Update: Hanging on

It’s been a while since I’ve posted a blog here. I’ve been short of time, energy, and inspiration. But thought I’d write the obligatory update:

My mother got out of the hospital on Nov 21st, about a month after she had the stroke. I’m pleased to report she was able to return to her own apartment at the independent living center, initially with a 24 hour/day assistant. But she is doing so well and needs so little assistance that we’ll end the 24 hour service at the end of this week and just pay for an aide at the center to help her with laundry and a few other small tasks. Her language is still severely impaired, so she has a home health speech therapist working with her three times a week. Everyone who has worked with her (aside from the jerks at Healthsouth) have commented on what a tough lady she is. Yep, that’s my mother.

While making daily trips to the hospital and getting things arranged for Mother’s return home, I’ve also been nursing my coonhound Boo through a serious injury. In my backyard I had a piece of lattice held up with two metal stakes. Foolishly, I never considered them a hazard. One day I came home from the hospital and noticed that Boo was awfully quiet and just lying by my desk. After an hour or so, I looked over at him more closely and saw that he had a huge gash on his side, about 8 inches long and gaping almost 2 inches wide! I finally figured out that he must have tried to jump over the little lattice fence, which he has done hundreds of time, and must have missed the jump and come right down, catching his side on the metal stake. So off we went to the 24 hour animal emergency clinic, where he had to be put out and stitched up. In spite of having an e-collar and antibiotics, the wound got infected and most of the stitches pulled out. So we just had to let the wound fill in. Poor Boo. In addition to the pain, he had to suffer the humiliation of wearing the e-collar (he’s heard every satellite dish, lampshade, and conehead joke in the book) and a white t-shirt to keep the wound covered. I’m relieved to report the wound is finally almost healed.

And then there’s the worsening situation with Gabriel. He has been taking his medication, but due to high white blood cell counts, he had to be taken off of Clozapine (the “gold standard” medication for schizophrenia). It’s obviously the one he needs, because since they took him off it, Gabriel has deteriorated fast. For the last month, Marcus and I have listened to up to 20 hours a day of hysterical laughing and constant pacing. At this point, I probably should be committed myself! I have been calling MHMR for more than a month, begging for them to get Gabriel in to see the doctor, but she wasn’t even there the last time he was scheduled to see her, and won’t be back at the clinic until Dec 12. I must admit, I’m feeling pretty hopeless right now. From the reading I’ve done, it appears that there really isn’t an effective alternative to Clozapine, not to mention that the type of schizophrenia Gabriel has is the most resistant to treatment and the one with the worst prognosis.

Sometimes it’s really hard to keep hanging on…

Even more shameful

Well, it just goes from bad to worse. I thought that my mother would get good care at Healthsouth Rehabilitation Hospital and would be on the road to recovery from her stroke. WRONG! She was there about 5 days and during that time, she seemed to get worse. She looked haggard, developed a pronounced tremor, moaned constantly, seemed agitated much of the time. The physical therapy assistant told my brother that my mother seemed not to know where she was, this on the same day that Mother had managed to communicate to me that she didn’t think the hospital was helping her, that she wasn’t getting what she needed. The PT assistant also said he felt that, after discharge, she would need 24 hour in-home care or a nursing home. Well, the next day I got a call that my mother had collapsed and had been rushed back to the ER.

It turns out that Healthsouth allowed my mother to become seriously dehydrated, causing her blood pressure to drop to a critically low level. It’s absolutely outrageous that someone who was dependent on others to get her water would be allowed to become that dehydrated in a HOSPITAL! Outrageous and disgraceful and shameful!

My mother was taken to the ER at the hospital where she was a patient right after the stroke (the one that didn’t give her dinner) because it was right across the street from Healthsouth. When it was determined that she needed to be admitted, I insisted that she be transferred to a hospital in Fort Worth, part of the Baylor system. She has been there for 2 days and her condition has improved 1000%. The nursing and therapy staff have been so kind to her, are provided attentive care, and actually talk to and listen to her. I’m much more hopeful tonight that my mother will be able to return to independent living, with some home health services.

Shameful

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!

Regret

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…”

Stroke

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.”