I was at my limit.
Life was becoming increasingly stressful and I needed to do something about it.
Dementia is a slow, insidious process
I’m an only child of two wonderful parents, a dad who’s worked hard his whole life to take care of family and those in need (good job, Grandma Charlie!) and my bighearted, kind mama. My mom mostly stayed at home to take care of me, with brief partial college stints, bookkeeping and volunteer jobs. We would visit my great aunt in the nursing home and my mom’s parents, always making sure everyone was well taken care of. I come from a long line of caring people.
But then she started slipping away.
I was busy with my own life north of Seattle, trying to force my life to be a certain way (we all know how well THAT works), and so frustrated it wasn’t working out how I wanted. I would talk to my mom on the phone, noticing her words seemed harder and harder to recall. She used different words that meant sort of the same thing. She had been on different types of medications throughout her whole life. First they thought it was depression. Then they thought it was anxiety. Briefly, one provider thought she might have bipolar disorder. Her 80-something-year-old psychiatrist was giving her samples of Viibryd and telling her there was something wrong with her, “Normally the medication works for most people, I don’t know what’s wrong with you. Let’s up the dose.”
Because I was 70 miles away and dealing with my own self-created problems, I didn’t notice as much until visiting for holidays like Thanksgiving or Christmas. My mom couldn’t talk. She would just stare at us, look like she wanted to say something, then wander off. It felt like she was haunting her own house. I didn’t know what to think, none of us did. My dad did the best he could, trying to keep money flowing in. The good paying jobs required travel and my mom couldn’t go with him. Her gait had changed, her balance was off. Medical appointment after medical appointment just shrugged and tried adjusting meds. We all hoped this was just some random thing that would self-resolve.
I remember one day, I had gotten off at the wrong stop, I didn’t know where and when the next bus was going to be by, I frantically checked all the bus schedules before it stopped running, trying to find my way. Panic seized my fingers as my shaking hands desperately tried to find what route to take. In the midst of this, my mom called me. She couldn’t remember how to work the microwave and was asking me for help. I was hours away, without a car. Dad was on a trip. Family and friends were checking on my mom when they could, but this was one of the between times when nobody was available. You’d think this would have spurred me into running home and saving my mom. I didn’t know what to do. I didn’t even know how to save myself. I stared at the bus as it stopped on the other side of the busy road and left without me. I had been on the wrong side of the street the whole time. I told my mom to ask one of the neighbors for help and called my dad to tell him. He was thousands of miles away himself. Luckily, he was able to get ahold of someone to go to mom and help her fix something to eat.
She drifted further
Flash forward a few years and I found myself moving back to my hometown. My first love and I had rekindled something and wanted to see what would become of it. I was now only 17 miles away from my parents. We enjoyed our time together as a family and with my soon-to-be-husband, playing with side-by-sides up in the hills, my momma always with a big grin. We would see each other on weekends and holidays, life always getting in the way. Soon the weekends together began to stretch to almost months between, just busy with our own lives.
He never gave up
My dad became fulltime caregiver, money-bringer, grocery-getter, bill-payer, chef, household duty-doer, nurse, entertainer, beautician, all while still trying to help his community where he could. As a kid I thought my dad was a secret agent. I’m not so sure I was wrong. Maybe Superman?
I was now working as a medical assistant for a family practice clinic and really enjoyed helping people. My folks and I would find random times to meet for lunch when we could, or have them come up for a visit. My dad reduced his work and began to spend more time at home. We had caregivers come by to stay with my mom while my dad went on the occasional necessary business trip that would keep money coming in to help pay for care while away and money to sustain between. I was trying to manage my mom’s care in place of my dad (while working only one job haha), which became increasingly stressful. I found myself having to be in two places at once. I don’t know how my dad does it.
One instance, a day before Mother’s day, I had to leave work because two caregivers argued about my mom’s care, resulting in the other taking my mom. I received a call from the one caregiver saying that my mom had been taken. My heart seized. Someone had kidnapped my mom?! I raced over there, unsure if I should call the police or a hitman, frantically calling both my mom’s cellphone and the caregiver’s, neither were answering. It turns out, the caregiver was wanting to get pictures with my mom in front of some flowers. I think there was some twisting of info by the other caregiver to get me riled up. Although I was still very upset for having to worry for my mom, I was glad she was returned unharmed. My dad decided no more long travel jobs and changed his career again, which can be really difficult to do! Luckily, my dad’s The Man and is able to do more than most people.
Then the pandemic hit
Life got really complicated. Not only did my work need to continue to provide care for regular health issues, we had to contend with this crazy new virus. And on top of just the regular job, we also had to try to wade through all the misinformation and gossip and just pure nonsense people brought to us, demanding answers, but they didn’t like the answers we gave. Meanwhile, I was worried I would bring it home and accidently kill my mom.
I began to crack
I hit a deer on a lunch break and couldn’t finish the rest of the day. I was a sobbing mess. I returned the next day and struggled to continue to do my job while faced with patients screaming and saying the most horrible things to me. At me. I tried to brush it off, not take it personally, but it’s really hard. Especially when I care so, so much. One day, I returned from lunch to grab my first patient of the afternoon. The patient wouldn’t stop lobbying insults at me, even after repeated boundary enforcement. When she said, “I’m just trying to give you a little taste of humanity!”, it broke me. Why do you think we do this? We do this FOR humanity! My heart broke in two right there. I tried to calmly remove myself from the situation and the insults got worse. She followed me out of the exam room and down the hall as I retreated into a provider office with no exit. My brain was reminded of a traumatic situation at a music venue where I had to hide and my brain thought I was in the situation again. The following days I had trouble returning to work after lunch. I changed my schedule, reduced to three days per week. I was having random crying spells and bouts of rage. I was at my limit. Life was becoming increasingly stressful and I needed to do something about it.
Becoming a caregiver
Little ideas had been flittering around inside my head for some time, but suddenly they clicked into place. I needed to help my dad take care of my mama and I couldn’t do that while also working a fulltime job. My work is super awesome and I feel so fortunate to be able to get FMLA (Family Medical Leave Act) to be able to still have a paycheck and benefits while caring for my mom. I am also fortunate to have such an awesome husband to financially support me with a reduced paycheck and eagerness to help my folks out with whatever they need.
This snowfall we received on Christmas and the day after became a super blessing, despite missing my last day of work (I miss you, Jamestown Fam!). One of my dad’s career changes led to him becoming a snowplowman! He even got this nice writeup a couple years ago in the paper! Solmar Man, 70, Helps Snowbound Elderly Get Medication. He needed someone to care for my mom while he plowed so people could get their food and medications. This was the perfect time for me to step into that caregiver role.
For Christmas I had splurged and bought my mom an assortment of home spa supplies. My first day as caregiver, I treated her to an Epsom salt footbath, complete with massage, moisturizer, and soft socks.
Dementia: the cruel thief
My mom’s dementia has progressed to the point where she now cannot walk, is incontinent of both, and having seizures. Her memory comes and goes, going more each day. She forgets who my dad is and thinks he’s just “some guy” she’s living with. She’ll ask him where Jim is and he’ll tell her, “Hon, I’m Jim. I’m your husband. I’m married to you. You’re my wife. I love you.” She’ll just look at him suspiciously. My dad does a good job of keeping the humor up to keep them going. She recognizes me when I arrive with an excited “Kara!”, but after a while will kind of forget who I am. Sometimes she’ll talk about me to me, or think I’m her sister, Celia.
She’s still there
Occasionally she has these super lucid moments that we cling to. On the 3rd day I was with her as Caregiver, she kept asking where my dad was. I answered each time as if it were the first, she doesn’t know that I’ve answered this 60 times before, and adding anger to her confusion and fear won’t do anyone any good. Most of the time, it’s just because she needs the reassurance that she is safe and things are okay. One of the times I responded with the same, “Dad’s out plowing snow with Micah! He’ll be back a little later today.” She replied, “Hallelujah! I miss him,” with love and longing inflected in her tone. My heart grew/melted and I made sure to tell him. Those moments are growing fewer and further between.
The hard stuff
Another lucid moment occurred while I was doting on her, trying to clean her nails, her hands and feet seem to have minds of their own now. Her hands kept twitching while I tried to use a soft brush. She turned to me and said, “I’m so sorry baby, that you have to do this.” I assured her that I was happy to be there and it was my pleasure to spoil her. She smiled and held my hand.
That day, my dad hesitated leaving, worried about my mom having a potential seizure, as that morning she had some symptoms she normally displays prior to an episode. Seizures happen in dementia patients as cells in their brain slowly die and the brain shrinks, and possibly also due to other medications lowering her seizure threshold. We discussed potential anti-seizure medication, but those meds have their own side effects that don’t make it beneficial in my mom’s case. There really aren’t any great options, other than caring for symptoms as they arise. I told him I’ve experienced people with seizures and know what to do, and promised to to call him if needed. Mom stayed fairly alert, no seizures, just her normal occasional foot jerks and hand trembling. I had spread bird seed in the bushes by her window so that she could see the birds from her bed. She held my hand and told me she liked the blue ones. She pointed, gasped, and giggled as the little creatures flitted about, oblivious of their audience.
Enjoy the moment
I decided to write my experiences with my mom to help other people in their transition of role from loved one to caregiver. This is a very difficult road, but so rewarding to be able to be there. It is absolutely heart wrenching at times to see my mom and my dad go through this. Part of it is grieving the life I should have had with my mom. Dementia has robbed us of the adult mother-daughter relationship we should have had. I’m so thankful I get the chance to be here now for her during this time. What I keep reminding myself is it’s not about me. Once you get the Ego out of the way, it helps. Thank your support team, as they are vital to you keeping your mind, and make sure to take time for yourself. It’s super important to have that healthy separation and boundary, as the caregiver role can take over if you’re not careful. I’m learning as I go and will pass on what I can.
Thank you for stopping by to read my words. Make sure to spread some kindness today, to yourself and those around you. You never know what someone is dealing with on the inside, you don’t want to be the one who breaks them.