The last summer vacation with my mom was out in the country, at a beautiful house with ample space to roam around. While we pretended we were having fun and tried to watch movies and enjoy being away from our responsibilities, we were also blocking exits, running in and out of the house whenever she decided to do so, and unpacking things as she packed them back up. On the way home, as we were driving 45 miles an hour down Rte 29, she decided to reach over my dad while he was driving, and slam the car into Park. The car made a crazy sound, but my dad corrected. I wedged myself between them in the front seat but she kept trying to reach over. We pulled over, and I drove the rest of the way with my parents in the back seat, my dad calming my mom and holding her back.
Getting home after a long day at work just to make dinner and eat it in under 20 minutes because your mom is acting hyper, then trying to get her dish and put it in the dishwasher before she puts it away, dirty, in the cupboard, is a lot to handle. Most days, we made it through dinner okay. Other days, we wanted to run for the hills! That is, until one of our friends had a genius idea that saved us from exhaustion when we really needed it.
One of the most important things I did when I first moved home to take care of my mother was sign her up for Disability. Unfortunately, this did not happen until 2 years after she was diagnosed, which was 6 years after she first showed symptoms. I am STILL kicking myself over this, but I didn't know it was even an option! It wasn't obvious, and I still am not sure why I thought to do it.
What does Social Security Disability get you?
It has almost been 9 months since my mother passed away, and we are 3 weeks away from what would have been her 67th birthday. When reflecting on what it means to have this space away from caregiving and my mother's illness, I am struck by the difference between the two. I feel like I have had to let go of two huge forces in my life - caregiving, and separately, my mother.
In a typical description of grief, there are five identified stages that we all go through. Of course time and experience varies, but it generally looks like this: Denial and Isolation, Anger, Bargaining, and finally, Acceptance. Where does this all fit when dealing with Frontotemporal Dementia (FTD)?
t has been hard for me to post recently because my mother has entered her final days of life. As we know caregiving is a roller coaster. Some days we have energy, others we can barely eat. The last few weeks have felt the latter and have been filled with questions, decisions, updates, tears, anxiety, and fear. It is the hardest thing to watch someone you love slowly fade. I am thankful for the wide support system I have in my family and friends.
That is all to say: Sometimes you have to mentally check out to get through the day. I learned a long time ago to forgive myself for that and is important advice to anyone caregiving out there. We can only do so much!
I was inspired to post today when my uncle, Steve Seely, husband of my mothers sister, Wende, sent me a poem he wrote about my mother's impending passing. I somehow made it through reading aloud to my mom (hearing is the last sense to go!), and wanted to share with those who knew her. There is hope in her passing and I long for it to be free of suffering and full of peace. In the meantime I am reading her Little Women, a book she shared with my sister and I many years ago. Thank you everyone for you prayers, meals, and support as we spend our last days with our own Marmee.
On Thursday our news feeds will be full of happy families and friends celebrating Thanksgiving together. Before my mom got sick, I loved to see these photos and would post them too, but with her illness came a cloud over celebrations I used to love. It was difficult for me to see others enjoying a holiday that had now become stressful for my family. Over the years transitioning my mom into full-time care and experiencing these holidays without her, we found a new normal, but it took some time to feel comfortable with that.
My older sister, Rachel Eisley, has agreed to be interviewed for my first installment of "Caregiver Spotlight". I want to highlight the diverse experiences caregivers have, and how we all process it differently. Rachel has been living a few hours away for the bulk of my mother's illness process, and has experienced it uniquely from me. Here she describes her experience being physically far, and the influence is has on her daily life. Thank you, Rachel, for contributing your thoughts!
What is the hardest part about being geographically far from mom?
"Today, psychotropic drugs are regularly used to sedate people with dementia into compliance, and nursing-home residents who have no diagnosis of mental illness are given off-label prescriptions for Haldol, Seroquel, and other antipsychotics. These drugs were developed for the treatment of conditions such as schizophrenia, not dementia, and are generally intended for young, robust patients; when such medications are given to the frail and the elderly, they induce a lethargy that can mask symptoms of other afflictions. Antipsychotics are also expensive: a Seroquel prescription can cost three hundred dollars a month. Over the past year, the Center for Medicare and Medicaid Services, or C.M.S., has made efforts to track the use of antipsychotics in nursing homes and reduce it; Alonzo serves on an advisory panel considering the issue. Alice Bonner, a director of C.M.S., told me, “People are starting to realize that, with some creativity and curiosity, we can figure out other ways of taking care of people with dementia. There really must be a very compelling reason to use these medications.” -Rebecca Mead, from "The Sense of an Ending"
Here we are again bringing recognition to another aspect of caregiving. Today, October 10th, is World Hospice and Palliative Care Day! A very important part of any chronic illness' trajectory, hospice and related care are often misunderstood.
What is it?
This week is World FTD Awareness Week. There are many events happening around the world, focusing on bringing attention to FTD and working towards a cure! My mom was diagnosed in 2009 and there were very few resources available at that time. It is so nice to see more involvement and discussion around the disease.
I am going to an event in Washington, DC tonight at the Cleveland Park Bar and Grill from 6-8 PM. It is called "Food for Thought", where we will eat food, and the host will give some form of FTD education. Join my dad and I there if you wish to learn more about FTD, and donate to future research! $10 suggested donation at the door.
Here's a rundown of the social media kit AFTD has created for this week. There are some interesting facts I didn't even know about.
Caregiving can cause sustained anxiety and stress, resulting in burn out. Before my mom moved into assisted living I was exhausted. ALL the time. I had trouble sleeping, was grinding my teeth, had frequent headaches, and since my mom needed full attention at all times, I could not find time to get away and find some calm. So I had to create some ways to find sanity while I was in the eye of the tornado. Most self-care suggestions I've found operate under the assumption that you have time for counseling, to exercise every day, to shop for and cook elaborate, healthy meals, and even for sleep....Of course as caregivers we know we are lucky to scarf down whatever we can find in the pantry and get a few hours of sleep before we start all over again! Here are some realistic tips that can make a big difference.
Today my Mom is turning 66. I could focus on how it will be the last birthday we will have with her, or I could reflect on some positive moments we've shared in the past. I will pick the latter, thank you very much!
I think my love of fall comes from my mom's birthday being in September. We would always usher in the fall season with exciting birthday trips to Hartland Apple Orchard in Markham, VA, followed by apple cider donuts at The Apple House in Linden, VA. We would pile into the station wagon and mom would allow us to pop up the hatch and dangle our feet out the back as we drove 1 mile an hour around the orchard. Between her yelling at us not to fall out (or push each other out), and laughing when I would inevitably get stuck in, or tumble out of a tree (because my sister would shove me), it always felt like a real celebration. In the end, my mom got put to work making apple pies and apple sauces and whatever else she could think of, because none of us knew how to bake anything.
My sister, dad, and I went last week to do just that. We definitely ate too many donuts, and picked too many apples, so now we have to make the best recipe of (f)all - APPLE CRISP!
I was at the National Book Festival in Washington, DC in early September, and AARP was there as a sponsor. They were also promoting resources for caregivers! I have them listed on my page as a resource already, but I wanted to share some of their initiatives in more detail. One of the kind volunteers joked, "You're barely 50!" (I am 28) when I came to the table - and we had a nice exchange about how there aren't enough resources for younger caregivers. Thankfully their materials are helpful to anyone at any age.