Caregivers to Partners with Dementia Need Help and Care
There’s a lot of bad news about living with a partner who experiences dementia. Harvard Health says family caregivers are likely to experience financial pressures, family conflict, and social isolation. Caregiving “can be” physically and emotionally exhausting. I’m hoping this article will offer good news….
“Can be…exhausting” makes it sound as if there are some people who don’t experience exhaustion while caring for a partner whose brain-power is diminishing. As if some people have access to a magic potion? Have you ever met a caregiver who isn’t dancing on the edge of overwhelm or burnout? I haven’t!
If you’re like me, you found this article because you’ve been searching the internet for a shining truth or seed of comfort that will make it less painful to live with your partner’s dementia, neurocognitive disorder, memory loss, and personality changes. But you keep running into less than helpful generic advice and empty platitudes such as, “There will be good days and bad days…”
(Really? Where in that string of monosyllables will I find help for my caregiver exhaustion?)
…yeah, I’m still here. I’m here to offer some hope from someone who has been living with a partner whose cognitive decline began 17 years ago.
You can do this. You can survive this difficult journey, supported by perennial spiritual wisdom.
But you can’t do it alone.
I know you’ve been told to ask for help, because I was told over and over, “You have to ask for help.”
And that brought up two major hurdles for me:
1) It’s embarrassing to need help for things adults are “supposed” to be able to do on their own—like keeping house and interacting with your spouse. Needing help made me feel like a loser.
And:
2) Even when I decided I could ask for help, I didn’t have the remotest clue how to ask, who to ask, or what to ask for.
I needed to learn how to ask for help. But first I had to unlearn the toxic belief that people who need help are pathetic weaklings. And that required a transformation of my heart and mind. And that’s not going to happen by reading a litany of do’s and don’ts about living with dementia. Transformation isn’t something we can MAKE happen; we can only nurture the conditions that allow transformation (growth) to happen.
All Dementia Caregivers Need Help
Dementia Caregivers Don’t Need Advice—We Need Care!
After my spouse was diagnosed with dementia in 2015, I read blog after blog, and article after article. I listened to umpteen how-to-be-a-better-person podcasts as if they were water and I was dying of thirst. But all that searching, reading, and listening left me even more emotionally exhausted.
I was on sensory overload from the indigestible news of how bad it was going to get, caring for a spouse with dementia. And that bad news was delivered with the migraine-inducing endless pounding of rat-a-tat advice—
Practice self care. Keep a routine. Recharge your batteries. Use reminders. Breathe. Speak calmly. Try distraction. Ask for help.
Intellectually, all those words make sense. I’m sure the people offering advice mean well and want to help us. But no internet doctor, lawyer, pastor, financial advisor, social worker, or YouTube relationship guru had what I really needed—the methods, the courage, and the patience to live peacefully with my beloved while his personality and our relationship changed in terrifying ways.
When everything I counted on was falling apart, when I needed survival skills—tools and practices—it seemed all the world had only pockets full of pebbles. Words, words, and more overwhelming, abstract, empty words.
Words are useful for categorizing what we already know. But dementia is a state of uncertainty and unpredictability. We cannot know if, when, or how our partner’s capabilities will diminish. We cannot foresee when the excruciating pain of our ambiguous grief will bring us to our knees.
When people offer us endless streams of words in place of meaningful, heartfelt support, it’s not because they don’t care. It’s because they don’t know how to allow us what we most need—to feel our feelings in real time so we can connect with our inner wisdom. We live in a society that does not know how to engage with emotions, with people who haven’t learned how to be present with us, to bear witness to our pain. Instead, people who are grieving a profound loss are seen as party-killers, shoved to the side, uninvited, told to make lemonade.
We dementia caregivers need someone to sit with us in our bewilderment and sorrow, care that we’re hurting, witness all that is dying in and around us, and LOVE us back into life. We need people to revere us for our courage and resilience, who will marvel at how well we’re managing to keep on going on. Because when people care for us like that, we begin to understand that we’re only human, and ALL humans need other humans.
It’s not pathetic to need help. It’s the way humans are. We are social beings who need each other.
For years, I have been so well-loved by my friends and my communities that I now am able to receive the help which, not long ago, I didn’t know how to ask for.
I’m not saying this is an easy way to live. But it is possible—when we have access to necessary support and resources, if we’re able to allow others to support us. And it’s beautiful because love is beautiful.
I want to share my story with you to encourage you to seek out—and welcome—the many people in your communities who have the capacity to authentically care for you and your partner, without exploiting or harming you, while you move into this unchosen transformation of your relationship and your life. You deserve meaning, joy, and sacred connection in your life, especially when you feel dragged down by caregiving.
I invite you to consider what I call The Slippery Joy way of life, founded on practices and values common to Benedictine monastics and contemplative poets, offering a way of life that has worked for longer than 1500 years in communities committed to the thriving of every individual in every phase of life. I offer free resources, one-on-one mentoring, and group facilitation to help you gather threads of wisdom, making it possible to weave your daily life into a tapestry of beauty and hope.
The Slippery Joy way is not a list of tasks to check off and move on from. It’s a set of practices that surround us with care and kindness, in order to support us in being kind carers. And that’s what we need, what our partners need, what our communities need, and what the world needs in order to be whole-y.
We need the proliferation of care-full and kind care! And I have experienced that care is like a plant—if we pay attention to and nurture caring, care will grow.
The help that caregivers to partners with dementia most need is a continual re-supply of what we’re constantly giving — CARE. Because we can’t pour from an empty cup!
To explore whether a Slippery Joy way of life might supply the help and care you need, in order to be the loving caregiver your partner deserves—read this article.