When I first became my mom’s caregiver, I thought that being a happy caregiver was is a bit of an oxymoron. To those who are thrown into caregiving, it often feels like a thankless job. And whether you’re caring for a loved one alone or with a team of family, it’s emotionally, financially and sometimes physically exhausting. You’re constantly pulled between wanting your own, normal life back and the guilt you feel from wanting your own, normal life back. Unless you’re some magical superhuman being, it’s difficult to find happiness when you’re burnt out and grieving. You’re human. It’s natural.
It’s taken years for me to realize that happiness as a caregiver won’t just fall into my lap. Becoming a happy caregiver is a process. It isn’t a given. It ebbs and flows. Sometimes it’s hard work to be happy. Since time travel hasn’t been invented yet, I can’t change my caregiving mistakes. What I CAN do is share what I’ve learned in the last few years to become a happier millennial caregiver.
#1. Self Care
It’s so, so true that you can’t pour from an empty cup. I would know. I went through the stress of becoming a new mom to twins and becoming my mother’s caregiver simultaneously. In the beginning, I tried to be super mom, super wife, super daughter. And guess what? I was miserable. I was experiencing caregiver burnout and it was very real. If you are unhappy with yourself, it doesn’t matter how many people tell you what an inspiration you are.
According to a 2015 report from the AARP and the National Alliance for Caregiving, there are an estimated 9.5 million millennial caregivers. That means that a little more than 11% of America’s millennials are caregivers — most of them caring for a parent or grandparent. And while that’s a lot of us, it also means that the large majority of millennials are lucky enough to not be in our shoes. Cut yourself some slack. This job is no joke.
Take care of yourself.
Go for a walk or hike outside. It’s amazing what some good ol’ vitamin D can do. Get a foot massage, indulgent in a pricey coffee, treat yourself to window shopping. Do something everyday that makes YOU happy. Put away your phone and just have a moment. You deserve it.
Along with taking time out for yourself, you need to physically take care of your body. Easier said than done, right? I’m no stranger to stress eating and sometimes you just need to indulge. But it’s amazing how much better I feel when I eat healthy and exercise. With every vitamin you pop, it’s also a small reminder that YOU are important and YOUR needs matter.
#2. Let Go of Guilt
As millennial caregivers, most of us are just hitting some of the major milestones of adulthood. We’re climbing our way up the career ladder, moving into our first homes, perhaps we’re getting married and having babies. When you suddenly find yourself caring for a declining parent or grandparent, it can be a jolt. It’s only natural to wish for the way things were. Don’t feel guilty for sometimes missing the way your life used to be.
On the other side, guilt also comes from not being able to be with your loved one enough. This person nurtured you and loves you and you feel guilty for not being able to mirror that same dedication and selflessness.
Even though it’s 100% the right move for my mom and our family, I still find myself hanging onto guilt from putting my mom in a memory care facility. I feel guilty when I drop her off. I feel guilt when she calls me in tears that she wants to move back to her old house. I have to remind myself that my mom was adamant when she was first diagnosed that she wanted me to live my life to the fullest and not be a caregiver. It’s important to remember that this isn’t what my mom hoped for either.
The point is, as millennial caregivers, you’re doing the best you can. We were dealt a tough hand. Life happens. Your life is happening now. Give yourself a break. Let go of the guilt.
#3. Realize that Friendships Evolve
When I first became my mom’s caregiver, I had a difficult time relating to my peers. I was in crisis mode and while my friends were worrying about weekend plans, I was worrying about getting my mom medicated and stable. At first, I secluded myself. I didn’t know how to act when I wasn’t my snarky, 20 something self. But that got lonely fast.
Friendships evolve. The friends who can’t hang, won’t. Your real friends will be there for you through the good and bad. Friendship isn’t about being happy all the time. See your friends. Lean on them. It’s okay to not feel “yourself”. Give them the credit they deserve.
#4. Get Support
Even if you feel alone in your caregiving, you aren’t. Support can come from family, friends, online or in-person support groups or even a babysitter so you can get some alone time. You may need time to vent. Don’t let it build up just because you don’t want to be known as a “Debbie Downer.” It’s sometimes hard to integrate your struggles into everyday conversations. I totally get it. I go to a therapist regularly so I can talk through it all.
Just because you are physically capable of juggling it all, doesn’t mean you should. It’s not healthy. Try to delegate tasks to other family members and ask advice. People want to help you. It’s your responsibility to tell them HOW.
#5. Accept Your Parents for Who They Are NOW
Sometimes I get so caught up mourning the loss of who my mother once was that I miss out on who my mom is now. Of course it’s natural to grieve, but you also need to accept this new person. This is especially difficult for degenerative diseases as, by nature, your loved one’s needs are constantly changing. You’re constantly needing to reevaluate who they are.
Although my mom has difficulty dressing herself, she also loves my kids fiercely. She may not know why she lives in a memory care facility, but she remembers tiny details of my childhood. Although we aren’t in an ideal situation, I’m a luckier person to have her in my life.
The first thing my mom said to me when she was diagnosed with Huntington’s Disease was that she never wanted her children to have the burden of caregiving. She couldn’t have stressed it more. Even though the disease had already taken pieces of her, she was still our mom at her core. She still put our needs and hopes above her own. She wanted to protect us from the scary reality of Huntington’s Disease.
Huntington’s Disease, also called HD, is a progressive, hereditary brain disorder. There is no cure or proven treatments. The disease often starts as subtle mood swings and progresses to the complete loss of an individual’s ability to walk, think, reason and talk. The other kicker is, as it’s hereditary, the chance of passing on the disease is 50%. My mom remembered the brutal emotional impact of being a caregiver to her own mother (my grandmother) who suffered from HD. It’s hard enough being a caregiver; it’s even harder knowing that every decline in your loved one could easily be a glimpse into your future.
My mom was just 56 when we began looking for memory care facilities. With family spread out around the country, the burden of caregiver was primarily on me. I was just 27, newly married with newborn twin babies. I was also my mom’s Power-of-Attorney; her person; her voice. We had spent the last year or so flailing. She had gone from an apartment to senior housing to traditional assisted living facility within months. Each of the places she lived promised us that they could handle the ups and downs of Huntington’s Disease. Very quickly we realized that she needed more help than we had anticipated.
Memory care facilities seemed scary. The first time I toured my mom’s community, I cried. Hard. It’s hard to accept the idea that your parent will only continue to decline and that a memory care facility may be the appropriate place for them. At a certain point, the real world isn’t appropriate for someone with dementia. It didn’t feel fair for me to try to fit a square peg in a round hole.
To be completely honest, the option of caring for my mom in my own home was never even a consideration. With newborns at home, I was exhausted and barely had a moment to feed myself or go to the bathroom. I was in no place to add another person to the mix. And to top that off, my mom’s initial request for me to continue to live my life still lingered in the back of my head. I knew that’s what she would want.
We have been so happy with our choice to move my mom into a memory care facility. My mom is busy and happy. They go on weekly outings to places that I would never be able to take her to with two babies in tow. They do yoga, take writing classes and do crafts. She’s exposed to so much more than I would be able to give. Every time I visit her, it gets less scary.
Going into a memory care facility with toddlers is a distraction from the darkness of dementia. For both myself and my mom. To my two year olds, they know no different than visiting their Bubbie at her “big house”. My kids get attention as soon as we walk in. They wave and smile to all the residents and staff. They play with the community dogs and run down the hallways. They don’t see that my mom is different from other grandparents. They love her for who she is in this moment.
And, my mom truly benefits from her relationship with my kids. They bring a light into her world. She isn’t the grandmother I always pictured her to be, but she’s able to play the role nonetheless. I am grateful my kids have her in their lives. I am also grateful that they don’t have to witness me bathe my mom or give her her meds.
With all that said, that doesn’t mean I didn’t feel guilty when I drop her off or when my babies are sick so I can’t visit her. There are bad weeks when my mom wants to leave and doesn’t understand why she lives where she lives. But those pass. Like anything, accepting our new reality takes time.
I’m grateful that we were able to find my mom a home that fits her needs. I’m grateful that my relationship with my mom isn’t strained by the day-to-day responsibilities of caregiving. I’m grateful that my kids get to have a sweet relationship with my mom in doses. I’m grateful that I know my mom is safe and secure. Being a caregiver is not easy no matter what your circumstance, but a memory care facility is what keeps my mom happy and healthy and what keeps our family unit moving forward.
Once upon a time I thought that tragedy only happened to people on TV. I think many of us millennials were taught to think that nothing bad could happen to us. We were normal, we all won awards, we were protected from the world. It was all butterflies and rainbows. I don’t fault our parents for treating us that way. Like every parent, they do the best they can.
Before Huntington’s Disease entered my life, my view of people dealing with tragedy was that they were all angelic. They didn’t swear or have bad days. They didn’t have moments of darkness when they just couldn’t stop crying. In the news, these people rose up from shitty situations and became beacons of light in their community. Or maybe they found religion and found their own peace in that.
And so, when my mother was diagnosed with HD, I thought maybe that could be me, too. I thought that maybe I was one of those inspirational people. I read books about religion and finding peace. I even ran a half marathon just to prove that I could. I was stuck in a spiral of how I was supposed to grieve.
Tragedy changes aspects of you. It doesn’t change your core. I’m still snarky and sarcastic. And while I believe I’m a more patient, compassionate person since HD has entered my life, I still get frustrated at slow drivers on the 101 and still love watching trashy reality TV.
It’s okay to be normal. It’s normal for things to be shitty.
I know quoting the movie “Now and Then” does not make me seem intellectual. But truly, the most meaningful quote in my life right now. In an age where we are constantly surrounded by inspirational stories, impossibly perfect Instagram shots and the endless parade people fighting against all odds, I think it’s important to remind ourselves that it’s okay to sometimes wallow in the shittiness of it all.
I first heard of Huntington’s Disease when I was 20 years old. A frantic, hysterical phone call from my mom told me that she was certain that she had an incurable, genetic disorder called HD that involved the slow deterioration of cognitive thinking, muscle coordination and the appearance of behavioral and psychiatric problems. The disease itself is a mutation of a certain gene that can be inherited by a parent. If your parent had HD, you have a 50/50 chance having the mutation. If you do not have the disease, your children or children’s children will never have it either. There is no cure. There are no proven treatments. The disease itself often starts out with subtle mood swings or twitching and progresses to a total loss of independence.
My mom had inherited the mutated gene from her mother who passed before I could remember her. Her brother, my uncle, also inherited the gene and became to experience symptoms 10 years before. His method of coping was ending his life. I had known about the suicide, but not the reasoning.
If you are reading this, you are probably asking yourself why I had never asked about how my grandmother died or why I had never heard any stories about her. Or, further, why I had never asked about the uncle that I had never really known. The answer is that I was a child. And children are selfish. And that’s okay. The secret was something that my parents kept from myself and my younger brother to shield us. The thought of my mother carrying around the secret of the disease that tore her family apart, makes me feel sick.
As she continued to cry through our phone conversation, the full story began to unfold and I understood that she had known for her whole adult life that this may also be the end for her. And, not only was she affected, but also my brother and I had a 50/50 chance of inheriting the gene. There was the other punch in the stomach.
The news itself put me into a fog that I couldn’t escape. I was a junior in college in Upstate New York. I was used to worrying about tests and internships and figuring out what I wanted to be when I grew up. I told only a few close friends and then tried as best as I could to go back to regular life.
A few months later, my parents drove to Mass General to see a specialist. The visit was followed by a happier phone call from my mom telling me that the specialist did a few tests and didn’t see any symptoms present! We were thrilled! I don’t remember the words that were said, but as I could remember it, we were certain that this meant that she didn’t have Huntington’s! And I was free to live my life and so was my brother. And that this scare was over.
Again, if you’re reading this, you’re probably asking yourself why I didn’t ask any questions about the testing itself. Or why I was so certain that this initial visit meant that this horror was over. In all reality, I can’t be sure if I so badly wanted HD to go away, that I created the idea that she didn’t have it or if she was the one who so badly wanted it out of her life that she was the one who was in denial. Truth be told, she didn’t get the genetic test at that visit. Even though, at the time, she was symptom free, that didn’t mean the disease wasn’t in her body.
A few years went by and I moved to Los Angeles to work in the entertainment industry. My life that my parents had fought so hard to give me came back. I bounced from job to job and felt under-appreciated and underpaid and all of the things that you are supposed to feel in your early twenties. I dated unsuccessfully and, when I wasn’t expecting it, fell in love with my now husband.
At the same time, my brother had gone away to college and left my parents alone in the house. The distance between them grew and they realized that, without us kids, they didn’t have much in common anymore. My mother, who had struggled with depression, fell into a deeper depression and withdrew from society. She had trouble sleeping. She became obsessive with researching politics and green lifestyles and hid herself in the internet. She had difficulty focusing on tasks, planning, organizing, prioritizing. She became impulsive and lashed out at the world through email. To her, everyone was out to get her and they were all in the wrong. And then, when confronted by my father, she decided that was the last straw and left him.
She landed at LAX the next day and in the following years she bounced from Arizona to Hawaii to Orange County and, finally, to San Diego. In my head, I rationalized her erratic behavior to that of a midlife crisis. After all, she spent her teenage years taking care of her own mother who was dying of HD. She never got the college experience or studied abroad or had the freedom like my brother and I did. She must have felt trapped. I thought that maybe this was her chance to explore and, as many people do when they go through a divorce, be selfish.
When she moved to Southern California, we got together every month or so. She had just come from living in Hawaii where she was eating healthy and exercising and had a glow that only Hawaii can give you. She looked great. Some visits she would be the same loving mom that I grew up with and some she was a different person.
In 2011, S and I got engaged and life turned upside-down as it does when you are planning a wedding. Engagement parties came and went. As I watched my mom interact with my new family and friends, it became more and more apparent that something was very wrong. She lost her balance sometimes, she walked with wide, awkward steps and had difficulty with eye contact. She had trouble with conversation. On the other hand, my mom has always been a bit shy around new people. I was too preoccupied (and deep down probably too scared) to admit out loud that anything was wrong. It was easier to be wrapped up in my own happiness and pretend that she was just a little clumsy.
The months leading up to our big New England island wedding were stressful. My mom seemed disinterested and distracted. Most visits began with tears because I got agitated when she was late. She would tell me she got lost or lost track of time and would tell me I was being too judgmental. I would tell her that I felt abandoned and felt she didn’t care about anyone but herself. And then she would cry because she loved me and my brother more than anything and couldn’t stand the thought that she was hurting us. We’d make up. And then it would start all over again.
Our wedding day came in July of 2012. Even though it was the hottest and most humid day of the summer, it was absolutely perfect. My husband is amazing and supportive and truly, my best friend. And I couldn’t be happier. The weekend was the first time since my parents split up that they saw each other. I will never be able to thank them enough for acting cordial and putting my feelings ahead of their own. They even held hands as they exited the ceremony (I never asked them to do that). Not only that, but my talented, incredible brother had graduated from an Ivy League school the month prior and rejected an incredible opportunity to teach in Korea in order to make sure he could be there for me on my wedding day. I will never feel more loved than I did then.
After the wedding, we adopted a little doggy and unpacked all of our gifts and life went back to normal. At the same time, my mom started sending manic emails accusing my dad and her family of horrific things. As we settled back in, the feeling that things didn’t seem right came back. The turning point was when one of my cousins called me concerned about my mom and brought up the possibility of Huntington’s Disease. I, after so many years, still believed the story that I had told myself that she was tested and she didn’t have the symptoms. But, in the days since that conversation, I looked closer at the symptoms of HD and, each day, saw how closely they aligned with the ways that my mom had changed in the last few years.
And then it clicked and I lost it.
Asking my mom to get the test was one of the scariest conversations I ever had to have. I told her that we had babies on our mind and I wanted to be sure that we were in the clear before we brought any at-risk babies into this world. That was true, but only part of the story. She was mature and understanding and immediately agreed to take the test. After she so easily agreed, I started doubting myself again. She seemed so rational and so sure she didn’t have HD that I started to believe it myself.
We scheduled the appointment and braced ourselves.