How I hope The Tenacious Heart Project will provide support for dementia caregivers.
Dementia sucks.
My dad has dementia. He is in his late 70's. My mom is two years younger. As they are still together, she is the primary caretaker. I live nearby and am there frequently to visit and to help. My siblings are supportive. My sister also lives nearby. My brother does not, but he takes an extended visit once a year to visit and help.
My dad with Sassy (on table) and Rowdy (on his lap). 2022
A wife and three kids and still not enough help
At my dad's last visit with a dementia specialist, the doctor discussed the importance of having help (I attend some of their appointments with them). One thing she said that stood out was that in a care setting, it takes at least three full-time people to provide care for someone with dementia. As you well know, that's because there comes a point where our loved one cannot be safely home alone. During the day, a person with dementia might try to cook, leave water running, wander out of the house. It's common for PWD to be the target of scams or unscrupulous people. At night, our loved ones still have to frequently use the restroom. They are often at risk for falls and broken bones. At some point it's entirely possible that our loved one might confuse night and day and attempt to leave the house in the middle of the night.
Too often, the bulk of this supervisory care, this work, falls to one person. It is important that there is support for dementia caregivers. Home help is not a benefit offered by most traditional healthcare policies and government resources are limited. Even for families able to afford it, many primary caregivers are reluctant to let a "stranger" into their home. They convince themselves that "it's not bad enough yet" to need regular, ongoing care in the home. Caregivers might feel obligated to take on the major burdens of care. Often, a family member will promise their loved one not to place them into a care home.
Impossible expectations stand in the way of change.
We don't talk about dementia or long-term care for chronic disease. Especially with dementia, it's very hard to accept that a long and productive life might end so radically different. If politicians acknowledged the physical and emotional toll of dementia, they would have to loosen the purse strings. The healthcare industry is not incentivized to ensure every person can end their lives with respect and dignity. So, our only examples in the real world are people sacrificing everything of their own life to ensure some level of care and safety for their loved one. If "everyone" expects you to manage in a certain way, we do all we can to meet that expectation. If everyone doesn't get home health or nursing home care, we ask ourselves why we are so special to need more than what other's require.
This must change. Unfortunately, current advocacy efforts for dementia care are a quiet voice in the very loud world. So, we must work together to educate, advocate, and change the standard of care for people who cannot care for themselves.
But first, we must care for ourselves.
We are all familiar with the example given on airplane flights that adults or parents should put on their own oxygen mask in case of emergency. This principle is also true in caring for someone with dementia. For many reading this, you likely feel it's impossible to care for yourself and a person with dementia. You question where you might find reliable, trustworthy help. I get it. And, to be honest, I don't have all the answers yet. But we'll figure it one, a family at a time.
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From my tenacious heart to yours.
