What a rollercoaster ride!

By now, I think most of you have heard that Mama is not at the critical stage we all thought she was. On Wednesday night, the discussion was about feeding tubes and palliative care. By the time Margaret and I arrived on Thursday, she was able to swallow, both soft food and liquids. The doctor called it miraculous...I beieve that there was confusion on her diagnosis due to what they referred to as Mama being septic due to the urinary tract infection. My understanding is that when you become septic...your body begins to shut down...one of those symptoms was her inability to swallow. If that had been due to her dementia, it would have been irreversible. Since it was more likely due to the sepsis...it was reversible once she got on antibiotics.

John was the first to arrive at the hospital. Shortly before he got there, Mama had become extremely agitated, she climbed out of her bed, pulling her IV out, and when the nurses tried to restrain her themselves, there was quite an incident with her scratching and biting the nurses. Because she would not stay in the bed, and kept trying to wander the hallways, they restrained her in the bed. When John got there, he was able to calm her down (they were trying to get a med order for something to calm her, but once family members began coming...this was calming enough for her, and she did not need the meds).

When Margaret and I got there, Mama was incredibly lucid for a short period of time, asking Margaret if she had found a job yet. And asking Amber if the baby had come yet. Then she had her weepy period of time. Once they gave her meds, she became very sleepy and this is how she was when I left her.

The psychiatric doctor came and examined Mama and discussed her history with us. She felt the meds Mama were on for bi-polar and dementia were a pretty good combination...but asked why she was no longer on Adavan (sp?). I told her that I thought Dr. Friedenberg had recommended a new drug in replacement that would be a patch...but I wasn't sure if that had begun. I believed the Adavan was not long-acting enough, and they were trying something that would be more of a continuous effect. She wrote an order while Mama was in the hospital for Haldol as needed either orally or by injection if Mama became to agitated.

The doctor thought Mama would be released as early as today (Friday). Will keep you all posted if that is the case. She will go back to the Forum Memory Care Facility.

Now about Papa...Several of us met with the hospice provider, Harbor Lights. This is the hospice provider that Dr. Harris is affiliated with. They were wonderful. Papa does qualify for hospice, and MediCare pays for this service completely. They do believe his swelling is due to edema from end stage kidney failure. The swelling will continue to get worse as the days go on. They will begin seeing him just about every day. There is a whole team that will work with. 3 days a week it will be a nurse's aide. Then there is a chaplain, a social worker, and a nurse that will be there on the other days. Today they are getting him a new bed that rises, and lowers for them to provide easier more comfortable care. It also makes it so he can rise his head or feet (similar to a hospital bed).

Tish took very extensive notes...so I will let her comment more in depth. I have asked to be the contact person for hospice. They have said that they cannot predict at this point how long Papa has...but that once the edema begins, it usually isn't a long time....but again they did not want to be pinned down to a certain amount of time. When they feel his death is imminent they will contact me. I will then begin a phone chain amongst the siblings. I don't want to be making 9 phone calls at that point. I will call Margaret, ask Margaret to call Paul...and on up the line. If you can't get through to the person above you, please leave a message and contact the next person. Does this sound acceptable?

Hospice will work on his comfort and quality of life. His dignity is of utmost concern for them, and I think this will help Papa tremendously. They will refer to themselves as from Harbor Lights, and will not say they are from hospice. They are here to serve the family as well. Any one of the siblings can call with a question anytime. There is a general phone number 1-888-227-6543. When you call that number, let them know who you are calling about, and they will get one of Papa's team to call you back. We have suggested a notebook to be left on Papa's dresser that we can write info, questions, etc. This will be for any one working with Papa and for any family members. It may take awhile to get people to use the notebook...But it could be a helpful tool, so we will try it.

I will receive a phone call twice a month automatically with updates. And anytime any major change happens, they will call immediately. I will post this info as I get it. I think that is about all the info I have for now.

I can't imagine a better group of people to be riding this ride with. I am learning so much about all of my siblings in the is process and am very grateful for what each one of you bring to the family, and to Mama and Papa.

Love,

Kate