Oct 28, 2012

Do You Really Get to Choose the Facility for a Dementia Patient?

The last time I saw Great Grams, a few days before her death, she was restrained in a chair sitting near the nurses’ station, watching everything.

By Max Wallack

Do You Really Get to Choose the Facility for a Dementia Patient
Great Grams (Gertrude Finkelstein) and Max Wallack

No matter how hard you try to keep a dementia or Alzheimer’s patient at home, eventually the day may come that it is not possible.

We had planned that that day would never come for Great Grams.

She had spent about a week in a major teaching hospital because of leg pain. The doctors tried a great number of medications. Nothing really seemed to help. I suspect the pain was really caused by some of her faulty wiring in her brain.

However, while she was in the hospital, the doctors realized just how much she had deteriorated mentally. She was choking on food and rarely communicated.

However, Great Grams had a compulsion to run, and she was going to run every chance she got. They had to hire a “sitter” to stay in the room with her. Even the sitter couldn’t handle her. When Great Grams saw a young child visiting someone, she was running to play with them. Eventually, they used diapers to tie her to the chair.

Great Grams had been on Reminyl. Her own doctor had told us that when a person who is on Reminyl stops taking the drug, they decline rapidly, quickly losing all the abilities that the drug had help maintain.

During that hospital visit, some physician decided that the Reminyl wasn’t doing her any good because she was in such poor condition. So, he stopped the drug. That was really the beginning of the end for Great Grams.

Great Grams came home with us soon after. She had been put on hospice home care. Included was a 24 hour nurse available by phone. The nurse was called many times those first few nights.

Great Grams wouldn’t sleep. We rented a special bed with sidebars. You would think that would work on a small 93 year old woman, wouldn’t you? Nope. All that did was make a higher surface from which Great Grams could fall on her climb out.

Grandma was exhausted. Grandpa slept on the floor at the door to Great Grams room just to keep her inside for a few hours so Grandma could rest.

After a few days, hospice took her off their list, saying they couldn’t handle her. They suggested maybe she had another urinary tract infection, and we should take her to the local hospital. Great Grams “agreed” to go, even taking off her rings and handing them to Grandma. She must have understood at some level.

Of course, the hospital did find a urinary tract infection. They always found one whenever they tested Great Grams. They kept her for several weeks. But, she did not improve. The doctor there, who had seen her only a few months earlier, was shocked at her deterioration. (No Reminyl).

In that hospital, she climbed out of the high bed frequently, and fell on the hard tile floor. Eventually, they also tied her down.

Then, the hospital decided they could no longer keep her, and that she was too ill to be cared for at home. They said we had to get her out of there within a few days, or the bill of almost a thousand dollars a day would be ours to pay.

A few days later, an “opening” happened in a dementia ward in a facility in a neighboring town. We were told we basically had no choice. Great Grams would be sent there in an ambulance.

Grandma went over to see the place. She had read about nursing homes. One thing she had read was to make sure there was no urine odor.

When Great Grams went to the dementia ward, she was almost knocked off her feet by the stench of urine! When the nurse showed Grandma what would be Great Grams’ bed, Grandma saw a small insect crawl across it. It was a nightmare!

HOWEVER, first impressions can be wrong. It turned out that the odor had been caused by a defective bathroom toilet which was being repaired. Insects were never seen again.

And –MOST IMPORTANT OF ALL- the nurse in charge of the unit was a man with a huge heart! He treated each patient as if they were his own mom. He had eyes “in back of his head” and was aware of where each patient was and what they were doing.

Each afternoon, he would put on Sousa marches and march in the halls with each patient who could do it. His staff took their cues from him and treated the patients with respect.

They made every attempt to avoid restraints. They even put mattresses on the floor on both sides of Great Grams’ bed for when she got up at night.

Every day, after breakfast, chairs were all lined up around the nurses’ station so the patients could sit and be entertained by watching the nurses come and go. When one patient had a visitor, it was a visitor for all the patients.

We still hoped to take Great Grams home. The head nurse told us that the hospital had “warned him” that we still felt that way.

However, Great Grams continued to decline rapidly. She couldn’t and wouldn’t eat. Soon, we had to give permission for restraints because she kept falling and falling. The head nurse was very, very kind to her. She couldn’t have been in a better place.

It didn’t matter that the rug was old. It didn’t matter that the nurses’ station was all scuffed and banged up. It didn’t matter that the physical therapy was in the basement of this old, old building which had once been a factory.

It mattered that the people who cared for Great Grams were very kind.

The last time I saw Great Grams, a few days before her death, she was restrained in a chair sitting near the nurses’ station, watching everything. She played tug of war with me -- pulling me toward her so strongly that I really could barely free myself. Then, she would pull again.

 She was still communicating with me.

Do You Really Get to Choose the Facility for a Dementia Patient?
Max Wallack is a student at Boston University. His great grandmother, Gertrude, suffered from Alzheimer's disease. Max is the founder of PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients. Puzzles To Remember has already distributed 12,646 puzzles to over 1298 Alzheimer’s caregiving facilities in all 50 states, plus Canada, Mexico, England, and Colombia.

Original content Max Wallack, the Alzheimer's Reading Room