Cousin Deb called me this morning. My, what a mess we are, this family of my Dad's. Cousin Joe, her brother, had been living with a woman 25 years his senior. He always was a bit of a misfit, only now he has a reason for it. Apparently his significant other, who took excellent care of him before she died, saw to it that he went to doctors when necessary. It turns out that he's bipolar, which makes sense to me. Since the death of his lady at 80, he no longer takes his medications and is, of course, in serious emotional difficulty. He has always felt that no one loved him except Grannie, but now it's no one loved him except Grannie and his lady friend. He appears suicidal to Debbie.

Cousins husband Mark has been diagnosed as schizophrenic. He's a difficult case as well. She has an excellent job and she took her time when shopping for a husband. So, why did she choose one that hasn't worked a day in his life and has spent their entire life together relying on her to take care of him? After our lengthy conversation, which leads me to believe that Deb is connected to a reality unknown to the rest of us; I must say I'm at a loss.
I have seen this woman 5 times in the last 27 years or so, and now, suddenly, I am the source of all the wisdom in the family. Who knew?

She, it appears, suffers from OCD. I don't believe it's been diagnosed, but she appears to have difficulty disposing of things. She has informed me that she has 5 boxes of papers belonging to our Grannie. This includes letters and documents that Grannie saved over the 74 year lifespan she achieved. I'd love to read them, but unless they have been correctly preserved, which is very unlikely, they really aren't something that should be held on to. She also has clothing from the 50's belonging to Grannie and her mother. I suggested taking these things to the Rome Historical society for preservation. She can't part with any of this until she finds out that no one in the family wants these things. We have cousins in Virginia that we haven't seen nor heard from in decades. Cousin Danny, from Virginia did call us to tell us his Mom, Dad's youngest sister passed away last year.

We have no method of contacting them, yet, they have phone numbers belonging to their aunts and uncles which they do not use. Now, I don't need a ton of bricks to fall on me in order to get it that WE are not a priority in their lives. I don't think I'd know Danny or Diane if I fell over them. Why is it that Debbie has to KNOW that they don't want any of this stuff before she disposes of it, and what part of they haven't called us in 27 years escapes her?

Uncle Charlie said this past week that our family only gets together for weddings and funerals. It was also suggested that the glue that held this family together was Grannie, who died in December of 1980. I think the glue dried out and we split into sections some time ago. I pointed out that it helps families to stay in touch better if they like each other. Which was, at the time, an attempt at levity, but in retrospect I am moved to the conclusion that there's more truth in that statement than I had intended. I love them all, the problem is I don't like them very well.
I wasn't ever given much chance to get to know them as adults. I am the only product of a "broken home" in the family. I am Buster's daughter, the one with the Mother who thought herself a little too "good" for him. Who knows, maybe they thought divorce was contagious like the flu or something?

Up until Dad died, I had no contact with Cousin Debbie. She and her brothers and sisters have married, had children and moved on with their lives without my participation. I was never invited to the weddings, nor to the christening parties for their children. I was not allowed at any point in the 27 years since Grannie died, any access to her belongings so that I might have chosen a memento of her. Cousin Debbie, I believe, received the dishes that Grannie acquired by feeding my Dad endless boxes of oatmeal until he hated it. A full set, enough to serve 10 people. She was a frugal woman my Grannie. Never bought a set of dishes in her life, however she had sufficient sets to go to all her granddaughters. Dad's was the most painfully acquired. He absolutely refused to eat oatmeal ever again.

I don't mind not being allowed to have "my" dishes, I don't mind not knowing that all the letters Grannie so very carefully kept were still being saved. I no longer mind being treated like an outcast because I was my Mother's Daughter. After all these years it no longer has the ability to wound me the way it used to. I built my life without them, only including Dad and Uncle Charlie. I may have lost my Dad, but I haven't lost my mind. We were all close as children, we loved each other as children do. We are all adults now, and I have been about as welcome in that family as a case of syphillis might be. Too much time has gone by with too little effort on their parts. Too many invitations extended by me were declined because of prior commitments, too many phone calls left unreturned. Too many bells were rung that I no longer am willing to try to unring for their sake. Their Uncle Buster has gone, and apparently some consciences have been pricked. Too bad, my Mom died a year ago and none of them sent a sympathy card nor called. I don't know any of these people any more, and I'm going to keep it that way.

We do a number of things when we are grieving that are rather surprising to other people. It's sad that outsiders don't mind their own business. Sometimes even family members think they have a right to order us around. I think grief and it's process is private and how each of us deals with it and what we do during the process is an individual thing. There were too many hospital stays and too much hope dashed by the setbacks. All of us here were rung out emotionally by the process. Even though they came twice, my brother Scott and his wife were here when Dad was doing fairly well, and not bloated the way he became. They weren't here when he was visibly suffering, they have no concept of what we here went through. He's having a hard time dealing with some of the things his Mother is doing.

After Dad died, and the arrangements were made, my stepmom, youngest brother and his fiance went to dinner because none of them felt like cooking. They had free plays and points toward a meal at the Turning Stone Casino and that was where they went. Scott called her on the cell phone probably because he needed comforting. He was angry at all of them for not being at home. He hung up on her when she told him where she was and what they were doing. He is still angry at her, and doesn't understand.

His mother is a strong woman who made up her mind that she was not going to sit around crying. She has a life that needs living. They don't bury the widow with the deceased. There are bills to pay and things to take care of that will need attention. She has her moments, but over all she's doing the best she can do with what life has dealt her. She knows what she needs and we all needed to take a break from the suffering we spent days watching. So, her way was to go out to dinner with her son and to spend some time enjoying the slot machines at the casino. Is that something I would do? No, I don't enjoy the casino, but I don't have a problem with that nor with the new puppy she decided to get.

When the boys were younger they had a family dog. It was a black labrador retriever they had gotten as an adult dog from someplace. His name was Gomer. Dad was not big on housepets, hated cats and wasn't particularly fond of dogs, but he did appreciate Gomer. He allowed a dog when the boys were young because he did feel that caring for a pet was an excellent life lesson. I had my dog Tana when Dad and Mom were together, and after he remarried and had the boys, they had Gomer. When Gomer was gone, Dad would not allow a replacement. He felt that since the boys were older and leaving home it wasn't necessary. He didn't want the dog hair and the mess and the responsibility so he refused to allow my stepmom to have another dog. They were both busy, he didn't want to be tied down, it wasn't fair to the dog and other excuses were offered, so she didn't acquire another one. She has now. Less than 24 hours after he was gone, she went and found herself a black lab puppy.

My Dad was named after his father, so to avoid confusion, he was usually addressed as Buster. He was Buster to his parents, sisters and brothers. He was Uncle Buster to his nieces and nephews. I don't think anyone except my stepmom ever called him Earl. Even my Mom called him Buster. She named her puppy...Buster. She is so proud of her new puppy. He's 6 weeks old and uses the potty training pads rather than the floor. He's smart as a whip, and he's going to be the perfect companion for her. He will help her to be less lonely because he will need attention and love. Dad's gone, life goes on and we'll be fine.



This is not a picture of Buster, but he looks just like this.

On Tuesday, I dropped the cell phone off at work and requested a few days off so that I could be at the hospital with Dad. I didn't do that when Mom was ill, because there wasn't time. She was improving when I left the hospital on that Sunday, and I was not notified that there was a change in her condition. By the time I saw that she was failing it was too late for the office to make the switch. That was my reason for not spending the night at the hospital, I was on-call. I made the arrangements as soon as the office opened on Tuesday, March 21, 2006, but she died before I arrived. I've spent a year living with the knowledge that I didn't make the right decision and it resulted in her dying alone. There was a part of me that wondered if her improvement was not just the calm before the storm and I allowed myself to be lulled into a false sense of security by the lack of notification of any change by the hospital.

I resented myself for not being wise enough to see that she didn't have any time left. In order to help myself handle it, I went back to being on-call the day after she died. It kept me busy, and occupied my mind so that I wouldn't wallow in my grief. I also take my responsibilities seriously and know how overburdened it makes the person who has to take on-call in my stead. I'm not someone who will overburden others if I can avoid it, and so I went back to work. I was stressed enough by the death of my Mom, yet I added stress to the situation by returning immediately to work. I let my job take over a large portion of my life.

Being on-call means my time is my own only from the hours of 8 am to 4 pm Monday through Friday. On weekends I am on call 24 hours a day for both days. There are times when I don't get calls at all for hours or days on end, but I always have to carry a cell phone, I always have to be available. It is my job to be woke up at midnight because someone didn't show up for work. It is my job to be woke up at 5 am because someone else doesn't want to go to work. It is my job to find coverage for those cases where available, it is not my job to feel guilty because I can't find that coverage. It's not my job to feel guilty about asking for time off. That was why my Mom died alone, because I felt guilty for not wanting to do my job. It was that guilt that prevented me from making the right decision.

Oh my...I grew up to be my Dad. In the obituary tonight will be the information that he worked for his place of employment for 48 years. It's actually closer to 43 or 44 years. He didn't start work there until I was 13 or 14 and I'm 57 now, so there is a bit of a discrepancy there, but it doesn't matter. He took a job that employed him 6 days a week. Unless he was sick, or on vacation he could be found at his job. He missed daytime birthday parties for his children and grandchildren because if it was Saturday, he had to work. His grandsons Steve and Vinny have participated in sporting events that he missed because he was working. He missed their performances in school plays and pageants because he was working. It was simply something we all accepted. He missed out on so much, and by extension so did we. He was there for us after work, just not during. I'm not quite that bad but close. I need to change that.

I spent some time this morning deciding where I was in life and what my priorities should be. I decided that the first thing I needed to do for me, was not go back to work until Monday. I've worked there since March of 1999 and in all this time have taken a whole 3 days off. By Monday, that total will have changed by the addition of 6 new days. I almost allowed my guilt to argue me out of this move, but I took a deep breath and did the deed. Except for 2 hours tomorrow morning my time is mine for 4 days. I'm going to enjoy myself. Putter around the house, visit friends and family without worrying whether I have cell phone service at their house. Next week when I go back to work, I will be doing a couple of midnight shifts at that 24/7 case our office has, and guess what? I will not do it and stay on-call. They are going to have to decide what it is they want from me and stick to it, because I have a life to live. For the last year I've been having a life so I could have a job, I'm rearranging that to having a job so I can have a life. I don't feel the least bit guilty about it either

It's called "twilight sleep", the morphine drip kept him in that state from 9 am Tuesday morning until shortly after 2
this afternoon. The aides came periodically to check the IV, they repositioned him for comfort and took vital signs but left us alone with him. They sent in carts laden with coffee and tea and cookies. Kept us supplied with everything we needed. Those of us sitting the vigil would change from time to time, but always my stepmother sat near the head of the bed on his left side where she could reach out and touch him when she felt the need. We chatted, shared "Dad" stories and played remember when.

Shortly after 2 this afternoon Uncle Charlie asked if we were sure he was breathing. You couldn't hear anything except the hiss of the oxygen as it bubbled through the humidifier jar, but his cheeks would move and his chest rose and fell with each breath. His head was tilted to one side and you could see his heart beat through the movement of his carotid artery. The activity seemed to have ceased. When I checked, the carotid artery was not moving, and I was unable to detect a pulse by touching it. I buzzed the desk and said that I thought someone needed to come and check Earl, but didn't say why.

My favorite nurse Jackie came in and I told her I thought he was gone. She listened to his chest with the stethoscope and looked at me. She nodded in agreement, recovered him and said she'd have to report to the nursing supervisor. It took awhile for the supervisor to come in and she too listened for heartbeat and checked him for reflexes. She apologised in advance for what she was about to do to him and suggested that if anyone felt uncomfortable with it, she would take the time to explain why this was necessary. No one said anything and she took a roll of gauze pushed up his eyelids and gently touched them with the gauze. There was no response, so she pronounced him at 2:15pm on May 2, 2007.

I will forever remember that his last words to me were 'Help me", and I could not help. There was no way he could have gone home, there was no way for him to live the way he wanted to. In 5 days he would have been 81, with the problems he had there's no way he would have handled renal dialysis. It would have been just one more sickness he had no will to deal with. He's gone, he is at peace and this is for the best.



May 7, 1926-May 2, 2007 We love you Dad. You're in our hearts forever.

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

by Mary Frye

Two small spoonfuls of mashed potatoes, and with each one the admonition "Earl, you have to chew and swallow, please, do it for me." He lies in bed falling asleep, starting awake, and looking around as if it's a dream. "Help me" he said. He wants to go home, and he doesn't understand that he's too sick to go home, maybe it's that he doesn't care. I watch and I'm not sure what I'm seeing.

She pointed at me and asked him if he knew who I was, he nods and says "My Daugher" Not daughter, daugher.
She tells him he has to drink to keep his mouth from getting sore, he shakes his head no. When she leaves he asks me for a drink. I hold the small can of diet ginger ale with the straw up to his mouth. He just lets it set there for a minute and he sucks on the straw briefly. I don't think he's getting any of it, but I can't say for sure. When I ask him if he wants more, he shakes his head no. They crush his medications up and mix it with applesauce and half the time he won't swallow it, it just runs from his mouth. The doctor says he's not cooperating with the treatment. He had to be restrained when they needed to use an oxygen mask on him. He kept ordering us to take it off. We'd tell him it had to be there, and he'd shake his head no and stop speaking with us.

His oxygen levels went up enough to remove the mask and use the nasal cannula. They removed the restraints and he tried to rip out the IV's. They had to restrain him again. Help me...is he asking us to help him die? He looks first at one pole with the IV's on it and then the other one on the opposite side of the bed. Head swings back and forth. When I asked him what's wrong he just shakes his head no. My stepmother had to run an errand, and he kept asking where she was. Over and over I would tell him she's gone to pay bills she'll be back and I'll be there until she does. He closes his eyes, drifts off to sleep and starts awake, whips his head back and forth again as if he's not sure where he is. At one point he doubled both fists and drew them close to his body. He stiffened up, pushing his head back into the pillow as if he was trying to push a recliner into a relaxed position. "Help me." I asked him if he wanted the head of the bed back a little more and he shakes his head no.

His body temperature is hovering right around 95 degrees. He is mildly hypothermic and yet the room is quite warm. His blood pressure keeps dropping to below 100/60. When it does they open a valve on the saline drip and let it enter his veins. This brings his blood pressure up to the range they want it to be. He won't use the nebulizer pipette so when they need to give him a breathing treatment they have to use a mask. They want a sputum sample and he won't spit out what phlegm comes up with the coughing. He swallows it, it's the only thing that he will swallow without coaxing. He's not in his right mind...or is he?

My Mother was afraid of dying and I see the same look of fear on my Dad's face but I suspect it's there because he's afraid of not dying. He can't get better, they will stabilize him and send him home and he might get to be there for a week or a few days and it will be back to the hospital and back to this. His body is swollen massively with fluid, he can't breathe. He can't hang on to anything to feed himself, he can't be the man he once was. I don't think this "life" is what he wants.

He is in a hospital where they are dedicated to saving lives, whether the life wants to be saved or not. They are doing all the correct things. He's surrounded by IV poles, there are actually 3 of them there. Each one of them has a bag hanging from all 4 branches. Antibiotics, antimicrobials, diuretics, saline and one of them is albumin to bring up his red blood count. Some of the bags are dripping their contents into his veins, some are empty and the saline is there to raise a blood pressure that he can't sustain on his own. Why?

This is the reality of modern medicine. With all the technological advances, they can't cure old age, they just can keep the body functioning at a minimal level thereby extending the half life of the bodies inhabitant. This is not even an old age that is comfortable, this is nothing I would call life. He can't dress himself, he can't feed himself. He can't get up and walk to the bathroom on his own. This is not acceptable to him, this is not what he wants.

So, today we are helping him, finally the doctor sees that all this is not availing us anything and his status has been changed to "Comfort Care". Everything has now been disconnected except for one IV of morphine. It drips steadily into his veins and keeps him sedated through the remainder of his life. He hated being in the hospital, he created some of his own problems by insisting that he be allowed to go home long before he was ready to. That was his choice and he had a right to make that choice. The cycle of hospital stays, rehab and going home only to go back to the hospital is over. Now he's being kept comfortable, and we are waiting for the end.