Dignifying Dementia (13 page)

Nor was Jim sleeping at night. Just as he had the night he packed his shopping bag, he would awaken in the middle of the night, get out of bed, walk around – sometimes with no clothes on – and turn the lights on and off or stand at a light switch flicking it on and off for 10 or 15 minutes. The darkness and dim lighting may have made me seem more frightening because on several nights he chased me around the apartment demanding the return of the “stones.” He often demanded the return of the “stones.” I never knew what they were, but he wanted them back.

One particular night when he chased me, I ran into the front room, locked the door and clutched the phone to my chest. I was afraid of my own husband, of my once gentle Jim. How could this be happening? About a half an hour later, I cracked open the door, peeked out and tiptoed back toward our bedroom. I stood back from the bedroom door, ready to run again. I watched Jim while he moved the furniture and stripped the bed. Eventually, he lay down halfway across the unmade bed and fell asleep.

One morning, he warned me about the Jews – this from my Yeshiva teacher and Rogers Peet “goy.” What were the Jews doing? I couldn't make it out, but something bad – this random utterance from one of the most humanistic, ecumenical people I ever met. What Jim said he didn't tolerate was “stupidity and Irish politicians!” He used to say, “Never trust the Irish” – followed by that grin.

So, I helped him to the toilet, to take off his clothes, to dress him, to give him his showers and to prepare his food. He was unable to put shirts on over his head, so I bought shirts that buttoned in the front. He could not always remember how to put his arms in his sleeves. I stopped giving him his hearing aids, because I caught him in time just as he was about to eat them. He was agitated most of the time – so was I.

I had read that pets could be calming. Certainly we needed something peaceful. Should we have another cat in our lives? When I suggested the idea to Jim, he became upset.

Jim's world seemed Orwellian, Kafkaesque, hierarchical and bureaucratic. We couldn't just get a cat; we had to abide by rules, and that woman in the front room of the apartment seemed to be part of a regulatory staff. ‘Cat acquisition' apparently required authorization. So, as our neighbor had in Lenox, when Jim didn't believe he had the right to be in his own apartment, I produced the condo by-laws and sat down with him to discuss the matter formally. I showed him the sentence that said pets were permitted. I didn't know if he could read the line I showed him, but he acceded to my request.

As a result, we went to the Humane Society and picked out Cleo. When we brought her home, Jim was not interested in her at all. In fact, he shoved her away when she came near or if she jumped up onto the ottoman near his feet.

But Cleo turned out to be therapy for me, because she gave me something to smile at and to worry about besides Jim. Unfortunately, Cleo awakened at 4:00 am, sometimes only minutes after Jim had fallen asleep, so I was weary. She became visibly ill one Christmas Eve. Although the vet tried to save her, he couldn't; she died. She was a sweet, warm friend I could hold, when I could no longer hug my husband.

Cleo's death seemed to be another reminder of illness, loss and death: Jim, Mom, Dad, a colleague in Ireland, Liam, and a friend, Fran, even Ellen's move to Portland, Oregon. Tears came to my eyes when I opened a letter from Ellen with a photograph of my two grandchildren. I steeled my heart. Cleo's death seemed unfair. In football, I think the term is ‘piling on.'

A year later without Jim's input, I decided to get another cat. When I brought her home, she cried for two hours, so I called the Humane Society and said sadly, “Please keep the donation, I'm bringing her back.” An unhappy cat and a demented husband were more than I could handle, so I bought some fish thinking Jim might enjoy their color and movement; he didn't look at them or couldn't see them. They lived.

Choosing an older cat had been a wise decision because an energetic kitten might have added to his hallucinations. Jim had begun seeing small creatures on the floor or in the corners of the rooms. I stepped on the spot he was staring at or said that “whatever” he saw was not there. He talked to people he must have seen sitting in chairs or standing in corners. I was inept at handling them, too.

By now we were unable to have conversations about the weather, getting a cat, eating a sandwich, taking a walk, getting the mail, putting gas in the car or having toast. His condition was beyond my comprehension and my skills.

As the days of confusion mounted, I asked myself, would I ever remember the good times? Which part of our lives together was the fantasy? Which the reality?

Increasingly tired and lost, I learned that the local Alzheimer's organization had a daycare program, so I met with the director who suggested, “Let Jim believe he is volunteering to help out on the program.” On the day we tried it out, eight other dementia sufferers were present. We arrived, and we all sat in a semi-circle, as the facilitator explained the information she had written on a white board. She had printed the day, the date and had drawn a picture of a sun with a smiley face, to describe the day's weather. When she took attendance, two people argued over which of them was nicknamed ‘Captain Joe.' Within minutes of our arrival my brilliant educational guru said, “What are we doing here? Let's get out of here.” He reached for my hand and was out of his chair heading for the door.

Jim was an educated, intelligent, confused, paranoid, hallucinating, delusional man, not a kindergartener – so much for daycare.

Although the program didn't work for Jim, and the social worker's advice at the support group meetings provided me with little help, I respected the director. One day, in utter desperation, I went looking for her. I found her as she was just finishing a meeting with the Director of Nursing from the local technical college. I waited. When I saw them, I blurted out, “Please, please, I need to talk. I am losing my mind.”

They sat me down and said, in no uncertain terms, “You cannot take care of Jim by yourself anymore.” They asked a simple question: “If you break down, if your health deteriorates, what will happen to Jim?” I didn't want to believe it or hear it, but I knew in my heart they were right. I had to acknowledge that I couldn't go it alone anymore. I had to get help, but how could I admit to myself that I couldn't help him?

The diagnostic process itself had been emotionally draining. We had seen physicians, had names of diseases and had tried medications, but I had no insights into the awful and dramatic behavioral changes that his illness had already wrought and would continue to make, and I didn't know how to handle them anyway. I was naïve to think I could help him; my ignorance seemed to make things worse, and I was worn out.

The notion of bringing in help was earth-shattering to me. That I was incapable of caring for the man I loved was nothing short of failure – of unfathomable proportions. I loved Jim and had let him down in his hour of greatest need. I simply wasn't up to the task. What an admission! What guilt!

When I left the two women, I phoned a friend to tell her what they'd said to me. She listened and then quoted the airlines, “Put your oxygen mask on yourself first, then on the person next to you.” I understood what that statement meant. To protect him, I had to protect me; I returned home with a heavy heart. I had no idea what “getting help” meant, or how it would change our lives. All I understood was that I couldn't go it alone anymore.

Because I had seen how hard it was to protect my mother from losing her assets when my father became ill, we had purchased long-term care insurance – fortunately. When my parents were both unwell, we had talked to a lawyer and our accountant to determine how to handle Mom's situation. When Jim and I selected our insurance, to keep our premiums down, we had bought a three-year plan with a 100-day deductible. We did so based on statistics; at that time, people usually went from hospital to nursing home, as my mother had, and Medicare paid up to 100 days. According to the Center for Disease Control and Prevention, the average length of stay in a nursing home in 2004 was 835 days, shorter than the lookback period, the time when you can divest yourself of your assets. It was a good decision – when we made it.

Ironically, my decision to continue driving south seemed to have been a wise one, not only because of the weather and the space in the apartment but also because the daily reimbursement from the insurance company was better suited for the costs of help in the South than in the more expensive Northeast.

After a couple of days of thought, defeated and resigned, I found the telephone number of the insurance company and called to ask what I had to do to activate our policy and how to use the money.

I had already learned from our sojourn at the skilled nursing home that Medicare didn't necessarily pay the first 100 days, and Jim would not be coming off a hospital stay. The representative explained that the company required a nurse's evaluation of Jim, so she arranged for someone to come over. When she arrived, she asked Jim questions which he couldn't answer. He did know his name and his birthday. He didn't know his address or the answers to anything else she asked. Afterwards, she looked at me sadly and asked, “How have you been managing?” What was there to say? Badly?

Jim was approved, his insurance activated. But what was it for? My choice was either to bring people into the house or go to a nursing facility. I knew we would be bringing help into the house.

As I anticipated, we had to pay the 100-day deductible out-of-pocket from our savings. The representative at the insurance company explained that we had to hire certified nursing assistants (CNAs) from a licensed agency or have licensed people care for Jim.

I went to the yellow pages of the phone book and found the listing for local home health agencies. I phoned and explained that I needed help during the day for a man with probable Lewy Body Dementia. I would be the night shift, as I would be throughout his illness. Having help during the day meant that I could leave him and not worry, and I would have some relief. That was that!

While I learned the hourly rate, I hadn't a clue what the real ‘costs' were, what the aides' training was, or what the implications of having strangers in our home would be. I simply hadn't thought about it. All I knew was that I needed help! What a disaster!

When I made contact with the agencies, I made a number of assumptions, the first of which was that the agencies were in the business of caring for people with all manner of illnesses and knew how to handle them. As a consequence, I had no questions. They asked me when I wanted help and for how long. I hadn't even thought about the timing until they asked, so I said, “8:00 am to 4:00 pm, seven days a week.” That would change, because I would need help feeding him, changing him and putting him to bed.

Only one representative of an agency offered to visit me and to meet Jim. When she came over, Jim was walking around the living room pushing the hamper, a silly gift I had bought him years earlier since he was the ‘laundry guy.' In his current condition, though, he often shoved it against the door to keep people out of the bedroom. This woman said, “If an illness like Jim's were to strike my husband, I would be ‘outta' there.” Wow! At least she came over. The other agencies took the information over the phone. I couldn't use the assistance of the woman who visited us because her agency didn't employ ‘licensed' people; they provided companions – again, my learning curve.