For Caregivers, There Are No Weekends
“Help me, Help.” Grandma yelled. It was Saturday but dementia doesn’t take a day off. She was yelling because she thought that my mom and I were trying to hurt her. We were trying to help my Grandma get changed and reapply for medicine to prevent bedsores. I briefly worried that if she kept yelling we would eventually get evicted from our apartment. The only good thing was that her voice has grown weaker and perhaps our neighbors hadn’t heard. Still, the reasons her voice has gotten weaker didn’t exactly comfort me.
This is every day now. My grandma, who developed dementia last year, has rapidly worsened at a speed that shocked even her doctors. Last year at this time, she was still working as a counselor and showed few signs of the disease. Every day my mom and I, along with our dear friend Anna, clean and change her and make sure she eats and drinks. Sometimes she resists. Occasionally she will be downright hostile. The days and nights are long.
I can’t begin to know how my Grandma feels. It is hard for anyone to know what someone with dementia feels like inside because no one has successfully come back and been able to describe how they felt. I can only imagine how hard it is to be confined to a bed, in pain and very confused. It is incredibly difficult to see a loved one in pain and suffering. According to the Dementia Society of America, more than 9 million people currently have dementia. There is no cure. There are few effective treatments, especially for severe dementia.
Due to Covid-19, many people prefer to take care of terminally ill relatives at home rather than risk contracting Covid-19 at a nursing home. This isn’t an easy choice. It often requires quitting jobs or delaying education. It puts strains on marriages and relationships. It is physically demanding. The majority of families can’t even begin to afford professional caretaking services which can cost upwards of $25 an hour. Patients with dementia can be physically and emotionally abusive because they are unaware of their actions.
Most caregivers are women and tend to do the most difficult tasks such as helping patients bathe and change. Many come from low-income homes. This is thankless work. Sure you may get a small amount of money from the government, but it is far less than what you expend in energy and loss from other income streams. There are no weekends. Day in and day out, you are responsible and afraid. Afraid you’ll make a mistake and most of all afraid you haven’t done enough.
I lost my job in January due to COVID, which meant I didn’t need to make the difficult decision to choose to quit. In some ways, I am happier now. Caregiving may be difficult and thankless, but I can’t help but feel like this is the way society is meant to function. Our ancestors had no choice but to care for the chronically ill and dying themselves. There were no long-term care institutions. Modern medicine has extended life but the extended life means that many people will spend their final years all alone.
If Covid has taught us anything, it has taught us that our traditional mode of existing was not healthy. Our society was dying with the race towards business and commerce at the expense of family and community. People tended to assume you should send elderly relatives to nursing homes instead of caring for them at home. (And sometimes people can’t care for their family at home. There are many reasons why it may not work for many families.) Even though this work is not easy, it has been incredible and oddly inspiring to watch life as it should be. Dementia is not something that can or should be romanticized as movies and TV shows tend to do. It is certainly not a joke or something we should make fun of if our political candidates and public figures are on the older side. (Believe me, we see the Dementia Don and Senile Joe comments and they still aren’t funny.) Nevertheless, all of life teaches us something if we are willing to open our eyes to see.
I don’t believe humans were meant to die alone, unmourned and unattended. I don’t believe that we should write off elderly people as less worthy of life and experience.
As my Grandma’s cat curls up on her bed, for a moment she is calmer. Sometimes she tells me she loves me, and for just one moment, I see her as she used to be.
I think all of us deserve to pass on in the company of others and our community. I believe that taking care of the dead and dying is holy work. Just like taking care of babies reminds us that the world is not ending and new life exists, taking care of the dying reminds us that we need to love that person as fully as possible.
This work doesn’t resemble the movies. Dementia patients are not always sweet and docile. Sometimes days consist of my grandma spitting at us. It is hard and smelly. Your muscles will ache from turning a prone body and you will wonder if you can go on. But then I brush the hair back from her face and say, “We’ll be there until the end.”
