It’s hard to explain. It makes little sense even to me. But…
There is something about the challenging symptoms and behaviors that, as they pile on, invite a more vigorous response.
He has wilder delusions, more vivid hallucinations, less coherent responses, and my capacity to deal is supercharged.
Yes. I have bags under my eyes and incessant yawn reflex, but I feel invigorated.
Not in a “bring it on” way. Hell, I can use less of these tests to my sanity. But still: look at me. I can.
Burt falls in love easily. Thanks to Capgras Syndrome, I am one of dozens of Tamaras in his life.
A new me surfaces on many a morning. There is no convincing him I am the “real” the “original” the “favorite” wife.
This is especially so after lover boy introduces himself as single or single-and-hates-his-wife.
I stick to my story. We’re married for all these years, after a 2 year engagement.
My name is Tamara. I share his last name, which I took when we married.
[Aside: I put our ketubah front and center to prove our marriage. This may save me the pain of having to get a copy of our marriage certificate.]
These facts alter nothing of his narrative.
He is immediately smitten. The latest wife is invaluable to his well-being. We start from there.
Note that I do not contradict the prevailing line of his insights.
The funniest part of his retort explaining the many facets of Tamara-dom is unleashed each day.
Funnily enough, I am somewhat miffed by his explanation.
There were so many who wanted jobs and to live here that the bosses said ok, but you shall all be named Tamara. [This had something to do with lack of space, I gather.] We’ll give you a “second name” later if you wish at no charge. “What you didn’t ask for one?”
Interesting, huh?
Exasperating though he is….
It’s a long shift when early rising and a later bedtime turn the day into 16 hours.
In much of this time, he is totally and naturally confused.
His conversation, as I may have mentioned, is a constant deposition of theories and ideas. There is an insight occasionally which jars me but is fleeting as it melds into a delusion or half- baked theory.
He needs more sleep, and after a 3am wakeup has dozed off before 6pm.
If I were prudent, I would follow suit. There is no guarantee that I won’t be met with an early and extremely urgent call again in the morning.
There is nothing funny about having dementia or caring for a loved one with dementia.
Yet there is nothing more welcome to patient or carer than a hearty laugh.
I devise amusing (to me) ways of looking at our plight. I picture Lewy as a roller-coaster (as it is most regularly described) on and off the rails. Come to think of it, that’s an intensely scary image and not at all funny.
Oh, well.
Burt still loves to make people laugh, although today was not one of those blissful days. I cherish his attempts (generally successful) and welcome his engagement with our world.
Here’s hoping this leg of our roller-coaster journey continues in an upward direction long enough to celebrate his upcoming milestone birthday with friends!
I’m also hoping we have some love and laughs as we roll along!
He’s doing well, they’ll say. No response to that makes it any easier.
Yes, it’s a progressive illness, and we’re doing what we can.
He has good days. I’m glad you got him on a better day.
Your visit certainly perked him up.
In truth, I have rarely had to deal with that.
Burt’s pretty transparent, as it were, about his progression. I see more of the decline than others who aren’t with him all the time, but his confusion is evident.
He’s not invisible; his disease is in the open. He can be very clear about his demands, his needs, his wants. That can fool even me into believing he’s stronger than he really is.
Early on, his moments of clarity were a welcome opportunity to deny the realities of his illness.
Denial is behind me now, and I face the truth of his decline minute to minute.
I need to say “he’s doing well” more often so I can appreciate what of him I still have.
I say, "Yes. We are together
34 years." I know to you it
Feels like we met yesterday.
Yesterday. A new experience
Fresh. Who are you? Which
Wife? Where did we meet?
Questions. Wide-eyed like
You never asked them, or I
Never answered. We met.
I am impatient, but should
Not be. It really is the first
Time you've asked where
When. Who. It feels like we
Just met. Like I just walked
Into your life. Someone new.
Yes. We're together 34 years.
The cost of care is astoundingly high. My time has come to get some help with those costs. Fingers crossed.
It would be unrealistic for me to try to meet Burt’s needs without the aid of professional aides.
I know Burt’s needs will only increase. It’s a scary proposition.
Medicaid is an option for some of us. I suggest you get decent legal assistance when looking as this becomes a part of your reality.
Financial assistance is one of the needs we have when caregiving. Support groups contribute hugely to my social safety net.
I could not meet any of the daily challenges without a veritable and often virtual village.
Since support has gone to Zoom and message boards, it’s more helpful than ever. I belong to many groups (most virtual), all of them very helpful.
Among those groups offering assistance to the family caregiver are CaringKind.
It’s their virtual walk that Burt and I will take on October 19th.
The link is for a fundraising page for sponsorship of our passive walking: https://give.caringkindnyc.org/fundraiser/5610000
To give you more opportunities to support agencies dedicated to dementia care, here’s the sign up for the Lewy Body Dementia Association walk. It takes place on September 29th at 10am in Warwick Township PA [register to walk in person]. Register to walk from home.
Burt turns 85 this November.
He had a downturn. Then, the Lewy roller coaster started back up the hill.
Sure, there’s a new baseline that has him looking less like the coherent engaged Burton of 2023, but….
Today, he showed gratitude along with his affection. He’s interested in people and activities.
We have a possible chance to celebrate his 85th. I am mulling it still. You save the date. I will keep you posted.
Saturday, November 9th.
A party will involve short visits from our friends (you). We’ll be serving soda and cakes, I think.
I’m looking forward to it if we can!
In my early 70s, not so very long ago, I was going on [pretty] wild Spin Rides at a gym on W49th.
It’s an experience I can’t imagine having now, although I can recall it vividly.
The Spin room had a screen on which were projected travel destinations. Some were real and hilly. Some were fantastical (and hilly).
In my 50s, I felt vibrant. I was physically capable. We, Burt, and I, would walk to many of the many places we went. Burt was a goer.
For many years, we would routinely walk the 59th Street Bridge to catch the 7 to Shea. It was an easy walk for us. Then.
The changes were slow but steady. Some routines became more difficult. Some walks turned into strolls and then into ambles.
Burt walks with his walker now. Yesterday, I was so proud of the distance he accomplished. He moved with alacrity relative to his condition.
Things happen as we get engrossed and distracted by caregiving.
I managed to misplace (a polite way to say lose) our marriage certificate.
I feel a lot better about it since Googling that replacement can be done easily and online.
Looking for the missing item also gave me an opportunity to sort through documents.
The rearrangement may result in panic down the road when I wonder where I put everything.
I do know for and at this moment what we have and where it be.
The urgency in the search was necessitated by Burt’s wanting proof.
Burt isn’t sure who I am when I go in and out of the room. Who’s this he asks. My honest answer has him adding up Tamaras as I reenter.
Yesterday, he said, laughing as I repeated my name, “There are 60 of you.”
Why do we need documentation? I always reiterate that I am his wife.
He doesn’t know me. He requests proof. Naturally, he wants a wedding certificate and a doctor’s note.
this is our life