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 closedLosing Mom to Alzheimer's Disease Posts
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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