Dignifying Dementia (22 page)

When Jim stopped reading, walking and moving furniture, it pained me to see him sitting in his chair doing nothing, so I was always looking for activities to keep him and his fiddling fingers busy. Carrie asked him to help her empty the dryer or take out the trash – even when he was wheelchair-bound.

We gave him his wallet, and he would take out the credit cards and the money and stick them in the sides of his chair or up his pant legs. Sometimes Sylvia would order Chinese food and give Jim the bill, so he could pay for it. She always handed him the take-out menu, which he held upside down and backwards but still pointed to his choices.

I bought decks of cards with animal pictures on them. He would hold them and look at them and sometimes say the word that was printed above the photograph. His interest seemed to derive from the size and shape rather than from the image. At times he took two cards to bed with him.

When he said, “I have no money,” I bought fake money and Monopoly money and put it in a plastic box. At times, he ‘worked' on that for hours. Sometimes he gave Sylvia and Carrie money from the box when they prepared his meals. Before she left on one of her annual vacations, Jim handed Sylvia $500 in Monopoly money. Sylvia welled up. Despite the fact that she was an inveterate shopper, she claimed she hadn't spent it. We gave Jim washcloths to fold. After his twisting them, they looked like serviettes for a royal dinner.

We subscribed to
The New Yorker
and to
Time
magazine. We handed him catalogs to keep him busy, because he played with the pages. He crumpled them, shredded them, put them on his head or struggled to open them from the folded side. I bought children's board books, but they were not designed for an adult mind, regardless of its condition. I bought a small encyclopedia with pictures of dogs. He smiled and laughed at some of the photographs. I bought a fidget pillow from the Alzheimer's Store – no success. It had buttons and zippers, but he had no interest in it. I bought another that you were supposed to fill with water. It was too heavy.

For the most part, television held no interest for him either, until Sylvia discovered he could focus for a little while on black-and-white westerns. Then she happily found some soccer matches and track and field events, which he seemed to be able to follow a bit, because he applauded something – sometimes with the backs of his hands instead of with his palms. But, as he faded, so did his enthusiasm.

Then we had three great successes in a row. The first was discovering DVDs of classical concerts. What a find! Music remained. I bought a DVD of Herbert von Karajan conducting Beethoven. Jim was engrossed. I began to look for others, Nathan Milstein, other recordings with von Karajan or Neville Mariner conducting. I tried movies, like
The Sound of Music
and
Casablanca
, but they were total failures, so I bought DVDs of James Taylor, Barbra Streisand, The Chieftains, and the Three Tenors. His favorite was
Appalachian Journey
with Yo-Yo Ma, Edgar Meyer and Mark O'Connor. He applauded between numbers. I joined him and applauded with him. He watched that DVD over and over and over; tears ran down his cheeks, particularly when Alison Krauss sang. We always handed Jim the plastic DVD case to hold as if it were a program. He would hold it in his hands, lift his head a bit and seemed glued to the image in front of him.

One day, I barged in and said, “Hi, Sweetie,” when Carrie had a DVD playing. He raised his fingers to his lips and ‘shushed' me. If you disturbed him during a concert, as Carrie used to say, he put on his ‘ignore' button. Several times after watching one of the DVDs, as he had with the soccer matches, he smiled, and brought his hands together as if to applaud.

The second success was at a children's store. I found a baby blanket with the head of a rabbit as the corner. Like Linus in
Peanuts
, that little blanket was always either in his hand or beside him. Another find was a $5 portable radio, which I discovered at a Dollar Store. Since his hands were always moving, would he be able to manipulate the dial? Jim played with that little black radio. Jim's busy fingers would fiddle with and turn the dial. There was static and whining between stations, but he actually left the dial alone for a few minutes and let the sound play. To Carrie's delight he might hit a gospel or country music station, and he would stop playing with the dial.

Late in the illness Jim fell asleep as soon as his head hit the pillow at 7:00 pm. Most nights he slept soundly, but he had developed an unproductive cough. At night I turned him to one side or the other or tried to prop him up on pillows. Eventually we ‘rented' a suction pump to get rid of the saliva that pooled in his throat. Medicare partially paid for that, but to keep the tube clean, we needed to buy alcohol wipes. One morning, he tried to drink from the suction tube as if it were a straw.

Sylvia positioned Jim; he slept on his left side one night and on his right side the next. At night, I removed or adjusted the pillows, so he would be lying at a different angle. We had little pillows, big ones, expensive ones and inexpensive ones. They were placed under his head, his arm, his side, a shoulder, his back, a leg, his knees and his hip. One night, he managed to press one over his mouth.

And as he sat and slept more, the possibility of pressure sores increased. When the body remains in one position too long, the blood doesn't circulate as well, so sores can develop on ankles, toes, elbows, or back. Left unattended, they can be ugly, painful and deadly. If anyone saw a red spot the size of a pinprick, they were on it.

As his muscle tone worsened, his weight collected around his middle. We could no longer weigh him because, even with Carrie and Sylvia's strength, his legs wouldn't support him on a bathroom scale, and the price of a medical scale was prohibitive and seemed pointless. I bought bigger underwear, which was more expensive. His clothes didn't fit as well either. He had always loved shorts. Now we had ones with 34”, 36”, 38” and 40” waists, all with drawstrings.

The days of shopping at Saks Fifth Avenue for Joseph Abboud's microfiber shorts were over. He had loved the textures of different fabrics, and the days of the elegant clothes from Paul Stuart were long gone too, particularly when his cashmere sweater ended up in the dryer, or medicines or food dripped on his clothes. I used Land's End catalogs until I discovered Buck & Buck. He needed new shirts, sweaters and vests. We bought snap-backed nightshirts – lightweight and flannel, always in blue. Jim's feet were swollen; I bought socks for feet that swell as well as socks with treads, so he wouldn't skid when he was transferred from chair to bed. His old shoes were too tight; I bought shoes with Velcro tabs.

When Carrie arrived, she started using a logbook. It was the means by which the aides communicated with each other about Jim. There they could keep track of his bowel movements and his food.

The section called Change in Condition might indicate that, “Jim has red marks on his back and waist. Heels and bunions red. Knuckles red. His bottom not as red as usual, but some.” I added to that entry, “If you see a bruise on the top of Jim's left ankle, when I took the blanket off, his feet were crossed.” Whatever anyone noticed was recorded and attended to by the next person. “Did he need another cream? Did he need to be adjusted differently? How did he get that scratch? What do you mean, ‘He didn't move his fingers when you pushed his wheelchair through the door?'”

Another section was the Meal Log, which included the approximate number of calories, the time and the type of food he ate: one pack of oatmeal, half a banana, a whole quiche, his Starbuck's frappucino.

The Daily Log indicated how his day had gone and what they and he did. “January 8: Jim was awake when I arrived. I changed him. I asked him if he wanted juice … Jim had a good day. Have a good evening, Sylvia with Jim and a good night, ET with Jim.” Later, when Sylvia arrived, she would add, “Jim was on the way back from the bathroom, and he spoke to his wife and asked, ‘What's for dinner?' and burst out laughing … He was ready for bed at 6:50 and was out right away.” Even though they called each other to find out how their day was going, that log was critical to them and to Jim's well-being.

And the log indicated what else we needed to do or what else we needed to buy to help him. I bought egg crate to put on top of the mattress to allow air to circulate and to vary the pressure points. Egg crate is not washable and has to be thrown away if it gets wet. I got a prescription for an alternating pressure pad (Medicare picked up part of that, too); it was hot and was like lying on an inflatable raft in the middle of a swimming pool. If Jim attempted to sit up by himself, he couldn't get any traction, which meant that his upper body muscle tone deteriorated. Again, you are damned if, … and Denise and I could not position him on that raft on Fridays.

We bought more creams and lotions for the rashes he developed. We bought synthetic sheepskin and put it on top of the pressure pad. We bought towels, sheets, blankets, pillowcases and bathmats.

While not enough can be said about what the aides did for me and for Jim, there was a cost, a downside to having help in the house. First of all, Jim was no longer simply my husband. He was their patient, and they loved him. One aide said that at a nursing home, the family stays out of the way and another wrote in the log that “there is nothing that I can do right.” These comments made me feel as if I were ‘in the way'. We are talking about four women with distinct personalities working closely together for almost four years – and me. They knew each other's strengths and weaknesses and mine, too, and it could become contentious.