For the first year-and-a-half after Dan was diagnosed, I could leave him home alone, but eventually the probability of his leaving something unattended on a stove burner, accidentally harming himself, or wandering off, made constant supervision a necessity.   I was trapped with Dan twenty-four hours a day.  I needed respite.

The social worker at our local hospital pushed for me to commit Dan to a nursing home.  Dan was physically active and responded to his surroundings and to people he knew.   I did not want to commit Dan to a full-time care facility. Furthermore, health insurance does not pay for what is termed “maintenance care.”  I would have to pay the full cost of a nursing home:  at least $70,000 then, now $100,00 or more a year, which was more than our income.

Given my own preferences and the dollars and cents of the matter, I looked for at-home care solutions. When I put an advertisement in the paper for someone to come twelve hours a week as a “companion”  Liz had responded.  I had advertised for a person to take Dan fishing and hiking.  Liz did not like outdoor activities, but she brought other things into our lives.  She understood Dan’s frustration and anger and helped me to be more accepting.   She was fast-talking and funny.  She loved to drive, and Dan loved to ride.  They were obviously a team as they covered the country roads and stopped for Dairy Queen Blizzards.

That first year Liz had Dan for three hours in the mornings on Mondays and Wednesdays  and for six hours on Thursdays.  On Thursdays they took trips to a wide variety of places within a one hundred mile radius: state parks, malls, the zoo.  Lunch at a cafe or at some scenic spot where they could picnic was a big event to Dan.

The wonderful relief of those twelve hours a week of freedom made me more able to cope.  I had the house to myself on Thursdays. I wrote, walked, and absorbed the quiet.  I didn’t run errands when Liz was on duty as that was something that Dan and I could do together.

Because I had time for myself, I enjoyed the time Dan and I spent together:  on our daily walks to get the mail, often we held hands, or on short hikes on the multitude of trails nearby.

Dan’s passion was fishing, but mine wasn’t.  I tried to take on the responsibility of getting the boat in the water, running the boat, positioning it at the perfect spot to catch fish, and baiting the hook.  It took me half-an-hour to thread a cisco, bait for lake trout, and if the boat motor stopped, I panicked.  Dan was frustrated and  frightened by my ineptitude.   We needed help.

I hired a college student to take Dan fishing.  Jake was a competent, kind, and patient young man. He and Dan had a good time together, and I had more hours to call my own.

That fall after the fishing season ended, I enrolled Dan at the Day Care program at the local nursing home several days a week.  I had thought Dan might be offended and feel demeaned at being enrolled in a day care program, but he wasn’t. Being accepted as part of a group was rewarding to him.

The cost was a mere $45 a day.  A bus picked him up around 8:30 a.m. and brought him home around 3:30.  He loved the bus ride.  I was ecstatic to have so much freedom, and when he came home I was glad to see him.

My ecstasy was short lived.  Dan had developed a series of inappropriate habits.  For one thing, he would rub his crotch.  This upset the staff and some of the women clients attending the program. He wore an alarm that sounded if he left the building, which he did consistently. Staff had to chase him down and bring him back.  In a report a staff person described how once when asked to do something, Dan threw a book on the floor in anger.  Dan was put on probation.

The staff was operating in a difficult situation.  When you entered the nursing home, a gauntlet of residents were sitting by the doorway watching people come and go.  The place where the activities were held was cluttered and unattractive.  Tables were beat up, equipment and supplies were stacked everywhere.    Activities were oriented toward women although there were other men.  When a trip to a shopping mall was planned, the director suggested that Dan would not enjoy the trip and should stay home. The compromise was that I would come along to keep tabs on Dan.

Dan continued to be a problem, and the day care staff reached a decision—they could no longer manage Dan.  The center’s activity director called to urge me to have Dan committed to a full time care facility.  She warned that if I was burdened with his care, I would become resentful toward Dan.  Her warning was not far fetched.  I made a point to remind myself often that Dan was not the problem, the disease was.  I had to struggle with bitterness, but over time that dissolved.  Regret would once in a while overtake me.

I looked about for other resources.  In some communities trained respite volunteers will come to your home for a few hours a week, but no volunteers surfaced in our community.  By good fortune, I learned of an adult day care program in a small city fifty miles away, and for more than a year Dan attended that program once a week.  The wonderful staff was supportive.  The one time Dan was aggressive and created a problem, the staff sat down, talked about it, and instituted a management  plan.

We stopped going because Dan needed more and more help in the mornings, and it became difficult for me to get us out the door in time to spend more than a few hours at the center.  Also, Dan was declining and was participating less and less in the activities.

I looked for and found another solution—someone in the health care field who could come for the summer and stay in our downstairs guest apartment.  Nurses aides and EMTs at hospitals and nursing homes are often transient.  Ron, an EMT/nurse’s aide in his mid forties, was referred to me via the local grapevine.  He was spending time in our community for the summer in order to take advantage of the canoeing opportunities.  He would be working thirty hours a week at the nursing home.  He was a considerate and helpful roomer and gave eight hours a week of care for Dan in return for housing.  Often he did extras for us—like sawing up three cords of fire wood.   He took Dan fishing, but Dan was losing the ability to handle a rod and reel.

We now had Liz for fifteen hours a week and Ron for eight.  I had twenty-three free hours, and Liz was willing to add hours if needed.

When Ron left at the end of the summer, I looked for a replacement.  A student attending the local junior college who had nurse’s aide certification moved into our basement rooms.  I was hesitant to take in a teenager, even one approaching twenty, but Dana turned out to be a gift.  In addition to the care time she provided, she often volunteered to cook, and her vitality and her recounting of her days added brightness to our household.  Dan would sit beaming while Dana and I chatted away.   I was delighted to be in touch with the younger culture again, and for Dan I suspect it felt like having a family life again.

Eventually in our community, as in many across the country, a respite volunteer program was organized, and in the last years of Dan’s life, volunteers were a great source of help and friendship for me and for Dan.  As Dan’s needs increased, I increased the numbers of hours per week I had paid help to care for him.  During the last year of his life, I had someone every day for a total of 50 hours a week.

Books on taking care of the caretaker suggest that friends and family provide respite help.  This is a fine idea if you have people willing to come on a regular basis and stick with it for the long haul—years, or if you have someone with the skills to deal with challenges when you are gone overnight or for a week.  However, many people feel inadequate to deal with angry behavior, toilet problems, and confused responses—problems hard to handle if you don’t have experience.   Friends and family can help in short-term situations.  Some nursing homes, hospitals, and respite programs offer short-term and overnight care.

For the long haul it is necessary to have someone whose commitment and expertise can free you from concern.  Through an agency you may pay from $18 – $30 an hour, depending upon the level of care.  If you hire someone on your own you will pay at least  $15- $20 in order to have someone competent.  If the person you hired does not have other clients or doesn’t operate her own business, you will have to pay workers’ comp insurance, unemployment, and social security.  If  that person makes less than $1000 a month and does not want income tax withheld, you can pay the social security along with your annual income taxes.

Respite care is not cheap, but it is necessary for the caregiver’s sanity.