Sedro-Woolley, WA — It was a last resort for the gentleman who’d been a master carpenter to give us a call. Several years retired with a full shop complete with baby monitor behind the house, he deeply regretted telling me that he’d had it up to here. The baby monitor was so he could hear his wife if she needed him but, for all he’d done to set up their home for her care, for all the repeated questions he diligently answered every time she asked, his threshold for caring had been exceeded by exactly one thing.
His wife had dementia. She was “pleasantly confused” as we say in the business and happy to have a guest when I finally stopped by. We stood in the kitchen and made tea. I noticed that she’d been a crafter — little fabric magnets on the fridge, crocheted potholders, an afghan. Now she spent her days pulling the skeins of yarn from her knitting bag, asking him what she should make, and declaring that the yarn was beautiful, over and over again. Her husband patiently engaged with her banter, told me he went out to his shop for a few hours most days to take a break, and noted that she was still delighted to tell him when the mail was here. And yet he’d reached his breaking point, he told me, because recently she’d stopped getting up at night and finding her way to the bathroom. He could do all the care, he said, except washing the sheets every day — it put him over the edge.
In the long picture, he knew that one load of laundry every day was a tiny thing compared to the repeated questions and one-hundred percent of the household chores he was juggling — but it was his thing. He knew that he couldn’t continue to care for her with this line crossed. I reassured him — every caregiver has their thing. We could discuss some options.
In the past 10 years, we’ve come a long way with understanding the fatigue of being the person providing care. We know that caregivers are twice as likely as those who are not caregivers to experience a chronic condition. And, only 16% report that anyone has asked them what they need to take care of themselves.
Many caregivers only seek out help when their doctor sits them down and says, “Look, this is affecting your health and if you don’t get extra help on board, it’s going to kill you. And then what’s going to happen to your loved one?” Related to that and like the gentleman who had to do laundry, the stress falls into four basic areas:
Financial. Often we start caring for a loved one because it’s part of our role and then it becomes our whole life. Then, paying someone else to step in (by the time we actually do it) is expensive. For others, the constant care keeps us away from our earning potential — this is especially true for women who make up over 75% of caregivers. Other financial stress comes from the wide gap between what care costs privately and how low your resources must be for the safety net of Medicaid to catch you.
Social. Parents are aware of the all-encompassing role of caring for little ones and then craving an “adult conversation” by the end of the day. The same is true when we’re caring for another adult. Where we used to spend with our friends, now we’re with a loved one and our social tank slowly goes down the drain. You may hardly even know what to say when a friend calls to ask how you’re doing. Or what if you move across the country to care for a family member and have to rebuild your social network?
Psychological. Sometimes it’s too much to be the capable one — to manage the emotions along with everything else — when you just want to be a spouse/daughter/son/friend again. When we’re providing over 50% of the care, there’s less than 50% of the space to be who we were in the relationship. This unbalance between the work and our identities causes a depression that should have its own name and should not be taken lightly.
Physical. Think of the gentleman who couldn’t handle another load of laundry. For him, all of his stress was in the physical burden of caring for his wife and the task of doing the laundry every single day became the line where he knew he needed help.
November is National Caregiver Month. If you or someone you know could use help, it might be wise to start with trying out a break related to easing where you feel the most stress. This break, in the industry, is often called “respite”. What does that look like for you? Do you miss water aerobics? Would you like to take a nap? What if you could sit on the floor of a bookstore for an hour and look at coffee-table books? Is there a friend or counselor who could just listen to your reality for a little while?
Here are some resources to get you started:
One more idea — if you’re on Facebook, build your community by joining caregiver forums. Some forums are more general (Caregiver Support Group) and others are more specific (Dementia through Daughters Eyes). Other people find they need a group that connects them with something not related to caregiving at all (Funny Pets).
There isn’t one magic answer and sometimes you have to try things more than once to figure out what works — which is no small feat when you’re exhausted. We all draw our own lines for how far we’ll go before asking for outside help.
Several miles away from the gentleman who did laundry, I knew a woman who cared for her husband who had dementia. He’d come downstairs with five belts on and make her hurry to fasten them so they didn’t miss the Good Friday service….on a Tuesday. They weren’t even religious. She’d give him an Oreo and walk him back upstairs only to come back later and find he’d lined up all of his socks like a train down the hallway. She always told me, “When he doesn’t remember my name, I’ll know it’s time for him to go into care”. Wouldn’t you know that he never forgot her name? Eventually she exhausted herself, reconciled that her line in the sand had to move, and found a place where she could visit him every day. It saved her life and he was just fine.
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Western Care Partners provides navigation through the services and emotions that come with caring for a loved one who is getting older. We explain resources, facilitate family conversations and provide guidance through dealing with the situations that come up as a loved one needs more help. Contact us for more information: 720-675-9902 or www.westerncarepartners.com.