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“One of the hardest things you will ever have to do is grieve the loss of a person who is still alive.”
–Unknown
I would like to tell you about a man named Tom. I am not using his last name to respect the privacy of his family.
I never met Tom in person. I only got to know him a bit through an online group for caregivers of early-onset Alzheimer’s patients. Like myself, Tom was caring for his wife.
But, I did get a sense of who he was. Even online, aspects of one’s personality peek through. And Tom and I were dealing with many of the same struggles.
Being a caregiver is often a thankless job. For many of us, our loved ones are no longer capable of thanking us, or even understanding the sacrifices we make. Tom quit his job to care for his wife. He moved with her to Argentina and would exhaust himself caring for her.
Tom shared his frustrations and they were familiar to the rest of us. These groups are the one place where we can go and (usually) not feel judged. Caregiving is a lonely activity, even more so when caring for one’s spouse. You no longer have that person to go to with your own fears, frustrations, and worries.
Tom talked about these things openly. He wore his heart on his sleeve. He mentioned the day-to-day struggles of helping his wife as she was no longer able to communicate. Of playing her favorite music and dancing with her in the mornings and evenings. He also spoke openly of his own loneliness, the lack of intimacy that comes with being a spousal caregiver.
He also spoke of something I’m familiar with, learning how to ask for and accept help. He had to get help from his wife’s family, something that was, at times, awkward. He had to learn to accept input from others. He spoke of his frustration with those who tried to help, but did not understand the disease as those of us who deal with it daily do.
Tom was open with us, perhaps more than with anyone, about his own fears and limitations. He spoke of the early stages of the disease, when his wife, a professional, struggled to learn new concepts in her field.
He spoke of his own feelings of inadequacy as a caregiver, especially as the money began to run out. Tom often spoke of what he’d lost and that he’d begun to neglect his own needs in his effort to care for his wife.
Recently, some in the group began to become concerned because we hadn’t heard from Tom for a while. Though most of us had never met in person or even had much communication outside the group, a few had exchanged messages with him.
Then, we got the news. In early January, Tom took his own life. His wife, entering the later stages of the disease, is now being cared for by other family members.
It is well established that caregiving can take an enormous toll. Caregivers face substantial financial obligations and career sacrifices. Studies have shown that they have higher levels of cortisol, the stress hormone, and higher rates of depression.
A Stanford University study found that caregivers have a mortality rate more than sixty percent higher than non-caregivers and that more than forty percent of them die before the loved ones for whom they are caring.
Tom and I are in the minority, caring for early-onset spouses. While more people are being diagnosed at earlier ages, Alzheimer’s is still a disease of the old.
But with an aging population, the number of caregivers, both loved ones and professions, is also increasing. And there is a desperate need for resources, to treat the diseases, and to provide respite and comfort, both for the patient and for the caregivers.
For those dealing with this disease, the Alzheimer’s Association offers a 24-hour helpline at 1-800-272-3900.
And for anyone dealing with stress or personal issues, or for whom life has simply become overwhelming for any reason, the National Suicide Prevention Lifeline is 1-800-273-8255.
If you need help, call today. Whatever you are dealing with, you are not alone.
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Photo courtesy Unsplash.