"The Long and Winding Road"

” Although I search myself, it’s always someone else I see
I’d just allow a fragment of your life to wander free
But losing everything is like the sun going down on me ” words by Bernie Taupin, Music by Elton John

Dear Reader,

October 23, 2019 4: 10PM Caregiving to a memory impaired loved one is a very tough business. I’ve been at it for eleven years. Couple it with a downturn in personal income and it is the perfect formula for a depressive mood. I have been getting up early, well before daylight and working my “to do” list as best I can. I must keep fighting and executing. I have been in online productivity & motivation groups in my past and always stayed positive. I was a very positive impactful, inspiring individual to the groups. I listened actively as I also am a graduate of “The Landmark Forum series.” It was easier because things were going my way.

Now, things are in the opposite direction. This morning I had mental and emotional letdown with Deb. Every morning Deb does not want to get out of bed. Nearly every morning I have to gently hug her and pull her up. Her clothes for the day are laid out.

11:00 AM, I enter the bedroom and announce, “Honey, it is time to get up” We’re going to Maria Cares today.” Deb doesn’t reply. I move to her and say, C, mon now, it’s 11 AM; time to put your feet on the floor. ” No, I don,t want to.” is her answer. Now my brain is talking to me. ” I have to deal with this every day. This is just like the movie, “Groundhog Day” with Bill Murray.” This is fucking killing me.”

I put my arms around her and lift into a sitting position. ” You need to get dressed now and I’ll put your coffee on.” “What for? she asks. “Because you need to get out with other folks. You always have a good time there. When I come to pick you up you’re happy and smiling. Sometimes if I’m early, you tell them (the staff) to wait until you’ve finished the game your playing.” She replies,” Well, I don’t care. I don’t want to go.” She laid back in bed and pulled the covers over her like a child who doesn’t want to go to school.

So, now I’m over the edge and I go and bring her the phone. ” OK, I want you to call your sister and ask her if you can come live with her.” Tell her Tom makes me get up every day before noon to do things and you won’t do that to me, right?” (She actually called her sister but there was no answer). I then dialed my daughter in Miami and asked her to call Deb so that we could get her up and dressed. Kory is an awesome offspring. I love her dearly. Deb had her coffee and we arrived late at the center at 12:20 PM.

The business part of the day was brutal and negotiations difficult. I knew my blood pressure was up so I went to the gym after dropping Deb off and put in a 25-minute upper body workout. ( I recently gained my certifications from NASM (National Academy Sports Medicine) in Personal Training, CES (Corrective Exercise Science), and soon Senior Fitness. It was a motivation stemming from my caregiving. I need to figure out how to monetize it.

It is 5:30 PM now and I was reflecting on the way to pick Deb up how things could be much harder. I mean Deb is happy and I will explain why in a future post. It is true she has nearly no short term memory, and because of that, no real motivation in life. But she is a miracle for having survived 4 cardiac arrests in a span of an hour. She died 4 times, 3 of them in the ambulance on the way to the hospital. Since I live in that caregiving life, I am around people who are dealing with loved ones that have the insidious disease of Alzheimer’s.

Dear Reader, thank you for listening.

October 15, 2019

Dear Reader,

I woke up this morning at 7 AM and went to study my NASM CES course materials as I want to take the exam before the end of this month. Anothe rrealization came to me as I mailed my 2108 tax return. This is more debt on top of the existing debt. I have a plan to reduce my Debt in the next 12 months by 20K, which will essentially cut it in half and goive me breathing room. The stress of my life would destroy most other men. I have another view that keeps my blood pressure somewhat in check.

The brain….yours and mine, likes to create stories that are very rational and designed to protect yourself from the real stresses of daily living… with the issues that are pressing and don’t stop applying pressure and increasing one’s anxiety. I realize that life is somewhat of a bad joke. But I also know that Deb depends on me 100% to care for her. I love her and want to keep her safe and well. The money issue invades my brain and shoots me feelings of failure. I’m not a failure and I have made mistakes in staying in a business game too long and acquiring excessive debt.

So I need about three more clients to see me through this cash crunch. That means outreach is critical. Anyway , dear reader; about the day today. I need to stay focused on the “now” of everything. I have my “To Do” list for tomorrow and beyond.

Today , I worked from 7:30 till 4 PM with a break to get Deb up and a meal. At 4PM, we went to the beach to walk and relax (me). Deb’s always very relaxed. More on that next time. We got home and I went to the grocery store right next to us and picked up some things for dinner. I had Deb get in the shower and wash her hair while I made dinner. Now I am sitting here in my office writing this. Out of all the things I worked on today in the business, making dinner gave me the greatest sense of accomplishment.

I pushed myself to get it on the table. Deb enjoyed it. I think I will put in a workout now. It is 8PM. The workout (30min) will help me sleep.

Thank you for reading Dear reader.

So we are back from our trip to Miami where our daughter Kory resides. We spent the night in her “Pad”; on the 29th floor of a high rise with a close-up view of the downtown Miami skyline. At night it is quite an impressive view. She made us a homemade meal that was so delightful! It is a really special occasion when I am eating food that I did not prepare and sharing the meal with my family. This doesn’t happen often enough.

Sunday, October 6, 2019

Anyway the trip was a winner all the way around. My meetings were good. Deb spent Friday with Kory. The 4.5 hour traffic cooperated back home Friday evening.

Let’s get back to the title of this post. I got up late because it looks like rain. I feel good. Its 8:30 AM. The income is starting to come in on a more regular basis. I worked on the Personal Training website for 6 hours yesterday. The frontpage is complete with the help of my Acrobat subscriptions (Illustrator, Photoshop). I have been thinking about making the quiche for the last week and this morning is my chance. The Publix grocery store is literally next door to our condo. I,m back in 15 minutes with all I need for the quiche. ( dinner also) I had the eggs, zucchini, yellow squash, red pepper, garlic, onion, and seasoning. I needed smoked gruyere and a frozen pie shell. (No, I am not making a scratch pie shell.)

Deb wasn’t getting up on this cloudy Sunday morning. She did ask me where we live. I have our address on the wall next to the pass-through into the living room. I don’t nag her on Sunday for my sake…not hers. I couldn’t wait any longer so I ate a piece. She’s in the kitchen now as I write this emptying the dishwasher after having her fabulous brunch. She looked up at me from the table as I was standing next to her as she lifted her fork with quiche and said, ” Isn’t cooking fun, honey?”

October 2, 2019

Dear Reader,

Caregiving for a memory impaired (no short term memory) and TBI (traumatic brain injury) loved one can be frustrating. One of the things I really miss is not being able to have a meaningful conversation.

Deb will ask me when I pick her up from her recreational care center that she attends 2 afternoons per week; ” So what did you do today?” she asks. I will start to tell her about my afternoon and she will get distracted after 30-60 seconds and say something like …” Look out for that car!”

I must always keep the word “Patience” in the front of my brain. Things are as they are. Sometimes that is hard depending on my frame of mind. I do my best. I still long for more intimate conversation. It’s 6:30 in the evening and I just switched from writing SOP’s for a client I am meeting again Friday morning in Miami to sharing here in this space. Deb and I will drive down tomorrow afternoon and stay at Kate’s overnight. I will go to my meeting Friday morning and then we will drive back to St Petersburg Friday afternoon.

We just need to laugh and dance together….. reader,if you are out there…Thank you!

My last post was more than 10 months ago. I got away from writing in this blog. I’m not sure why, but in my head it was always talking about how there is no time for this space. It is Sunday afternoon and I just said that I need to get in this place and just write…so here I am. So, how do I feel about my life? I have senior high blood pressure now. I need to manage it down. My caregiving of deb I know is a factor in the tension and pressure I feel in my daily life. Sometimes it gets so hard when the person you spend most of your waking hours with has no short term memory. This morning upon rising, I stayed in bed an extra hour as I drank that third beer last night which I knew would make me a a litle sluggish…below the normal level that one has upon rising for the day. The first thoughts were how my stomach feels ….it hasnt been quite right for about 2 months now. I think the stress and tension I have caring for Deb, running a business, earning a living, and deal with the pressure of trying to get the Body Right Nutrition brand off the ground is increasing anxiety. The key thought for me right now is to just know that this day is not a given. I could be gone in an instant. Believe it or not, it’s a comfort thought and somewhat empowering. So is reading the al-Anon book, ” The Power to Change”.. There is a daily reading. Today’s reading was rather applicable to my life as most all of them are not only for me, but really most folks. The passage was about getting up in the morning and not letting your “thought Demons”grab you and take you to all your created (not real) and real urgencies that at times tend to override my life. As an alpha male caregiver, I often do not take the time to enjoy some time that is quiet and mindful of this favorite part of my day.

Thoughts of my failings with “the Brand” is where my “talking brain” wants to carry me. This morning I will enjoy my cup of Joe and choose to perform pleasant tasks… like watering the plants. ….So these things I did.
And then the caregiving comes to the front. We are going to UUC this morning for service and it is time to get Deb up. There is no other way to put it other than to say it is like getting a uncooperative 7 year old up and dressed……every day…..every day. It’s like groundhog day. Yes, every day is like groundhog day. I get her clothes out and coax her out of bed. “Deb, it is time to get up now.” “No, leave me alone.” she moans. “It’s 9:30 and we need to be at church at 10:30.” No , I don’t want to go.” Well we’re going so let’s get up. Now, it is time to try little levity to this every day time trial. “If you don’t get up I am going to sit on your head and eject one of my pleasant morning farts” “Go ahead..I don’t care.” So, now I go and hug her around the shoulders and pull hep up to a sitting position. I cajole her quietly because I am actually now thinking about lowering my blood pressure. It is not worth raising my frustration level any more than necessary. “Now please get dressed and then you can have a cup of coffee” “feet on the floor and let’s do this, ok? All this is a result of her anoxic brain encephalopathy. She is now dressed and having a cup of coffee. We are out the door to go sing some songs and enjoy the church community. ”
“Go in peace, make peace, love mightily, and bow to the mystery.”

It is late October on Long Island. The leaves on the trees are just starting to turn. The browns,reds,golds,greens of the trees create a stunning backdrop against the vibrant, cloudless blue sky as I look up from the sidewalk outside of South Shore hospital. The air is crisp and cool with a gentle south breeze coming off the bay. I love the smell of the salt air in autumn. It’s so fresh and clean.
Inside Deb’s room, I find her sitting in a chair wearing a white with green print flower pattern hospital gown.
Deb has been learning to climb up and down a short set of 6 wooden stairs with a platform at the top and rails all around.
I have been trained in how to support her as we walk side by side down the hall and back. We have graduated from the walker. Her balance is improving day by day. Her movements are so slow and the realization that she has no short term memory is
crippling my thoughts. “Deb, do you remember I was here with the kids yesterday?” I ask. “No” she replied. What did you have for breakfast? again I query. “I don’t know”, the answer. “Why are you here in the hospital, what happened to you?” I ask, continuing to test her. “I don’t know. What happened to me.” “You suffered four cardiac arrests about a little over a month ago.” I tell her. “I did? ..Why?” she questions. “No one really knows why it happened, but you were complaining to your girlfriends that you were having palpitations weeks before. Then you heart stopped and they restarted it three more times in the ambulance.” I explained. Her eyes got big with amazement as I told her this. “Oh God! she blurted. Many people had told her this over the course of time, but she just couldn’t remember. She could write; albeit sloppily at this point. She could read, but her brain is severely damaged….no question. Dr John was the physician charged with Deb’s physical therapy to bring her to the point where she could be released and come home. The time had come. On one of the medical discharge papers the prognosis for Deb was right there in black and white. Anoxic Enchephalopathy: Prognosis Very Poor. It was Halloween, October 31st, 2008. The weather was beautiful, 60F. We had a jack o lantern lit on the front porch stoop and candy awaiting the trick or treaters. Deb wanted to make dinner for me. I let her try… Chicken breasts with broccoli. It didn’t work. She couldn’t stay focused on the steps required. In my head, the voice said. “OH Jesus, my life has transformed. I’m in our home, my wife is still with us. LIFE IS A MOMENT BY MOMENT THING. ANYTHING CAN HAPPEN. MY CHILDREN SO SADDENED BY WHAT HAS REALLY OCCURRED. THIS ISN’T A MADE UP STORY. THIS IS YOUR LIFE. And so, I felt very different. A feeling of acceptance and the knowledge that this journey will require a much greater patience than I had ever shown in the last 55 years. I entered a brand new, but strange and frightening world. I remember Diane my sister-in-law saying to me. “Tom, you are a soldier, you will be taking Deb everywhere from now on like two peas in a pod. I still needed to cry, the sadness was almost overwhelming, almost. I came back to that Neil Young song I knew so well…..Harvest Moon… It captures the hope.

October 4, 2008. Is this a dream or is this real? I am back in her ICU room. It always feels cold in here. Now that Deb was conscious, various tests could commence. Deb was very confused and her cognition was very feeble. She recognized the kids right away and her mom. Other people were less clear to her. She wasn’t doing much talking. She was so frail. There was so much uncertainty swirling around like a small waterspout in my head. It’s the “not knowing” that gnaws at your gut and makes you dizzy and weak on your feet. I felt like I was in a movie that was going to have a bad ending. Still, I knew I needed to be strong for my kids. I kept thinking about what they must be going through. “How they were handling the shock of it?” “She needs nourishment” ..my brain back focusing on her. The first priority was to see if Deb could actually swallow of her own volition. The speech therapists explained that they would perform a food test this afternoon. This consisted of putting a small amount of applesauce from a very small spoon and determining if she could swallow, like a baby. She took it down, no problem. It took a few more days and she was now talking more. But there was so much she didn’t remember and she was very confused. As for the cardiologists, the tests came back that Deb had suffered multiple ventricular fibrillations. The heart’s electrical activity becomes disordered. When this happens, the heart’s lower (pumping) chambers contract in a rapid, unsynchronized way. (The ventricles “fibrillate” rather than beat.) The heart pumps little or no blood. Collapse and sudden cardiac arrest follows. From the tests her heart rhythm now has a “bundling” component to it, which means there is a very slight delay in the rhythm compared to a normal one. They explained that ” we would put a defribillator in her chest, but at this time we are not certain of her ultimate outcome and condition.” The brutal reality to this conversation was that they weren’t sure if Deb was going to have an ambulant and cognitive existence. Or more simply put, she could live severely impaired, close to vegetative. It was now October 8, 2008. Five days had passed since she woke up. Deb was now recognizing her friends and family, this was a very good sign. In the cold room of the ICU I was now with the head neurologist, Dr. R.,
and we were having a conversation. I was with Dr. R. because I essentially fired the first two neuros that were assigned to Deb. There was nothing positive coming out of their mouths and so I demanded that I see the head of the department. When I met Dr. R. for the first time, I explained to him that I was pretty clear on the downside with respect to Deb’s condition; you know.. the worst case scenario. I just didn’t care for their “cold bedside manner” I guess you could say. I needed a little positivity. He looked me in the eye and gave me an understanding closed smile. He also delivered good news. “Tom, we are going to move Deb down to the Cardiac Care Unit on the third floor. She is out of life threatening danger and we will continue to perform tests and monitor her progress. She is a real survivor from a probability standpoint. “From the CAT scans her memory areas appear to be damaged and we aren’t sure of her cognitive function. At this point, it was a small lift we needed.
So now we were getting Deb out of bed and wheeling her around down the hall in a wheelchair. She was smiling, and that was our Deb we knew, but she was also not the same. Her cognitive and memory functions were off. She also had balance issues, but she was using the bathroom with help getting in and getting out, and she has control. Another huge win for us. It seemed that the basic voluntary functions were intact.
The community of Amityville was being so kind to us. Food was brought to us at the house. So many folks were supportive. Deb was born here. Before our marriage, she was Debbie Heller and the connections went deep.She was big hearted, caring, loving and the greatest mom. Everyone loves Deb. Her parents came here in the 1940’s and her father Alvin, now deceased, aka; big Al, started the family plumbing business. And from him, she inherited the aforementioned soulful beauty.
The days now were consumed with all sorts of testing and getting Deb into a walker. She was shuffling her feet on the floor now. Here come the Cardiologists down the hall. Dr B, the surgeon with no real people skills as far as I could tell states, “Mr. Stratman, we are going to put a defribillator in Deborah’s chest. It looks like she will be leaving us in two days. We have scheduled it for tomorrow morning. We just need you to sign some paperwork.” It was October 10th. The surgery was completed, no issues. Deb wasn’t going home though. What was her diagnosis and conclusion? Anoxic encephalopathy, a condition where brain tissue is deprived of oxygen and there is global loss of brain function. The longer brain cells lack oxygen, the more damage occurs.
She was being taken by ambulance to South Side Hospital on the South Shore of Long Island where they have a “Physical Medicine Department” This is where they hopefully will get her walking again
without an aid, and restoring her balance. Deb was pretty famous among the staff that provided her care. From the orderlies to the nurses on up, they were really amazed that she survived with the faculties she has. She beat the odds. She is a miracle. She’s really not supposed to be here. For me, I was still having that “out of body experience”. The shock was still with me. It’s been a month of uncertainty. I haven’t been working. I haven’t been sleeping. The bills have gone unpaid. My children are different. Everything is so different. I still have harmony. I mean the musical kind. It soothes my nerves. It brings me up, but it doesn’t last when I leave Kenny’s “living room”. It’s like a short lived “happy pill.” I can only focus on the now. And the “nowness” is the question, “where is this road taking us? ” Click here for the song.
“Carry On / Questions” Crosby, Stills, Nash from the “Album Deja Vu” 1970

One morning I woke up and I knew that you were gone.
A new day, a new way, I knew I should see it along.
Go your way, I’ll go mine and carry on.

The sky is clearing and the night has gone out.
The sun, he come, the world is all full of light.
Rejoice, rejoice, we have no choice but to carry on.

The fortunes of fables are able to sing the song.
Now witness the quickness with which we get along.
To sing the blues you’ve got to live the tunes and carry on.

Carry on, love is coming, love is coming to us all.

Where are you going now my love? Where will you be tomorrow?
Will you bring me happiness? Will you bring me sorrow?
Oh, the questions of a thousand dreams, what you do and what you see,
Lover, can you talk to me?

Girl, when I was on my own, chasing you down,
What was it made you run, trying your best just to get around?
The questions of a thousand dreams, what you do and what you see,
Lover, can you talk to me?

It’s now Thursday afternoon,, October 1, 2008 and we are still hanging on, but time is taking it’s toll on us. Deb is still unconscious and moving both arms up and down very slowly , straight up and down, like the blades of a windmill.
I have still been singing accapella, changing her diapers when needed, and the family has stood extremely tough and outwardly positive against “what could be”. A few of our close friends were still coming and giving us much needed support, particularly the two “Eileens” who were so caring right there “in the moment” with us. Kate and Alicia were working during the day or evening as they needed to be outside this environment and also with friends.
However, on this particular afternoon Alicia was with me when the surgeon came into the room. He had a clipboard in his hand with papers on it. I knew why he came. It had been explained during this week that the breathing tube had to come out as pneumonia, staph, and strep were all real possibilities as that tube was doing damage to her tissues and water was building up in her bronchial tubes. They were going to have to “trache her”; an abbreviated vernacular for performing a tracheotomy whereby they open a hole in her throat and feed her by tube. In other words, it was a step to prevent more deterioration in her condition, plain and simple and she needed nourishment.
I remember this physician because of his manner. He was so “matter of fact”, his demeanor silently spoke “this is what I am going to do and I have no emotion invested”, as it should be with the profession. He’s probably performed hundreds of them. I didn’t ask. But that isn’t where my emotional state was. Every evening after 10 PM this past week I was crying and despairing. I was with my close friends in the “living room”. It was Kenny H’s house. For years, it was where we went to jam almost every Friday night. The equipment was all set up in the living room. We would go to a club or bar where groups we knew had a gig and then return to the living room to Jam until 1 AM. There were nights I walked home; only a mile and a half and I more than half “in the bag”.
“So Mr. Stratman, these are the consent forms to perform the tracheotomy tomorrow morning.” the surgeon stated somewhat plaintively. I looked at Alicia and then I looked back at him and said, “Doctor, please give us some time to talk about it. Could you kindly leave the papers here and we will give them to the nursing staff?” “I really appreciate it.” We sat in the two chairs that belonged to the room. “Li, what do you think? I mean if we don’t consent now, we have until next Monday. These guys don’t work on the weekends.” I waited for Alicia for a few moments and then she said, “Dad, I don’t know but it’s only another 3 days. Mom keeps moving in bed, she responds to some touch now (squeezing her toes).” That was what I needed to hear. “Okay, Li, let’s hold on over the weekend.” She replied, “Good, Dad.”
Sunday, October 3rd was a windy, chilly overcast day. It was Sunday and lots of family was visiting Deb. The room was crowded with chairs and lots of chattering noise. Flowers all over the place. It was early afternoon and Deb’s eyelids were quivering suddenly. “Come on Deb, honey, wake up. I and everyone else had been commanding her to open her eyes for the last 10 days. Her brothers, sisters, friends, her children…, the doctors, the nurses.. Today was the day. She opened her eyes and I asked her, “Deb, do you know who I am?” She replied, you’re my husband.” What is my name? I asked. “Tom” she replied with a smile. Her voice was so weak. The news traveled fast….and now the other questions needed to be answered. Can she swallow food? Can she walk? Can she remember? Can she control her functions? Can she get up?
Does she have a sense of balance? How is her cognition? So the joyous feelings dissipated for me as my “always talking” brain wanted answers….
During those recent sessions in the “living room”, Kenny brought up Neil Young’s “Harvest Moon” on his acoustic guitar and I worked on the lyrics and the “A” harmonica.
This song puts me right back in this space and time with such a feeling that I can’t describe. I have no words for it. It is so beautiful to me. The Harvest Moon began October 11th, 2008. Eight days from this momentous Sunday afternoon.
Click here for the song.Harvest Moon In the Key of D, Neil’s favorite.

“Harvest Moon”
Come a little bit closer
Hear what I have to say
Just like children sleepin’
We could dream this night away.
But there’s a full moon risin’
Let’s go dancin’ in the light
We know where the music’s playin’
Let’s go out and feel the night.
Because I’m still in love with you
I want to see you dance again
Because I’m still in love with you
On this harvest moon.
When we were strangers
I watched you from afar
When we were lovers
I loved you with all my heart.
But now it’s gettin’ late
And the moon is climbin’ high
I want to celebrate
See it shinin’ in your eye.
Because I’m still in love with you
I want to see you dance again
Because I’m still in love with you
On this harvest moon.