Monday, April 22, 2013

Wendy, Can You Come Down Here?

I had just put my feet up in the recliner after getting home from Sunday Mass when I got a phone call  from my dad, who simply said, "Wendy, can you come down here?"

My dad never calls me.

My parents live right behind me, so I jumped up and ran down the sidewalk that connects our houses.  Inside I learned that my mom most likely had had a stroke.  Her speech was extremely slurred.

Within a few minutes I had Mom stashed in the car, and we were on our way to the hospital.  I should have called an ambulance, but I am so used to taking matters into my own hands, I didn't think of it.

So began an odyssey that continues to this day.  She was hospitalized for about four days, then transferred to a rehab hospital for about 20 days.  She couldn't move her left leg or her left arm.  Luckily, speech therapy quickly improved her speech.

Mom is sensitive to gluten, and I visited every day and tried to bring her real food.  One day in the first hospital, before she was transferred to rehab, she was given a bowl of cream of wheat and ate it, assuming that it was gluten free.  Her entire back became inflamed and itched horribly for two weeks.

I was astonished by the "heart healthy" diet she was put on.  On top of everything being pureed because the left side of her mouth was paralyzed, it was pretty much void of nutritional value.  The kitchen tried to accommodate her diet restrictions, but I discovered that a lot of the items that appeared on her tray had more to do with the hospital's contract with vendors than it did with patient health.  No good fat was allowed.  "Promise", a margarine created from chemicals, was provided.  I even went to the kitchen and asked for real butter.  They did not have any at all, ever.  So it didn't matter whether you were on the heart healthy diet or not, you were given a tub of chemicals to spread on your baked potato or toast.   I learned that the kitchen's priority was to provide a certain amount of calories, so they would round out her meals with packaged juice, ice cream, pudding, jello, etc.  Loads of refined sugar and GMOs were not a problem to them.

These directives all came from corporate.  The kitchen staff, on the other hand, was marvelous.  I talked to the manager on several occasions, and he was incredibly kind and helpful.  He let me provide some things for Mom, but that was soon found out and curtailed by upper management.  During a weekly patient meeting, where the different caregivers discuss the patient's progress, etc., the topic of me bringing food for my mom was discussed, and it was agreed that I should be told no more food from home would be allowed.  They even posted a big sign to that effect in Mom's room.

Other than the food issue, my mother had great care.  We became attached to several of the nursing and therapy staff members.  There were a special few who would come down just to visit with Mom when they had time.  They were so funny and sweet and really helped the time go by for her when I wasn't there.  Mom cried when she got discharged.  She got transferred to a nursing home to continue her therapy.  She had used up her Medicare allotment of time at the rehab hospital and was being downgraded.

The nursing home was depressing.  And the level of care was greatly reduced from the rehab hospital.  I think she saw a doctor only once and that was briefly.  At rehab she had had a team of three doctors that she saw regularly, plus plenty of nursing staff.

 The nursing home kitchen staff seemed totally ignorant and could not understand the "gluten free" concept.  We were extremely blessed to have an amazing speech therapist who would go to battle with the kitchen on a regular basis about Mom's diet--not only the gluten issue but also the matter of giving her adequate protein.  The therapist told them to give her meat with her breakfast every day, but they rarely did unless this therapist confronted them, which she did many times.  God bless her!

The physical therapy department was very good at the nursing home.  She was making good progress with her walking until she had several setbacks of feeling too weak to get out of bed.  It turned out that her blood pressure was plummeting.  There were no guidelines from the doctor on when to withhold her blood pressure medication, so some nurses would still give it to her even if it was 115/70.  Then it would get so low that all she could do was stay in bed and sleep.

At the rehab hospital, Mom had been given breathing treatments several times a day for her COPD.  At the nursing home, those pretty much stopped.  They finally started giving her one every evening.  One night when even that one was missed, I inquired of the RN, and when she pulled up Mom's chart, I was shocked to find out that the doctor's orders said that she was supposed to be receiving them three times a day.  I assume Medicare was getting billed for these treatments that she did not receive.

Close to Christmas, Mom developed a bad cough and was not feeling good.  Again, her therapy progress stopped.  I called the cough to the nurse's attention, and she said that she would start the process for getting blood work done.  Two days later, still no blood work, and Mom had not been seen by a doctor.  At this point I learned that she could go back to the rehab hospital.  Fearing that she had pneumonia, I called the nursing home and told them to discharge Mom back to the rehab.  As soon as the lady from the rehab came and did her paperwork to get her back over there, I packed Mom and all her stuff up, and we left, even though it was already close to 8 pm.

She did indeed have pneumonia and ended up staying at the rehab for another couple of weeks.

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