Today, in honor of TakingCareofGrandma.com’s One Year Blogiversary, we are looking back at the challenges I’ve ran into over my past year of caregiving and blogging.
The issues I have struggled with the most are managing work and life balance, dealing with decline, and working as a team.
Managing Work and Life Balance
For over a year and a half, I cared for Grandma mostly by myself. I got the occasional Wednesday off when her longtime pal, Linda, came over for a visit, and Fridays when she went to her Life Group. My mom checked on her once a week during the day.
I took her to all of her appointments, which often meant making up work hours after getting home from Grandma’s late in the evenings or sucking up my vacation days. (Aside: if only providers were truly family-centered and had hours outside of 9-5 or came to you!)
I was also worried that Grandma spending so much time alone during the day was not only contributing to her decline, but also creating a great deal of sadness and loneliness for her. These suspicions were confirmed when we began the dementia screening depression last March. (Read more: https://takingcareofgrandma.com/the-alzheimers-odyssey-getting-the-diagnosis/)
I knew (and trust me, plenty of people took it upon themselves to point out) that having such little support wasn’t good for either of us.
So when Karen joined our team in last June, it was like a breath of fresh air.
Having Karen gave me peace of mind. I could go to work and actually focus on my job, knowing that my grandma had someone to keep her company. I no longer had to rearrange my schedule or use vacation to take her to appointments. I even successfully traveled for work a few times thanks to her being with us!
When we brought Karen on to spend time with Grandma during the day, my actual caregiving schedule didn’t change very much. I still spent most evenings with her through the week and big chunks of time on the weekend. But having Karen meant that sometimes I could take a break in the evenings sometimes knowing she wasn’t by herself allllll day.
Things were fairly stable over at Grandma’s and I was managing work and her life pretty well, but internally I was feeling burnt out. I could barely get up in the morning. I carried guilt around like a knapsack over my shoulder for what I felt I should be doing at Calvin’s. I stressed out about my grandma spending days alone. I knew that I myself needed more than just Friday off.
When I did get to Friday, I was too tired to do anything. Saturday and Sundays were full days of caring since I didn’t have to work, so those evenings were out. I’d get home and sit around agonizing over all the things I wanted to do but didn’t have the energy. I realized that was no life for me, and I feared it might start pouring over into my caregiving role.
Somehow, I could feel a storm brewing and I needed to get some backup in place.
So, I did what any other millennial person would do and I turned to social media.
In February, I posted on my social media channels that I was looking for some helpers for Grandma.
I know everyone probably thinks I am a weirdo when I say this, but when I made this post, I LITERALLY was picturing my friend, Leslie, in my mind. Leslie and I went to grad school together. She’s one of the few I kept after I graduated. She’s very educated and kinda crunchy and loves people. Guess what! She tweeted me back immediately and asked where to sign up!! Leslie and Grandma and I all pow-wowed at an ice cream shop for the interview and we agreed Leslie could help on Thursday nights, freeing me up to attend a board meeting for an organization I volunteer for and have two evenings to myself.
Then, another friend messaged me on Facebook. She knew someone who was interested. Karlin joined our team at the beginning of March. We successfully filled up all of Grandma’s weekday hours. I finally got Grandma’s lineup arranged to a semblance of sanity.
At the end of February, Calvin went to the hospital. He was sent home with hospice care. This was my first encounter with hospice care. Myself, along with Machon, the only person to stick with us when his residential provider deserted us, believed there was no way Calvin was to the point of hospice. We were convinced that he didn’t need it and he was going to bounce back, but he showed us. (Read more: https://takingcareofgrandma.com/heres-to-temporary-farewells-and-new-adventures/)
Calvin passed away in March. It’s the first time I’ve been responsible for making final arrangement of someone I dearly loved. Parallel to the process of settling his estate, I’ve been dealing with all the typical feelings- denial, sadness, loss, guilt, and culpability. I experience flashbacks of our last moments here together on earth. Waves hit me out of nowhere and I’m frozen, overcome by emotions.
Add to that the anticipatory grief for Grandma that resurfaced when I lost Calvin. I started thinking about what was going to happen if and when I lose Grandma. Pretty soon, I told myself, I’m going to be all alone in life.
Some might say I didn’t manage the balance between work and life very well. Hell, even my own boss didn’t believe me when I handed in my resignation.
Ultimately for me it is a very simple equation:
Through all of this, my concern was on others when I should have had a little more for myself. And now, here we are.
Dealing with Decline
Despite all of our best efforts to maintain a constant routine and keep things the same as much as possible, Grandma has declined quite a bit over the past year.
She is declining physically. Our typical Sunday routine was church and grocery shopping. Grandma can no longer tag along to the store. So we’re talking about visiting the farmers market for fresh food on the weekend and tackling a shorter grocery list mid-week.
Grandma’s faculties of memory and judgment are slipping away from her as well. Some examples:
- Grandma doesn’t think about her walker tray even though she walks right by it every time she goes into the kitchen.
She falls trying to carry too many things instead of focusing on walking.
- Grandma fell and forgot to press the Medical Alert.
She didn’t want to bother me at work, so she called someone from church to help her. Frustrated, I went through the regular schpeel: I should be the first call and she should never be afraid to call me.
- Grandma and a Jehovah’s Witness lady started having regular visits on Wednesday afternoons.
She was letting her in and spending a good chunk of time chatting with the lady. She never told me about the lady until I found a Bible she’d left for her. It probably never occurred to Grandma to let the lady keep it moving because she was a Baptist!
Imagine my disgust to find out a complete stranger had worked her way into the house! I explained to Grandma that not everyone is who they say they are and not everyone means well. I called the lady and let her know she needed to go through me if she wanted to keep talking to Grandma.
- Grandma eats spoiled food despite the counsel of her helpers.
When Grandma’s fridge went out right before I went to spend Calvin’s last two weeks caring for him. Against the advice of myself and Karen, Grandma ate some food that had been left out for who knows how long. That landed her in the hospital with enteritis.
Adding to Grandma’s natural decline, the three week disruption to our routine this March moved her downward trajectory. Even though she bounced back a little from the hospitalization from eating left out food, she hasn’t returned to who she was even just a few months ago.
I’m working on predicting calamity.
Knowing that Grandma doesn’t remember certain things that will keep her safe, we have to figure out how to stay one step ahead of her and put safeguards in place to prevent these kinds of things from happening.
There is another key lesson that has smacked me on the head so hard I almost fell on my feet:
My grandma can’t help the fact that she doesn’t recall what we did yesterday or that she didn’t notice the notes I left for her all around the house. Her aging brain does not always calculate the steps she needs to take to safely travel from one room to the other. I took a long look in the mirror and realized that it’s not Grandma who needs to change, but me.
Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.
1 Corinthians 13:1-7
…when Grandma asks the same thing three times inside of fifteen minutes.
…when Grandma forgets to do something I wrote down in four different places.
…when Grandma makes a huge mess because she is doing too much.
…when Grandma falls and I have to drop everything to rush out there and pick her up.
…when Grandma goes to the hospital and I have to rearrange my life to be with her.
For more on responding in love, check out this great message: The Best Life: Living with the Fruit of the Spirit Series – Love delivered by Clay Withers, Adult Ministry Pastor at First Baptist Church of Blue Springs recorded on July 9, 2017 http://fbcbluesprings.org/media/player/?type=video&id=242
Working as a Care Team
Another challenge is working in cahoots as a care team. I wish I could say this is a new struggle, but even as Calvin’s guardian, I had to learn how to swallow my pride, pick my battles, let things go, stay positive, and take other people’s point of view into consideration.
Looking back over the past 365 days, I can see where better communication on my part would have helped in many situations. Sometimes, we blindly convince ourselves into believing that other people will do what we would do. Instead, we should lay out clear expectations about what we want people to do, so we don’t get upset or disappointed when they act differently than we would have.
Often times, when I got upset over something someone did, it was because I didn’t leave specific instructions on what I expected.
So over the next year, I am going to try harder to communicate. In partnership with Grandma, we are going to be more intentional in our planning each week, with more detailed plans of activities and meals. We are going to consistently “use our tools–” that is, rely on all of the wonderful technology and procedures we have set up around her house to keep her safe and help her have a good life.
Nobody wants to go through hardships and challenges, but I can’t wait to see how we meet the obstacles we come across in the year to come so I can share more lessons learned with you!
I hope you will follow along with us on our adventures and mishaps over the next 365 days and stick around with me for the TCG Blogiversary Party activities throughout the month!