Walking in the Dark

Dear readers,

I wrote this back in late November. I wanted to keep the sequence of the story in order. But I had to publish the previous post first, so that those of you who know Pat and know that he passed away in December would not be confused. Thanks for reading. The following chronicles events that led up to his death.

Early December, 2013

The slight autumn rains came and left California still in drought. That particular gray of late November rolled in on thick clouds from the sea. Pat and I were no longer in Santa Ana. The good-enough nursing home Pat entered from Newport Bay Hospital in October was not anywhere near good enough.

I will say this:  Something must be done about nursing homes. Especially the long-term care wards which include facilities geared toward elderly dementia patients. Too many of the LVNs and CNAs (and this is not to disparage all of these medical staffers, many others of whom are truly loving, professional and committed individuals) are under-trained and seem disinterested in doing their best for their patients. My fear is that they receive no special training in caring for severely demented and disabled people. If a patient is unable to get a cup of water for himself, or if he cannot use a straw or pick up a cup, or recognize what a plastic tumbler of water even is, he too often will sit all day, day after day, with almost no fluids.

The nursing home staff was not the only grossly negligent player in our situation--so was the doctor. She refused to come in and check on Pat when I asked her, although she had put him on IV fluids because his blood work didn't look good the previous week. She had him taken off the IV after two days and then didn't order new blood work until I got her on the phone the Friday before he went into crisis. Even then, she made the order for Monday, leaving him untreated for the entire weekend.

When I saw how badly he was doing on Sunday evening, I asked the supervising nurse if he should go to the hospital. Her response? "Do you want to send him to the ER?" I said I wasn't a medical professional and wasn't sure if that was the best step. I asked what would be done for him at the hospital. "They wouldn't do anything more than we're doing here," she replied. By Monday morning, he was in acute pain, terrified and near death. The blood work showed huge irregularities in his sodium and potassium levels.

The incomprehensible negligence of the day-to-day nursing staff at Royale Health Care Center (yes, I will name names)--not taking the time to hold a cup of water to his lips a few times a day--caused Pat to become so terribly dehydrated that he collapsed in renal failure. Had I not stood in the hallway outside his room and screamed at the nurse that we didn't have 45 minutes to wait for transport to the doctor's hospital which was another 45 minutes away, that she had to call the EMS now; had there not been a hospital five minutes away; and had the doctors and staff there not turned out to among be the best and most caring I found anywhere in this desperate journey, he would have died then.

When I met Pat's nephrologist (kidney specialist) at  Santa Ana Central Community Hospital's ICU, he commented that Pat's kidney failure was not uncommon in nursing home patients. He said, "You've probably never seen this. I see it all the time, several cases every week. I call it water deprivation syndrome."

I was devastated by this turn of events. I'd been unable to see Pat for several days right after he was admitted to Royale because I caught a bad cold and didn't want to take it into the nursing home. Chris was on fire duty and not available. If we'd known, of course, we would have made arrangements. This was one of the times that I felt like I'd been too trusting, and not covered the care issue as I should have. I'd taken a break, tired, burned out and sick, and, as happens so often, a crisis ensued.

There were also miracles. After the renal failure abated, my family and I found an excellent nursing home in San Diego. I was able to stay with my cousins just 15 minutes away. Pat survived the kidney collapse, though he could no longer sit up by himself, turn over unaided, or use his arms and hands. He still knew me, and Chris, and my cousins, Guy and Sue.

Sometimes he asked me where we were. "We're in San Diego," I answered. "Where our cousins live. You're in a nursing home, doing rehab to help you get stronger." I didn't believe that last phrase. I wondered if he knew that I didn't.

He could still swallow, but had to eat pureed food and drink thickened liquids. Once, as Sue was helping him drink some thickened ice tea, she asked how it tasted. He answered, "Lousy." And smiled. That was one of several times he showed his old wry self to us. The other was when two of the women in his earlier life called in one morning to send love, one after the other. I told Pat, "Now all your women are lined up." He gave me a classic Pat deadpan look. Then a smile. It amazed me that, even in the last weeks, signs of his distinctive personality flashed through.

I reject vehemently the idea that the Alzheimer's/dementia victim disappears in the disease, that the person the caregiver once knew no longer exists or can be reached. It would be easier if this were true. But my experience was that Pat was definitely still there, even up to the last hours of his life. Stripped of all that he had been able to do, to say, to think and to dream, the essential man was still there, reaching through the wall of illness at times to contact me and others he loved.

I can't imagine what it must be like to be trapped inside this disease. My hope is that deep spiritual communication is taking place between the patient and her or his God. When a priest visited to give Pat communion, he was visibly comforted and gave her a smile that lit up the room when she held his hand and said the Lord's Prayer. She said she'd never seen anything like it.

In the final reaches of illness, it becomes very hard for the caregiver to communicate the condition of his or her spouse or sweetheart. I really didn't know how to reply when friends asked, "How's Pat?" Which doesn't mean at all that I didn't want them to ask. I just didn't know how he was. He was far beyond thin; the bones in his arms reminded me of chicken wings. He slept more and more, ate less and less. He often gazed at something I couldn't see, his eyes following movement, his face lit most often in a smile of beatific delight. Once I asked him if he saw something. He nodded. I asked, "Is it beautiful?" He replied, "Yes."

By late November, after he suffered several seizures, my guess was that Pat was dying, but I didn't especially want to tell that to concerned friends, because I didn't know if it was imminent or months away. His doctor said he had sustained profound and probably irreparable neural damage, although a CT showed no evidence of new strokes. Just a culmination of all the TIA's, a soaking with sodium during the renal failure and the relentless ravages of beta amyloid plaques.

The strange thing, though, was that his mental state seemed to become more clear as his bodily systems collapsed. My theory is that, once he was no longer eating much, the burden of digesting and metabolizing was lifted and his energy could divert to recognition. When I spoke to him, I felt that I could use regular speech again, instead of the slow, short sentences I'd tried to employ for the last year, and that he was understanding me. Even on the last day of his life, he recognized me, turning his eyes toward my face. He recognized his friend Bill, who drove all the way down from LA just to say goodbye.

And he knew Chris, his son. It was Chris who was with Pat when he died. I had stepped out to nap, anticipating a second all-night vigil. This was, I recognized later, just as it should have been.  Pat was with his baby son when he took his first breath and it was fitting that Chris was with his dad when he took his last.

I arrived just a couple of minutes afterwards. I knelt by the bed to stroke my husband's face, his hands and chest, to say those hard farewells, while my cousin's wife read Psalm 139:  "Oh. Lord, you have searched me and known me. You know my sitting down and my rising up. Darkness is not dark to you; the night is as bright as the day. Darkness and light to you are both alike."

These are the mysteries of our human mortality.