Death and Dying and Left Behind…

My sister died in 2008.  I have written about her before.  She was our baby sister.  I will always think of her as my baby sister.

She died of complications to pneumonia.  It is hard to breathe with pneumonia.  Not breathing well contributes to low blood oxygenation.  Effectively one drowns from pneumonia.  Laura had myelodysplastic syndrome.  It did not kill her.  I was her blood stem cell donor.

During Laura’s treatment it was discovered that she was allergic to virtually all the antibiotics they gave her as a prophylaxis. The treatment for pneumonia is antibiotics.  The solution for MDS is kill off the bone marrow and as a result the patient’s immune system.  The antibiotics given during this process put her in a coma for six weeks.  The doctors supposed that she had veno occlusive disease, a liver problem with a low survival rate. She did not have that.

At the beginning of her treatment before I donated my luekoblasts to her, a nurse and social worker and I discussed the possibility that my blood cells which came with my immune response could actually attack her and kill her.  The discussion centered around, how did I feel about THAT.  I was certainly not excited about the fact that I could kill her.  Presented as my call.  A moral dilemma- Laura will die if I do nothing; Laura may die (sooner) if I do something.  Looking back from the distance of thirteen years my reaction is the same – tears come to my eyes. [I had to stop.]

I remember thinking that I should ask Laura if it was okay if I killed her. I did not. This procedure is presented as do this then that then this and … you are healed. I suppose that they discussed with Laura the survival rate. She did not survive. I will always be somewhat skeptical of doctors and cancer cures. The fact that she died specifically of pneumonia is a distinction of no import. I was there when she took her last breath. I will never forget the silence.

My brother died this year in May. He was my big brother. I have written about him too. He was six years older than I less nine days.

He followed his dream job to Florida many years ago and from that job he went to others always in Florida. His last job was a coder/programmer for a subcontractor to Microsoft. He was a smart guy or at least that is my perception from little brotherhood. Every time I turn on my computer I think of Bill.

Families are complicated. One wants to believe that there is a close personal connection between siblings in the family but that does not always occur in life. Gaps in age, education, life choices, geography and beliefs tug at simple family ties. Our family is no different. We held no animosities but we did not live in each other’s lives.

Our parents Virginia and Robert died about eight years apart. Dad passed away in 2007 about a month before Laura. Mom passed away in 2016. Every time I throw away a box from Amazon or Boxed Up, I think of Mom. I hear her voice, “Paul, don’t throw away that box! That’s a good box.” Mom kept a lot of crap in boxes.

I think of Dad in various situations. He was what we would call today a hacker. When I was a kid our basement was full of old electronics. When he retired he became enamored with computer equipment. He spent a lot of time futzing with computers and programming them. Visual Basic and he were friends. He was always working on something called his Bingo Program. He occasionally journaled too but although I inherited all his computer stuff I have not found any of his writings. I think of him when I write random comments in this blog/journal of mine.

Now it is only Joyce and me. We talked yesterday for about an hour. We did not talk about anything special. I called her merely to hear her voice. It has been thirteen years since our original family group started dying off. For some reason it is important that I hear her voice more often.

She mentioned in our conversation that she is not very excited about turning 70 this year. (Wow has it been that long?) She sent me the picture below many years ago in a birthday card. Laura is in the middle. In her note she wrote – I’m so glad you are my brother. I am so glad you are my sister, Joyce.

Remembrance of occasions and enjoyment of those fade with time. I have often pondered why I remember some things and have absolutely no memory of others. What we were excited about on this occasion is lost in my memory. Joyce found the picture and sent it to me. Obviously it is Christmas time. I am swallowed up in abject joy and laughter. No memory at all about it. I am grateful for the picture of us.

Life and death? — Dad was not afraid of dying. He said as much to the doctor when he was given the news that an X-ray photograph of his abdominal area revealed a mass on his colon. I do not fear dying. I worry that Cheryl will be provided for after I am gone. I wonder if Laura would have lived longer if she and I had not exchanged blood cells. I wonder if she would be alive today if her doctors had simply been smarter about what was going on in her body. Maybe she would not have spent six weeks in a coma. … could have, would have, should have.

Laura told me about a month before her death that my stem cells had taken up residence in her bones. Our life experiment was working. I speculated – how do they know? Her response was – I think because they can look in there and see little X’s and Y’s. Yes, I imagine they could detect those somehow.

In the background of the conversation between Joyce and me was a thought like, I should have asked him (her) that when Dad was still alive, when Mom was still alive, when Laura was still alive, when Bill was still alive. As I talked to Joyce I thought about how short our time on Earth is. Seventy years seems like a long time but it is not. I thought about how fragile our existence here is. At this time in our life a virus threatens lives. Ask those questions. There may be little time to get an answer.



Other morose thoughts — In his late years, Dad would not hesitate to tell you that he was older than his father. Dad’s father died when he was 82. In Dad’s mind he felt that he would live to be 82. As he got closer to that age, he resigned himself to the fact that his life was almost over. He was not worried about dying. His only concern was, would it hurt? I think that was his only fear.

Pain is the only thing that makes me uncomfortable about death I believe that I do not feel pain as others do. I understand Dad’s point of view about pain. I wonder if it hurts to drown. I wonder if it hurts to die of pneumonia. Does a sudden massive heart attack hurt?

Death causes a gap in the family. I have become very aware of that gap in our family. Joyce and I are closer. I believe we are. It is just us now.

Now it is Autumn

Halloween is coming

It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.

In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.

Wildlife abounds

Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.

And more Halloween decorations.

Bush Jack-o-lantern

Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.

The path and stats

Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.

And Parkinson’s still sucks.

Down Today?

Someone posted this quote from Sir Hopkins on Facebook and it passed through my news feed today. There is a Beatles song — Eleanor Rigby — that popped into my head. … ?? …

I have lots of things to ponder. I told Alexa to play the Beatles. Music from a time when Cheryl and I were young. Their music is soothing today. Alexa selected “Let it be” for the first one to play.

Black Bird … calling in the night.

This past week or so we have added two new drug therapies to Cheryl’s meds. They are working and they are not working. In a previous post, I described quetiapine for sleep. It seems to help. Melatonin helps with falling asleep. Seraquel seems to help with remaining so. Although we have had some odd episodes in the bathroom at night, it seems that she is actually asleep during these. At least, she has no memory of these in the morning.

Good Day, Sunshine!

Morning conversation often starts with her inquiring how I slept. We talk a bit about anyone that we may know or a family name that shows in the obits. And the past few mornings she has gotten up before me and had her bowl of cereal for breakfast. Sometimes she asks about overnight. Sometimes I tell her gently in my effort to determine if she has memories of anything overnight. I think the quetiapine is working. She will get up for bathroom trips but she comes back to bed. I know. I get up and go to the other bathroom. I think we are on the same schedule. (smiley face emoji here)

Yellow Submarine — similar shape to Ondansetron

Ondansetron was prescribed for Cheryl’s repeated feeling of nausea after she takes her medicine. She has been taking it for a long time and apparently her stomach has become intolerant of the meds. Zofran was originally developed for those dealing with chemotherapy. It seems to be working well. Although she still lays down in the evening after taking meds at seven, she does not complain of nausea, she complains of fatigue. And that only for a short(er) period of time.

Back to Anthony’s quote

Everything is random and there are no guarantees.

http://www.goalcast.com

As a caregiver, I often find myself focused on observing Cheryl’s behavior and asking her questions about how she is feeling in that very moment. From her point of view, I am probably exhausting. From my point of view, I cannot help it. I love her so much and it tears at my heart to see how this crazy despicable disease has changed her life, mind, cognition and even her personality. Nevertheless I have to keep reminding myself to take time for myself whether that is exercise – walking or riding – or reading or journaling (now). The quote from Anthony Hopkins struck a cord with me. Another way to say it is, “Stop and smell the roses.” One cannot put too much emphasis on taking time for oneself. Balance between giving care and taking care is a delicate thing to achieve.

Alexa just played “Help” by the Beatles

Ask for help before Parkinson’s sucks all the air out of the room and the day is lost. … Oh bla dee oh bla dah … life goes on! [and Eleanor Rigby is playing again]

How do you know when it’s love?

I have a bad memory for names. Authors that I like to read, songwriters I like to listen to rock bands I loved in my younger years, I have a hard time knowing who wrote what or who sings what.

Recently when Eddie Van Haylen died, I told Alexa to play a mix of his music. It played “What is love?” first. I had not heard this song in awhile. I was very touched by the words of this song. I do not know why, but it means more to me now.

Van Haylen

Everybody’s lookin’ for somethin’
Somethin’ to fill in the holes
We think a lot but don’t talk much about it
‘Til things get out of control
Oh, how do I know when it’s love
I can’t tell you but it lasts forever
How does it feel when it’s love
It’s just something you feel together
When it’s love
You look at every face in a crowd
Some shine and some keep you guessin’
Waiting for someone to come into focus
Teach you your final love lesson
How do I know when it’s love
I can’t tell you but it lasts forever
How does it feel when it’s love
It’s just something you feel together Oh oh oh oh
Oh when it’s love
Oh oh oh oh
You can feel it yeah
Oh oh oh oh
Nothing’s missing, yeah Oh oh oh oh
Yeah, you can feel it
Oh oh oh oh
Oh when it’s love
Oh oh oh oh Nothing’s missing
How do I know when it’s love
I can’t tell you but it lasts forever
Uh, how does it feel when it’s love
It’s just something you feel together
Hey, how do I know when it’s love
I can’t tell you but it lasts forever
When it’s love
Uh, When it’s love
Hey it lasts forever
(Na, na, na, na, na) when it’s love
(Na, na, na, na, na)
(Na, na, na, na, na)
(Na, na, na, na, na) give it up We’re gonna feel this thing together (na, na, na, na, na)
When it’s love, oh (na, na, na, na, na)
When it’s love, baby (na, na, na, na, na)
(Na, na, na, na, na)
You can feel it, yeah
(Na, na, na, na, na)
(Na, na, na, na, na)We’ll make it last forever
(Na, na, na, na, na)
(Na, na, na, na, na)

Oh, it’s love Source: LyricFind

Songwriters: Alex Van Halen / Edward Van Halen / Sammy Hagar / Michael Anthony

When It’s Love lyrics © Warner Chappell Music, Inc

When you tell Alexa “Play Van Haylen” — you get a lot of rock songs with a love theme. Somehow that means more to me these days as I spend more time addressing Cheryl’s needs.

Parkinson’s disease sucks. (I have not written that for awhile.)

Make Time & Wellness v. Forced Time & Illness

Last night I found my clothes and Other conversations

The day that we had these conversations, generally speaking, Cheryl was having a pretty good day. When she is in this “pretty good day” mode she remembers many of the funny little conversations we have had in the middle of the night if I ask about them. It is as though she can step away and talk about what she was seeing or thought she was seeing . Her cognizant brain is able to view her in-cognizant brain’s thoughts and interpret them as not quite right or even odd.

We were walking on our 1-ish mile loop

We were walking on our favorite one mile (not quite but close) loop near Mill Creek. She tells me – you know when I get up at night and some times I go into that closet by the bathroom where my pads are and get a new one because it seems like I leaked a little? I have pads in there. Do you know where I mean? Me – yes. The closet by the bath tub you mean? (I am not sure where this is going.) Her – yes. That’s the one. Well, I saw a lot of clothes in there that looked like mine. How did those get there? I don’t remember putting those in there but I’m pretty sure they are mine. At least they look like clothes that I have. (Insert a puzzled loving face here. Most emojis do not work.)

… Patience, wisdom or empathy — which one of those is necessary now? I just go with the flow most times because I am unsure if she is standing outside her thoughts or reliving them. I said to her that we put our clothes in that closet when we moved into our condo. And when I do the laundry I hang your shirts and pants in there if they need hanging so maybe I put them in there when you were not looking.

a foggy day

She responded with – I have no memory of moving. (Oh, poop.) She goes on to tell me – I remember looking at the condo but I really don’t have much memory of the day we moved. She phrased that in a fashion that indicated to me that she knew we had moved to a smaller place about 4 years ago but was simply fuzzy about the details. Four years ago she did not seem to be struggling mentally. I could have not noticed at that time because her mother was still alive and she was making a daily trip to Bridgeway Pointe where her mom was staying. Our life was busier then. Her main complaint was her knees which in my mind was the main reason we moved. Our condo is a flat one floor two bed-roomed affair with a small den that I have taken over for my man-space. There are no steps in or out.

She continued with – If you are looking for my clothes there’s some in there. At least they look like my clothes. Me – yes, I think they are. There are some in a tub too. Those are your winter things that are saved away for the season. Her – yes there are. Now at this point I am thinking she is coming to believe that her clothes are hanging in the closet. But then she says – I am not sure where your clothes are. Me – that’s okay I will look for them when we get home. They might be in my armoire. I will look. She seemed satisfied with that and we walked on talking about other things that were sky and weather related.

Which clock?

our bedroom clock

Early one morning the clock in our bedroom which is electronic and looks like the image above did not alarm at 7AM as it usually does. I woke up anyway at about a quarter after 7 and went to get Cheryl’s meds for 7 that day. I helped her up to the bathroom and after she took her meds and was heading back to bed for a bit she said – I don’t understand how do you know what clock to use. Me – I use that one to get up for your seven o’clock meds. It’s a little off. (I was thinking of the wind-up in the living area which bongs out the hour all day long.) Her – is it eastern time? Me – yes it is.

It was my mistake thinking she was comparing the clock’s displayed time to the gongs from the living room clock. No such thing. What she was really telling me is that this clock is confusing to her. About now it displayed 7:22AM or so because the alarm did not sound at 7AM. She did not recognize that the first dose of meds were a little late but she did recognize that the time was wrong. She could not make that connection.

Admittedly when I bought the clock I thought it would help her understand the time of day. In the picture above it displays “Morning”. it also says things like early morning, evening, afternoon, late afternoon and so on. I turned these messages off because at first she would say – what does that mean? Early morning? It is dark out. It seemed to be too much information so I turned it off. I said to her – yes it is eastern time. The whole daylight savings thing is confusing to her and an unimportant imposition by the deep state agency called NOAA. (smiley face.) It occurs to me that I could “spring ahead” or “fall back” at 2AM. I am often up about then for a potty break about then. I do not think the time police get up until about 6AM.

For the rest of this morning she was tired. And the same throughout the day. It is as though the whole discussion about time wore her out somehow.

Everyday comments

Who is eating with us? Sometimes phrased as – Is (name) here too to eat? Or similar. Is everyone eating? — she will ask when I get her out of her office to eat the dinner I have prepared.

While she is working on her birthday card list or Christmas card list the people that she is thinking about become real to her. Occasionally she will talk to them. She will ask questions and talk about what she is doing.

With the pandemic pandemonium we have had many Zoom meetings – She will ask; Where will they all sit? Do we need more chairs?

Carpe diem – I attempted sourdough bread today … a bust on the first experiment. I guess I was hoping the starter would react like real yeast in a jar. Nope!

Maybe in a week after I can find a better name for the starter other than “Larry the Loser”. Maybe “Jack it Up” or “Spring Forward.” (another smiley face)

Perhaps this is one of those “aha” moments.

We Live life Forward but Understand it Backwards

[Image: Calvin and Hobbes] Hind sight is 20 – 20 but prescience is foggy at best.

God is in everything… Dolly Parton

She says this a lot. I have heard her. She merely blurts it out in the midst of conversation with an interviewer. She is a very upbeat and happy person.

How does one develop that attitude? Is it innate? Is it learned? Is it contagious? Happiness is contagious. Do something helpful and good for another and it stays with you for a long time. Is this why the ultra rich start a foundation to give their money away?

I have noticed that this seems to make some people of lesser means jealous. They may not be but it seems that some of the most vicious attacks on some ultra rich guy giving away his money in a fashion he so chooses cannot be explained any other way.

So how did Dolly become a happy person? She is satisfied with her life and comfortable in her own skin. She needs no more than that which she has.

Is everyone able to do this? I would make the case that they are able regardless of income level. Look inside yourself.


Me. What makes me happy?

Many things make me happy. Anything that is not stressful. I made a list.

Happy
  • Love
  • Trust
  • Esteem of self
  • Esteem of others
  • Caring for Cheryl
  • Seeing Cheryl happy
  • Seeing Cheryl untroubled
  • Riding my bike
  • Listening to audio books while riding
  • fresh air and sunshine
  • Empty thoughts while riding
  • waving to like minded people
  • conversing with other riders
  • Mindfulness, emptying the mind to feel the world
  • Routine and order
  • Reading – both novels and non-fiction
  • Understanding how physical things work
Stressful
  • Remembering everything to do
  • Remembering meds as Cheryl forgets
  • My sister-in-law who is able point out flaws in my viewpoint
  • Social media politics
  • HOA issues – I am president of the HOA
  • HOA maintenance stuff
  • Seeing Cheryl troubled about ability leaking away
  • Seeing Cheryl confused about simple things
Mind Puzzle

I am gladdened to discover that my happy list is much longer than my stressful list. I am emboldened to note that I have little control over the stressful list. I am excited to realize I can limit exposure to the stressful items.

It is easy to go through life looking backwards with regret. Or looking backwards and wishing for the old days. Time only moves forward. The future is impossible to perceive. Man plans and God laughs. Plan for every contingency and then buy insurance.

Platitudes. Life is full of platitudes.


Carpe diem!