With Alzheimer’s disease, loved ones can feel like they are walking a tightrope. Sometimes you need help to restore balance. Loss, marginalization, and disorientation: a person with with Alzheimer’s disease is forced to live with these feelings daily. And, as caregivers know, the disease – in turn – affects the whole family environment. Loved ones must work to find new personal, family and social equilibrium. It’s like walking a tightrope… Read more
Until, a moment comes when the balance is off, when the needs are too great and it’s impossible to walk the line anymore — at least not without professional help. What comes next? In home health care? Alzheimer’s assisted living? A memory care facility? Or a nursing home?
I woke up after another sleepless night and told my wife that I couldn’t do it anymore.
For four years, I had been in charge of my mother-in-law, who had Alzheimer’s disease. As her primary caregiver, I tried to help her to feel serene and to help her to be as autonomous as possible, despite her decreasing abilities.
I felt that I had done all I could to keep her in her reality of known life.
Her progressive decline, her ever-increasing needs, plus all the adaptations that our family had made so far, overwhelmed me. I felt humiliated and angry at the same time; weak and traitorous. I was full of pain for what I could not do and for what I had given up to help my mother-in-law and my wife manage their lives over the last few years. I had tried so hard not to disappoint my wife, but lately I felt overcome by loneliness. Our family life did not make any sense anymore. I had come to a crossroads: she or me. I had the warning signs of stress overload or perhaps I was experiencing adjustment disorder, or worse. I felt like a glass full of water to which they continued to add water. Everything was spilling out and I couldn’t control it anymore. I had to to empty one part of me and make room for other things. I had to get rid of some of the fatigue and find time – and energy – for positive emotions. I felt like I’d failed and was inadequate.
I made the mistake of telling all these things to my wife in a moment of anger and my emotions exploded uncontrollably. I threw all my frustrations on her and told her we had to seriously think about taking my mother-in-law to a nursing home. In home health care wasn’t working for me (or her, I thought) anymore.
Alzheimer’s disease had turned a gentle old woman into a bizarre stranger. At the beginning she said loopy things and asked for help with clothes’ buttons, later she did not remember how to dress herself and we had to help her choose appropriate items and put them on.
The inexorable passage through Alzheimer’s stages eventually prevented her from going to the bathroom by herself. Not only did we have to help her with such primary needs, but we also had to live with her screaming and aggression — particularly when she was being bathed as she could no longer tolerate being wet.
My lack of sleep sapped my strength and ability to endure. I couldn’t sleep because my mother-in-law couldn’t sleep. It had been going on for months. In the silence of the night, it seemed like her inner noises disturbed her the most and she couldn’t lower the volume of her inner deliriums. She no longer understood the rhythm of day and night. The whole family was becoming sleep deprived and that made everything harder.
I suggested to my wife that we enroll her mother in an Alzheimer’s day care facility or nursing home where she could be enriched by specially-designed activities for Alzheimer’s patients. My mother-in-law heard me and she developed a fear of being “taken” or kidnapped in her sleep. She did not even want to go to bed anymore and, even though she forgot so much else, the phrase nursing home remained in her delusions for weeks. Later, although she forgot the episode, she was still left with feelings of fear and anguish whenever she tried to go to sleep.
I was trying to explain to my wife that it was no longer possible to communicate with her mother, that she no longer had her identity, but my wife insisted that she wanted to stay as close to her as possible until the end. I was afraid I was becoming depressed and that my marriage would be ruined.
Suddenly, I remembered something that my mother-in-law, when she was still aware, would oftetn say to my wife: “Always protect your family.”
I restarted the conversation with this phrase in an attempt to regain my wife’s confidence, to make her understand I was not speaking from a place of selfishness or due to lack of love or respect for her mother, but rather from a place of love and respect for ourselves.
I told her that at a day care center for Alzheimer’s patients, an Alzheimer’s assisted living center, memory care facility, or nursing home, the professionals would be able to care for her mother even better than we could. We had choices and could look for a suitable place, close to home, with welcoming and with qualified staff. Possibly with a garden and — if we were to choose a residential option — we could arrange her room with her own familiar belongings. I encouraged my wife to see this decision not as abandonment, but as a request for help. Still, she thought I was suggesting something terrible.
For my wife, choosing to seek outside care for her mother seemed to bring the final goodbye painfully closer. Ultimately, we did opt for professional help, but my wife experienced anxiety and guilt afterwards. She felt that she had betrayed her responsibility and had disappointed her mother.
Taking my mother-in-law to a nursing home was the most difficult thing we did during her — and our — journey with Alzheimer’s disease. But there was a positive side, too. Because we had waited a long time before doing this, we understood my mother-in-law’s needs quite well. This helped us to choose a residential care facility to best serve her.
Throughout the stages of Alzheimer’s and the adaptations we, as a family, had to make to try to manage them, there was pain. But we tried to make conscious, meaningful choices to live up to my mother-in-law’s maxim: “Always protect your family.” That included protecting her as best we could, and protecting ourselves.
May you find peace and protection, as well.