Friday, April 20, 2012


One set of tasks I've kept putting off is everything related to finances and legalities. Mom and I had been talking about such things before her stroke, and were in the process of researching and gathering the necessary paperwork so it could all get done before the end of December. But her stroke was December 6. We had nothing ready. As next-of-kin I've been able to authorize medical decisions without any special arrangements. But everything else requires legal documents: general power of attorney, health care power of attorney, advance directives. Documents she is no longer able to understand or sign. We had discussed end-of-life issues long before, so I knew her general wishes in regard to DNRs and the like, and could pass those wishes on to her health care providers. But I was relieved when I finally found a signed living will among her scattered paperwork. It was several years old, but it expressed the same general wishes I had reported.

But now there are a lot of financial matters to arrange. I seem to be left with only one option, seeking guardianship of my mother. I researched this option when it was first suggested. It's a terrible process, involving serving papers to the afflicted person, appearances in court, having people tell the afflicted person they're being declared incompetent. I hoped we could avoid such a drastic, and hostile, ordeal. Mom's improvement in January made me hope that she would eventually be legally capable of giving me power of attorney. Maybe I was fooling myself, even if she had continued to improve. But she didn't. She got worse. And I've reached the end of the things I can do for my mom without power of attorney. So I'll be contacting a lawyer, one recommended by others in similar situations, to start the guardianship process.

I hate this.

Thursday, April 19, 2012

What fresh hell

It's been a difficult month, to say the least.

There was so much that needed to be done by the end of March. It was more difficult than I expected to finish clearing out Mom's apartment. After the initial progress I made when my friend came up for the weekend, it became harder to find help schlepping things to storage. Eventually a couple people came through and I got most of what I intended to store where it belongs. The remaining things either got added to the donate list or are now cluttering up my apartment. Fortunately the organization I chose to donate most of Mom's stuff to accepted everything I offered, so I was left with only a couple too-worn-out-to-donate items. I had to pay junk haulers to take those away the following day. It was a bit hard to see most of Mom's worldly goods hauled away, especially since she wasn't able to have any say in it. But it was a big relief to get that very significant to-do item done.

Choosing a permanent nursing home was a far more worrisome task. I ended up selecting one of the homes affiliated with the subacute facility Mom was in. I felt good about my choice when I visited the home and met with the administrator. Even though I knew I was getting a lot of sales pitch in our conversation, I thought I asked good questions and got satisfactory answers. The assurance that staying within the network of facilities would help with continuity of care was a factor in my decision as well. So even though I expected the move to be stressful for both Mom and me, I believed it would all work out well.

It really, really didn't.

Things started to fall apart from the moment Mom moved into the nursing home. There was no continuity of care. They weren't ready to set up Mom's feeding tube. They didn't even have the right formula in stock. One person after another came in to introduce themselves; and I told every one of them that the feeding tube situation needed to be resolved right away. I told them that Mom had already had problems with mild dehydration, so even though giving her nutrition could wait awhile, giving her water could not. I stood at the nurse's station until I saw the nurse fax the order for the formula and got them to come give Mom water through the tube. I must have stood at that desk at least five minutes straight without being acknowledged in any way. There were other, less urgent problems that kept cropping up as well. I was in tears by the time I left that day. And I was afraid I was going to have to somehow micromanage Mom's care, without being able to be there all day, every day.

Over the course of the next two weeks, I visited frequently, and saw Mom becoming more lethargic every day. Her doctor and I called each other several times, comparing observations and becoming increasingly concerned. He adjusted all the medications that could make Mom drowsy, and ordered blood work to find out what was going on. On Thursday last week I had a care plan meeting with all the people in charge of Mom's treatment at the nursing home. They assured me that they were on top of Mom's hydration needs and following all the doctor's instructions. Late that night I got a call from the home, telling me that Mom was being sent to the hospital because her bloodwork was still showing problems with electrolytes and sodium levels.

I went to the hospital the following morning, after a long night of progress reports from the ER and various admissions staff. Mom was on IV fluids and antibiotics for a UTI. She looked haggard and never really woke fully that day. When her doctor stopped by, he told me he had left me a phone message at work, telling me he'd just talked to the nurse at the home and thought he might want to admit her to the hospital. It turns out he made this call about an hour before I had that care plan meeting. They said nothing about it to me. At all.

Over the course of the weekend, Mom gradually improved. She went into the ER with acute renal failure, but by Tuesday her kidney function was back to an acceptable level. Mom's doctor and I talked a lot. We have no evidence that his orders hadn't been followed at the nursing home; but all his colleagues agreed that dehydration like that doesn't come out of nowhere. So we decided that Mom would not be going back to that nursing home. I didn't do much research this time. There wasn't really time to do so, and research hadn't helped much before. I chose a home that Mom's doctor frequently visits and approves of, that is easy for me to get to so I can continue to keep a close watch. Mom's first couple of days there have gone well. But I can only hope that, this time, I've chosen wisely.