That night I thought about this situation and I concluded that this didn’t just happen in an hour. I know that infections can spread and worsen rapidly but this had to have been ignored by a caregiver. It had to be ignored or missed by the person who got her dressed and put on her socks that morning. This was either a caregiver cover up or incompetence. I was distraught by the whole situation and realized that I no longer had an ounce of confidence in the level of care that my mother was receiving. I had to get her out of here and I had to find a place that would restore my confidence.
Comments closedAuthor: Nancy Peterson
With Alzheimer’s disease, the loved ones feel the loss and the grief. In my small family of three, my father and I felt the loss as my mother slipped away into her own world leaving us behind. I watched as my father tried to hang on to his wife, the love of his life. At the same time, I was struggling with my own loss of my mother, my confidant since early adulthood and my best friend. I became my father’s support and therapist of sorts during a time when I needed my own support and therapist. It felt like an impossible situation sometimes.
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I doubt my mother ever feels a sense of loss when I leave. For me though, it still hurts sometimes because she doesn’t remember me or know that I was just there. An Alzheimer’s patient lives entirely in what he or she sees in the moment. I know that she loves having me in her world while I’m there. When I sit with my arm around her, she gets as close as possible. But once I duck out of her sight, I don’t exist to her. She does not miss me.
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The interesting thing is that even prior to my Ahha! moment, I noticed certain things about her behavior but never connected it to dementia. I brushed things off as part of aging.
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This practice of leaving a patient or resident in bed for excessive amounts of time is a real flashpoint with me. The more time a patient stays in bed, the faster the patient declines due to lack of conditioning. It’s depressing for a patient and it takes away all opportunity for socialization. Patient confinement is a very sneaky practice and it robs vulnerable people of everything.
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At the time rehab was evaluating styles of wheelchairs, we went into the Christmas and New Years holiday week. I never imagined at the time that it was an urgent issue. I wish I understood the risks.
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The reality is that I need to be present for her to oversee her quality of life. It is therefore important that I find a way to alleviate caregiver exhaustion on a regular basis. I need to regain my whole self and actually live.
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Caregiver grief has altered the way I connect with my own emotions. I’ve never been void of emotion but some days I just can’t feel anything. I’m numb. Other days I’m so overwhelmed all I can do is sob. I’ve burst into tears in restaurants and hidden tears in public behind my dark sunglasses. I can’t turn those off.
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I cannot fathom that there will be a noticeable change in her from day to day. But as I’m learning, there are variables that I don’t understand and no one can predict and so, this notion of day to day consistency is just an invitation for heartbreak.
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So in hindsight, what would I recommend? I would recommend formulating a fall back plan in case the primary caregiver becomes ill. The dementia patient needs a plan that can be put into action immediately because it is a life and death safety issue.
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