Bob continued to live at home for 5 years as his disease progressed. He stopped driving in 2007 after his neurologist observed him running a stop sign and realized that Bob’s ability to multi-task, recognize danger and implement safety techniques were declining.
It was the bowel and bladder issues that led us to the nursing home. I continue to work and must do so, given the recent dramatic downturn in the economy. Having to get up at night to clean my husband was beginning to take a toll on my health and my ability to function at work.
While he was attending an adult care center 5 times per week, he was becoming too much to handle at home at night.
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Bob had been clear about his wishes related to nursing home care for a long time. He had bought long term care insurance when he was much younger. He knew that at some point, he would need care outside the home. He and I discussed it over the years, including several conversations after his diagnosis. He was not afraid of it. He wanted me and our family to recognize the need and act accordingly. He provided the means to do so. And he continued to give me permission for placement through many conversations. I discovered a journal entry from 2006 describing my work with the wife of a patient at my hospital. I recorded in that entry that Bob said he wanted me to “do it,” that is, place him in a nursing home, “sooner than later.”
If I live to be 100, I would never have predicted the ways in which moving my husband to a nursing home affected him. I was so thoroughly surprised by his reactions and subsequent behaviors. It was such a frightening experience to know that what kept him calm and settled was what I had taken away when he moved. I guess I had thought he would react the same way he had always reacted: with calm and thoughtful analysis of the situation and understanding about how to make the best of it. How’s that for a little denial on the part of the caregiver? But his behavior became extremely out-of-the-ordinary for him and stressful for the nursing home staff and for me. It was as if an alien had moved into his body.
At home, he was not a wanderer. He didn’t open the outside door and leave home. He did not get lost when he was still driving. He was a “homebody.” Yet, when he went to a nursing home he began pacing and searching. He wandered all over the first facility, going into other residents’ rooms, picking up their belongings and walking out with them. He wandered at night and he wandered in the daytime. He stopped only to be sat down at the dinner table where he wouldn’t eat. He hardly slept. He lost 7 pounds. After 10 days, the first facility admitted they couldn’t handle his behaviors, that he was scaring other residents. They wanted me to move him into a facility specifically for dementia patients.
The new facility moved Bob into a locked unit with 15 other men at varying stages of dementia. The men in that unit had behaviors that could not be managed on an open unit; behaviors like wandering into each other’s rooms, yelling, being aggressive, and not managing their bowel or bladder function well. I learned that the unit culture was one of communal ownership. Whatever was yours was mine, too.
The staff was very kind and showed themselves to be very competent. When Bob’s weight dropped 6 pounds in the first week, they were not hesitant to call me and ask me to help by bringing foods he liked. They called me about his wandering behavior. They called about a skin tear or a bruise. They called about his sudden sleepiness and starting some new medicine. All very note-worthy and helpful in keeping me informed about Bob’s situation. But they had no suggestions about controlling the incessant pacing. They would protect him from aggression or injury but they just got out of his way when he paced.
Then there was a series of phone calls about skin tears, scrapes on his arms or legs. When I asked, the nurses told me about Bob getting angry with other patients and almost getting into fights. One night, I was talking to him on the phone and I heard him say, “What the f--- are you doing?” The question came out so loud and so complete that I was surprised. Bob has had increasing word-finding difficulties, to a point, where he has not said a complete sentence in 3 years. To have him shout out this question was nothing short of miraculous. We learned that when he is angry, Bob can complete sentences. But it was a side of Bob I had never seen or heard. My calm, gentle, loving husband was displaying aggressive behavior never seen in him before. This attitude has set up shop in my husband. Now, months later, he is still angry, still upset about the men he lives with. He tells me these men “don’t like each other.”
The nursing home staff describes Bob as pleasant, helpful, cheerful, and always smiling. They say he goes to all the music activities and gets up and dances. They ask him to go with the activities staff to deliver mail, flowers, and treats: he does it with a smile. They say he participates in many activities and seems to enjoy doing so. They say he makes little jokes and pats other residents on the shoulder and tries to get out words of encouragement.
This picture of my husband as angry and aggressive is different from how he is with me. With me, he is miserable. When he sees me, he immediately begins asking why he can’t just be with me, why we can’t “leave this place.” He doesn’t ask just once. If I am there for an hour, it is the first, last and only thing he will talk about. On the bright side, he is still talking. On the dark side, he is obsessed with going home. I know he doesn’t understand why he is there and it will do no good to try to reason with him. To him, his physical and mental abilities haven’t changed. He doesn’t know nor care that the management of his daily activities was wearing me out. He just wants to be at home.
So this is where we are, today: Bob wants to come home and I am still battling the guilty feelings about not being able to take care of him. I try to keep in mind that he is different when I am not there. I try to remember that he is well-liked and cooperative with the staff. I try to remember that when he is distracted from wanting to go home, he is more like himself. I try to bring things for us to do during my visits, try to do anything to distract him. I take him out of the nursing home for a drive or to get ice cream. After 8 months, I felt that I could take him back to our house for a short visit. Now, he hardly recognizes home as a place he lived in – although he will go in and lie on the bed! We have come to an uneasy peace and I feel less pressure on myself to be the perfect caregiver.
What I don’t know about people with Alzheimer’s disease is far greater than what I do know. I would never have guessed that Bob would react in these ways. I would have guessed that he would be able to adapt, and that he would have kept his cheerful persona.
I would have been wrong.
Jane Henderson, L.C.S.W. is Coordinator, Family Caregiver Training Program at St. Luke’s Hospital in Kansas City, Missouri.
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