He is still breathing

The hours go by and Michael still breathes. He is more peaceful now. We are able to talk to him and feel that he might hear us. Before his breathing was so loud and so labored that it was painful to be in the room with him. Now it is softer. Sometime he lets out a big sigh.  Sue sings to him. I lean near him and tell him I love him. I wash his face and hands. The nurses come in and turn him and keep him clean. One of them told me that she was crying when she saw our pain a few days ago. She said only someone who has lost a child can know how it feels. Everyone is so wonderful here. They are so good to us. We will forever be grateful to Casa De Las Companas
Katie and Bruce arrived today. They decided to drive down. It was a long hard day for them through LA traffic.
We are home now going to bed for the night... so strange while Mike lies dying we come home to sleep as if it was any other night in our lives. If we didnt sleep we wouldnt be able to do this.  It is now 10 days since we got the call that Mike was dying.
Our friends and neighbors are starting to hear about Mike and gathering around us as friends do at times like this.

Waiting

It's terrible to be waiting for someone to die.  His life is over. Yet he breaths. Death can be a slow and painful process. I hope when it is all over I will be able to remember him on his best days. There were many many best days. There were bad days with Michael too. But I always loved him. I knew where the bad stuff came from. 

It wont be long

Michael's body is still breathing. But he is no longer there. It wont be much longer now. All is as it should be.

We have come home to sleep a little

We sat with Michael all evening watching him breath. Waiting for the next breath. He is completely unresponsive to anything we say or do. Sue sang him some Christian songs in her sweet sweet voice. Then she read the bible to him. When he stirred a little I moved close to his ear and told him I love him.
We asked the nurse if he was close to the end. He said he didnt think so. Of course he cant be sure. But his pulse is still strong and his hands are warm, his color is good. So we decided to come home and get a little sleep. Sue is doing the driving. It's wonderful to have her here!
Mike is young and strong. It will take a while for him to let go. He did not come easy into this world. And he is not going out any easier.

At the bedside

I am sitting at Michael's bedside. We are in a new room. Its a single. I would guess that it is a room to die in. It's spacious and there is a garden outside the window. In the other room we were near the hall and could not see out the window near his room mate. Im glad they decided to move Mike here. The energy is good and peaceful, just the kind of place I hoped for.
Ive surrendered myself to the care of my loved ones. Cris has been driving me around. Now Sue has arrived and will do the back and forth driving. We met for dinner at a coffee shop near by. Now we are ready for what lies ahead. Mike has been resting quietly since we gave him the sedative along with the morphine this afternoon around 2:30.  Frank has been with him all this time. He says he hasnt moved since then. I asked the nurses to turn him. It isnt good to lie in one position so long.
I sent Frank home for a well deserved rest. He has had no sleep since 2:30 last night.
Mike is no longer involved with this world.  Even when they turned him he was unresponsive.
Earlier today when I was home, I couldnt stop crying. I tried to sleep. But all I did was cry. So I called my wonderful psychiatrist, Dr Sanders. He was so sympathetic. He has been my friend for 10 years. It was with his skill as a pharmacological psychiatrist that I finally got my bipolar in balance.  This whole experience has the potential for throwing me off. But Im determined to stay centered. With that in mind, we devised a strategy. I will be taking low doses of the medication that I usually take at night that causes drowsiness and sleep and balances my mood. I will have Susan to drive me. Katie and Bruce are coming tomorrow. I already feel more peaceful.But  I am tired, weary to the bone.
This pain in my heart will always be there to remind me of the son I have lost. I will learn to live with it and integrate it into the rest of my life.
There is such a long time between breaths. I find myself pausing from this to wait and see if he takes another breath. How odd it must seem to my readers that I would be writing in my blog while sitting by my son's death bed. This is a strange world we live in now, where our most intimate experiences can be shared instantly with our loved ones,  no matter how far away they are. I write about this to bring you into the room with me. Thank you for sharing our journey. And God bless all of you who have been with us through it all.

24 hour blurr

Today was the worst day of my life. Im not sure when this day really started. Was it at 2:30 am when the nurse called to tell us Michael doing poorly? (I will spare the details) What she said got us out of bed and down to the Casa. Mike was sitting in bed very confused with the nurses taking care of him. They had just cleaned him up. For the rest of the night he was restless combative and in pain. I sat there watching him take every breath thinking each one might be his last. The night dragged into day with more of the same, with brief periods of quiet when he slept. Long story short, we pushed the hospice nurses to deal with the restless combative energy along with the pain. Frank said, "this isnt how it should be. He should be lying peacefully in a coma then slip away.  The nurses say that this is an expression of his brain deterioration and isnt a conscious effort on his part.  Finally they added a sedative to the pain med. Hopefully it will give him some peace. I have begun to summon the family to me. Susan will arrive this afternoon. Katie and Bruce are coming tomorrow. That will be enough for now. I dont expect the whole Campbell Clan to descend on San Diego when he goes. We will have him taken away and cremated.  Frank doesnt want to have a service for him. But I do.  Im thinking we could have one here for his friends and ours, and another one in Sacramento for the Northern California family.
They say it will be anywhere from 24-48 hours and he will be gone.
There is no way to describe the pain I am feeling right now.  Im raw with it. My thoughts are fighting each other for attention. I dont have one single thought that I want to think.
The tears keep coming. Thats a good thing. Cris is taking care of us now. She is driving me back and forth to the Casa. Im home for a little while. I sent Cris back to be with Frank and Mike with a sandwich for Frank.
I know Im not the only mother who has lost or is loosing a child to alcoholism. We each have our own unique set of circumstances.  My dear friend Carmen lost her John just 5 months ago. I told her then that Mike was doing the same thing John did, he just chose the scenic route to leave the planet.
Mike has had friends come by who prayed with him and read him the bible. He is beyond that now. He has one foot in heaven, one ready to step over the threshold.
Would that he could give us a little of the peace he will soon have.

Pain

I just got home from a harrowing evening with Mike. Frank went down around 5 and I followed at 6. When I got there Frank was trying to find the nurse to give Mike pain medicine. There was no one at the desk. There was a bell to ring. But no one came. In the mean time I was talking to Mary's friend Bert. I had requested a Christian to come and visit Mike. But Mike was in no condition to see him. I could see Frank trying to get the nurse. So I left Burt to help him.
When I went in Mike's room I could see that he was in a lot of pain. After a while the nurse came in and gave him liquid morphine. After 45 minutes the pain was worse, so I asked for more. She had a new order for Dilaudid (also a narcotic) so she gave him that. Mike was moving all around his bed, standing up, sitting down. leaning over a chair trying to get away from the pain.But nothing helped. After another hour of this I went back to the nurse. She said she would call the hospice nurse after she passed out her meds. Well that wasnt ok with me. So I called the hospice nurse. They had given me the number and told me to call any time. The hospice nurse got a hold of the doctor and he doubled the dose of dilaudid. When I went back in the room the nurse had handed him the pill cup. But he wasnt coordinated enough to put it in his mouth. Instead he dropped it on the floor. When she brought a replacement, I took it in my fingers and put it in his mouth. Fortunately he drinks water well. But he was still climbing the walls in pain. I just sat there helplessly while tears rolled down my face. After an hour the hospice nurse called back and asked how he was. I told her he was still in pain. She told me she would send out a hospice nurse. When I went back in the room at 9:15 he was sound asleep. So I pulled the blanket over him and turned out the light.I called hospice and told them they could cancel the hospice nurse. I told the nurse to be sure and have the night nurse check on him  and if he was awake to offer him pain meds.
Sue has offered to come down and help me. At first I thought I would be ok. But now I know I need her to stay with Mike part of the night to be sure he gets his pain meds. His mind is going. So he needs to be watched. There arent enough nurses to do that.
We are entering into a new phase of this ordeal.
Pray for me please.

Im going to the Wild Animal Park

Where nothing bad ever happens

Knife

I feel like a knife is in my gut slowly twisting. The hospice social worker came today to try to sort out how to get care for Mike when he runs out of time at Casa. This involves finding and sending all kinds of paperwork. It has fallen to me to do it. So Im in the process of scanning it into my computer so I can email it to the people who want it.
The social worker talked to Mike about the fact that when his friends found him in his condo incoherent he had a cup full of pills in his hand. She asked him if he had been thinking about taking his own life. He said no. Then she told him how he should talk to someone about it if he feels that way so he can get help. She asked who he would talk to. He said his friends and us. Keep in mind that his speech is agonizingly slow. So we had to wait a long time for him to answer. She just kept pressing on the need to be able to talk to us and make his peace with us. We already did that in my opinion. Anyway, I dont think his mind is clear enough to say anything meaningful to us.  So, lets see.. Mike, dont commit suicide so you can have a long slow death while your parents watch helplessly. Thats the gist of it. Anyway he doesnt have the means or the mental clarity to do that.
She went on and on about this. Finally I said, 'Im finished here' and went outside and broke into tears. Then she and Frank came out to try to soothe me. I got in my car and sobbed uncontrollably.  Finally I got out of the car and told her, 'Your job is to find a safe place for Mike. Do it.' then I got back in the car and locked the door and cried some more. Frank wanted to drive me home. But I waited until I got it together and drove myself home.
So here I am with a knife in my stomach turning and slowly turning, scanning Mike's documents and getting them ready to email to the person who wants them
This is just the pits!!!! I feel like there is a huge wet blanket over me and no matter how hard I try to throw it off, It just goes right back over me.  Will I ever be free of Mike?????????????

Thoughts on awakening

Sometimes when you wake up you find you have been thinking about things in your sleep and there is clarity.
Mike was much better yesterday. I spent the first half of the day there and Frank spent the second half. Mike was awake for a good part of the day. He engaged in conversation that was appropriate. He even ate a little. He was just generally more perky.
So here's the conundrum: What if he doesnt die or he doesnt die right away? Will we be back in that place we have been for so very many times? That place where he is not quite functional but alive and needing assistance to put his life in order. I cant begin to count how many times we have taken him in while he got his act together. Two years ago he called us from the hospital because he was told he would die of liver disease. We dropped what we were doing(We were in Northern California getting ready for the Campbell Family Gathering) and rushed to his side. During that period he was in the hospital for weeks, and we had him in our home for about 6 weeks. Frank gave him his room and Frank slept in the van.
They are talking about moving him out of the Casa and into a board and care home. They(hospice social worker, doctor and nurse) feel he cant be on his own because he would not be able to care for himself.
They would love it if we agreed to take him in. We have told them clearly that we can not take him in. There are costs for his care that Kaiser wont cover. We have also told them that we wont pay for it. Frank sometimes wavers. But Im clear that I cant do this again. I would loose the delicate balance that I have worked so hard to achieve.
Even so, Im not off the hook. The social workers have asked me to provide all sorts of financial records, including drivers license, birth certificates, bank statements, check stubs etc. We need all this so he can apply for disability, SSI and Medi-Cal Yesterday I went through his records and found most of what they want. Now I have to scan it all into my computer and email it to somebody or other. Today I meet with the hospice social worker to discuss what to do next.
People tell me they are praying for healing for Mike. But they dont understand that even if his body heals that doesnt mean his mind has healed. He would probably go back to drinking. Then the whole process would repeat itself. What good does that do? It only drags us through more misery. Do you see what I mean?
Ok I sorted through my thoughts. Thanks for reading all of this.