As soon as Dan was diagnosed with Alzheimer’s, Friends and associates asked me where was I “going to put Dan.” Thankfully, my sons and daughters-in-law never said that. They simply said “Whatever decisions you make, we support. Let us know how we can help.”
I am forever grateful to them. Their support allowed me to explore options and deal with the changes in our lives without being pressured to make decisions that were contrary to my feelings and needs or to Dan’s.
By the third year after his formal diagnosis, caring for Dan when I traveled had become problematic. I found that placing Dan in a care facility at our travel destination gave me freedom to do what I wanted to do, offered an opportunity to learn about the kinds of care available and allowed me to compare facilities.
During the several trips to Florida to deal with my father’s health problems, my father was sometimes unkind to Dan and jealous if attention was not focused on himself. I needed someplace Dan could stay during the day. I was lucky. A newly built Alzheimer’s nursing home had a day care program. The nursing home was built with a central area that housed the nurses’ station, hair salon, large recreation room and other communal facilities. The residents met here for recreation: dancing, singing, crafts, reminiscing, and a long list of activities geared to the level of the patients.
From the central area, wings extended out like spokes of a wheel. The entry to each wing was made to look like a cottage porch with swings, flower boxes, and fake windows. Each cottage had its own kitchen, dining room, sitting room, and laundry. Each patient had a private bedroom, and the cottage residents formed a family group. The patients helped set tables, cook, vacuum, fold the laundry, and carry out other household activities. The cottages had exits into an outdoor area with extensive garden paths, and the patients could safely wander by themselves. The staff was specifically trained to deal with Alzheimer’s patients. They understood Alzheimer’s induced fear, aggression, and confusion, and knew how to respond. Dan enjoyed his days at this place.
During a trip to Cincinnati for a class reunion, I stayed with an aunt and placed Dan in a nursing home for two nights. The Alzheimer’s unit was on an upper floor with a large central area where residents gathered. Dan had a nice, private room. The staff was well-trained, but there were no communal units, and the patients were not involved with housekeeping tasks and other day-to-day activities. Some were sitting in the central area talking, watching television, or staring into space.
The first night Dan was there he would not sleep, and he walked the halls. The nurse on duty heard a mighty crash shortly after midnight. Dan had fallen. The nurse called me. She wanted to send Dan to the hospital to be checked, although he did not seem injured. I agreed. My aunt and I drove to the hospital. I was in agony picturing the confusion and fear Dan must be feeling. We arrived at the hospital, and I rushed into the emergency room where Dan was on a gurney. He was having a wonderful time: so much attention, a ride through the night in an ambulance with sirens going… I was very tired and was not pleased to see him laughing and enjoying himself.
I took him back to my aunt’s with me. The next day I debated whether or not to return him to the nursing home. Late in the afternoon I did take him back and talked to the staff. The staff was chagrined at what had happened. Given the fact that accidents do happen and the nursing home responded in an up front and cautious manner, I left him the second night. He was exhausted and slept through the night.
Other caregivers I have talked to have found other solutions. A friend whose husband had Alzheimer’s took advantage of an arrangement at a nursing home in a small, western Minnesota community that had an assisted living apartment available where she could stay with her husband. During the day he was part of the the nursing home program, and she was free to come and go. At night, he stayed with her in the apartment.
In many communities across the country, assisted living facilities have sprung up, and some have special Alzheimer’s facilities. Our own community had a nursing home that was poorly planned in terms of layout, has too few funds for making the environment homelike and stimulating, was often short of staff and the staff had not been specifically trained to care for Alzheimer’s patients.
Several group homes in our area care specifically for Alzheimer’s patients. A group home is the most appealing option to me because of the family atmosphere and the close relationship between staff and the small community of patients.
I always left open the option of putting Dan in a care facility. The physical demands of lifting Dan in and out of bed, changing diapers, getting him in and out of the shower, up and out of chairs, and on and off the toilet required a great deal of time, physical energy, strength and special equipment. In the later stages of the disease, I needed a lift to get him in and out of bed. Medicare paid for the lift.
Sometimes in the middle of the night he would try to get out of bed, and when he tried to stand, would slip to the floor. There came a time when he could no longer feed himself. I told my children that if something happened to me, they should put Dan in a care facility. They have children, careers, spouses, and financial obligations. The physical exertion and attention demanded would be an unfair burden to themselves, their spouses, and their children.
I believe that for each caregiver, when the stress becomes greater than the reward of caregiving, then it is right to make arrangements for the person to be elsewhere. You aren’t good for the person you are caring for nor is the situation good for you. It is time to let go.
Besides the stress to self, costs are another way to compare in-home with out-of-home care. As the patient’s needs increase, costs will increase for home care and will eventually equal or exceed nursing home care. Money becomes an increasing factor in the care equation. This is a time when longterm care insurance is useful. Regular health insurance and medicare do not pay the cost of “maintenance” care at home or in a nursing home. The cost of Dan’s care was not deductible from income taxes. Our retirement income was social security and payments from Dan’s retirement fund. Unless income and assets are limited, economic aid through social agencies or medicaid is not available. Major assets must be used up, or “spent down” to use bureaucratic terminology, which eliminates a future source of income and security for the caregiver. These are dilemmas all caregivers face. Talking to someone who knows what assets a spouse can keep (such as a home) is useful. Sometimes county social services can direct you to a knowledgable source.
One day at a time, decisions must be made.
To evaluate a care facility look at the staff to patient ratio, the rate of staff turnover, whether the staff is specifically trained to handle Alzheimer’s patients, whether the facility is secure, what kind of activity and involvement there are for the patients, if there is sufficient space for wandering, if the place is safe, and if the staff are kind and caring. (The Alzheimer’s Association has a list of guidelines for choosing a care facility.)