A "slight" stroke, they called it.
Granted, Mom was ninety-four. And she had other problems: chronic ulcerative colitis (or possibly Crohn's Disease), glaucoma, hearing loss. Unsteady on her feet, she used a cane and no longer went out alone.
But she had been doing remarkably well at home. She lived on her own in a beautiful senior apartment. Did her own cooking and light housework, took pleasure in TV and telephone chats with friends. This was an alert, involved woman who loved her home and enjoyed a good quality of life.
The stroke left her confused and disoriented, and severely affected her speech. There was no paralysis, and doctors were initially optimistic that she'd be able to return to her apartment. But she made less progress than expected (I suspect an actual series of small strokes), and I began hearing the recommendation "adult home."
Virtually everyone agreed she should first go to a rehabilitation center, which would help her recover as fully as possible. The XYZ Center (I won't risk giving its real name, for legal reasons) was highly recommended. Health care professionals assured me it provided excellent rehabilitation for geriatric patients, with a typical stay of three weeks. Two relatives of former patients gave glowing testimonials. I was told patients received intensive therapy.
But our experience there was a nightmare. Mom's condition deteriorated steadily. A month after admission, with no progress made, she was back in the hospital with a flare-up of bowel problems. This time she was discharged to a nursing home. But her diarrhea was never completely controlled; a few weeks later she was dead.
Certainly, not all the blame can be laid at the door of XYZ. Given Mom's age and medical history, the outcome may have been inevitable. Nevertheless, I was extremely dissatisfied with the Center's performance.
The entire first week was devoted to evaluation, before anything was done for the patient. That had not been explained in advance.
Able to visit only at night, and lulled by all the good things I'd heard, I was too naive to ask exactly what was being done during the day. I eventually learned patients in Mom's unit received only an hour and a half total therapy a day, five days a week--a half-hour each of physical, occupational, and speech therapy. I was told very few patients were screened into the more demanding "hospital unit." None of this was explained until Mom had been there for weeks, and I began complaining about the lack of progress.
In the hospital, nurses had gotten Mom on her feet. But in XYZ, she (like most patients I saw) was kept in a wheelchair at all times, despite my objections.
Possibilities for "recreational therapy" supposedly included weekly Mass and Rosary. (Classifying religious devotions as "recreation" is, of course, offensive in itself.) I indicated Mom would be interested, but no one followed up. It also proved extremely difficult to arrange to have her hair done. These seemingly small things can be important to an ailing person's morale.
The nurse in charge of Mom's case, Barbara J., mentioned that she was "new to the staff." Not long afterward I was told she was no longer on the case; Sue M. had taken it over. Before I had a chance to meet Sue, I learned she "wasn't there any more," and Barbara was in charge again.
I never met a doctor. When I met a physician assistant (by chance), he said he was glad to see me, because there were things he wanted to discuss. But no one had bothered to call me, even though I had left home and work numbers and urged the staff to call at any hour, day or night.
After Mom had been there a month and was back in the hospital, a staffer suggested that if she returned, it would be a good idea to bring her volume-control telephone from home, so she could talk to friends. An excellent suggestion. But why didn't they think of it sooner, especially after devoting a week to "evaluation"? It had never occurred to me that it would be permissible.
Prior to that hospitalization, three staffers assured me Mom could return to XYZ without having to reapply for admission. They said there would be a twenty-day bed hold, and even after twenty days, a returning patient would be given priority. I later learned none of that was true. I was told that if staffers had said that was the case, they must have confused the policy of the rehabilitation center with that of an affiliated nursing home. We did have to reapply. They rejected the application; but by then, I had decided not to send Mom back in any case.
Did XYZ bear direct responsibility for the recurrence of Mom's bowel problems? Perhaps not. But...I once went into one of their public restroom stalls after an RN came out, and discovered she hadn't flushed her bowel movement completely. And I recall seeing "Enteric Precautions" signs on both Mom's room and the one next to it (on the other room first, I think). The two rooms shared a bathroom. Could staffers' inattention to cleanliness have caused Mom to pick up an infection? I'll never know.
When a loved one suffers a stroke, family members are in shock. If one person has to make all the difficult decisions that follow--while simultaneously coping with a stressful job and other responsibilities--the pressure can be almost unbearable.
Nevertheless, I'd urge anyone else in that situation to check out a suggested rehabilitation center more thoroughly than I did. Make sure endorsements are based on recent experience. Before making a commitment, inquire about evaluation periods; different units a patient may be screened into; the amount of therapy received daily by the average patient. Ask about staff experience and turnover. Ask how often patients are seen by doctors. Learn the institution's policy if the patient should have to be hospitalized.
Get everything in writing.
If your loved one enters the facility, visit frequently during the day. Demand to know what's going on. If you're dissatisfied, with anything, make a pest of yourself.
And as a last resort...get your loved one out of there!
Note: All the above is true. But even though the writing instructor urged me to submit it to my newspaper, I didn't. I was afraid of legal trouble, and had too much stress in my life as it was. Also, I couldn't prove any of my allegations.
I should mention that this happened in 1993. If the quality of care my mother received was typical at the time, it might not be today.