Peace, sort of

Mike is in a peaceful place. It is a really lovely facility. But it is of course a Skilled nursing facility, however nice. It has the requisite confused little old ladies and one yeller. Mike says there is always one. He is quite the veteran of hospitals.  The energy there is much calmer. Things move slower, time moves slower.  Mike talked to us slowly and methodically. We had to ask him to repeat himself several times because his speech was slurred.  Cris came by to see him. She told me later that he seemed pretty coherent. She pointed out that the morphine was probably making his speech slow.
The hospice nurse came. We had a lovely discussion about what measures we do and dont want taken.  I was out at the nurses station signing more papers and the nurse started talking to me about funeral plans. I lost it again. sheeesh!
In spite of these constant reality checks, I just cant wrap my mind around the idea that Mike is dying. I have seen him this sick before. And he has gotten better.  Why should this time be different?
Im not going to sugar coat this experience. Im not entirely the grieving mother. Part of me selfishly wants her life back. I want to do the simple things I usually do, such as spend the evening in my room with my cats and dogs and computer and TV.Do my therapy dog work. Refocus my Weight Watcher's program. Go to the gym and the Wild Animal park. Have an easy ebb and flow to my life.
When you take away the drama, sitting at the bedside of a dying man can be tedious, and very depressing. After talking with Mike's friends, I realize that they knew a Mike that I hadnt seen in years. With them he was fun and witty  and kind and compassionate. The Mike I have known these last years is entirely different. He is a sick troubled man, who is capable of being unkind to those who love him most.  I find it hard to love this man. Even if he is dying. And  by his own hand at that. Im his mother. I guess that means I do love him. If I didnt why do I break down and cry again and again.

Mid day Saturday

Mary and I went to the Wild Animal Park and Frank went to the hospital. There were phone calls back and forth. But eventually he arrived at Casa De Los Companas in Rancho Bernardo.  Mary and I are going there now.

Saturday Morning

Sleep did not come easy, even with the medication. I finally got to sleep around 11:30. When I woke up this morning, the nightmare came back.
The hospice doctor called this morning and apologized for yesterday. He told me that a lot was going on behind the scenes in preparation for the move to RB. But someone dropped the ball somewhere. They plan to move him today. We shall see.
Mike called us from the hospital he wanted to know what would be happening today.  He spoke slowly trying to put his thoughts together.
Frank went down to the hospital. He encouraged Mary and I to take it easy and not go right down.  I am torn. I feel like nurse Sallee should be there to be sure things are done right. (Not that I can make that happen). Mother Sallee just wants to be with her son. Sallee Sallee wants to take care of herself and rebalance. Who to choose? Who to choose?
This gets harder every day.

A long and difficult day

This day has been so long and so exhausting that I cant remember how it started. I only remember being at the hospital with Mike, waiting for them to transfer him to the new facility. The day dragged on and no one came to get him. I asked the nurses when he was going. They didnt know.. In the middle of the day two of Mike's good friends, Ellie and Jon came to see him. They were so upbeat and happy. Mike rose to the occasion for a while. He talked with them and asked them to remove his remaining belongings from the condo he was renting. But it was a bit to much energy for him. He was exhausted and fell asleep for a couple of hours. In the mean time there was no sign of the medical transporters. I spent time with Mary, my sister in law in the waiting room. Chatting and crocheting. finally around 7pm I went to the nurses and again asked them why he hadnt been moved. The charge nurse got on the phone to try to figure out what the hold up was. No one seemed to know. Thats when I had a complete melt down in the middle of the nurses station. I started crying uncontrollably and the nurse held me in her arms. I kept saying, 'my son is dying' He is 43 years old and he is dying'  The nurse had been calling different departments and telling them I was upset. I told her that if they werent there in an hour I wasnt going to let them move him. I didnt want this happening in the middle of the night. The nurse agreed that he should stay. Then, out of nowhere the transport team arrived. Somewhere someone decided to send them. They didnt even know who they were there for. They had to call the base station and ask. They went in Mike's room, and he sat up on the edge of the bed and started getting sick. It was bad enough that we all decided not to send him to the other facility. There are lots of reasons for this decision. But I choose not to go into more detail. Lets just say his vital signs are stable. And he is awake and talking to us. We have shared some tender moments and sweet reconciliation.

I was completely drained. Frank came down to the hospital and insisted that Mary and I go home. She drove for me. We stopped at CoCos and split a bacon and tomato sandwich and a piece of pie.  

It is now 10:30. Frank just came home. He told me he and Mike had a nice talk and he left feeling hopeful.

 Please feel free to write your thoughts in the comments. It will help me feel more connected to all of you who are reading this.

Tomorrow is another day.

The Five of Us

This is our little family.

From my sister Sue

This is so touching. I had to post it here!

Dear Sister, 

I believe that there is reason to hope for Michael at this time. He has been so sick for so long and his illness had given him no hope of escape.

He will have escape now. 

In his times of clarity, Michael took great comfort in Jesus and I know that in God's compassion, He knows Michael. 

Peace is yours for the asking, trusting God for his perfect will, and you are already overflowing with love and compassion. It is always spilling out all over all of us. Thank you.

All of our love is offered to you and Frank and Michael at this time. 

So, Hope for Michael, Peace for you and Love from you and for you. 

Love Sue

Running in circles

Today Frank and I drove all over San Diego county today taking care of Mike's business. His friends at La Costa Limo went over to his condo and cleared out most of his stuff and put it in his car.  Frank and I went over and got his car, picked up his paycheck and tried to get into his room for a few more things. We were able to get into the condo. But the door was locked to his room, so we couldnt get in.  Then I tried to get into his post office box. But the key didnt work.
So finally I gave up and got on the freeway and headed over to the hospital. It was 3pm when I got there. One of the social workers called and told me that they had found a place for Mike in a beautiful skilled nursing facility called Casa De los Companas in Rancho Bernardo. This is a temporary placement while they look for a more permanent one.  He will be only a few mile from us, and NOT in a busy noisy hospital.
Today I had a few sweet moments with Mike. He was awake, so I sat on his bed close to him and we said a few things to each other. Then we just looked deep into each others eyes for a long time. I felt very connected to him in those moments. And the sweet pain of loss washed over me.  Today I saw my son. The son I know and love. The son I always knew was there. It will be a long good bye.

A Place to die

Today my goal is to find a place for Mike to be. A safe place, a clean place, a place where his spirit can be set free. 
First I have to find out how much money he has. I think he has just socked his paychecks in the bank without spending much. If he has a nest egg we can look for a board and care facility near us. There are people who will help us. The hospital has resources that are at our disposal. 
Worst case scenario is that he will have to go on Medi-cal and go into a medi-cal approved facility.
Let's hope for a best case.
How can I make this experience one of hope and peace and love? I will use all my resources with God's help. I will stay centered and focused on the task at hand.

Day 2

Today Frank and I went to the hospital in the morning. We spent the day talking to doctors and social workers about what to do about Mike. The medication that they had been giving him in the hospital had helped clear the ammonia from his system and he was more lucid. We were advised to have Mike sign a financial power of attorney and a health care power of attorney while he was lucid. One of them had to be notarized. We called in a notary and all the papers were signed. We will be looking into his financial status so we will know how much money he has to pay toward a board and care facility. Everyone is quite eager to get him out of Kaiser. He does not need acute care. He needs a place to be where he can peacefully slip away. We made it clear to them that we can not take care of him. Im quite sure I would loose the balance I have created in my life to keep my bipolar disorder at bay.
So things are still up in the air. One positive thing about the day is that Mike was lucid enough to take part in the discussions about his care and to sign the powers of attorney.
So, this will be our life for this time that Mike has left with us. I hope I can give him what he needs and I hope I can give myself what I need. We are both deserving of care.

Nearing the end?

Why do I only think about this blog when things are not going well? I guess that when Mike is able to live his own life, I tend to not think about this disease that is slowly but surely killing him. Not that there hasnt been drama in the 2 years since I last wrote in this blog. But somehow I didnt feel the need to chronicle every turn in the road, every incident of good or bad that are the stories of Mike's life and ours.
About 6 months ago, we asked Mike not to call us when he was in trouble. We had been through so many crises that we were almost numb. We felt that at the ages of 66 and 76 we had a right to a life of peace. Mike agreed and was more than happy to step out of our lives. He had been trying to get us to see that he didnt want us involved in his daily drama. But of course it isnt easy to stick with these resolutions when that phone call comes from a friend that he has been in a car accident, or is in the hospital again. Mike might insist that we not be told of his condition. But the reality is that we are his next of kin. And sooner or later we are going to get that phone call.
We got it yesterday from a friend who works with him. He and another friend had been sitting by his side in the hospital day after day. He refused to let them call us. He was discharged from Palomar Hospital and sent home to care for himself with the help of a hospice nurse who would visit a couple times a week. His faithful friends went to check on him and found him incoherent. They called the hospice nurse, and she called an ambulance.
He was taken to Kaiser Hospital in San Diego. The doctors and nurses pressed him to allow them to call us. But he still refused. Finally his friends Jon and Joe convinced him that we needed to be notified of his condition.
We got that call last night from Jon, a caring and compassionate friend. We immediately went to the hospital. Mike was barely awake. He opened his eyes and looked at me as I sat on the bed stroking his shoulder. But I dont know if he recognized me. More in the next entry.