how do you tell your children?…

That you have…ALZHEIMER’S???

As we usually do while driving around on errands, my husband and I listen to NPR News on the radio. In addition to the news, it offers regular anecdotal snippets of ordinary peoples’ lives.

The following hit home because my mom had Alzheimer’s for almost the entire decade prior to her death. It was rough-going for she and her caretakers, one of my older sister’s and her husband.

Hearing about the the disease from someone caught up in its web of deceit, might help us understand the victim’s traumatic journey into the unknown from which there is no return. Perhaps when we glimpse the unrelenting misery of someone losing his identity, built up over a lifetime, we can understand that the person we once knew is metamorphosing into a complete stranger. 

And yet, he is no stranger at all.

He is like a newborn having to begin again. Unlike a baby, however, he is fully grown making it difficult for us to embrace him as though cuddling a tiny human being.

Journeying with someone stricken with Alzheimer’s is like living in Purgatory…halfway between earth and Heaven. As such we can’t expect to be completely human, and we’re certainly not angels or saints. 

Alzheimer’s is…what it is…for both the victim and those suffering alongside him. No more…no less.

Here’s NPR’S broadcast…


It’s ALL THINGS CONSIDERED from NPR News. I’m Arun Rath. Today we hear from a man who’s chronicling his own experience with Alzheimer’s disease. Greg O’Brien is a writer and journalist.

O’BRIEN: You ask me the question of who I am, there are days when I’m not quite sure. But in reality, my name is Greg O’Brien. I’m 64 years old. I’ve been married 34 years. We have three beautiful children. At age 59, I was diagnosed with early onset Alzheimer’s. The disease stole my maternal grandfather, my mother, and now it’s coming for me.

I was diagnosed in 2009. It was scary. I remember sitting in my neurologist’s office. He had all the tests results and the clinical tests that I failed and all that. And he’s sitting next to my wife. And he said that you have Alzheimer’s. The doctor looked at me, and he said, are you getting this? You have a battle on your hands. I’m talking to you – excuse me, this is hard to talk about -as if you’re terminal.

Now I have a strong faith, and I know I’m going to a better place, but I started thinking of my wife and kids. And I could feel water running down the side of my face, and they were my tears. How do you tell your kids that you got Alzheimer’s? It sucks. I had planned this family meeting so all the kids were home, and we were going to go out to dinner. I’m in the bathroom, you know, I felt a little bit like Luca Brasi in “The Godfather” practicing my speech, you know, on the day of your daughter’s wedding. And so I could hear, Daddy, where are you? So I came out and, you know, went over the fact that their great-grandfather, my grandfather had died of Alzheimer’s and my mother, which they knew, and now it’s come for me. And they were stunned. They didn’t quite know what to say. And Conor kind of cut through it, and he says, so, Dad, you’re losing your mind. And everyone laughed, and I laughed. And I said, you know what? That’s enough talk for today. Let’s go to dinner. And that’s what we did. And we started talking about the Boston Red Sox and the patriots and the Celtics. And I felt more comfortable in that.

So about a week later, we had a family outing in Coronado Island. And I had just basically assigned my son to be my guardian should something happen to Mary Catherine, and made him power of attorney. So I said we need to talk about this, and he didn’t want to. He wanted nothing to do with the discussion. So I said, OK, I’ll be right back. And I went inside, and I got 80 pages of medical notes that talked about my diagnosis. And I said, Brendan, you need to read it. I don’t want to read it, he said. So I started reading it. And he started yelling and screaming. I don’t know what words I can use here. He started saying bull [bleep], bull [bleep], bull [bleep]. And then he said, expletive, bull [bleep]. And I said, Brendan, you need to get this. He grabbed my medical records, tore them up and threw them off the balcony. And then turned to me and said, Dad, it’s bull [bleep] ’cause I know it’s true. Excuse me. He put his head in my chest. Here’s this guy now in his late 20s, and he cried like a little boy.

It’s difficult doing interviews like this. It’s like getting up for a big sporting event. You know, I say my mind is like my prized iPhone – still a very sophisticated device, but one with a short-term battery, one that breaks down easily, pocket dials and gets lost. So in writing and in doing an interview like this, it beats the crap out of me. But I’m feeling and doing it. I’m beating the crap out of Alzheimer’s. And there is a stereotype that Alzheimer’s is just the end stage when, you know, you’re in a nursing home, and you’re getting ready to die. And the point is no, that’s not true. There are millions more out there suffering through the stages of early onset Alzheimer’s who are afraid to seek help; they’re afraid to talk to people. And if I can help give them that voice so maybe things get a little better for them, then that’s good.

RATH: Greg O’Brien is a writer on Cape Cod. His memoir is “On Pluto: Inside The Mind of Alzheimer’s.” We’ll be following Greg as he chronicles his experience with the disease. Next week, he tells us about how his life changed since his diagnosis five years ago.

O’BRIEN: More and more, I don’t recognize people. And now people understand that, and God bless them, they come up and they introduce themselves to me. These are people I’ve known since childhood.

RATH: That’s next week. And you can read more about Greg O’Brien at our website,

Copyright ©2015 NPR. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

journeying towards her best life…#19: hello…goodbye…and stuff in-between

Had a nice, long chat with Pat this evening.

Nice and long for me.

Probably tolerable for Pat. 

I’m guessing she was fine with it.

She laughed the entire time.

Never disagreeable.

Pat finds everything I say funny.

Actually, so do I.

Hilarious, really.

Like a screwball…bouncing from topic to topic.

It’s the new diet book I just bought.

To wishing I were there…eating Hawaiian plate lunches. 

It’s about available housing near The Mayo Clinic for her recovery stay.

To my scouring the internet for light fixtures for our upcoming remodel.

It’s asking if her son has a new girlfriend.

To how long before homeopathic supplements kick in.

It’s agreeing that Brad is one savvy guy.

To Pat’s knowing one of her good friends since 6th grade.

It’s her having lost about 30 pounds.

To Filipinos thinking I’m Filipino.

It’s learning that Julie was celebrating her birthday with family on The Big Island.

To Pat’s son texting and calling her regularly.

It’s her wishing she could just yank out her shaky back teeth.

To Jennifer’s Super Bowl Party…minus kids.

It’s Pat’s great conversations with her sons, as she drove them hither and yon.

To my daughter laughing at how I jump from topic to topic…making it difficult for her to keep up.

It’s recipes high in calories to help Pat build up her immune system.

To my husband’s being a little “under the weather.”

It’s how dad…my father-in-law…probably only spoke when he had something to say.

To me me saying I chatter…to fill the silence.

It’s how helpful sister-in-law Bev’s therapeutic massage is for Pat.

To how my legs ached the day after carrying…my darling, almost 1-month-old, great-nephew…up and down his parents’ steps so he’d fall back to sleep.

It’s how much Mel, a co-worker and great friend, misses Pat.

To not being able to postpone her colonoscopy…and tolerating the stuff she has to drink the day before.

It’s Pat’s continuing to feel good.

And to her living in the moment.

It’s saying goodbye to Pat.

Then talking her ears off for another half-hour.

It’s saying goodbye to Pat again.

Then talking her ears off…again…for another half-hour.

It’s Pat saying…”Okay. Goodbye, Millie.”

Then hanging up the phone.

My hubby, Pat’s brother, did get a word in…

…edgewise…and sideways…in under 8 minutes.


michelle’s weekly pet share: update to grandkitty’s tale

Forgot to mention grampy’s contribution to the tale of our woebegone grandkitty.

"I'm all ears."

“I’m all ears.”

The kennel in which grandkitty had his smelly accident was exiled to the balcony. And thank goodness there was one.

Imagine spending the night in a studio…albeit an over-sized one…with no windows to open, and a sliding glass door that remained closed for the sake of security, not to mention the cold.


I would probably have slept at the furthest point away from the crate. Maybe standing up in the shower after I’d scrubbed it thoroughly…top to bottom. Me and grandkitty hiding out…with the bathroom door shut tight.

Fine for me anyway, seeing as how I “go potty”…while everyone else dozes.

Grandkitty’s crate would have been history if I had my way.

Not one to shrink from a challenge, grampy decided he’d save it…somehow.

“Good luck”  I thought. Removing every piece of stuck poop would be some trick.

Lo and behold after moving to our daughter’s apartment, and after the movers had unloaded all her furnishings and left…grampy set about cleaning the cat crate.

Removing the pieces ever so carefully so as not to drop any poop, grampy took some kind of brush and scraped off all kinds of “unmentionables.” (I would have barfed for sure.) And then he took the pieces down to the basement laundry and ran them through one of the commercial washing machines.

Voila!!! Good as new. 

I don’t think grandkitty’s been back in it yet, since he’s not been on a plane since that unfortunate, never-to-be-forgotten event.

…i’m sure you wanted to know what happened to the poor crate…



"Chewing my toes is more exciting."

“Chewing my toes is more exciting.”

"And you'll never get me on a plane again!"

“And you’ll never get me on a plane again!”

michelle’s pet share: a little levity…from my grandkitty

My daughter sent along this photo of my grandkitty, a little fella who tugs at my heartstrings every time I see him…in person…or in print.


I think he’s trying to tell his mom that he misses me…his blogging hug-grammy.

And that she’d better get him on a plane headed this way…quickly! 

Even though the last time we all flew to take he and his mom back to where they lived…he pooped in his crate.

Believe it!

Having rented a condo for a couple of nights until our daughter’s apartment was ready for her to move into, she and I had to bathe my poor, miserable grandkitty in the shower.

Imagine a cat with water pouring down from high above, while two humans he thought cherished him scrubbed every nook and cranny of his body unmercifully. Well, it was more like my daughter holding him, while I did all the pulling, tugging, and scrubbing…making sure not a smidge of feces was left in his long hair.

Triple uuuggghhh!!!

So then we had to leave him holed up in the bathroom so that anything I hadn’t manage to scrub off…didn’t smear off onto the condo furnishings. 

Poor, miserable grandkitty.

Although the night before, I did insist we buy a little, soft fabric house in which he could hunker down and hide. And that’s where he remained until we felt it was safe for him to join us in the rest of the over-sized studio.

Of course I had packed his litter box, some litter, the poop scoop, and some food…wet and dry…in my suitcase. So he was good to go…kind of.

As you can see, the “little man” has acclimated to his home of less than a year quite nicely. In fact, he’s back to his ornery self. 

…no doubt about it.


(Move your “mouse” across each photo to read the caption.)

(Go to the following for other…PET SHARES by MICHELLE

journeying towards her best life…#17

Last night I had asked Pat if she preferred I not continue to blog her health journey. I thought it might be too difficult to share her thoughts, thereby baring her soul, as time went on. 

In no time, I received a reply.

Pat explained that if what she was going through could help others, than sharing news about her experience was worth it. She went on to say

“…writing about it helps me.”

Most of what I’ve sent [you] so far has been light, meant to make me (and, hopefully, others) laugh.

It wouldn’t be fair, however, if I led people to think that I’m breezing through this, although, luckily, so far it seems I have.

And although I really like all the doctors and nurses taking care of me, the reality is that after certain appointments, like today, I get just a little depressed.

I’m reminded “Yes. You are sick. And yes. It is serious.”

So when Brad asked if I was going to update the family, I said I would but that I needed to digest it all for myself first.

It takes a little while to get my mojo back.

It’s on its way back now.

I’ll pray. Reread your blog and the comments left. Listen to Hawaiian music and do whatever else I can that allows me to take a step back and ask myself…”How am I feeling right now? Because right now is all I have. And if in this moment, I feel good, then let’s celebrate!”

Worrying about things that may [or may not] occur means experiencing them many more times than necessary. In reality, I’ll only experience them when they actually occur. ( FYI…I’m not as smart as you might think. This came from a bible study passage I’d read on 1/16.)

Anyway, [hugmamma], I think you know where I’m coming from. I trust your judgment when it comes to blogging. 

So let’s blog on! 

I’m feeling better…can you tell?

…yes, pat…i can tell.

As a postscript, Pat added that since she couldn’t get a hold of her sister to wish her a Happy Birthday she did the next best thing. 

During today’s treatment, to take my mind off the shot I was getting, I sang “Happy Birthday” to her in my head. Corny. I know…but it helped.

…hugs and aloha…pat…


journeying towards her best life…#16

Yesterday was Pat’s second chemotherapy treatment.

Following the IV injection, shot, and meds she is given at the doctor’s, she has to take more meds at home. To which she said yesterday “…waiting for Brad to get home from Costco with more ginger juice, so I can get the stuff down.”

Aaarrrggghhh! Don’t know if I could stomach meds AND ginger juice. Makes me gag at the thought.

In a general email to her siblings, Pat went on to say…

Today’s treatment was the same as last week. Right now I feel okay…a bit fuzzy.

Learned more after talking with the Transplant Coordinator who, by the way, graduated two years ahead of me from the same high school.

Small world…and getting smaller all the time. 

Pat continued on…

Treatment here at home will be done in 4 week cycles.

Each cycle starts one right after another, assuming there are no complications…like me getting sick. The cycles will run through 5/12/15.

I’ll then have a bone marrow biopsy to determine if I’m well enough to travel to the mainland for a stem cell transplant.

The earliest we would travel is probably around June. We’ll likely be there 3-4 months, including recovery time.

Kaiser usually works with the City of Hope Hospital, but because my situation is unique they recommended I go to The Mayo  Clinic. Paperwork  will be completed by Kaiser before they contact The Mayo Clinic. So we’ll get that out of the way and be ready to travel by June.

As for how she’s doing, Pat said…

My blood cell count after the first treatment looked fine…some numbers were slightly lower than when the test was done in December. However they were all within the normal range. 

The numbers will likely go down with subsequent treatments. 

The fact that I felt pretty good after the first treatment is also a good sign. However that too may change as I undergo more treatments. 

Basically, the nurse said that my body may eventually tire of all the meds. 

I’m hopeful the side effects won’t be too bad, but I’ll deal with that if and when the time comes.

And, finally…

Brad’s home. Time to finish taking my meds. I might lie down for a bit. First, I have to call Julie and wish her a Happy Birthday.

Talk to you all soon and thanks for the continued prayers. We’ll continue to keep you informed.

Love you all…always.


As you can see, the path will not be a rosy one. Nonetheless, Pat is determined to take it one day at a time. Along the way she continues to display her sense of humor and fun which makes her so lovable.

P.S. During today’s treatment, I couldn’t find anything interesting on the tube. So I settled on watching a repeat of a UH [University of Hawaii] volleyball game. I had my eyes closed but continued listening…vaguely. The voices I heard through the earphones kept changing abruptly, so I opened my eyes. I soon realized that the woman in the next chair was changing my TV channels while she changed hers.

I guess she didn’t get the memo about covering the signal on her remote…

…gotta love pat.


Nurturing Thursday 68

Very appropriate for what our family is going through with Pat’s…journey towards her best life…

Tao of Scrumble


image by Alena Hennesy

With all that’s happening in the World right now, it feels like a dangerous place.

But this Joseph Campbell quote reminds us that we do have choices. It may not always be easy ~ often it’s a downright struggle ~ but we can choose to nurture joy, not fear.

Remember, what we focus on grows!


Nurturing Thursday is hosted by Becca Givens, author of the inspiring blog ‘On Dragonfly Wings with Buttercup Tea.’ To read more about it, or to find out how you can join in, press this link.

Other ‘Nurturing’ contributors are:

Crowing Crone Joss

Inside the Mind of Isadora

Laurie’s Notes

Pocket Perspectives


Tea and Paper

Meg Evans

Bowl of Cherries


View original post

nurturing thursdays: journeying towards her best life…#15

I can only imagine what went through Pat’s mind yesterday as she learned how her life will unfold going forward.

We all try to take each day as it comes.

For most of us it’s a simple undertaking. It’s the same old, same old. There may be a few variations on the theme, and some can be major…like changing jobs…retiring…moving to a new home…having a baby.

Life-threatening illnesses, however, takes it to a whole other level. One for which no amount of preparing, mentally and physically, can ever be enough.

Pat’s journey with multiple myeloma and amyloidosis is daunting, to say the least. 

It’s like walking through a tunnel, not knowing what the darkness holds in store along the way.

Holding onto hope and positive thoughts are like the light at the end of the tunnel. And that’s what human survival is all about. Hanging on with all of our might.

That’s what God intended when He gave us life. He meant for us to squeeze every ounce of goodness from His gift. 

Happiness is that warm, fuzzy feeling when something good lights us up…from the inside out. And that feeling occurs in small and large doses throughout our lives. 

Never give up on happiness. It’s there for the taking. We just have to accept it.

And why wouldn’t we? It doesn’t make sense to turn away from it.

Don’t worry! Be happy! As the song tells us.

Easier said than done. Perhaps. And yet what’s the alternative?

Letting life slip away without any say in the matter?

That’s not Pat’s style.

…and it’s never been mine.


(Enjoy other inspirational thoughts at



retirement bliss…

So far my husband’s retirement has been a dream for both of us.

I have to pinch myself when I realize my husband will no longer be gone 13 hours a day anymore…leaving at 7 a.m. and returning at 7 p.m.

Decades of that routine can be wearing on a marriage. Thankfully, loving and liking carried us along the oft-times bumpy road striving to meld two lives into one.

It helped that we’ve always been best friends. 

As best friends we began with much in common. With the passing of years we grew even closer…as expected when couples share their daily lives almost 24/7…by phone, email, or text message. And voice mail when nothing else works.

These days I don’t mind that hubby’s gone a few hours a week as a consultant with his former employer. I’m sure his ego is buoyed by the fact that he’s still needed and wanted. Nothing wrong with that. Everyone needs to feel valued. And not just by his spouse.

Anyway, it gives me a chance to blog. Something for which I feel valued apart from being a wife and mom.

Another wonderful by-product of retirement is being able to do whatever, whenever. There’s no end to the day.

Driving home from a day browsing through antique stores late Sunday afternoon, I thought we might stop for dinner and a movie. Almost midway through that thought I got a sprinkling of Sunday blues.

I use to get that all the time when I worked…the Sunday blues.

Sunday afternoons were a downer for me. Mondays meant another five days of work before I was again free to do whatever I pleased…for a whole day-and-a-half. 

I hated Sunday afternoons.

Almost immediately, however, I remembered my husband no longer HAD to go to his office on Monday. Hallelujah!!!

Too tired from walking in and out of shops all day, I decided spending the evening at home with hubby would suit me just fine. He agreed.

A little hiccup in an otherwise smooth couple of weeks of retirement occurred last evening.

My husband was invited to join a friend and a few other neighborhood men, at a local wine bar for drinks and conversation. We agreed it would be nice to meet other retirees.

A couple of hours later when my husband returned home, I learned the three other men were far from retired. They were probably only in their 40s.

While it was fine getting to know them, my husband decided he had little in common with those young whipper snappers.

For starters, the men were planning a 15 mile run which they intended to complete in 2 hours. From the look on his face, I saw that my husband was probably picturing himself flat on his back not far from where they began their run.

Without skipping a beat, and with a hint of mischief in my voice, I said ” You should run with them. Just think, even if you pulled up the rear, you’d be doing great!

Hubby’s reply?

…yeah…not so much.


journeying towards her best life…#14

Helping to foster their sister’s well-being, siblings have lent voices of encouragement as Pat continues to move forward on her journey.

Glad to hear you have been doing well.  We continue to have you in our thoughts and prayers.  Let us know if you are “ono” [“craving” in Hawaiian] for anything.  Do you have to follow any special diet?

I want to always be there for Pat sending only positive energy her way.   I, like you, want to share in her experience but don’t want to ask too much.  She already has enough.  I am so impressed with her strength……she inspires me. 

It’s great to hear about all that is going on…with Pat. I don’t want to bug her about how she’s doing.

Pat…our sister, is truly a special person and it warms my heart to read about her journey and to be allowed entrance into her inner thoughts, fears, concerns, etc. Also your explanation of her medical condition and treatment helps us to understand what she is going through without her having to explain it 12 times! Thanks so much!

Thanks…for the updates. I’m sure Pat appreciates not having to deal with all the personal inquiries. Meanwhile, we can still keep up with her information.

Reading about Pat and knowing how she’s doing is helpful to me and I’m sure the rest of us. It gives us the opportunity to know how she’s doing without all of us bombarding her with repetitive questions. You’ve made me laugh and cry through all of the posts you’ve written. 

I’m proud and happy to have been born into this family. I miss mom and dad. We are their legacy! I know I don’t say it but I want you all to know how much I love you!


And again, Kathi…
Thanks for all you’re doing for Pat. Selfishly, for me and many others too. Burdens have been lifted and healing has begun.

I thought you’d like this anecdote. Joey received an email meant for me and comes running in to tell me I got mail from HOT mamma! Whaddaya think? Should I correct him or let him believe you’re really hot???

And this is what Pat had to say to her siblings…
Thank you all for the thoughts, prayers, and words of encouragement. It’s hard to find the words to express how I really feel. Our family is amazing…but you all knew that already. As long as I feel good, I will email to let you know what’s going on. And if I feel crappy, Brad will update you. I love you all…always. 

And what does Pat think about my penning her journey?

I’m glad there’s a venue for everyone to be able to follow what’s going on. Not that I mind phone calls and emails. Day time TV pretty much sucks, so I’m happy receiving and responding to emails. 

As for me…

…at 65…i might like being called…

………”hot” mamma.

bullying…adults, take heed

Gosh darn! Why can’t the NFL leave the Seahawk’s Marshawn Lynch alone???

Yeah! I get he’s suppose to honor his contract about talking with the media like his fellow NFL football players. No matter the circumstances, however…bullying is bullying! Plain and simple.

The message sent to our children is that…it’s okay for adults to bully one another, especially when millions of $$$ are at stake. 

As often happens with adults, we like to think we’re above the lessons learned as children. “Been there. Done that. Now I’m all grown up so I don’t have to do that no more.”

Better we try to teach the next generations to…think outside the box when circumstances call for it. 

Can we finally dump leftover Victorian Era stupidity which…hammered round pegs into square holes…and…square pegs into round holes? 

Haven’t we yet learned in 2015 that no two human beings are alike? 

So if Marshawn Lynch can’t make small talk…which some of us can garner Oscars for…then let the man do something else which might satisfy the contract. For goodness sake’s! Even his teammates are willing to cut the guy some slack. 

So it’s not like Lynch is going to commit suicide over something stupid like this, but can we recognize why teens pushed far enough end up taking their own lives?

This is no different.

Although the NFL, and those of the same mindset, will undoubtedly hem and haw…and hide behind their standard speak…”Well, if we make an exception for one, then we’re setting a precedent, and then the whole thing starts falling apart.”

As far as I’m concerned that’s just lazy talk.

It’s too much trouble and too much money to “think outside the box.” 

The NFL and its rules are set in concrete.

So if Marshawn Lynch can’t keep his mind on the game…and his eye on the ball…it may be due in part to his being bullied. 

Something to remember the next time the NFL and the media get up on their soap boxes denouncing bullying by their players.

And something we adults need to reflect upon when…

…another kid commits suicide.


journeying towards her best life…#13

Just received a text from Pat…

It is a nice, sunny day again.

Getting ready to leave soon.

Got a busy day ahead.

Mammogram (fun!) at 11:40.

Meet with the transplant coordinator at 1:30.

And then treatment at 3:30.

Trans Coord to go over logistics and what not.

I think one has to qualify…not medically, but in other ways.

Since we could be gone for a couple of months, [the TC will] go over cost…what’s covered and what’s not…review my medical insurance plan…my emotional state of mind…support system…etc., etc. This is just the education portion.

I text back…

…”we are here for you…whatever you need. We are in this with you. The whole family is…hugs and love.”