I envy you,
remembering the
addresses of your
childhood
I remember nothing
Not even grudges or
The names of friends
or neighbors
If memory is all we have
I have only you and our
years together
I remember all that
Every touch, every
tender moment
Memories like that
are my blessing
My consolation for
all the unsung moments
Of my past
In some ways, he’s more my child than my husband. He seems to acknowledge this on some level when he refers to me as his mother; of course, when he does, it’s part of his confusions, delusions, and hallucinations.
When I came back from an unusually late outing in which I enjoyed the hospitality of an Alzheimer’s Association party for caregivers, Burt was there to greet me.
It was sweet when he insisted on “waiting up for me.” He has had some trouble over getting up out of bed lately but struggled to go sit in his big brown chair.
That’s the spot where I tell him to meet me when we plan my homecomings.
And there he was when I came home and happy to see me. It added sugar to what had been a sweet evening.
It’s easy to find little annoyances that “ruin” our day but honestly it’s just as easy to find gratitude.
I am heading to meet some fellow caregivers at a party. Alzheimer’s Association 6th Annual Caregiver Appreciation Event will be our first in person meet-up. Those of us who’ve been answering writer prompts will also share our pieces with the wider caregiver community.
I am so excited by all of this. Our aide rearranged her schedule so I would be free to go.
More room for gratitude.
I am dressed in a coat that is borderline too warm. This is an annoyance. My solution to drape it over my shoulders worked.
In the spirit of TMI en route to Midtown, I dropped off a urine sample. We’ve been puzzling out Burt’s recent decline. I will be very grateful if this helps.
After trying to get the sample for three days, I was singing the we got a sample song all the way down the avenue.
Traffic! Oh yeah, terrible today so I am grateful I chose to walk.
A side effect of Burt’s diagnosis has been my tendency to grossly overshare.
How are you is a simple question but my answer is overloaded. Too often full of the kind of detail we bill as TMI.
No simple answer. I try to keep it light or funny but I definitely talk too much.
I am grateful that there are still people willing to ask.
“Stick to your knitting” might be apt in these moments where my anxiety over my husband’s condition runs headlong into my feelings of patriotism and citizenship.
I think I can do both. Worrying is a well-honed skill.
I am more than capable to juggle the two.
Neither is a small concern.
There. I have interjected my politics and civic disposition into the blog about our journey with Lewy Body Dementia.
Both matter a great deal to me. I resent that this particular political moment is making my journey in life that much harder.
My life at home is changing further; Burt needs more help, especially getting up and staying up; he walks less, and getting into bed is scary for him.
I guess that I should have said our life is changing. I will need more aides, more hours. We are getting the hospital bed to make Burt more comfortable getting in and out.
He’s likely to use the wheelchair more often than his walker going forward. I am saddened.
I would like to concentrate my efforts and talents to just giving Burt the best of me.
Of course I shall. Whatever the distractions. However, I stumble or mumble along.
“I am never going here with you again,” Burt whispers. Maybe he even said “anywhere with you,” but you get the gist.
It was a wonderful party. Our friends brought him thoughtful gifts. At my suggestion, we sang him the birthday song. (Do we still owe someone royalties on that?)
The first arrivals talked among themselves about their Brooklyn roots. I interjected Burt, who has genuine Brooklyn roots himself, but he was a reluctant talker. Funnily enough, he had asked the weekend aide if he knew 805 Avenue O (his old Bklyn address) just minutes before the doorbell chimed.
We women of the party [and some men] were all happy to see each other. There was love and energy in the room.
Burt tasted but did not stick with any of the food offered him. He sat back and observed.
My youngest friend was tasked with flirting a smile out of him. She did.
The arrival of his weekend carer coaxed another smile from him.
Everyone respectfully made their excuses to move on in the time slot we had designated.
Two hours for Burt was likely about 75 minutes longer than he could process.
Then we had our stragglers, a late arriving sweetheart of a neighbor and a lovely couple from the next block.
Each came and went quickly, not before making a tribute to the man of the hour.
The two aides helped by assisting in getting Burt into the bedroom. Oh, there were protests at the process, but I could not have budged him without them.
It was fun. I was so glad to have this (likely last but significant party) for my birthday boy.
I also really welcomed the friendship everyone brought with them to Burt’s 85th!
Recently, a kindred caregiving spouse wondered how many hours of care she should consider for her husband. She had been going it alone, and with all her heart and love. Anyone who’s been there knows how intensely draining and lonely this can be.
There comes a time on this journey when caregivers need relief. For me, it was pretty much from the get-go; I knew I wouldn’t survive if I didn’t get time to myself. I have termed my need to get away (to the gym, the store, a museum, to lunch with friends) as existential.
Today, with Burt needing both more and [understanding] less, it is increasingly necessary.
This was my response to her question about how much time to give over to a professional aide.
When I began to hire caregivers for Burt, he needed companion care.
I couldn’t leave him alone, but he was able: to dress himself, use the toilet, walk independently, etc. I had 16 to 20 hours at first [in 4 hour increments].
He now needs help with ADLs, wears a brief, and depends on a walker. At times, his walking is unsteady. I use 42 hours [6hrs/ 7 days].
I could use more, though I have some privacy issues in a one bedroom NYC apartment and have to work out how a longer schedule would work for us.
I use approximately 30 of these hours for my-time. I come home and work with the aide for the last hour of her weekday shift.
On Sat & Sun, the point of the helping hand is so Burt and I can get out together. His weekend aide helps get him dressed and cleaned and bathromed.
Then he “drives” Burt out in the wheelchair with me so we can go to a park and out for ice cream.
Today, I am grateful that it is Burt’s 85th birthday.
Happy birthday, Burt.
Now I really am relieved. The fever Burt was running appears to have hit normal.
The thermometer stopped its red scream and went to a peaceful green this morning. His head was cool to the touch.
We haven’t heard what the picture that XRay Tommy took in our home looks like yet. But Tylenol seems to be doing its job.
The always responsive medical team at Weill Cornell’s Center on Aging called this morning about my update. I am so grateful for this great group of doctors and nurses.
Fingers crossed that he continues to mend from whatever this episode is!
It was a relief of sorts to realize that Burt’s decline of yesterday was due to a raging fever. The fever, after a night with Tylenol, is in a more manageable range.
I am ashamed of myself for being so angry and impatient over Burt’s inability to get out of bed. How unkind of me to act as if this was about me.
I am distressed over his fever and portalled his always reliable doctor. Today, it’s about getting him treatment.
He is making better sense today.
We’ve started to connect a little in the sweet way he usually has.
this is our life