostered by LBD is my golden ticket to staying sane. Or so I fervently believe. I take that time each weekday. On the weekends, we have help so I can have less hands on with the care. All ofContinue reading “No aide”
this is our life 