Caregiving versus Life

I haven’t written a post for weeks because I’ve been engaged in a battle: Caregiving versus life. Most jobs make it difficult to be a home #caregiver for a person with #dementia. I’m a writer so, theoretically, I can work at home and still manage my mother’s care. Unfortunately she now needs more support because her condition has slipped. I got a bunch of new writing assignments from clients at the same time. I’ve had to choose between being a good #caregiver and taking care of my own life.

Caregiving versus Life

Caregiving versus life

Most caregivers fight this battle in one form or another. You can’t accept a dinner invitation because there’s no one to stay with your loved one. You get no time to spend with visitors because some medical crisis needs your attention. We  lose lots of opportunities to connect with people who might offer us support.

We don’t just miss social activities, we also forfeit huge amounts of money.  An article published by the Family Caregiver Alliance estimates that “caregiving reduces paid work hours for middle aged women by about 41 percent.” Caregivers earn less because we work fewer hours, but the losses don’t end there. The article states that if you add lost Social Security benefits to the drop in income, caregivers lose a total of $324,044. The financial estimates in that article are drawn from the MetLife Study of Caregiving Costs to Working Caregivers, which was published in 2011. Those numbers must be much higher by now.

all choices have a cost

Like many caregivers, I’ve had to make hard choices. This spring I chose to do writing that would boost my income. That means I had to sacrifice some of my personal projects (like the posts I write for this site). I also decided to be less involved in some of Mom’s care and let the hospice helpers do more. No matter how you manage things, you’ll pay a cost while caring for someone with dementia. If you prefer, you can hand all the money over to a nursing home and let them do the work. But it’s a very imperfect solution. Residential care is not always reliable and you can lose sanity over that, too.

I’ve always felt that there were benefits to keeping our family together by caring for Mom at home. You cannot reduce those benefits to an economic price tag. Nevertheless, during the month of June I’ve made a promise to myself to stay focused on my work and let the hospice staff take more responsibility. It’s hard to give up some of the small acts of care that I enjoy performing. It is necessary, however, if we’re going to have a stable economic future after Mom leaves.

Caregivers on Mother’s Day

This post is for caregivers on Mother’s Day. Many of us are tending the needs of mothers who once took care of us. Others are missing the mother they once had. My mom is still alive, but completely transformed by #dementia. After looking after her for years, I use this day to remember what was best in her and ask myself how I measure up.

Caregivers on Mother's Day

In 1960, my mom was one of those young women who worked hard to have it all. Mom was constantly busy with chores required for maintaining a clean and nourished family. She loved her full time job and couldn’t stand to have a messy house or dirty dishes in the sink. To get everything done, she stayed super-organized. All the hangers in her closet faced the same direction and she never did one task without trying to complete another at the same time.

Lately I’ve been watching old episodes of Mad Men. They make me remember that the decade of the 60’s was exciting for women. They were offered new opportunities in the workforce. But if they took advantage of these jobs, they were still held to high housekeeping standards. They were also expected to look pretty. My mom enlisted my sister and I as partners in the process of keeping a neat home. We had special duties like dusting every piece of furniture in our rooms. We shook the carpets outside and ran the dust mop under the tables. These were weekly rituals that Mom never gave up on even after becoming indispensable to her boss. He had high standards, too!

This work ethic was just one side of my mother. She also had a wonderful sense of humor. As you can see from the Halloween photo above, #dementia could not steal that away. When we were little kids, she let us  act as silly as we wanted and often joined in our ridiculous dances and performances. My mother loved to dance with my dad. They spent many Saturday nights whirling around to big band standards or rock and roll.  Mom was strict about right and wrong, but she gave us  a lot of leeway to develop our own ideas. For me, this was a great gift.

What Traits do you share with your Mom?

So what did I inherit? I’ve got her outstanding work ethic. In fact, I should probably ease up on the work and goof off a little more.  Her gift of silliness is always with me. I believe it’s the one thing keeping me together as a #caregiver. There are rarely dirty dishes in my sink — and that’s probably where our  list of parallel traits ends.

I like the IDEA of a clean house, but I don’t pursue it with her passion because I just don’t have the time and refuse to feel guilty about it. There’s no way I can save money like my mom did. Her financial discipline still amazes me. My closets are totally disorganized. The hangers have permission to go any way they want.

There is one other treasure she somehow transmitted to me: a compassionate heart. My mother couldn’t stand to see anyone suffer and neither can I. Watching her decline has been very hard. When things are really difficult our other shared traits of humor and understanding keep me going. What did you inherit from your mother? This is a fine time to remember any good things she passed on to you — and thank her wherever she may be.