Dignifying Dementia (24 page)

Initially, Jim had walked or run unaided and would tell Carrie, “I'm going to race you,” and then he would take off. One day he had been sitting in a chair while Carrie walked the few steps into the kitchen. By the time she turned around he had gotten up, run to the end of the living room and fallen because he was unable to stop himself. Later he could walk by himself only with someone nearby. Still later he needed a hand on his elbow. I had bought him an elegant leather cane—another extravagant, dumb purchase. But Jim went from walking well, to walking badly, to a transport chair. He skipped ‘cane' entirely. We got a gait belt to protect him. The blue belt – to match his eyes – was supposed to be around his waist, to ease him to the floor rather than have him fall uncontrollably and hurt himself. He resisted it, so it became the seat belt on his transport chair.

Jim rarely used the walker he got when he left the ACU, because he was too impaired to master it. I used it in the theatre when I played Grandma in
Tina and Tony's Wedding
. We needed the transport chair (Medicare paid for that). At first the chair I rented was simply in preparation for the hurricane season. Then we needed the chair all the time. He used it to go outside to sit by the water, to take out the garbage, to go to the bathroom, to the bedroom and into the kitchen for breakfast.

If Jim fell, Carrie and Sylvia could lift him. The rest of us couldn't. One day, when Martha was taking him out of the shower, he said, “Oh, God, I am going down.” She assured him he was safe. He said, “Thank God, I'm still alive.”

I had installed grab bars near the toilet and in the shower stall, but he held the towel rack, which pulled away from the wall. A handyman replaced it and repainted that section of the wall. We removed the glass sliding shower doors and replaced them with a shower curtain and installed a handheld shower. We averaged three to five loads of laundry a day; we needed a new dryer.

We raised the level of the toilet with a commode. I bought a softer toilet seat – a waste of money. We bought a shower chair and a transfer bench – this time from a cancer thrift store for a $25 donation.

We bought wipes and latex-free, vinyl gloves by the case. We bought non-drying soaps, shampoos, moisturizers, wonder creams, moisture barrier creams, under neck creams, hydrocortisone ointments in various strengths, hemorrhoid suppositories, bag balm, talcum powders and cotton balls.

To prevent inflammation under his neck from Jim's relentless drooling, Diana suggested we use folded Kotex pads; however, I found soft burp cloths from a children's store; they were soft and worked like a charm. On some days the cloths needed to be changed every five minutes, so we needed pillow protectors.

Jim's swallowing deteriorated. No more finger foods like grapes and strawberries. We bought thickeners, nectars and cream soups. I bought a cup that came with a straw with a ‘sort of' ball bearing in the bottom that caused the flow of liquid to slow. Then I found dysphagia cups, which he held himself. We had two – only $25 a piece. Frequently he offered his cup to Carrie, Sylvia or to me. I bought cutlery and cups for toddlers. Martha suggested we buy dishes with separators. I bought a blender for his protein drinks, a humidifier to keep his phlegm looser, and Vicks Vapo Rub and Eucalyptus Rub for his chest. We installed a new thermostat, because Diana suggested we keep the apartment cooler, and I bought a small Bose radio, so he could fall asleep listening to his music – extravagant, but music is what was left.

To prevent constipation, I bought Benefiber, Miralax, Milk of Magnesia and I bought Preparation H. Food was expensive. I don't mean the occasional Starbucks frappucino that he drank down in seconds. I mean the powdered protein and containers of Boost or Glycerna. Despite keeping a food log, with different people in the house, it was hard to know what foods were fresh. Did he eat half the soup yesterday or the day before? And everyone had a preference. “Please buy grits and sardines.” “No, he likes oatmeal and banana.” “Get him fruit”. “He prefers coffee with cream,” or “coffee without cream”. “He likes maple syrup on his oatmeal”. “He likes Amy's brand of pea soup.” And I couldn't deprive him of his scallops or smoked salmon.

We needed laundry powder, fabric softener, stain remover, baking soda, Clorox, Lysol, Pine-Sol, big trash bags, and small ones for the wastebaskets.

With the spillage of drinks and medicine, Doug, the carpet cleaning man, came, but the kitchen rug was too stained to redeem. We were on a first-name basis with all the repairmen, including Cork-born Frank the plumber.

Later, we added no-rinse cloths for bed baths and a plastic basin. Jim got a fit of the giggles when Carrie washed him by putting the water in a wastepaper basket. We bought a remarkable contraption that fit under the top of the mattress, which worked on the principle of a vacuum and could lift him to a seated position.

Besides listening to his coughing or hiccupping, at night I worried about money. What would we do if he outlived his long-term care insurance? How could I meet his expenses? Why had I gotten involved with theatre and wasted money? Could he become Medicaid-eligible? But Medicaid is about nursing homes, NOT home care. What would happen to me, if we used up our assets for his care?

I called our accountant, mildly hysterical, and asked, “What are we going to do? How do I prioritize our assets? Do I need a reverse mortgage? We are going through about $5,000 a month on his aides alone; our long-term care insurance will be gone by fall”. Calmly, Michael said, “Let's talk at the end of the year.”

While we had more money than some, we had less than others, and once he became ill, I worked only occasionally. Jim had taken a cut in pay when he accepted the chairman's job at HVCC, and even with an increase in salary with the promotion to Dean, the move to HVCC affected his final average salary – therefore, his pension, too. No regrets! Like the story of the grasshopper and the ants, we had opted for the adventure. His five years at the community college revitalized him. He had implemented new courses, had recommended the theatre be named for Maureen Stapleton, instituted an arts program, established a jazz series, put art on the walls, and lived in his beloved Columbia County. And living in Ireland was magic!

Like many other women, I had worked in several states in different jobs that had or didn't have pension plans: 10 years in New York City, three years in New Jersey, three years on commission, five years in New York State and six in Ireland.

None of this was new to me. My father had gone through his savings to pay for his ‘minder.' My mother had a pension and social security, but she too had a live-in caregiver, so in the end she had her house, her pension and a small savings account.

When we bought the long-term care insurance, who would have thought we would be dealing with a disease of indeterminate length? While a five-year plan would have been better, an unlimited policy would have been better still. At least we had our three-year policy.

And no one knew Jim's life expectancy. One doctor volunteered that Jim would die in two years. He didn't. Four years later, he was alive. Another doctor said he would be in a nursing home in six months. Three and a half years later, he was still home. Someone said that I was taking too good care of him. How does one respond to that? Apologize?

Fortunately, we had wills, powers of attorney and advance directives. Knowing he might have to become Medicaid-eligible, early in his illness, when he still understood what he was signing, we removed Jim's name from our joint assets and as the beneficiary of my will. Then I took out a life insurance policy on myself to ensure Jim would have enough of his own money, if I died first. And I had heard that caregivers are statistically likely to die first.

There were ethical questions as well as financial ones. More than once his temperature was barely 0.6 degrees above normal; his legs wouldn't support him; he slept 24 hours, didn't eat or drink and had his first bed bath. I filled his standing prescription for Amoxicillin and realized how fragile his health was.
Would he survive without the antibiotic? Would the next bug kill him? Would Amoxicillin be enough? What are we fighting for? Has he had enough? Is he exhausted? Is this the quality of life he wanted? Is this the life that he wanted for both of us?
But when he smiled at me or at his food, or clapped his hands in the middle of watching a DVD, he was ‘still there.'

What should I tell Ellen to do when it was my turn in the barrel? Keep me at home with help? Have enough saved to fly me to Amsterdam? Or Oregon? At what point would my health impact someone else's life or lives? Deplete someone else's resources?
But parents are not spouses. It is the order of things for parents to die first. This was my husband not the annoying parent she had inherited by accident of birth.

My father had said, “Protect me from a long illness.” I had been unable to do so because he had no notarized advance directives. All I could do was write a letter to the nursing home administrator explaining his wishes and sending a copy of a little card Dad kept in his wallet. Whenever my father developed pneumonia, he would be taken to the hospital, given an antibiotic and returned to the nursing home. While Jim and I had legal papers, they didn't tell me what to do. Was this the time to hold back the antibiotic, or was I making him more comfortable? Even when we signed our wills, we hadn't talked about death and dying. At least, I knew to get him a priest.

Not one member of our team of aides believed Jim would have lived as long if he had been in a nursing home.

At times he appeared close to death; at other times, he seemed as if he would live for years, so I needed to find out about Medicaid eligibility. I talked to eldercare attorneys – three in South Carolina, one in New York State and one in Massachusetts. Each state is different, and the system is complicated. At the time, every state permitted us to keep our primary residence, to have a car, and to fund our funeral arrangements. One lawyer suggested that we sell our assets, buy gold bars and put them into the walls of the apartment as decorations. In that way the gold would be part of our primary residence and untouchable by the government. “That will be $200, please.”

When I asked another attorney about our Lenox condo, he advised me to get rid of it even though he had never been to the Berkshires. I said, “I am not ready to sell it, because I don't know where I am going to live when I lose Jim.”

Another attorney in South Carolina wanted $17,000 in fees immediately to exploit a tax loophole that the governor was about to close. I was reminded of a banker who had said, “If someone needs an answer about money today, the answer is always ‘No'.” I didn't send the check and missed out on the loophole.

The attorney in Massachusetts explained that if Jim were put in a nursing home, and we couldn't pay the bill, then a lien would be put on our property. I could live in Lenox or repay the state when I sold the property. I hadn't a clue where I was going, so I did nothing.

A New York attorney told me to return to New York State as soon as Jim's insurance ran out, because “New York is more generous.”