Alzheimer's disease · Assisted living · Caregiver · Caregiving · Grief

Transition, part 1 / October 10, 2006

“I have no idea what the day will bring.” That’s how I ended my last post, and the following day, unfortunately, did prove to be memorable. Seven hours in the emergency room with my mother, who had collapsed at 5 that morning. I couldn’t even sit her up, she was so weak, and I had to call the rescue to get her to the hospital. She was awake and surprisingly alert throughout, but when she was eventually told that she would be admitted, she got MAD.

I should know by now that a word as simple as “here” must be defined when I’m talking to my mother. We told her that she was going to stay “here” (meaning the hospital) for the night, and she thought we meant “here” (the cubicle in the ER) and rebelled. Pulled out the IV, pulled off the blood pressure cuff, tried to get off the gurney. We’d get her calmed down and it would start all over again.

Once she was taken to her room she calmed down again and seemed to settle into bed. The nurses and CNA’s came by and fussed over her, and she loved it. One of the nurses had cared for her own mother during her Alzheimer years, and she was especially attentive. I sat with my mother for an hour or so after she was admitted, and we talked about I-really-don’t-know-what, but since my mother seemed happy I tried to follow her train of thought, allowing myself to feel just a bit relieved, and then–she threw off the covers and announced that she had to get home in time to make dinner for her husband and daughters. And so it began again. I heard my own voice speaking sternly to her, saying things like, “You are staying right HERE.” She got very mad at me yet again (”Grow up!” she hissed at one point) and pushed me away when I tried to hold her hand. I finally just said, “I’ll be back” and left her with the nurse. I later learned that the staff were forced to restrain her in a chair by the nurses’ station for most of the night because she was so agitated–she pulled out her IV’s several times and tried to get away.

So here we are, three days later, and she is still in the hospital while I’m in limbo. I’ve now stepped even deeper into the medical maelstrom where the case manager is trying to get my mother into a nursing home before we even have a diagnosis. My sister and I haven’t even talked to her doctor yet (he was away for the holiday weekend)–we don’t know what caused her weakness. I’m told that if she can’t walk, then she can’t be in assisted living. I’m also told that Alzheimer’s Disease alone is NOT enough to qualify someone for skilled nursing care, so if there isn’t something else wrong she won’t be eligible for Medicare/Medicaid funding for a nursing home. I’m also told that if she IS eligible, the co-pay for days 21-100 is 20% of the daily cost, and NOT the flat fee that I’ve been previously told about. “She doesn’t look like she can walk,” said the case manager, who saw my mother for the first and only time today. As my Jewish friends say: OY.

One thing I do know is that my mother cannot be alone. The memory of her on the floor beside her bed breaks my heart. I’ve been awake these past couple of nights wrestling with the realization that this is the Transition I’ve been dreading. I’ve cried at the idea that she may never set foot in her house again. I’ve cried at the impossibility of me taking care of her at home any longer. So much of this is my own transition, too. Having to face the ultimate fact that I can’t take the disease away, that I’ve got to work around the immovable object–which seems to become more rigid with each day.

And so here I am, at the end of another enervating day, somehow getting through it all. I heard myself speaking firmly to the case manager today and wondered where that authority came from. I wasn’t being obstinate or unreasonable, but I needed to curtail her assumption that just because my mother was ancient and demented she needed to be in a nursing home. First of all, I’M calling the shots, and if my mother eventually moves to a nursing home it is not primarily because of her age and illness. It’s because the powers-that-be do not provide me with an alternative other than one that will grind me down, too–physically and financially.

It is mostly thanks to the folks who are represented on my blogroll that I am feeling capable of finding the particular patch of ground I need to be on to cope with this all. To cope and to advocate at the same time. I think that is how I’ll manage.

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