Reliving the ugliness

I'll preface this by telling you that this was hard for me to write. I wrote it days ago and had to leave it for awhile before coming back to it.  So, here goes.

Once in awhile I suddenly think about certain things that happened last year.
Awful experiences that Gary went through, but that I can't write about explicitly. It's just too painful to share and I doubt if I would ever be able to speak about all that occurred when there was no one present but Gary and me. 
I don't understand why these events happened, but I just know that they should not have, so I tried anything and everything so that the episodes we both suffered through did not happen again.  I became militant about giving Gary his pills at exactly the right time.  I didn't consult the neurologist about changing doses, I reread all the side effects and contraindications of each of the 6 drugs he took for Parkinson's and the 5 others he took because of the cancer. I juggled the pills' dosages and cut them by half or more.  I knew that Gary wasn't able to digest food properly anymore, so I knew it affected the absorption of the drugs in the gut.
I think some of seizures he had were due to unregulated blood sugar too.  Having pancreatic cancer means you are thrown into diabetes because the pancreas normally controls insulin secretion but his no longer did its job.
Gary would black out with his eyes fixed and staring and just collapse or crumple to the ground. I will admit that whenever this happened, I was scared shitless because I was so not prepared for this to happen.
He fell in a parking lot, ruining his glasses, his face and head bloodied and bruised in the process.  At first he wanted to get the lenses replaced, but gave up as the weeks went by when he surmised he wouldn't need them much longer.
He fell in the trailer in Mesa. When he came to, and since I could not hope to lift him, I had him crawl on all fours to the safety of the bed.
He fell in the hallway of the house after we moved here.  He fell one day on the concrete front entrance of the house, hitting the rough stucco wall on the way down with his arm and hand because he tried to catch himself. That time he did remember walking toward the front door and then regaining consciousness flat on the ground, looking up at the ceiling of the covered entrance of our house.
There was never advance warning to these spells, but I did start to recognize them as they were beginning to happen.  I could talk or shout at Gary and he could hear me he said, but he could not react or respond.
He fell into the closet in our bathroom, luckily landing on his back on the carpeted floor, but only after he hit the doors and knocked them off their tracks. I did manage to grab his arm and hold onto him a few times to break his fall and avoid him hitting anything sharp.

We were also always aware that Gary could bleed to death very quickly so he was vigilant about watching for blood in the toilet. After watching him throw up nearly a gallon of blood(they measured it) in the ER in Redlands, Gary was literally scared to death about this.  He told me whenever he saw blood, because it meant going in for transfusions ASAP.

Thank God he never fell in the shower because he sat on the bench.  Whenever he was in the bathroom for any reason, I asked him constantly if he was ok and it became the norm to watch him at all times while in there.  Gary had to have my help to get into a sitting position from the bed, so I always waited for him to finish in the bathroom and help him back to bed. Similar to how a husband sees everything when his wife delivers a baby, I saw everything about Gary's body those last few months of his life. We were beyond caring about modesty.

I am reminded of these memories when I see gouges in the wall and door frames from where his walker hit them.  After I got back from Sioux Falls (without the walker) I removed every hideous bit of medical aid equipment we had for him.  I hated the sight of them.  I got rid of the tape that he and I taped his tubes to his skin with after cleaning and feedings. I threw out anything that had come from a hospital. I donated the scratched eye glasses that he wore to watch TV with, even though he could not see well through them.

Dying this way is soooo ugly. I despise what became of my vibrant, handsome, funny Gary.  Cancer, and the deadly chemo side effects because of the cancer, stole his life from both of us long before he died. 

Seeing the things I saw and living with someone who went through this is why I don't think I could do this caregiving gig ever again.  Neither of us asked for the job, and you do it for your dear one of course, but given the choice of doing it all over again for someone else or as a career-- forget it.

I write about this without going  too much detail because these scenes are burned in my mind forever.  No one else but me experienced this and it was not good.

Last Sunday as I vacuumed and saw those marks on the wall again, the visions came flooding back into my head. I was suddenly struck with the revelation that there was NO WAY that Gary could have lived longer in the condition that he was in.
NO WAY!! Neither of us could even have willed him to live longer.
Gary's condition became the opposite of someone with Alzheimer's.  He had the same mind as ever but he was trapped in a body that was disintegrating out from underneath him. It actually helps me to know this as fact.  Neither of us would have wanted to go on as we were.  It was an honor to take care of Gary and be his only advocate.  I loved caring for him and having him need me. He was so sweet a patient, but it was very hard to do the painful things I had to do TO him in the name of caring for him.
It was time. That's all. 

Baby Come Back

Here's some background noise for you to reminisce by with me--

I listen to Pandora a LOT these days.  I have created a couple of personal stations in which I have chosen the basic era of music and artists of my liking  This song, which I had not heard in a long long time, came on this afternoon.
I do love music from the 70's because it was my coming of age decade. The most drastic physical and life altering events happened to me in the seventies as I went from a teeny bopper 13-year-old in 1970, to being married and pregnant by 1978.

I got to really listen to music on my FM radio on the way to work because by 1978 Gary and I were living in our newly built house in Red Rock Estates just outside of Brandon  It sat on 1 square acre on which we, like everyone out there,  planted with hundreds of tiny Soil Conservation sticks that we hoped would survive the winter and eventually grow into trees.
The 12-15 miles Gary and I drove to and from our jobs each day enabled us to listen to cassettes or the radio. And because it was 'such a long distance' to drive, we got to listen to quite a few songs in their entirety.

The lyrics of most songs back then were about finding love, losing love, lost loves, making love(remember Afternoon Delight?) or giving up on love.  The words kind of went over my head though. I just sang along to the music not feeling much about the message of each song, but enjoying the melody and memorizing the words.  I'm quite sure that Gary never bothered to learn words to songs.  He listened to the radio non stop when he was working building houses, yet if I were to ask him if he remembered the words to a certain song 15 years later, he'd say, "I don't remember". Music was simply not important to him. Also, he routinely said, "I don't remember." to any question I asked him.  That was Gary.

Nowadays, music is important to me because I can listen and produce images I have not recalled in many many years.  This song played on the radio of my 1978 Brown Jeep CJ-7 hardtop.  That was a pretty nifty little machine which got about 13 mpg. When gas escalated out of reach at more than 79 cents a gallon, I decided enough was enough and the Jeep was sold after we got the blue Datsun 310 which more than doubled the Jeep's mpg. (Our cars and their mileage are also things I remember quite clearly)

Today when I heard, "Baby Come Back" I think it said to me what I wish I could say to Gary. I loved those years even though they were full of lots of work and change. We were making our life into what we wanted it to be.  We had a little boy on the way, we had good jobs and a big beautiful new house of our own.

If I could get my baby to come back, I would take him as he was in any of the nearly 4 decades we knew each other, but I think I'd like him best to come back as he was as a 50-year-old over the 22-year-old he was in 1978. Our life together had gotten only better and better.

There must be a reason why I remember details about all the passing years. I need them now more than ever to get me through the days alone.

Memory- sharpened

Vroom!! The #42 car with Hopper behind the wheel

Being a territory manager had some odd perks, but perks nonetheless. When the branch had its location across from Auto Club Speedway on Cherry Ave in Fontana, Gary would sometimes open the yard on Saturdays and sell sheds to people driving by.  It was fairly lucrative in the days prior to the sales done now through Costco Roadshows.

One Saturday a couple of years ago, Gary lined up a promoter to bring in a race car from Irwindale Speedway who wanted more exposure for his car.  They unloaded the car from the trailer and invited Gary to sit in it for a few minutes. Gary had to climb through the window and was surprised at how sparse the inside was. He was given two passes to drive a race car on the track over in Irwindale.  He never wanted to use the passes for some reason though.  I guess his 'need for speed' was satisfied that day on his parking lot. I snapped this photo of him but never kept the original, instead shrinking it down to use as an icon for my yahoo account.  Its 3rd generation and very grainy/pixely, but I wanted to show off a picture of Gary that most have never seen, and one that I took for granted until recently.

>sigh<

I am surprised at how I can sometimes go for a day without being sad to the core, then something minor will just expose a nerve. Today it was pencils. Pencils!
We have all these pencils in the house that one picks up wherever, whenever.  Most of them are pretty old, printed with names like Frisbee Plumbing, Daniels-Olsen Building Products, Fullerton Building Products, LifeSource organ donation. These pencils go back to the cabinet business days in Sioux Falls. There are some newer ones like County of Ventura HICAP. I recall the day we got that one because our PD group got a bus ride to a seminar there.
One thing I remember is Gary always held the pencil he was using in his mouth while he worked so as to have it handy when he needed it again.  Therefore, most of our pencils have Gary's teeth marks on them. 
Another common trait these pencils have is that the majority of them resided in a koozy out in the garage on one of Gary's toolboxes.  He has a small wire shelf on the side where these pencils, plus a few flat carpenter pencils with Hopper Cabinet Company on them sat waiting to be used to mark cuts or figure math equations on whatever he was building for the house. Some of these pencils migrated over time inside the house where I grab them and use them if they are sharp enough.
I was noticing that many were short, dull or had broken leads.  I got out the electric sharpener and started making clean new points on them, when I noticed that a few had been hand sharpened by Gary using one of the 20+ retractable knives he has out in the garage.  Only after I had sharpened up about 3 of those pencils did I stop and think about what I had done.  I ERASED Gary's handiwork on the pencils!  Its so dumb, but I feel horrible about it.  I went out and found more pencils that he had hand sharpened this way.  I studied them and thought about how his hands were the last ones that had held the pencil before mine do now. I was so sad that this little piece of him is gone on the pencils I have sharpened.
Because I don't have Gary anymore, the things he touched take on major importance to me.  I look back on receipts that he signed (if you can call a loop and a line a signature) and I just MISS the person whose hands left these mementos of himself everywhere.  I want to see and hold those hands again that worked so hard and were always banged up and roughened from being used so much.

I went to a grief group last week which, surprising to me, had 14 widowed persons that evening. One of the group members was bothered that after only a month after losing their spouse, they felt numb and were unable to cry. They had to drive past the hospital where their loved one had died each morning and evening but all they felt was a deep depression and not grief.  The counselor suggested that grief takes its time and we can't control how long it lasts or when it comes and goes.  It ebbs and flows precisely because humans can't absorb the pain of the loss in a specific time period all at once.  Our capacity to grieve is only acheieved in bites; sometimes small, sometimes large, but never all in one sitting.  The counselor asked others what they do to jumpstart feeling grief when they need to.  One woman said she listens to music. Others said to touch and feel items of clothing or toiletries of the spouse.
My answer now to this person, would be to go through their junk drawer and look at the odd little things their spouse kept.  Maybe like Gary,  they too, sharpened their pencils by hand, leaving a mark on a heart's memory.

Only the best

Sunset in  Redlands,  January 2010

Dear Gary,
Robbie and I have now been without you for three months as of last Thursday the 17th. Robbie tries to be of comfort.  He is constantly with me and gives me dog hugs the best he can.  He misses you too.

If you had been a poet, I think this would be something you would write:

When I come to the end of my journey
and I travel my last weary mile,
just forget, if you can, that I ever frowned
and remember only the smile.
Forget unkind words I have spoken;
remember some good I have done.
Forget that I've stumbled and blundered
and sometimes fell by the way.
Remember I have fought some hard battles
and won, ere the close of the day.
Then forget to grieve for my going;
I would not have you sad for a day,
but in summer just gather some flowers
and remember the place where I lay,
and come in the shade of the evening
where the sun paints the sky in the west.
Stand for a few moments beside me
and remember only my best.


I do remember only your best. I love you and miss you.

Hey batta batta- sah-WING

Remember the line from Casey at the Bat, "There is no joy in Mudville"?

I have had a Mudville address for 3 months now. Mudville is where everyone looks at you but they don't see you, nor you them. It is being tired of being tired. It is feeling numb and dull and joyless unless you can catch a good comedy on a free movie channel weekend or something. Even the dogs here are apathetic.

In Mudville, you get bills from the doctors who killed your husband. They are all for services that you thought were covered so you don't have any money set aside to pay them. The bills are not itemized and so they are as clear as mud.  You get charged interest and threatened by collection agencies when the bill is more than 28 days old. When you call Blue Cross Blue Shield of Mudville, they say that there have been some problems with the coverage and the card and the processing and everything is pending still after 2 months.  They tell you for the third time in a month that they will get back to you in 72 Mudville business hours.  They are slowly slogging through their mess that the hospital/doctors say you should pay- all $1300 of it.   Already I've paid several thousand since Gary died.   I need hip waders just to get through the day the way this weighs me down mentally.

I now look forward to the littlest things.  My grief therapist came this morning and I unloaded on him, but didn't get much resolved except to understand that I feel guilty about a LOT of stuff.  I feel guilty about things that people say I should not feel guilty about. After 'Al' left, I just felt very strangely let down.  I am through taking trips for the near future, and my plan to visit friends in CA is scuttled due to lack of funds(overspending in December) for gas money and then there is that ever lingering question:  how much more money do I owe doctors?

One topic we talked about in therapy is how feelings and emotions change frequently now. I was feeling guilty (again) because I told a friend who is in charge of an American Cancer Society hike in February that I would be a part of her team.  She asked me soon after Gary's death.  Now I am not so sure I want to take part in it.  I find the idea of being surrounded with cancer SURVIVORS very unappealing. RAH RAH  Yeah. How nice for you that you got to live longer than 6.5 months after your diagnosis.
I also get pissed when I get cards in the mail asking ME for money to fight pancreatic cancer or to help support other cancer sufferers.  Hey- where was Gary's cancer support group?  Oh that's right: there is no such thing as a pancreatic cancer survivor, so no support groups are needed.  My neighbor says that the money raised for ACS would help for cancer families to stay at a group type home while in treatment.  She said that ACS drives cancer patients to chemo.  Yet when I looked, it was all for breast cancer, not pancreatic.  If I did go on the hike, I cannot wear a special shirt for Gary, my $40 would pay for the team shirts from the bank who is sponsoring it.
I almost feel like going alone, just me and Gary's memory. Forget all the HOPE crap.  I'm fresh out.

Lately I have felt like some strange being with doors all over me- opening and shutting without my control. Sadness and grief come and go at will.  Sometimes they fling open the door and camp out for hours and days.  Other times they tip toe out and I don't notice they've left until they come back.  At this point, I don't want to seal any of the doors shut.  I don't want to keep grief away for now only to have him kick open the door and come back meaner than ever next year. 

I did have a great weekend last weekend.  I went up to the cold Twin Cities to visit my son and daughter in law. Just thinking about them makes me feel like crying because they are so nice to me. Forrest is like his dad in the way he is always the first to say, 'I love you' before I can even think to say it. How did that mouthy teenager become such a sweet man?
I like their cozy little apartment and that it is walking distance to shopping and dining.  We drove to Golden Valley so I could go to a Menards.  Gary and I loved Menards. Gary always wanted to go there when we visited Sioux Falls or Minneapolis to 'save big money' and to just look around in the store because Menards has no stores in the southwestern U.S. So much stuff and so little suitcase space!  It was hard to pass up the deals on some of the things I have not seen elsewhere. Oh well, those things were not in the budget.
I got home on Monday to frigid Phoenix, which has had the 5 coldest nights in 37 years.  This, after the hottest year ever on record in 2012. Thankfully, my nice neighbors put my flower pots in the garage to protect them.

I will hang on to little things to look forward to for now.  In February, I DO plan to make it over to California and then in March a small army of sports fans will be at my house to visit and see some baseball games. In the meantime, I go to my group grief meetings, and I am signed up for a 6 week course called Picking Up the Pieces.

Thanks to those who still read this blog and encourage me to gather my thoughts and spill them out here. I will close with another photo I stole off a facebook page I found today about grief.

Rearview calendar

I guess I am still on the thought jag of time and the last year of Gary's life. I usually buy a pocket calendar at the beginning of the year or just prior to it.  In December 2011, I found a decent one at 99¢ Only store.  This calendar had the whole week displayed on two open pages much like the one pictured here:

I put everything in the calendar: Pay days, PD meetings, Gary's PT and vacation hours, flight numbers and trips we had booked, and of course the doctor appointments scheduled. Boy, that blue 2012 calendar got a workout! I wrote everything down.  I knew from experience that I would need to write down every appointment, with what doctor, what was done and why.  I also wrote down if we stayed in a motel, or a timeshare etc.  I wrote down the mileage to and from every appointment.  I will need every bit of this info to do the taxes.  I fully intend to get every last deduction for this medical debacle that Gary suffered through.
It will be the last time I can claim any deductions since I no longer have a mortgage.

The record keeping I included in the little calendar even contains parts of conversations we had with doctors. What was promised, what we asked, etc.  It is so painful to go back and read what, at the time, were hopeful thoughts about treatment. 

When Gary was diagnosed with pancreatic cancer, he, being the ever optimist thought he would live 6 months.  I had read about Steve Jobs living years, Justice Ruth Bader Ginsburg still alive after years of PC and even Michael Landon and Patrick Swayze living almost 2 years with it.  I was just sure that Gary would make it through the end of the year and well into 2013. I think I convinced him too, because we were both surprised when we were told to go into hospice on October 8th.

I have read that being a long term caregiver for a spouse with a terminal illness can mean resentment, isolation, and ill will toward the loved one.  Yes, I did get impatient with Gary.  I am so sorry when I felt that way. I tried to wait on him the way he had waited on me when I broke my foot.  How could I not reciprocate in kind when he needed me? Most of the time, I enjoyed taking care of him.  I anticipated what he would want and kept him comfortable.  He was on a schedule of eating, pill taking and sleeping. When I cleaned his feeding tube at night, he would always ask, "Are you getting tired of this yet?"  I always said, "I haven't been doing it long enough to get tired of it  This is still the good stuff, and we haven't even experienced the bad stuff yet".  Gary was not convinced.  He always said thank you, please, and dutifully returned my kiss when I gave him one.

By late July, I could not hug Gary anymore because he was so full of tubes and so frail and bony.  It hurt him to sit on chair even.  I so miss his hugs; the way he'd have to bend down to hug me because of his height.  We would just stand there for the longest time not saying anything.  This is one of the best parts of being married IMO. Someone to hug and hang on to and rub his back while he rubs yours.  

Well, I still have the calendar of course. I will be using it to recount the mileage driven over the year. I keep all my calendars for years afterward.  In time, I will read what I wrote on Gary's last day.  The few lines on the date October 16 and 17, 2012 are full of my take of the events I lived through.  Gary's last words, his last cognitive actions, his time of death.

I have a new pocket calendar that I got at Target.  Not nearly as nice, but its little more zippy on the outside.  I do not intend to fill it with morbid details of doctors' promises like last year's.  If I had the choice though, I would still prefer to be fetching ice water, draining, cleaning up after, propping shoulders, applying lotion to swollen feet, measuring and setting timers, driving to physical therapy and blood infusions and even dozing off next to a hospital bed. 2012 was certainly not the ideal year, but it was our last year together so it has to be good enough.

The persistance of memory

Am I the only one who thinks the way I do? I have always done this thing of framing time in events.  For example, if I were anticipating a vacation, I would think a week in advance of what I'd be doing or where I'd be a week from then.  "A week from now, we'll be in..... and we'll be doing..."

I would do the same thing after the experience was over.  I would think, "A week/month/year ago, we were at the hockey game in LA with the boys" and so on.

So now, I'm left with memories of what my life was like a year ago at this time. I hate doing this, and yet, I can't stop.
So, taking a deep breath, I torture myself by thinking "A year ago at this time..."

January 10, 2012 was pretty bad.  Back from Christmas in San Clemente, and an uneventful New Years, Gary was feeling weak, sickly and was anemic again.  As usual, he went to work every day, though.  Liz, his admin assistant started buying him the same supplements that she gave her aunt who had cancer.  Liz had seen on Dr Oz that these supplements would heal.  She didn't know Gary had cancer- none of us did, but I started putting the pills in with Gary's other supplements.  I figured, what harm can it do?
On that day, January 10th, Gary flew to the annual managers meeting in Monroe, MI.  He was pale, gray, gaunt and said people commented on his weight.  He acted as though he meant to lose it.  He was so weak and sick, he knew he was bleeding, but had to get through the 3 days anyway.  Weeks later, I asked him if he thought about bleeding out on the plane.  He admitted, yes, he did wonder if he would die right then and there, and what would happen if he were dead when the plane landed in Ontario. 
With a non existent immune system, Gary spent the weekend shivering on the couch in sweatshirts under blankets. By Monday January 16th, he could not hold his head up anymore.
That was the day we went to a liver specialist who read the wrong chart and read us misinformation as though it were fact.  We denied everything, then she told us to cancel an appointment I had been told to make with a GI doc the next day.  "The good news is you don't have liver disease!" she proclaimed.  This diagnosis after she had touched his abdomen. By Wednesday, January 18th Gary was in an ambulance on his way to the hospital where he was kept for 3 days.  He was so anemic that he had less than 1/3 of the red blood he should have.  It had bled through the holes in the veins that ballooned in his esophagus in response to not having the ability to flow through the portal vein system. The portal vein had been choked off by the pancreatic tumor that no one thought to look for since symptoms began two months earlier.
This one year anniversary is the beginning of the ugliest time of my life.  The ugliness has not lifted yet for me, but for dear sweet Gary, it is now passed.  I didn't know it then, but I realize that Sadness came to live in me last January and has never left.
I continue to torture myself with these one year remembrances.  I hate this but can't stop myself.  My last group grief meeting last week was ended with the counselor reading about this phenomena that we impose on ourselves. Our 'year of firsts' is the 365 days following the death of our husbands.   In my case, the obsession with the 'one year ago today' stuff may be a way to try to make sense of the whole way Gary's life ebbed away from him and us.
I also torture myself by thinking that a year ago Gary was the age that I am now.  He had cancer.  So I should have cancer now, shouldn't I?  Its only fair!  We were a year apart, so since he 'got' it a year ago at age 55, now its my turn to 'get' it at the same age, right?
When I outlive Gary, it will be a very hard milestone.  This is just not how it was supposed to be.

To most of us memories are good, but memories brought about by measuring time are often very cruel.

Down but not out in Peoria

This is an actual t-shirt you can order!  I don't think I will be sporting this one anytime soon. Why advertise misery?

I had a setback over New Years and so I pulled back and reassessed my words and actions in my dealings with the people whom I  care about most. In my opinion the absolute worst thing one can experience in this life, other than the death of someone close, is to be accused of something you did not do.  It strikes to the core when something that is totally false is levied against you. It takes time to get through to yourself and realize on your own that you have done nothing wrong and you are not a bad person.

The things I feel I must get out are purely my thoughts and feelings at this moment in time.  I know they  aren't consistent with what I thought or felt a year ago, nor will I be the same person with the same feelings two years from now.  None of us are. Please just know that my writings here are remembrances and feelings about how the things that happened in my former life with Gary shape what my future may be.

Anyone who reads this knows that everything we do and everyone we encounter make up who we are. I would not trade a moment with anyone I have spent any time with.  My children, my brothers, sister, parents, in-laws, friends, co-workers and of course my life with Gary are all precious.  It has made for a great life that I am exceedingly lucky I have been able to live.

I decided I need to look again at how I treat others who grieve Gary's death. You all deserve the same care and respect and love as you extend to me.  This is not just my loss, even though I may feel like it sitting where I am so far from all of the people who cared about him.  Some of this is my desire to be isolated right now. I am amazed that most of the widows I hear from feel or have felt this same inclination of holing up in their houses.  I am told by counselors that this is OK.  Of course I do go out to get what I need to fix up the house, but I am very content to come back and shut the door on the world again.

I was told that keeping friends and relatives at arm's length for awhile is perfectly normal. I am grateful to everyone who understands this and still encourages me to get out and go places. I just can't do too much too soon. And right now, two months out, its just too soon for me.

My job, I'm also told, is to tell people what I need.  This is really hard because there some who don't want to listen and think they know what I need.  It will take some grit on my part.

So its 2013 now and the past is past. My counselor encourages me to keep writing, and keep writing to Gary.  Not just about him- to him.  I had abandoned that in the last week.  I felt so awful I didn't even want to talk to HIM.  But I know Gary well enough that I could hear him saying I should go on doing what I need to do.  Gary really trusted me to to the right thing and he told me this often.  It is one of the many reasons I loved him so much.