LBD Was His Kryptonite

Wednesday, May 10th, 12:40 am.

Death does not sound a trumpet.
— African proverb

There were no trumpets, or any heralding anything.  Just quiet, and then he was gone.

He slept all day yesterday, occasionally making a slight moaning sound as he drew in a deep breath, his Cheyne Stokes breathing pattern causing a long pause, seemingly lasting forever, then a series of short pants as his lungs attempted to remedy the oxygen shortage.  This has gone on for the past three days.  Initially he was restless, even thrashing at times, but then he slowly calmed down over the course of a couple days.  Yesterday morning he felt warm, his hands were warm.  The nurse came to check his temperature and it was 101.1.  We debated if it was sepsis, or simply his autonomic systems and his losing his ability to regulate body temperature.  The staff gave him some tylenol to regulate body temperature and make sure he was comfortable.

This is how his final days went, slowly, quietly, without much fanfare.  Occasionally Cynthia would stop in, she is very distraught about dad’s passing.  She really had a thing for my dad and she’s losing a buddy.  She told me yesterday afternoon he and she were going to run away to ‘Crawford Manor’ together. Some of the staff would poke their heads in and send their condolences, but in general it was quiet. I spend a good deal of time talking with my stepmother and my sister, who was a rock these past couple days.

So, Lewy Body Dementia was his Kryptonite, and he was my Superman. A man who taught me a lot about how to treat people, and how not to treat people.  How to be strong, yet sensitive. He taught me to use my analytical mind to solve problems and find solutions to any form of challenge. He was a super-fan of mine, supporting every hobby, whim, and decision. He was so proud for my accomplishments, but especially proud when I received my PhD.  I am so thankful for these past 3 years where I got to spend time with him, and he had the opportunity to make such a positive impact on my daughter’s lives.

I miss you already Dad.  Godspeed.

The End.


Morphine Every Four Hours

May 7, 2017

The exit isn’t nearly as glamorous as it is on TV.  I’m at the home, holding dads hand as he writhes a little and moans occasionally.  They told me when I got here that he hadn’t eaten or drank since yesterday.  He hasn’t been out of bed at all, they tried for a couple minutes in a recliner, but it must have been too difficult.

I managed to get him to take a couple sips of water and one of milk laced with some ice cream, but after the first he couldn’t swallow so it was falling out of his mouth.

He’s on a dose of morphine every four hours to keep him comfortable, with Atavan every so often for agitation.  I haven seen him open his eyes today at all.  Jeanette finally showed her cards and gave in that she thinks a day or two at most.  She’s looking for mottling on his legs every few hours.  Some kind of discoloration as death is eminent.

i don’t have the energy to go on, so I’ll leave it there, I keep praying for God to take him and stop this but so far I guess it’s falling on deaf ears.


Next to Last Entry

May 4th, 2017

The days slide into weeks, which in turn slide into months.  When you’re busy as hell, life slides by.  I’ve picked up my laptop to write about a dozen time, then I think to myself, “what the hell will I say”.  Dad hadn’t really changed from my perspective for a while.

Our friends have kept us at arms distance, noticeably, for a while now.  Its my fault, whenever anyone was politely asking how my dad was doing, I would tell them.  My mistake, nobody wants to hear that.  “How’s your dad doing” is one of those things you ask because you know you’re supposed to ask, but you don’t really want the answer and the depressing details of a good man succumbing to a horrible disease, its not the kind of conversation that ends anyway other than awkwardly.  So I stopped. I wonder if this is a common problem, maybe its just peers my age, in their late 40s since very few have lost parents to a shitty disease yet. Maybe older people, who’ve lost their moms and dads are more sympathetic and want more details.  My peer group doesn’t want to hear it though.

I stopped telling people how he was, I’d say, “about the same” then quickly try to change the subject, maybe looking tougher than I am. Its easier than trying to fill people in on the details.  It’ll really be strange when I have to tell people he’s gone when they ask.

My health has begun to show the signs of stress and lack of sleep.  My most recent physical had my cholesterol up and blood sugar up, and most of all, my weight up.  I can’t find the time to work out like I used to, no half marathons in my near future… I need to ensure my girls have present parents, my dad has a friendly face and someone to hold his hand, and my spouse has the husband she needs to keep a house running.

I think that will change soon.

This is my next to last entry.  I’m pretty sure anyway.  I can’t see chronicling the last few days of my fathers time on this earth in any detail. The details of the end of life for dementia patients are already fairly well laid out in numerous articles, mine doesn’t need to be another one.

Dad has take a significant turn for the worse over the past two weeks.  I have been traveling a good deal, to Europe, Washington, etc., then fell quite ill and hesitated to take my sickness into the home as to not infect any of the fragile residents.  After my short hiatus, I’ve returned to him no longer walking, or standing for that matter at all.  He talks very little and its just gibberish.  His food consumption is now way down.  They’ve moved him to a puree’d diet as he no longer is swallowing as one should.  Even fluids he is holding in his mouth as if his mind has forgotten how to swallow.  An empty spoon, or a straw poking him in the lips will sometimes prompt his brain to swallow whats in his mouth.  The challenge is I can’t be there for every meal and I don’t think the CNAs put the time in that I am willing to do at meal time.

His blood chemistry seems to be all wonky now, his electrolytes are out of whack, sodium and potassium, his blood urea is twice what it should be, indicating kidney failure.  His lips and nail beds are blue, indicating his blood flow is slowing down.  His breathing is labored and irregular, called ‘cheyne stoke breathing’.  Its part of the process. As a result, they’ve stopped all maintenance medications on him now and have moved him to palliative care, pain and comfort only.

Here’s a list of the things to expect at the end for a dementia patient based on a UK website on dementia and the final days:

  • profound weakness
  • a reduced intake of food and fluids
  • drowsy or reduced awareness
  • gaunt appearance
  • difficulty swallowing
  • bed-bound
  • needing assistance with all care
  • disorientation to time or place
  • agitated or restless
  • difficulty concentrating.

He hits them all.  Although disorientation and difficulty concentrating are hard to assess when someone isn’t really coherent.

Two nights ago I was helping him eat dinner, he didn’t eat much, but a little.  He sat up and once or twice he opened his eyes really wide.  When I finally had to leave, I told him I loved him, he came back with an intelligible, “I love youuuuuu” in a goofy voice like he used to use.  Deep down he’s in there.  If that is the last intelligible thing I hear him say, then thats a gift I’ll have with me for the rest of my life.  Its good to know one’s sense of humor can be even harder wired than the autonomic response of swallowing.

So I will try to see him in the afternoon and evenings. While spring sports are in full swing, the weather has been terrible here so many activities have been cancelled.  I can focus on my dad for the next few days and see what life brings us.  Only one more entry of these silly musings…


Sunday, January 22, 2017

Long time no write.  Busy times here in my house.  On top of the unbelievably busy schedule we normally keep, my wife has been injured.  We took a vacation to ski in Colorado over Christmas and on day one my wife was hit by a snowboarder.  It twisted her leg back, we had to go immediately to the emergency room in Breckenridge.  Her MCL, medial collateral ligament, was severely sprained.  Her ACL was shot, completely torn, surgery when we get home.  So this has complicated our lives.

She has rehab’d her MCL in order to prep for the ACL surgery.  Surgery was this past Friday morning.  She came through great, got her home yesterday mid-day and she’s been in recovery with a complicated medicine regimen of NSAIDs, pain killers, antibiotics, stool softeners, along with her normal regimen of meds she routinely takes.  I had to make a spreadsheet to ensure I get everything correct.  Nothing is on the same schedule, some four hour intervals, some eight hour intervals, some six.  I have a line of shot glasses labeled with the times, and I wake her every two hours for the next set of tablets and capsules. I’m so thankful for my aunt who could come and stay with us for two weeks, otherwise I have no clue how we would have made it, probably a lot of McDonalds.

Friday was a tough day.

Jumping back in time to last February, 2016.  I can’t remember the day now.  I was on my way home from visiting dad at the Greenfield psychiatric hospital.  They thought they’d found an opening for dad at a small memory care center in Westfield, I’d called my wife to meet me there so we could check it out.

We pulled into the facility and were escorted back to the cottage.  When we got there the director of the facility met us and walked through the corridor with us.  One CNA was pushing a laundry cart replacing clean linens.  A resident was helping her.  June, very small in stature, very quiet voice, cute smile, along in years, seemed a bit frail.  She was harassing the CNA to get moving as there was work to do.  The director of the facility told us June kept the CNAs moving.  It was one of the reasons we liked the place, they let the residents get involved in the day to day activities and really engaged them.  We got to know June over the course of the past year.  They’d nicknamed her Junebug.  She could have a real temper some times, I’ve seen her throw food, and throw drinks at the aids, and I’ve seen her dance around the facility with a huge smile on her face, and sing at the top of her lungs… which wasn’t that loud as she was very soft spoken.

June had fallen a couple of times and fell hard on Christmas day.  She had a big bruise on her head when I saw her the next day.  It did heal up though.  Her left eye was usually closed, not sure why, but it was.  I liked June.   June died on Friday night.

I’m not sure how old she was, but she was clearly getting weaker and weaker over the past few weeks.  I was there for dinner about a week or so ago and she was over by herself and choking on something, she was surrounded by CNAs and the nurse.  They got her sorted and calmed down, but it didn’t look good to me that night.  I’ve only seen her lying on her bed when her roommate leaves her door open since then, no more moving about the cottage in her characteristic jeans and turtle necks.  We’ll miss you June, God speed.

Dad has been about the same, but I realize that about the same to me is probably still a slow decline to the rest of the world.  He’s now a little over a year in this facility and at the time I didn’t think he’d live 3-6 months.  He’s not really walking well, I’ve been there several times this week, but was unable to go over last weekend as I had a bad cold and didn’t want to get any of the residents sick.  Lately I always find him in a wheel chair.  He can walk, but gets very tired after only short distances and he’s slow to move.  Today he and I walked a couple laps around the multipurpose area, but he was tired. I tried to talk to him for a while, but mostly what he said was unintelligible.

Toward the end of my visit he began to get agitated. Wanted to leave, repeatedly said, “I need to get the hell out of here”.  He’s said this before. I got him in a wheel chair and decided to take him out of the cottage and up to the front of the building just for something to do. He seemed to enjoy the ride and new scenery. When we got to the front, we sat for a minute then I began to take him back, which seemed to piss him off a little bit, I think he really thought we were going to take off for a while.

I got him back and he insisted I needed to help him pack. I let him know I had to go feed my girls, but that I’d come back later and give him a hand. Another tough exit from the nursing home.


One year later

28 November 2016

Its been a busy month, hectic would be an understatement.  I’ve had board meetings for a consortium that I helped create, a technical meeting in San Francisco for 7 days, and then the Thanksgiving holidays.  I’ve been remiss in keeping up with blog posts, but I hope anyone living the life we do would certainly understand.

This week marks roughly one year since dad went from being reasonably independent to his current state of near absolute dependence.  One year ago he was having trouble standing from a sofa after what may have been a mild heart attack.  After a week of hospitalization and the administration of injectable haldol for irritability at the rehab facility he was placed in a psychiatric ward in a near comatose state.  His gradual recovery from the near paralysis to walking, to the eventually down hill slide back into physical decline and mental decline has been nothing short of traumatic.  His diagnosis of Lewy Body was a diagnosis for our whole family and a way of life that has been challenging to say the least.

Of late he has been up and down. Days of agitation and anger, with other days of relative calm and acknowledgement of my presence.  I was concerned he’d finally forgotten who I was for a period of time, but  I received some sage advice and encouragement from a reader of this blog reinforcing that with Lewy Body there is a steady decline, but deep memories don’t just go away, they’re still there locked in. This was in fact exemplified by my visit last night.

helmetDad was walking, with a good deal of assistance from Cynthia the DJ. His helmet they prefer he wear discarded aside on a chair against the wall, clearly he had no intention of walking around with a sparring helmet today.  The wound on his head from a significant fall two weeks ago that had required an emergency room visit and seven stitches was healing nicely.  He was wobbly, so I immediately grabbed him and got in front of his face to announce my presence, “Hi Dad, its Kevin”.  He immediately turned to Cynthia, and said to her, as clear as ever, “This is my son”.  I frequently feel as if he no longer connected me to being his son, but just a nice guy that visits a lot.  But today he knew who I was and was happy to see me.  We walked a bit, then I managed to work our way to a chair as dinner was eminent.

We talked a little, or rather I talked a little. I told him about the N gauge train I was assembling for Christmas to place on the cabinet below our TV. He seemed to understand what I was talking about.  In his day, a huge train buff and model builder. His dinner came and he ate well.

I’d been to the home every day since Tuesday.  Yesterday he was particularly agitated. The whole facility was a bit up in arms over various issues. Gordon the young schizophrenic was agitated as there was no posting of the days meals in the usual spot.  He’s OCD as well, so I’m sure that is driving him crazy. We joked with him to settle him down, and his mood lightened. We talked about a barbeque and he requested brats and a gallon of bourbon. Doesn’t actually sound that bad. Dad had been in a particularly bad mood, struggling with the helmet, even as I attempted to help him remove it, and angry in general.  We all had come that night, so it was tough for the girls to see him this way.

But tonight was better, he’d introduced me as his son for the first time in probably a year, and later, he was eating and I was talking with Cynthia and he wanted my attention to tell me something and he said, “Kev?”.  I hadn’t heard him call me Kev in nearly a year, so I know I’m still in there somewhere.  A modest victory while losing a nuclear war to this disease.

Since last writing, we’ve lost several residents, Bobbi is gone, and Wheelchair Larry is also gone.  Sometimes those that have left pop up again in other parts of the building, we saw Russ this week for example.  I’m not so sure Bobbi is still with us.  Earl is also looking much worse than before as is Marion.  Ginny joined the crew this week and she seems physically in very good condition, but mentally has some issues with memory and inhibition.  She’s funny, yet inappropriate as well, which makes all the CNAs and nurses snicker when she flirts with me.

So Thanksgiving came and went for dad, it was surprising how few visitors and how many residents were there on Thursday. The holiday meal they had on Tuesday before must have been sufficient for many of the families. Now my week off is over and back to work again, so I won’t have the luxury of getting over to see him every day, but its been a good series of visits overall.

Goodbye Arinda

October 25, 2016

Its been a crazy week.  The awareness walk for LBD was last weekend.  We had quite a bit of family in town for the weekend, and the walk was an enormous success, in my mind anyway.  Many photos were published on line, including on the website for  We met several other families whose lives have been affected by LBD, and at least two others that want to help organize an even bigger walk next year.  It was a ton of work, but I can simg_4600ee us doing this again next year, so we’ll see.  I had a woman reach out to me from New Jersey who is currently suffering from LBD, and she want to fly out next year to participate in our walk.  Its exciting to think you may have an affect on peoples lives in this manner, and that hopefully we’ve spread the word, if even just a little farther, about LBD awareness.

I visited dad tonight after a few days away. This weekend my siblings were all in town so rather than inundating dad with visitors, I let them have their own time with him at the home. I had plenty on my plate anyway with the awareness walk last minute preparations. Yesterday I was unable to make it over as I was teaching a lecture at the University of Michigan so needed to be in Ann Arbor. I gave a talk about drug development and I included a motivation slide for why we work in the health care industry, with an emphasis on the patients, and I showed a before and after picture of my dad to the students, just so they were perfectly aware of exactly why I work in the health care industry.

Dad was good today though, he was walking down the corridor, unattended, as I arrived in the memory wing. I walked right up to him and he barked at me a little, “Well are you going to move out of my way or what”.  It was funny as he was in a bit of a grouchy mood it seemed, but when I introduced myself, that immediately reversed and he really cheered up.  We held hands as I walked him back toward the dining room as they prepped for dinner.

We got situated at the helper table where Ruthanne and Wilma Jean, and of course my favorite DJ Cynthia sit, as well as Arinda, my favorite scratchy voiced swear-er who could always make me smile.  Arinda wasn’t there tonight, I thought maybe her daughter Sherry had taken her out to dinner as she does on an occasion. Last I saw her she was in good spirits and doing well. She’s had a cough since dad moved in, so that didn’t seem to get any better or any worse for that matter.  The room was quiet tonight, nobody was really talking and the radio was turned very low.  By the time we sat at the table, Cynthia had actually turned the music all the way off. I asked where Arinda was as her silverware and napkin were also not placed tonight. I assumed out to dinner, then Cynthia quietly whispered to me that Arinda had died just a couple hours ago.

I lost my breath.  Like a kick to the gut.  She was just there Friday. I looked around in disbelief, I wouldn’t put it past Cynthia to make a joke like that as she has a very strange sense of humor. The CNA was there passing out drinks. Two new residents were attempting to get acquainted with the staff and get comfortable with the dinner arrangements.  The CNA looked up to me and nodded, it was true. She coughed really hard a couple hours earlier, they asked her if she was OK and she nodded she was. She coughed a little more and her head went back to the wall where she sat, and she was gone, that fast.

Several of the residents don’t look good right now. Marian, also quite new to the facility has show some significant decline over the past month or two.  Bobbi has been in steady decline for a month or so as well. Wheel-chair Larry was gone tonight, hopefully for dinner out with his family, but hard to say.

I fought back some tears as I thought about Arinda passing. I asked the nurse for her daughters contact information, I’ll send a card tomorrow. Her daughter looked worn out when I saw her at the home.  She’s divorced and taking care of her mom, a tough situation to be in.

I stuck with dad for about 45 minutes, but he was actually feeding himself quite well today.  I had a meeting tonight for girl’s soccer so couldn’t assist in him finishing his meal.  But he was good tonight, so I wasn’t as worried. Since he was doing so well, I think he’d do fine with my leaving early tonight.  His legs are quite swollen, and have been, with the CHF still working away.  I asked the nurse to confirm his diuretic meds, and to perhaps up the dosage a bit.

As I watched him finish a good portion of meatloaf, and carefully spoon his chocolate milk into his mouth (no idea why he won’t just drink it), I let him know that I had to go due to meetings tonight.  A kiss on the head and an “I love you” from both of us I parted the facility.  As I passed Bobbi’s room, I saw them cleaning out her things.

I sent a text to Sandra the CNA… “Where is Bobbi tonight?”

She responded… “Moved to Hallway 1”

Thats not good, but she’s looked pretty bad lately.  My network of senior citizen friends is shrinking by the day.


No more black hat…

October 2, 2016

We arrived in the mid-afternoon today.  Just after lunch.  We had soccer games yesterday and one very early this morning.  8 am kickoff, that meant on the field by 7 am.  It was dark.  There was a lighted field about 3 or 4 soccer fields away, but it was still very dark out as the girls warmed up in the dew covered grass ready for their 8 am game.  A game that no matter the outcome they couldn’t win the tournament, so it was futile from that perspective, but at least it was against a team whose foot skills and ball movement far outclassed opponents her team has been playing of late. Her team is in the wrong division, too low for their skill set, so they’re beating up on everyone they play.  Next season they should be on a more even playing field.

We arrived at the home though, dad was walking a bit.  The home was quiet, a TV program going on in the other room, but no radio blaring in the multipurpose space.  We’d brought dad a chocolate shake, he seemed to enjoy it, but not like he used to.  He seems to be losing the taste for them.  I had noticed this last week when I brought him one and he only drank about half and was done.  He used to polish them off quickly, I’m guessing he’s losing his sense of smell, and perhaps food isn’t tasting as is should.  I do notice at meal times he’ll eat things I never would have seen him eat before living in the home.

He had another big knot on his head.  Above his left eyebrow this time, matched his one on the right quite well.  The first knot is a month old and his skin is still yellow where the bruise is still dissipating. No teeth.  His bottoms have been gone for a while, likely wrapped in a napkin and discarded with food or some trash months ago.  At least with the tops he was easier to understand and could chew his food a little better, but the tops are gone today.  I got conflicting reports if he had his tops yesterday or not, so its unclear.  I know he was missing them last Thursday when I last was able to swing by the home.  I gave the CNAs a hard time about his missing teeth and the knot on his head.  The scrambled to search for the teeth and offered to notify the home so they could schedule a dentist.  There is no chance in hell that he could tolerate someone making a mold of his mouth to fit new dentures. I let the CNAs know it would be a waste of time, and they’d be better off to find his missing teeth or he’ll likely live out his life toothless.  That made my point quite clear.  Hopefully they’ll turn up in the laundry or something over the next couple days.

We walked a little, then sat by the Crosley CD player.  Several of the usual residents, Cynthia, Arinda, Larry, Vicky, all began working their way to the chairs around us. The girls and the laughter and the loud talking always draws in a crowd.  Even when we got up to walk down the corridor a bit, they all got up and began to follow us, a slow moving parade of lost and confused residents following the pretty girls and me while we escorted img_3866my dad.  One of the girls grabbed my cell phone to snap a picture of me walking dad down the hall.  We made it down the hall and made our way back.  My wife supported him on the way back, his breathing was labored, he complained of being very tired from the walk.  The man who once walked a marathon through the French Alps is long gone. My guess today is congestive heart failure and possibly a heart attack will be his ultimate demise.  But my opinion on that changes with each visit.

We sat again and his black cowboy hat was on the rail separating the hallway and the multipurpose space.  I grabbed the hat and showed it to him, and asked him why he wasn’t wearing his hat.  I placed it on his head and he took it off, “its too heavy”.  He held the hat in his hands and looked at it for a minute.

“Its your favorite hat dad”, I remarked.

“I don’t remember it”, he replied.

I teared up a little, my daughter saw, but I tried to look away so the girls wouldn’t see me.  I’ve mentioned it before in this record that I bought that hat for him for his 70th birthday nearly a decade ago and he’s hardly gone a day since then without it.  It gave him a great deal of enjoyment to wear that hat, around the globe. He’s been wearing the hat around the nursing home quite a lot.  The women in the home have commented to me how handsome he was with his hat.

This God damn disease stole that from him today. I feel like crap tonight. I know the day is coming when I’ll be as foreign to him as that hat.