Over time, my first Elaine faded more and more. As the years passed, I learned a lot about how best to care for my second Elaine – the one whose mind was riddled with Alzheimer’s.
Alzheimer’s disease is one of our greatest plagues. It’s the most common form of dementia, responsible for loss of memory and cognitive abilities that affect daily life. Seven million Americans and 55 million people worldwide suffer from this terrible disease that has no means of cure, delay or prevention. See what I mean? A veritable plague.
Moreover, Alzheimer’s shatters the lives of the family, friends and caregivers of the person who is ill – but none more than the caregiver. Having cared for my wife Elaine over the course of her 20-year bout with Alzheimer’s, I speak from experience.
Over time, my first Elaine faded more and more. I made my share of missteps. As the years passed, I learned a lot about how best to care for my second Elaine – the one whose mind was riddled with Alzheimer’s.
The care of our loved one is a challenge in and of itself. There are Alzheimer’s behaviors and symptoms that are the direct result of this disease, and these challenges are devastating.
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The issues that plague the patient directly affect the caregiver, and it’s easy to feel utterly hopeless at the loss of control. But at times, we as caregivers forget to address the challenges of our own making: things that we can control – such as the three curses of caregivers.
Ignorance is not understanding or accepting that all of the armies marching or navies sailing cannot stop Alzheimer’s and its relentless effects.
As caregivers, our power is limited – but there is power in knowledge. We know we can help our loved one live their best life possible. We can do this by joining their world. Why? Because as long as we try to keep them in our world, both patient and caregiver experience even greater stress, anxiety and despair.
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Instead of looking to correct or remind your loved one, look for moments of shared joy. Finding that joy starts with understanding and overcoming ignorance.
These two things should come as little surprise: One, that caregivers turn to alcohol to deal with the immense stress, emotional burden and physical exhaustion of caregiving. Two, that alcohol is not the answer to a caregiver’s problems. Again, I speak from experience.
There was a time when I turned to alcohol to cope with my sad situation, treating myself to a drink each evening to congratulate myself on having made it through another day as a caregiver. I wasn’t brimming with pride – I was simply relieved to have a few hours to myself. Alcohol helped to numb my mind and escape reality.
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At times, drinking at the end of a long day can seem to fill a void or help us cope. A cocktail is a substitute for socializing. A beer is a stand-in for friends and family. But there is a better way than giving into this. I was fortunate to be a “short-hitter,” as my daughter and doctor swiftly intervened in my bad habit.
I’ve learned that, instead of turning to drink, we as caregivers have to face reality and force ourselves to make healthy decisions for our overall health. Find ways to socialize, take a break now and then, or join a support group – anything to avoid succumbing to this caregiver’s poison.
Hubris is the pride that blinds. While caring for my wife, there were times when my own hubris – the misplaced arrogance that only I could provide what Elaine needed – got in the way of her best life.
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This hubris stems from a caregiver’s stress, burnout and feeling that our actions are unnoticed and unappreciated. As solo caregivers, we feel isolated and abandoned. Negative feelings of resentment, being overwhelmed and loneliness feed on each other. We start to think, “I’m the only one who can do it.”
The truth is, strong emotions like love or anger can cause us to act in ways that defy common sense. We must learn to let go and to take actionable steps to regulate our own mental, emotional and physical well-being so we can act rationally.
Adequate sleep, a balanced diet, and regular exercise can improve cognitive function. Socializing, asking for help, and seeking support can help us feel less alone and solely responsible.
We must allow others to also be caregivers. If your loved one needs more care than you can give at home, take it from me: you’re not “putting” them in a care facility, you’re giving them their greatest chance at life. This was a big hurdle for my own hubris – yet a care facility was certainly the best decision for Elaine’s best life.
And that’s all we as caregivers can do: help our loved ones live their best life possible. We can only do that by also living our best life possible – avoiding the three curses of caregivers to control what little we can in a disease that is otherwise uncontrollable.