Why It’s Okay to be a Proud Caregiver: A Story About My Grandma

This is a story about caregiving.

And it’s a story about my grandmother, Betty Catherine Terry Vickers Mohesky.

She was a caregiver, and she rocked it.

Let me acknowledge that loss is undeniably linked to caregiving.

My grandpa had multiple chronic illnesses. He had cancer. He had diabetes. He eventually had his leg amputated. For ten or so years, we watched his functionality and independence decline. He passed away when I was in grad school.

It is not my intent here to focus on that loss. It’s my intent here to focus on what I saw as a gain.

My grandmother didn’t finish school. Throughout her life, she was a hard worker, but she never had what I’d call a career. It was rare to see her dressed up. She loved fishing, and you’d often see her in stained jean cutoffs or what she called her “highwaters.” When capri pants came back around 2000, she joked that she’d been wearing them all along.

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She wasn’t sophisticated, fancy, or educated, but she was fierce.

My uncles were in an motor vehicle accident that she attributed (and rightly so) to a poor designed bridge. She pestered the state legislators to modify the bridge. After a young woman died on the bridge, they finally made the changes. After my grandma died, they named the bridge after her. If you are ever driving near Cuba, Missouri, keep your eyes open for the Betty Vickers Memorial Bridge.

But here’s what I want you to know about her…

Caregiving made her better. She learned about blood sugar and the pancreas and blood thinners and kidneys and dialysis. She drove my grandpa an hour each way several times a week for kidney dialysis. She kept up communication with several specialists. She got him to every medical test and procedure and appointment.

When I visited their house, I would scope out this calendar by the house phone (which was just known as “the phone” at the time). There was no Google calendar, just this free calendar that the bank distributed yearly.

It was stacked with medical appointments–sometimes more than one in a day. The wall by the phone was also plastered with business cards of medical offices and services. She kept everything straight. In fact, she made it look easy. I’d hire her as my personal assistant anytime.

When it was time for my grandpa to do home dialysis, she became the master of the equipment and procedure. She would proudly explain to us the steps she had to take to make sure it was sterile. And I’d think it was weird that this tube ran straight from my grandpa’s bladder into the house toilet at night.

Over her years of caregiving, she was forced to learn about a multiple of health conditions. But forced isn’t really the word I’m looking for…she didn’t go looking for these challenges but she embraced them.

She obviously didn’t want my grandpa to have increased medical needs, but she took pride in how she’d learn the ins and outs from his doctors and share info with us. Caregiving threw her into this new world, and she was pretty damn good at navigating this new world.

At the doctor’s office, they called her “Nurse Betty.” And she loved it. She gained a sense of confidence about her knowledge and ability in the area of health care.

It’s only years later that I can see the irony of this…My grandpa’s increased health needs led to a sense of accomplishment for my grandma.

Maybe it’s bittersweet, but when I think of my grandma during this time, I smile with pride.

She took on the challenge. It wasn’t one she was prepared for. She didn’t have the knowledge or education to read medical records, but she figured it out. She asked questions. She advocated for my grandpa. Through the process, she made friends with nurses and the families of fellow patients.

She left the hospital at one point to run to Walmart. A nurse had just complimented a pair of sandals she was wearing. It was important that my grandma proceed to Walmart immediately to buy her an identical pair.

I know she didn’t enjoy my grandpa’s health struggles, but she excelled in the environment she was put in as a result of them. She was a rock star in the caregiver world. She developed new skills. She met new people. In fact, she saw her role as to take care of not only my grandpa but also every other patient, family member, and nurse in that hospital. She’d never call it caregiving. She was just being herself.

My grandma died in 2012. When told she had cancer and had limited time, she responded, “But what will people do without me?”

Then she asked about someone she knew who had recently been admitted across the hall on the palliative care floor.

“That’s just terrible. I hope they are going to be okay,” she said. This was about 72 hours before she passed away.

She taught me a lot of things…but what stands out to me is that she thrived in a world she never asked to be a part of and would have exited in a minute given the opportunity.

She never wanted to provide care for my grandpa. She never wanted him to be chronically ill in the first place. But she didn’t have a choice.

And she was amazing.

She had every right to be proud.

And, those of you who are carers, you have every right to be proud as well. I know you may not feel like you’re rocking it every single day, but you’ve developed skills. You’ve solved problems. You’ve advocated.

Maybe you thought you could never give a shot to a loved one, and now it’s second nature. Maybe you didn’t cook before your wife had Alzheimer’s, and now you can cook a pretty decent meal for two. Maybe you’re a shy person who doesn’t want to bother anyone, and now you’ve learned to tell the nurses when they need to pay more attention to your mom.

Perhaps you feel like a different person than when you started. Maybe you’re more tired and stressed. But maybe, just maybe, you find a sense of accomplishment when you do something as a caregiver that you didn’t think you could do. And you shouldn’t apologize for that.

Caregiving is tough. Don’t feel bad about claiming a reward when you get one.

You got your dad an appointment in neurology when the receptionists originally said they were full. You learned to read that MRI by Googling “how to read an MRI.” You drove to Mayo Clinic and figured out where to park and what building your appointment was in. You convinced your insurance company your wife needed that CT when they originally wouldn’t pay for it. You talked Mom into taking a shower when she hadn’t done so in a week. Yes, those are accomplishments.

Caregiving is full of small–and large–accomplishments.

I give you permission to feel that sense of accomplishment as a caregiver. I know you didn’t want to be here….I know you would prefer if you didn’t need to be a caregiver.

But now that you are here—feel free to admit that you are pretty dang awesome.

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Shrinking and Cluttered Closets in Dementialand

Whatever life throws at you, may you keep your closet full but not cluttered. We can’t control everything about our lives, but we can control where we invest our time and effort. We can’t invest time and effort in everything. We may have less to invest than we’ve had in the past. Invest it in the right things for you. Don’t let how other people organize their closet make you feel like you’re organizing yours wrong. They aren’t you. They may have a bigger or smaller closet, and they may have different priorities.

I don’t often get the opportunity to chat with people in the very early stages of dementia. The nature of what I do more typically puts me in the presence of caregivers and–when I am with people who have dementia–those who are in need of extensive care. However, sometimes I get the opportunity to chat with an individual who I certainly would not have identified as having dementia had they not told me of their diagnosis.

Jackie (not her real name) was such a person. A petite woman who looked to be in her early 50’s with a blonde bob haircut and funky glasses, she struck up a conversation with me at a senior fair where I had earlier presented on family dynamics and caregiving. I expected her to tell me that she was a caregiver for a parent, but she told me that she had recently been diagnosed with younger-onset Alzheimer’s. I asked how she had been adjusting to her diagnosis, not knowing if this was the appropriate way to phrase the question.

She shrugged and told me she wasn’t okay but that her life wasn’t over either. She said she was working on adjusting to this disease rather than fighting it. She believed working with it rather than against it would work best. I liked her perspective, so I asked her to tell me more.

“I had to give up some stuff, so I gave up taking care of things others can take care of themselves,” she said.

She gave me an example.

She used to pack a suitcase for her husband when he traveled for work. Before her diagnosis, she was feeling increasingly tired and frazzled. Her husband was headed out of town, and she decided she wasn’t up to packing for him.

“You know what he said?” she asked me. “He said, ‘No problem.'”

And I guess it wasn’t a problem.

“So he’s perfectly capable of packing his own suitcase?” I inquired. She laughed.

She explained that he often forgot his toothbrush…his deodorant…his razor…(which he could easily buy at his destination). And that he didn’t know how to fold his clothes so they didn’t wrinkle.

“But,” she told me, “The world didn’t end. Wrinkled clothes don’t kill a man.”

(The next time my husband walks out of the bedroom headed to work in wrinkled clothes and I debate whether to say something, I’ll remember that phrase. Wrinkled clothes don’t kill a man.)

She also explained that she no longer gets up early when her kids and grandkids visit to make them breakfast. She knew she would have a limited amount of mental and physical energy, and she felt like getting up a little later made for a more pleasant day for everyone.

“You know what?” she asked. “They just eat cereal. They’re fine with it.”

Jackie told me that it took an Alzheimer’s diagnosis to put her in a position to stop feeling obligated to do things that her family members could do for themselves.

“I thought that my family would fall apart if I didn’t do all these little things for them. Turns out, they can take care of themselves,” she said.

All of us have limited time and energy. All of us have to decide how we want to spend that limited time and energy.

Jackie decided she didn’t want to spend it packing a suitcase for her husband and getting up early to make a huge breakfast for her family. More power to her.

Whether or not we have an Alzheimer’s diagnosis, we can consider whether or not we are spending our time and energy in ways that work for us. I should add that energy doesn’t only represent physical energy. We are talking emotional, mental, spiritual energy as well.

My husband was talking recently about conceptualizing how we spend our efforts as a closet. Once the closet is full, we can’t fit anything else in. Some of us can do more than others, but we can all only do so much.

If you know me at all, you know I do well with literal rather than figurative. However, this closet deal really spoke to me. When I am asked to join a committee or take on a new project, I think of my closet. If I say yes, do I need to throw something else in the proverbial goodwill pile to make room for the new endeavor? Do I have to make a decision to be less invested in something I’m already doing? Will I end up jamming everything into the closet and being less proficient at everything I do?

Here are some of the things in my conceptual “closet” in no particular order:

  1. Writing this blog
  2. Teaching my college classes
  3. Overseeing interns
  4. Speaking engagements
  5. Taking care of our dogs and cats
  6. Watching “The Bachelor” (most weeks this is a two hours commitment!)
  7. Keeping the house clean-ish
  8. Doing Next Level Extreme Fitness
  9. Going to athletic events at our university
  10. Being on boards/committees on campus and in the community
  11. Making overnight oats every night for my husband and me
  12. Administrative responsibilities at work
  13. Working on research articles
  14. Running–when it’s nice outside
  15. Visiting memory care community, adult day centers, and nursing homes
  16. Serving as NCAA Faculty Athletics Rep at our university
  17. Advising Family Service and Gerontology majors and mnors

Some weeks my closet seems pretty dang full. (To be fair, other weeks are a bit more sparse.) A few months ago, I felt like I was having trouble keeping my closet manageable. Everything was overflowing. I felt like the door wouldn’t even shut, so something had to change.

I could have quit teaching my college classes. I could have just gone MIA on campus. I could have stopped coordinating the Gerontology major. No more responding to emails from other areas of the university or turning in reports about the major. I could have not shown up at speaking engagements. Because these are responsibilities related to my paycheck and my professional reputation, tossing them out of the closet didn’t seem like a good option.

I had to look elsewhere to make a change. For years I had taught fitness classes at our community rec center. I quit.

Could I have given up “The Bachelor” instead? Yep, but I didn’t. Could I have decided to keep the house less clean?  Definitely, and I’m not a clean freak anyway. I could have even chosen to forget about this whole blogging endeavor except that I recently invested in a whole year of an upgraded membership to WordPress so you all wouldn’t have to see ads. I guess I have to blog another year to make that worthwhile.

I have a limited amount of time and energy to spend as I wish, and teaching fitness classes is what I pitched out of my closet for the time being. It’s the decision I made. Someone else might have made a different decision. Someone else is not me.

If I were diagnosed with Alzheimer’s or another disease, my time and energy would be more limited, and I would likely have to make more decisions about what I throw out of my closet. (If you are following me with this whole closet analogy, picture that closet getting smaller.) This is what I see people in the early stages of dementia doing whether or not they realize it.

You can also picture that shrinking closet for someone who has depression, cancer, or fibromyalgia. The more limits life puts on us, the smaller that closet gets. As health declines, the closet may be 10% of the size it used to be. It’s increasingly important to evaluate what the heck you are trying to manage in that shrinking closet.

It’s adaptive to acknowledge that your closet is no longer the size of the one Mr. Big built for Carrie on Sex & the City. It’s a closet you’d find in a studio apartment in downtown Chicago. Accept it, and evaluate its contents. You can focus more positively on what is left in your closet when you throw out things that are no longer working for you.

I should also add that an empty closet is…empty. Even a tiny closet needs some contents. We must have something we perceive as meaningful in which to invest ourselves. When we lose that, we lose our purpose.

Sometimes you find, like Jackie did, that giving up some of the things in your closet isn’t as traumatic as you might predict. Many of us, Jackie and myself included, think we are irreplaceable. I didn’t know what my fitness class participants would do without me. You know what? They still exercise–just with a different instructor. I miss them, but they are fine.

Similarly, Jackie’s husband is able to manage to pack for work trips on his own. Even a crisis like forgetting a toothbrush isn’t really a crisis. And although Jackie’s family enjoyed the breakfast she made, they are fine without it as well.

I once spoke with a woman who had cancer about the minimal energy she had while doing chemo. I remember her telling me that she couldn’t do everything so she had to choose what was most important.

“But really,” she told me, “that’s what I should’ve been doing all along.”

So here goes my attempt at something poetic and meaningful, keeping in mind I’m notably bad at poetic and meaningful.

Whatever life throws at you, may you keep your closet full but not cluttered. We can’t control everything about our lives, but we can control where we invest our time and effort. We can’t invest time and effort in everything. We may have less to invest than we’ve had in the past. Invest it in the right things for you. Don’t let how other people organize their closet make you feel like you’re organizing yours wrong. They aren’t you. They may have a bigger or smaller closet, and they may have different priorities.

For now, I’m keeping The Bachelor in my closet. Don’t judge.

 

 

 

Following Up in Dementialand

Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance.

You can read all about it here:

https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/

I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent me comments like:

“Chill, honey, it’s just a movie.”

“So what if it’s not realistic. It’s a damn movie. Relax.”

“You don’t seem to understand the purpose of a movie. Why do people have to overanalyze everything and take away all the fun?” 

I was surprised that this post caused a stir, but I’ve realized that I’m a poor judge of which of my blog posts people will be controversial. I never would have guessed that my post about The Notebook would earn me the most hate of all 50-some posts I have written. People acted like I was killing kittens. And I can laugh about this now…

I predicted that Monday’s post about care partners who pray for their loved ones to pass away would offend someone. I thought I’d get a few emails from people who didn’t like the way I presented this, or maybe were just uncomfortable with the whole premise.

I got a little bit of feedback on Monday morning, mostly from people who said they could relate to the post. A few people thanked me, and in general people said reading the piece made them feel a bit more comfortable with their experience of wishing a loved one would die–rather than continue to live a life that they were pretty certain wasn’t worth living. I went for a run and checked my email when I got back. And whoa.

I had a lot of emails. Nineteen to be exact. They were from individuals who had experiences to share that related to the blog piece. Many of the emails were from care partners or former care partners of those living with dementia. However, quite a few of the emails were from those who had lost a loved one to cancer or another illness. And I thank those of you who gave me permission to share parts of your emails and Facebook messages. (A few people also posted very insightful comments on the actual blog post, if you are interested.)

Here are excerpts from the messages I received:

“My mother in law lives with us and has vascular dementia. I hate to say it, but I’m ready for her to pass away. It’d be different if I thought she had any joy in her life now. But I don’t think she does. There is a time when somebody is just done. She’s done. But her body is still here. I haven’t told my husband this. I don’t know if he’s there yet.”

“I have felt guilty for years because my mom was dying of cancer and I wished it would just be over. I prayed for her suffering to be done. Then when she died I felt awful. Not because she was gone but because I prayed for her to be gone. But she was suffering. I just couldn’t do it anymore.”

“My mom has Alzheimer’s and she has had it for about 10 years. The first 5 or so years she was happy. Now she’s not. She lives in terror. I know it must be scary for her. It’s scary for me. I just want it to be over. I want the nursing home to call me and tell me she’s gone. When the phone rings, I hope they are calling to say she’s gone. Maybe that’s awful, but it’s the truth.”

“My dad doesn’t want to be here anymore. He has cancer and Alzheimer’s. We don’t make our animals suffer. We know the kindest thing is to end their suffering. But people have to suffer until the bitter end and we have to watch it….Dad asks me to help him end it in a joking way. He says I should just shoot him and laughs. But I wish I really could.”

“For many years I have felt bad about praying for my mom to die when she was at the end of her life. The doctor kept giving her antibiotics and meds. I wanted them to stop giving her the medicines but I didn’t know how to tell them that and was scared they’d think I was a bad person. So I kept giving her all these medicines but hoping they wouldn’t work…Reading this made me feel more normal.”

“My mom had Alzheimer’s and I prayed she’d die for over a year. After she finally passed, I missed being in dementialand. I guess I got used to living there. I also felt useless like no one needed me. I didn’t know how much I needed to be needed.”

“Amen. My husband is at the end of dementia and has COPD. He is tired. I am tired. I don’t eat, I don’t sleep, he doesn’t know what’s going on. I want to fast forward time. If I had a remote control I’d hit fast forward. Then I think about how I know that after he’s gone I will want to rewind but still can’t stop from wanting to hit fast forward. Don’t know how to change how I feel.”

“I thought I would feel sad when my sister died of Alzheimer’s but I didn’t. I really just felt mostly relief. But I still feel horrible that I felt relief. I feel like a good sister would’ve been sad. This blog post helps a little.”

I usually feel good when I write something that people “get.” If people say they can relate to something I write, I feel like I’ve been successful. However, I didn’t get that feeling as I read through people’s comments on this one.

I just felt…sad.