Another Blow

Today I asked to have some time with Mom alone.

I was supposed to be a big day. We have been waiting all weekend to talk with a social workor that works at the Hospital. She was, according to the on-call social workor we spoke with on Saturday, supposed to have list of the options available to us for "long term" nursing care which were covered by Mom's insurance. We had been given a Hospice pamphlet by a rep on Friday, and a booklet of various homes, facilities, and care options. But because we were going to meet with a social worker with a narrowed-down list, I didn't look too closely at it (Dad looked at it and said that it was hard to make heads or tails from the "facilities" booklet). When we walked into the hospital we went into Mom's room to see if she was awake - but she wasn't awake, so we went looking for the floor social-worker. They paged the social worker when we asked, and we went to sit in the loby-like area near the elevators. As we were waiting I asked Dad to see the "facilites" booklet, and the Hospice pamphlet. I learned a few things about Hospice that I didn't know - that Hospice was a "final transition" organization, that mainly is in the business of making terminally ill patients who are in the final days as physically, emotionally, and spiritually comfortable as possible - and where pain, infection, etc. are concerned, they will manage discomfort and pain with medications they can use without saline IV's - but thats it. I guess I always thought Hospice was like a full-time nurse, present, to administer whatever treatment battery that was being used to battle whatever the illness is, as long as the patient wishes, to whatever end the doctors and patiens wish. But that is not the case. Hospice, though they are on-cal 24/7 will normally visit 3-4 times per week, and will clean-up the patient, and talk with her, and will comfort her, and bathe her, and do what they can to manage the patients pain - and do nothing to extend or shorten the patients life. This became clear to me a few moments before the social worker and Hospice Rep approached Dad and I, after responding to our page.

The convesation began with introductions, and Dad standing up next to tables and chairs.
I suggested that the conversation we needed to have was likely longer than what Dad's questions and the representatives needs to communicate with us could endure with us all standing, and that maybe we should all sit down. To which I was immediately met with "slap-you eye", and cuffed with something close on the order of "I want to stand so I can see her lips and understand her better - if that alright with you-". I stood up and walked around the corner - can't remember for what now - and when I came back the social worker and the Hospice rep were seated, and Dad was standing opposite them, looming. I seated myself next to them and listened. Eventually it became apparent that the Social workor did not have the information that we were told that she would, she did not know anything about Mom's specific insurance benefits, and that we had an understanding of Mom's medical needs in terms of an IV and nursing staff to administer her Chemo, etc, that seemed to come as surprise to them. Dad and I indicated (Dad had communicated to me what the last meeting with Mom, He, and Dr. Wabash had discussed) that she would need to be monitored regularly for blood chemistrly, that she would need electrolytes and other treatments she was currently recieving at the hospital to continue wherever she was finally moved. To which the Rep and the social worker responded with confusion.

The meeting ended with our telling them that we needed to talk with Mom's doctor, and that until we had a more solid understanding of Mom's nursing and care needs we really couldn't identify what facilites were appropriate. The social worker agreed that was a good idea. She gave us her card, and asked us to give her a call when we had a chance to get things figured out with Mom's doctor.

I asked Dad if I could stay with Mom for the rest of the afternoon - and he graciously let me have that alone time with her.

A few hours later, several nurses came in and were going to clean Mom up, and change her mattress, and do some other, necessary, and very compromising maintenance on her. I excused myself, and was on my way to the Lobby area when a very nice Doctor asked if she could chat with me.

She introduced herself to me, again (I had met her the a few days before, she recognized me) again, and indicated that she was in the last meeting Dr. Wabash had with Mom and Dad, when Mom's mental state was sure enough to make decisions. She indicated that the decision Dr. Wabash and she understood that Mom had come to, was that she was done with treatment and wanted to be as comfortable as possible until she passed. Wide eyed - I told her that Dad had indicated to me - and mom in the few moments of Lucid conversation we had on Friday - that her liver Chemo was still being administered in order to retard the loss of her mental acuity as much as possible. She said, that at the meeting, it was clear to both she and Dr Wabash, that mom wanted no further treatment of any kind. **I think the Hospice Rep and the Social Worker spoke with this doctor earlier, and that the questions we were asking about long term nursing care didn't match the terminus of treatment which was being respected. At any rate - she said that Mom's condition was worsening rapidlym that there had been no indication that the chemo treamants mom had ben recieving were affective at all on the cancer in her liver, that the Lactilose which was preserving some of her mental acuity before was no longer working like it should, that mom's weakness was progressing, and as of this morning they had discovered that Mom was in renal-failure. She said, that she suspected the direness of the situation had not gotten through to Dad for one reason or another, and that with the news that her kidneys were failing, that it seemed Mom would not last much longer, and that it would behoove her to get her wherever she wanted to be for her last days (Mom asked to be at Shannon's house near Shannon and the grandkids (Mom LOVES her grandkids - and forever one of the saddest things in my life will be that those kids won't know her, and that my kids - shoudld we ever be able to have any -won't ever laugh with her, or feel the warmth of a hug from their grandmother).

This was all very difficult to hear, and very much a shock. I thanked her for her courage to talk with me, and give me some very bad news in order to try to halt some very dangerous confusion. I gave her my cell number and asked her to call Dr. Wabash, to see if she could meet with Shannon, Dad, and me ASAP. I then walked back to the condo, called Shannon - leaving a message that she should call me back ASAP - and went into talk to Dad. Which I wish I could say went smoothly - but which, in fact, looked like Sherman's march to the sea when complete.

Last Friday I was sad that Mom was talking with us about her final days, which Shannon and I understood to be many weeks away. This weekend I was sad to watch Mom struggling in her own mind, and sad that our time seemed to be slipping away from us. Today I am sad that even those hopeful weeks seem have been snapped away, and it is days left , not to talk with our mother whom we love so dearly, but left to hold the hand of the woman whom we love so much while there is a little warmth left in them, and with almost no idea whether she even knows we are there.

I was with her for a few hours today. I prayed for her, and held her hand. I put chap stick on her lips, and gave her water. She opend her eyes wide in a rush, and tightened her grip on my hand in hers, and she said, "I love you Matthew". I told her that I knew she loved me, and I loved her too. By the time I finished those few words, her eyes were lost again, and I was as heartbroken as I have ever been in my life that that may be the last time I heard those words from her.