Living Life with Alzheimer’s

Living Life with Alzheimer’s At age 63, Kevin, a News videographer/editor, was diagnosed, and now livwith early onset Alzheimer’s.

With both Kevin and I now retired from the business of communications, we believe that pictures can be more powerful th...
04/16/2026

With both Kevin and I now retired from the business of communications, we believe that pictures can be more powerful than words.

So yes, now 9 years into living life with dementia, Kevin is in a pickle,and ever-reminding whoever will listen that he is still thinking, and to “forget me not.”

Parallel walking this dreadful journey with him is his brother Mike, who is six years his senior.

Both brave men are battling the beast dementia, living the best life they can at home with the 24/7 assist of their long-time partners, now dedicated caregivers, me, and Mike’s spouse Chris.

While Kevin no longer knows where he is at any moment, does not remember most go-to facts, plus what most objects are, he still knows me and our sons, plus his brother Mike, but most of the names of other family and friends are forgotten, except Steve P.

Thank you for staying in our life. We love you.

We fill his void with music, laughter, dancing, singing, dog walking…and daily reading books he does not remember but reads out loud to me for hours.

Still, the ebbs and flows of what he can and cannot do. What he does and does not know , and frustration-driven rages are astounding.

Currently the seas we are sailing are peaceful, calm.

Is a dark storm looming?

Yes…but not this day.

Today , and every new day together, we are focusing on what he can do, and pursuing self-directed activities that stabilize his mood whie flipping the switch to his creativity and motor skills, like LEGO play: https://alzfdn.org/media-center/alztoday/alzheimers-today-volume-18-number-1/caregiver-creativity-connecting-through-legos/

Well folks, this is my last post. The end.

Thank you so much for following this blog, for emotionally supporting us virtually, and for the love that you virtually share with us.

Are we at peace with the inevitable, including death?

Well, yes…and no, of course.

Instead, as my adieu, I will leave you with this soulful, iconic poem:

Dylan Thomas
1914 –
1953

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.”

9 years in, and now in his mid-to-late phase of his Vascular Dementia, Kevin’s life goal has been met. Please meet Isla...
02/07/2026

9 years in, and now in his mid-to-late phase of his Vascular Dementia, Kevin’s life goal has been met. Please meet Isla, our beautiful beacon of light.

“In the hospital she grabbed my finger, and it made me happy. I will be a good Grandpa,” Kevin says. “I will do whatever I can to make that happen.”

With the birth of this first grandchild, our love, joy and jubilation has brought new hope and purpose into a world of looming darkness we are not willing to embrace yet.

“We must accept finite disappointment, but never lose infinite hope"

Martin Luther King, Jr.

Colin, a physical therapist, regularly plans play time with his Dad to create moments of pure fun and evaluate Kevin’...
12/29/2025

Colin, a physical therapist, regularly plans play time with his Dad to create moments of pure fun and evaluate Kevin’s balance and mobility.

“I still can play frisbee, actually better than my sons,” Kevin quips. “I know what to do…just run and catch it.”

👏 all around!

"Never give in, never, never, never, never—in nothing, great or small, large or petty—never give in, except to convictions of honour and good sense.”
Winston Churchill

With Kevin’s new dementia designation, moderate to severe, has come an add-on Alzheimer’s drug, Memantine.It will not ...
12/18/2025

With Kevin’s new dementia designation, moderate to severe, has come an add-on Alzheimer’s drug, Memantine.

It will not cure him, nor stop this diseases’ progression, but It works by regulating glutamate activity in the brain to improve cognitive function and behavior.

Among its promises and pitfals is enhanced clarity and confusion.

For him, both are in play.

However, Kevin has not known where he is at any given time for several years, and has needed an assist with dressing and hygiene activities for a while.

Several weeks into taking Memotine, the fog in which he is living has morphed, as now he has more clarity about what he can no longer do.

To date obliviousness of his progression has been strangely blissful.

Being aware of all what he has lost and is losing now seems to bubbles up his inner bear.

The good news is that this drug seems to be working. , and for me this behavior is currently bearable,

From the Mayo Clinic, here is the long and short of that: https://www.mayoclinic.org/drugs-supplements/memantine-oral-route/description/drg-20067012

“I am sure this new drug is working, and I will take that.” Kevin says. “I do not mean to lose my temper, and afterwards I never remember doing it. But it just is. This is damn hard for me and Deb.”

It has been 25 years since we have seen Goodman’s “A Christmas Carol.” Happily, we went yesterday, and it did bolster our holiday spirits, as experiencing art always does for us.

Our takeaways are trite and true:

Vascular Dementia? Bah humbug!

We can do this, past, present and into our unwritten future.

God bless us, every one!

Now in Stage 5 of 7 in his walk with Vascular Dementia, there are many things Kevin cannot do. Making and eating Chris...
12/14/2025

Now in Stage 5 of 7 in his walk with Vascular Dementia, there are many things Kevin cannot do. Making and eating Christmas Cookies with our local adult kids is not one of them.

“It was good to make cookies. I do not realy remember doing it, but I do remember eating those cookies. I ate a bit of Christmas cookies because as we were making them, I thought they looked good, so I ate the ones I was decorating. Ya know, I thought I knew everything, but at I don’t. Now life is just about me living , and I an.”

Fun day. I needed a fun day.

I am grateful for fun days.

“Enjoy the little things in life, because one day you will look back, and realize they were big things.”

Anonymous, April 21, 2021

11/27/2025

From us to you.

We are thankful for you all.

Have a safe and peaceful Thanksgiving.

At his neurologist appointment today I got medical news I knew was here, but I did not want to hear: Kevin has slipped ...
11/24/2025

At his neurologist appointment today I got medical news I knew was here, but I did not want to hear: Kevin has slipped to stage 5 out of 7, which means his Vascular Dementia is now considered moderate to severe.

Both my son Colin and I were mentally prepared to take in this rough report, but in the moment were wanting to say, “no doc, that is not true,” when we knew All of it was spot on.

He no longer has a sense of place, or can identify most objects.

His short-term memory is shot, and he can only follow one-step directions

He struggles to remember most names/faces, but his recognition of family is still intact.

The no-brainers like “where do you live,” what season is it, or what is the month or the day is beyond his grasp.

What he does remember daily, whenever asked, really, is that he will be a Grandpa soon ;early February), and it is that joyous event, I believe that is keeping the bits of brain he has left intact.

“It is going to be a good one.” He says, “ a baby girl. I cannot wait to go and see the child, hold and cuddle her. I think I want her to call me Gramps, but you really can’t tell a child what to call you. That is what they will figure out for themselves.”

Several months ago on a bus a woman was telling me about her journey with her husband’s Alzheimer’s, and asked me: “How are you preparing to be a widow?”

I did not miss a beat and said, “well I have taken care of all the personal and financial stuff, and beyond that I am living a fluid life, finding joy in the midst of sadness.”

We are almost 9 1/2 years into this. Our 42-year relationship has changed, and in some ways has stayed the same.

We sing.

We walk our wonderful dog.

We joke and laugh.

We dance.

And he reads outloud to me 2 hours every day.

Reading is his balm, and my continuing intimate connection to this kind, generous and beautiful man.

Will he be able to read books to our granddaughter?

I have to say yes…God willing.

10/19/2025

I launched this space with Kevin speaking out about his diagnosis, and today realized it was time to have him speak to you again in this 05:30+ conversation about how his life is 8 years in.

Thanks, all, for your love and support.

Living life with Alzheimer’s is not easy or fun…but living life is, says Kevin.

Kevin is losing his sense of place, but this die-hard Cubs Fan feels at home here.“I can still follow the game, who is...
09/28/2025

Kevin is losing his sense of place, but this die-hard Cubs Fan feels at home here.

“I can still follow the game, who is doing this, and where the ball is at, I can do that,” Kevin says. “I knew I was somewhere today with my family, a space where I could go in and see baseball. The game of baseball keeps me focused.”

We sat in ADA seats, as has become our custom. To get to our seats, our ADA staffer, Justin, treated us like VIPs, which means we walked through restricted spaces and the crowds were parted by Justin for us. And, we were in very cool Cubbie environs I had never seen, e.g. underneath the left field bleachers and by the hall of fame plaques.

Win. win. And today, versus the Cardinals, a win.

I will take these fun, good days as they come, and make more days such as these happen as Kevin can.

That is living life with, and in spite of, Alzheimer’s.

I am beyond grateful for my son and daughter-in-law. I probably do not say thank you enough.

This is beyond hard for them, too.

Everyone.

Yet, we all know the game is not over, and we are banking on extra innings of stability, whatever that looks like…and then some.

Sundowning, or sundown syndrome, is common in people in middle stage dementia, such as Kevin. Without warning, througho...
09/11/2025

Sundowning, or sundown syndrome, is common in people in middle stage dementia, such as Kevin.

Without warning, throughout the day and early evening he can become:

agitatied
angry
sad
confused
paranoid.

Here is a link to learn more about that: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511

However, at this point, his sundowning syptoms are infrequent, and often subtle so I may not notice the pattern right away, but hours before an episode, I can feel it coming.

So when our youngest son accessed us comp tickets to The traveling improv show of “Whose Line Is It Anyway” now playing at the Harris Theater at Millenium Park, I accepted them with trepidation, as it was a 7:30 PM performance, which is a potential witching hour, of sorts, for us.

Still, we went full steam ahead, as for us experiencing all forms of the arts keeps us relevent, optimistic…alive.

“Deb and I met in a class (1984) to do interactive improv comedy games on stage for audiences , so seeing these guys on stage reminded me of that,” Kevin says. “I can’t remember any of it, but I remember they were funny. But not as funny as me.”

When we landed home he was disoriented, confused, but the bed was calling so it ended with that.

As his dedicated caregiver, and spouse, I have been working overtime to de-escalate and re-direct these behaviors as they surface. In Tuesday night we did something I was not sure he could do, and Kevin did it seamlessly, with prep, and a nappy, of course!

As a person living with and through early onset Vascular Dementia, he is an intrepid, resillient survivor, a man who won’t let the sun go down on him.

Five years ago, at age 60, at 9 A.M. Kevin walked into the Rush Memory Clinic in Chicago and by noon walked out with a ...
08/24/2025

Five years ago, at age 60, at 9 A.M. Kevin walked into the Rush Memory Clinic in Chicago and by noon walked out with a devastating diagnosis we had been dreading.

Before that, the markers of Vascular Dementia had been onsetting for several years prior to August 23, 2021.

The red flags began waving at the end of 2016: His keys, phone and sunglasses were always missing.

His temperament shifted from a lamb to a lion.

And, the top-line network TV videotape editor could no longer edit, operate a TV remote, or decipher directions while driving…even with a GPS assist.

Upon diagnosis, the neurologist told us to sell the car (we did) and get our affairs in order, which we also did, as well.

Eight-and-one-half years later, more cognitive abilities have slipped away, but 5 years ago our doc, who we no longer see, told me “this disease is terminal, Deb, put your life in order. He is going to die.”

Yes he is, as will I, and you.

But not this day.

Before my Kevin dies, Kevin is determined to live.

“Everyone dies, really, so I am not worried about that,” kevin says. “I am still thinking. I am not bothered about this now, because there is nothing I can do about it except keep living. I still know how to dance and sing , walk our dog, daily read books to Deb, and complete some chores and personal hygiene tasks. I really do not remember much, and I am losing some faces and names. But, I am living a good life, and I am grateful i am alive.”

Time is not on our side, but we are not out of time, either.

In true Monty Python form, Kev says “I am not dead yet,” and laughs.

At this juncture, living life to its fullest, whatever the hell that means, is the best we can do this day and the next, …and the next.

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1011 S Lombard Ave
Oak Park, IL
60304

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