A Note Written by Eric August 13th to a few of his closest of friends a week before Carleton died.

A Personal Note to Readers:  I share this note to help those who do not have an appreciation nor have been involved in the care giving process.  I share it with those who need to know more about Carleton’s last days.   I share it to provide a clear picture of the horror one might face when not given enough support and when watches their most loved partner in the last days of their own demise.  It is a message that I could not share publicly for fear Carleton would read it and give up what hope he had left.  So, be warned, it is an intimate letter, from the deepest part of a person’s life, during a terrible tragedy being shared so that others might learn how to respond when these tragedies face someone they love.  

The words at times are harsh, but in life, the perception of others is harsh.  At times, care from family is not to be had, even after repeated requests.  Does the letter contain judgment of family, quite possibly.  Do I stand by them, most certainly.  Do I accuse, no.  I simply place the reality of the situation at your feet, from the individual, the care giver, who could not find support.  The government had refused to assist. There was no financial ability to access care.  No family support at the time except phone calls.  It came to this letter to some dear friends, the only plea ever made by me to those few around who I would beg, hoping they would save me, and Carleton, too.  Pride and Privacy had kept me going this far, but I could no longer access those assets to sustain me.

It begins:

Some of you have been wondering how Carleton and I have been doing.  There are good days and bad days.  There are moments of hope and fear.  And, fortunately for me, I simply walk in hope and faith regularly.  But, I am human.

Yesterday, Carleton was sitting next the kitchen while I was working on client information, running laundry, and addressing e-mails for GSDBA.  At around 3pm, as he was walking, his legs simply stopped working to support him.  I had to run and help carry him back to his chair. 

It was then, out of his mouth, with his face wrinkling in abject despair, that I heard the sobbing that I feel only comes from recognition of what feels inevitable, especially to one who is not a fighter, yet has fought for two years valiantly.  I heard a high pitched, coming from deep within, despair cleaving the heart sob.  It was like he was attempting to hold it in so desperately, but that the pain he suffers, the reality of his increasing immobility, and the fact that he is 29 and wearing a diaper to address his body’s destruction caused him pause.  It is horrible to hear in the movies the cry of that person who screams that they don’t want to die.  It is an entirely higher and excruciatingly terrible level to hear it from someone sobbing, so frustrated, so fearful, and so unimaginably tortured with the very real prospect that his treatment strategy is losing and he faces a very real death. 

There I was, a person who, though positive in nature, unable to lie about reality.  I wanted to call up my mother and yell at her that her insistence on her children always telling the truth was horrible.  Ultimately, all I could do yesterday for a time was let him cry, as I held him, before another load of laundry needed to be started, a phone call and e-mail from GSDBA Board members had to be answered, and oh yes, I still occasionally work on client related material that continues to stack up, or clean a section of one of the bathrooms for the second time that day.

Last night, I had to help Carleton in and out of the shower because his legs are so frozen in a particular bent position that they are not bending enough to lift him, alone to take a shower, or to leave the shower.  I had to physically lift and move his feet, one of them having been covered in urine, so that he could rewash and clean himself after having awakened from a dream, been startled, and I had rushed into the room, and scared him so badly that his body voided.  Imagine that he constantly has to strain to get these things out of him, yet the direction is unable to be determined due to the swelling, strain, and possible direction, much less the constipation.  In the last 6 days, I have cleaned two bathrooms twice a day, simply based on fear that someone might visit and think I live in filth because I am lazy.

I completed 5 loads of laundry yesterday.  Today I did four.  Why?  Because Carleton soils his clothes four times a day due to the cancer impacting his lymphatic system, the morphine causing constipation, and some cancer tumors in his gluteus area which means he must strain for 30 minutes (at a time) with extraordinary effort merely to void a few drops.  I consider it straining in his attempts to give birth to a child, but few of the muscles in that area respond well.  Yet when he is walking up stairs, using the same muscles or he is startled, the very adrenalin his body expresses at those times, betray him to cause those accidents.  His body is rebelling and is unable to execute what his brain has for decades easily accomplished.

There has been few outside visits from others in the last weeks, save five dear ones.  Carleton has refused to seek support from my friends without my insistence.  And, after a dark patch with his family, it is up to him to determine and encourage their participation.  From what I can see, I see little support for my predicament save from his mothers.  Since I have returned from Palm Springs, his friend Michiyo has been wonderful to visit, no drama, and do what I can’t keep up with doing.  She even insisted on doing a grocery run, cleaned the kitchen, and helped fold several loads of clothes.  Fortunate for me, one person personally came to check on me and I have my Mom to call when I am overwhelmed.

I think no one realizes that it is not just that you have to care for someone; but that the causes for the care may quadruple the amount of basic activities we might normally do in a week, just to maintain their dignity.

I think you should assume that each day there are hugs and moments of comfort for Carleton.  But, whether he is in the room or not, nearly every two hours or so, you might see tears run down my face because I dread his demise and worry about his recognition of it.  Yet, Carleton would tell you I keep my emotions held behind the wall.  I have had to harden my heart to the frequent (every few minutes) moans and wailing in pain, whether he walks or sits, or lies down.  Only when he sleeps, if it’s deep enough, does it stop for a while.

For me, it may be the most tortuous thing I can hear.  For the only thing that keeps me sane is the understanding that for a person who so passionately believes he has the creative ability to create solutions, that he can fix find answers, I know, in this case, there is nothing I am able to do but be present, be supportive, attempt to be comforting, be available, be a caregiver.  No matter how much I want to be able to bring a solution that I find satisfactory, I have not one.  I regularly grade myself with a failing grade on being present, being supportive, successfully comforting, being available, and being Carleton’s caregiver.  Being a perfectionist does not help in this situation and being creative does not either.  It is a terrible assessment to bring on yourself.  It is one I believe everyone faces when they are only allowed to stand by, not stand against, Death.

And, being someone who works with people on what to expect in their futures, well, I will be as prepared as anyone to walk with Carleton on that score.  Having been a pastor, being a financial advisor, serving the old and the dying, having had friends and loved ones pass on, sometimes the last few months, the darkest moments of bitterness I have are the ones where I realize, it seems, I am the one who helps the person to face dying.  And, today, I simply hate having that skill more than anything else in the world.  I hate being the Community Crypt Keeper.  Once it was a bitter joke.  Today, the experiences of 20 years in the Gay Community rest harshly on me.

Thank you for letting me share.  I needed to tell this to someone rather than bottle it up or have Carleton suffer through a momentary breakdown.  I fear that should his health deteriorate further, we will be forced to consider institutional care.  His parents will not even communicate a strategic plan when I have urged consideration less it create a reality of its own.  I clearly will be left to make those plans, alone.  I fear that within days, I will have to share this insight with Carleton, because I am only able to sleep in short respites due to his pain, his bathroom visits, his rapid deterioration of his transportation controls, and the many things he can no longer do himself.  He cannot walk under his own power from the living room to the bedroom nor reach the cupboards due to the limitations of his ability to stretch extending muscles.

I guess, when you want to know what thoughts to bring to bear, consider mercy is what I hope we find soon.  Luck, I fear, is not anywhere in the room.

I have to rush off to a client meeting.  I am better having simply written this down and shared it with some which I feel might find it valuable or understand that for me, my most intimate thoughts are rarely shared.  And, you have been given an insight into me few beyond my Mom and Celia, will ever know.