A Medical Nightmare

by

Christine Bruun

Recently I was faced with the task of caring for a sick parent. I stayed with mom during her thirteen hour surgery for cancer, and kept vigil at the hospital during her entire stay. It was necessary for me to learn everything I would need to care for her. This included tube feeding, medications, care of her trachea tube, drain tubes, cleansing and medicating of stitches and skin grafts.

I was concerned about her coming home too soon and having a relapse, so I arranged for her to stay at a rehabilitation center for a few days after being released from the hospital. There, I was assured, she would receive excellent physical therapy and care while she built her strength both nutritionally and physically. This step seemed to make sense to me. I had in my mind a facility where physical therapists worked diligently with the patients, (building muscle strength and balance), while helping her to regain her tone and energy that would allow her to arrive home well on her way to recovery. I pictured pleasant surroundings where both the soul and the body and mind could heal.

You see, we were concerned that after the severity of the surgery, (which included removal of part of her tongue and a piece of her jaw bone, insertion of a metal plate attached at the jaw hinge and running to her chin, removal of her lymph glands, microsurgery reattaching veins and nerves and muscle in the neck and shoulder area, and the insertion of a trachea tube), that she might be unable to climb the stairs to the bedroom and bath until she had the opportunity to regain some of her mobility and strength. We saw the rehab center as a halfway house that would allow her to gradually recover while providing her with the rehab and physical therapy to build her muscles damaged in the surgery.

We pictured conscientious medical care, dedicated dieticians, and skilled nursing that would dispense medications, see to her various needs, and maintain her nutritional well-being, necessary for a swift recovery. These things were very important since she still had to face 6 weeks of radiation which would effect her ability to eat and perhaps her life. We wanted her to have the best of care while she was convalescing so she would have a head start during radiation treatment.

One of the staff of the University Teaching Hospital, where the surgery was performed, recommended a rehab center an hour from home since none of the local care facilities had beds available. There was only one out of three that we would have even considered placing her in that were within her home town. Since the hospital employee said that his father was in a rehab center, I took his recommendation and made the arrangement for my mother to be admitted the next day. Surly he would have his father is an excellent facility.

I drove mom's car, (which had no air conditioning), while a special transport van brought my mother to the care facility. When I arrived they were just beginning to admit my mother. From this point on I was in total shock. The first thing that happened was that they evaluated her mental condition by asking her questions like, "Do you know where you are at?" "What time of day is it?" The look on mom's face was stark terror and anger. I feel there is a more dignified way of asking the questions that will seem like conversation rather than the inquisition. A professional, engaging the patient in a normal conversation can evaluate the mental ability by the body of the conversation. Questions like, "It has been a long day. What time were you released from the hospital? How long did you stay in the hospital? Have you eaten today? I have forgotten what day this is. Is this Monday? There are lots of obvious ways to approach this evaluation without making the patient feel concern.

Then, they ignored her altogether when they talked about her or her care, addressing us instead of her. My mother is a very together person who publishes a news letter and a has written a play that is displayed in a local museum. She is not a senile, geriatric patient needing to be warehoused. This 75 year old, spunky lady can hurl hilarious quips and funny anecdotes with the best of them and it was very obvious at this point that she was in the WRONG place! It did not end there.

The clock showed 2:00 p.m. and they were informing us that there had been no medications or food supplements ordered for her, even though the arrangements had been made the day before. She had her last feeding and medications around 9:00 a.m. before she left the hospital and it looked like it would be many more hours until she would be able to receive these necessary items. After a couple of hours they did manage to administer a few cc's of water into her feeding tube. We were ecstatic, to say the least! (sarcasm) ...Just a note to let you know that it was 8:00 p.m. before mom was fed and medicated.

On top of this there was no air-conditioning in the building during one of the worse heat spells remembered. We placed cold compresses on her, trying to keep her cool. It was difficult for us to breathe in the heat. I can only imagine how she was feeling, and just that day out of the hospital. They had no spare fans, no TV in her room, and the only phone was in the hallway where patients had to receive their calls. But it got worse...

...My sister-in-law and I walked down to the staff break room to buy a can of pop because of the heat. We stopped and talked for a short while about our observations and concerns about this place. Suddenly my mother appeared in the doorway. She was upset. An employee had told her she could not get up and walk unattended. She told him where to get off and came to find us. This is a lady used to taking care of herself. She was not an invalid, just a bit weak and in need of some R&R before returning home where she would once again do all the things she was used to doing.

We talked with the nurse on duty and got that all straightened out, but by then my mother had decided that she was going to walk all the way home if necessary. She wasn't staying there! At that point I didn't blame her. We assured her that it was only temporary and I would try and get hold of the doctor to interceded so we could bring her home. We could have checked her out right then, but we did not know that... And, the car had no air conditioning. It was becoming obvious that I could give her better care than she would get at the facility. They had placed her in a room with a lady who was very ill and very handicapped. Her constant coughing and gagging really upset my mother. The lady across the hall spent the entire time hollering for a nurse, who never appeared. Mom was becoming more distressed as every minute passed. We had assumed that she would be placed in a wing that housed those who needed some care, but were ambulatory and not senile. Not so. This can only be categorized as lacking in understanding and empathy. We thought this was a rehab center, not a nursing home. At least that is what the sign said. There was no rehab. There was no work out room were patients were taken for physical therapy. This was a warehouse.

Finally we had to leave, but we assured my mother it would only be a short while until she would be home. We both thought, there wasn't much else that could happen before morning. So we left feeling guilty and determined to contact who ever was needed to make her escape. Well, much more happened after we left. It was the worst yet.

My mother was tied to the bed, (well, she might well have been), It was necessary for a feeding tube, inserted in her nose, in order for her to obtain nourishment because of the surgery. She could not swallow or eat. They pinned the tube to her pillow, put the feeding drip on the slowest speed and left her there. She could not get up from the bed without pulling the tube out. She was captive. When she asked to be able to get up to go to the bathroom, she was told that if they gave her that privilege, then all the rest would want the same privilege. They were going to force her to pee her bed, sleep in it and stay tied to her bed all night. Thank God my brother stopped by before heading home from work.

I got a phone call. My mother's primary care physician received four phone calls. Needless to say, her physician was very upset. We all wanted to go back and pick her up that night, but we were forced by the lateness of the hour to wait until morning. We arrived at 8:00 am. and she was taken home.

I then provided her with the care she needed right in her home. She seemed to thrive and was ever so happy to be at home and free to come and go as she pleased, and attend to her own personal needs with dignity. Her primary care physician actually made a house call, (arriving in his bright red corvette), just to make sure she was OK. I was certainly impressed by his concern and his dedication. He even provided me with his personal home phone number in case of an emergency and offered help and advice at any time of day. This type of physician is a rare commodity in today's world!

I urge everyone, before placing anyone in a care facility, spend a day there observing. It will open your eyes. Trust me, most patients will recover faster and do better at home. There are home health nurses and other options available. Work closely with primary care physicians and do your homework when picking a facility for your family member. If a rehab facility is necessary after surgery, pick it in advance of the surgery and take your time to learn all you can first. You can hire care providers who will come to the home if there is no one to take care of your parent from the family. This may not be covered by Medicare. You will need to check into this service.

Home health nurses have to be ordered by the doctor. Make sure this is done before they are released.