Thursday, October 30, 2008


Last night when I went to visit my mother about 8:00, I found her quite angry. The words (and non-words) flew out of her mouth, and I finally understood that she was telling me that she hadn’t had any supper. When the nurse came in, I asked her about that. With a smile and a condescending voice, she told me, “Oh, she had dinner.” Mother was adamant that she hadn’t eaten, and the nurse finally brought her some thickened milk, all the while insinuating that my mother was confused and had just forgotten that she had eaten. I had my doubts. In spite of her inability to express herself, she is quite oriented and knows exactly what’s going on. On several occasions, she has conveyed information to me accurately, for example, about the results of her swallow study, about the plans to transfer her to a rehab hospital, etc.

When I got to the hospital this evening at 6:30, Mother had just finished feeding herself supper, even though she is supposed to have one-on-one assist, and her bed was fully reclined, even though she is supposed to be sitting straight up while eating. No one had showed up to help her, so she just ate. I figure what happened last night was that dietary brought her dinner and put it on the bedside tray out of reach, and after no one came to help her, dietary just came and picked her tray back up, uneaten. I raised a ruckus, and I don't think it will happen again, especially now that the staff understands that, even though they don't understand Mother, she can make me understand and can complain to me! How easy (and shameful) it is for some folks to shirk their jobs and then use the "she is confused" defense!

Tuesday, October 28, 2008


In the movie “Saving Private Ryan,” there is a memorable scene in which the young medic is sitting in a deserted church on a rainy night, writing a letter to his mother. Quietly, poignantly, he tells his comrades about how his mother would come home late at night from work, eager to talk with him about his day, but sometimes he would just pretend to be asleep, so he wouldn’t have to talk with her. Staring wistfully into the night and with puzzlement in his voice, he says, “I don’t why I did that…”

I suppose that for many of us that moment of realization comes too late. When we’re young and full of ourselves, our parents lives seem dull, their opinions irrelevant, their concerns laughable. As we grow older, our own concerns fill our thoughts: work, bills, our own kids and their problems. And as our parents become elderly, we sometimes, in spite of ourselves, grow a bit impatient with them…with their ever-present worries about their health, with repetitious stories about people we don’t know, with their complaints. In spite of our good intentions, we may call or visit them less frequently.

And then it is too late. In a matter of seconds, with a swift stroke of cruel fate, simple, familiar communication is severed. Words still flow, but they are scrambled, incomprehensible, disconnected, clanging/banging/changing. Communication, of necessity, occurs at a different level, and somehow, we understand. What wouldn’t we give now to hear the familiar sayings, the easy chit-chat, even the complaints?

Like that young medic in a darkened church, we remember all those times we pretended to be asleep, and wonder, “I don’t know why I did that…”

Saturday, October 25, 2008


It wasn’t THE phone call I dread…but it was close. Early this morning I was awakened by a call from a staff person at my mother’s independent living center, informing me that, when Mother was in the dining room for breakfast, she had been unable to get up from her chair and was having trouble putting words together. Inexplicably, they did not call for an ambulance, but simply took her to her apartment. I drove over to her place and my heart stopped when I knocked on the door several times and there was no answer. The door was unlocked and I went in, holding my breath. Mother was in her bed, but roused when I called her name. But the words that came out of her mouth were gobbledygook. I took her to the nearest ER and she was admitted with a diagnosis of a stroke.

Luckily her motor abilities seem more or less intact…she even put her shoes on and tied them before moving from the ER to her hospital room. She also seems to understand everything that is said to her. But she is unable to express any thought coherently.

She not only is dealing with the frustration of being unable to communicate, but has been dealing with the additional frustration of the staff treating her as if she is demented. I was dismayed to see this assumption from folks working on a stroke unit. If I hear one more nurse comment that Mother seems “confused,” I may scream! I went home for a couple of hours this afternoon, and when I returned the nurse informed me that Mother seemed confused and had tried to get out of bed. I talked to her for a while and was finally able to understand that she needed to go to the restroom (desperately). That is why she had tried to get out of bed, but no one had even tried to figure that out! I made sure before I left the hospital tonight to inform the nurse that Mother understands quite well and is simply having expressive language problems.

In what was basically a depressing day, there was one moment of humor. When the ER staff was trying to determine whether Mother was oriented, they were running through the standard questions: what day is it, what year is it, where are you? When they came to the question, “Do you know who’s the President of the United States?”, Mother got an angry look on her face and proceeded to give them an earful! None of it was understandable, but her intent was clear. The one coherent word was “Change.”

Saturday, October 18, 2008

The empty page

The empty page stares back at me with silent reproach,
Seeming to whisper:
Say something!
Speak from the heart!

But my mind, my soul seem as blank as the page,
Mumbling in defense:
Nothing to say…
My heart grows tired…

Once I wrote with passion about joy and pain:
Madness and grief,
Children and regret,
Death and sorrow,
Nature and wonder,
Dreams and hope.

But now only muffled echoes linger on,
Fading to silence:
Without emotion…
Waiting for stillness.

Saturday, October 11, 2008

Catching up

I’ve been absent from Blogger for a while, so thought I’d write a wrap up of the last few weeks.
After Gabriel’s trip to the ER, he did start taking his meds again, but it has taken a long time for him to reorganize after this major episode. Even now, he still has not regained his previous level of function. I fear that this is how it will be…that each episode will result in some degree of permanent deterioration. If I wake up in the middle of the night, I still hear him laughing for no reason. His short term memory is terrible; he forgets things after a day or, sometimes, after only a few hours. But at least he’s socializing with us again and joking a bit.

I often go online to research which states offer the best mental health services, with the hope of moving someday. But I had not really considered the possibility that there might be non-governmental programs that might meet his needs. I have now discovered the “Clubhouse” movement for folks with mental illness, which provides a center for vocational and social programs, structured around the “work ordered day.” There are such programs throughout the US and around the world, but the one that most interests me is the one in St Louis, which is one of four US training sites for the movement. I am really excited about the program and, if all goes well, I’d like to relocate to St Louis at some point so Gabriel would be able to participate.

After Gabriel stabilized, I returned to work. I’ve been working my butt off, catching up and evaluating new patients. It was pretty hard to get back into the work routine after such a long time off (I miss those long afternoon naps!), but I’m doing OK now that the evaluations are complete and I’m caught up on paperwork. My previous bitter feelings about work have receded…getting a nice profit sharing check and a raise did wonders for my attitude! Given the current economic crisis that grips us, I feel quite fortunate to have a career that is not really impacted by the economic downturn.

A situation this week has set me thinking about some of the values we hold. I’m thinking about those values that are relatively easy or clear cut in a general sense, but which are challenged when a personal situation throws them up in our face. For example, one might be opposed to the death penalty, until the murder of a family member challenges that long held position. One might be theoretically opposed to abortion…until a loved one becomes pregnant after a rape. And so this week my firm belief in the rights of the disabled met a challenge. I discovered that my daughter who is severely disabled is pregnant. This young woman cannot take care of any of her own personal needs. She is totally dependent on others to feed her, dress her, take her to the bathroom, get her in and out of bed, etc. As a parent and as a therapist, I have long advocated that people with disabilities be allowed and enabled to lead normal lives. But this situation has definitely challenged that ideal.

On a lighter note, we now have a porch kitty. I’ve never been much of a cat lover, but this pretty stray kitten had been wandering the neighborhood for a few weeks, digging in the garbage for food. So I put some food out for him, and that was that. His name is Mufasa. He’s what I call a “dog kitty,” ie, a cat that acts more like a dog than a cat.