Do you remember the first time you cried at a movie? I’ll never forget recently seeing my toddler become hysterical while watching, The Lion King. He looked at me with disbelief in his teary eyes. “Simba’s dad died!?” He couldn’t believe it and didn’t understand such a loss.
Death has been a topic of conversation this year, following the recent death of our beloved cat, and the reality learned at age three that his Pop-Pop, my dad, is losing his memory to Alzheimer’s Disease. Like my son, I have been mourning my dad. Most of all, I am mourning this adult stage in my life, before I was thrown into this unrehearsed role as caregiver for my parents.
The Dreaded Role Reversal
For some background, my parents moved to Charleston to be closer to me, their only child, about five years ago. It started out promising. After 20 years apart, we were together again in the same city. I learned that my dad, 72, was diagnosed with Alzheimer’s while pregnant with my first son, almost four years ago.
Before I could even begin to grieve the loss of my dad and this new diagnosis, I was directly hit with the shock, anger, and resentment of this obligatory role.
As the roles reverse it creates a lot of tension, as you are trying to manage your different identity. For those with loved ones with Alzheimer’s, you’re grieving their loss while they are still alive. Nancy Reagan coined the term, “the long, long goodbye” to describe the heartache of this depressing disease. When our parents lose their role as parental figure, they become our responsibility.
My dad was robbed of his ability to parent, I was robbed years of his fatherly support, and my kids were robbed of memories with their grandpa.
I Want To Be Mothered
There is something about becoming a mother, and longing to be mothered. I was already susceptible to compassion fatigue as an empath and therapist, but my exhaustion hit an all-time high after the birth of my firstborn. Though I am fortunate to have both my parents alive for some emotional support, I feel as though I am parenting on both ends. For many of us in the sandwich generation, we are both raising children of our own, all the while, caring for our aging parents. According to Sara Perry, Director of Respite Care Charleston, which is a nonprofit that offers Dementia day-care programs and caregiver support groups, 24% of Dementia caregivers are also caring for someone under the age of 18.
A Cry For Help. No Planning = More Work For You
It started with money. My parents used to be remotely stable, but they didn’t manage or plan well around their retirement. My dad had managed all the bills up until he couldn’t. My mom did her very best but didn’t want to worry us, so never said anything (she’s the queen ostrich). It’s humbling for many parents to ask for help from their children. That said, direct communication and a warning would have been helpful in saving us the financial and emotional hardship. We ended up having to bail them out of bills, late fees and began to manage their finances, which at this point, was mostly a fixed-income.
I knew this was going to be a long road and a heavy burden to carry. I was feeling like I had two other dependents, toddling around with no plan in sight. But, there was no way I was going to do this alone. I social-worked that mess, which means, I set boundaries. As a social worker myself, my recommendation is to delegate as much as you can.
Seek Outside Help
My dad’s siblings turned a blind eye, so I fell back on whatever social services I could count on. One desperate phone call led to another resource and step. Origins were able to take on managing their finances and bills as an appointed conservator. I outreached the Jewish Federation of Charleston to get connected with their social worker, who offered support in breaking down the steps. Trident Area Agency on Aging and A Place for Mom provided other resources.
There are many organizations out there, but they are not as connected as they should be, which can make it confusing. Going to a support group really helped. I was the youngest caregiver, which was hard for me, but the grief is universal. I was able to hear other caregivers’ perspectives, take notes, and follow recommendations. The takeaway is, you are not alone and don’t have to start from scratch. You don’t have time for that!
Breaking It Down Into Steps: Daily, Weekly, and Monthly Goals
It’s a maze of steps and red tape, but I wrote things down and created a list to check off each week with a new set of goals and timelines. We met with a pro-bono lawyer for assistance with basic wills and help with power of attorney. From there, we learned that we needed to see a specialized lawyer for estate planning, elder-care trusts, and help with long-term care planning.
Long-term Care
While pregnant with my second child, I had the overwhelming tasks of selling our house, buying a home and moving with my family, all in the while, working full-time and advocating for my dad’s Medicaid. This was the only way he could afford going to a nursing home to get the long-term care he needed. My mom was very overwhelmed and not able to safely care for him. Medicaid took almost two years to plan for. They require a lot of documentation and proof of income. If this is the route you and your family are needing to take, I would start sooner than later.
It was a mess to navigate the healthcare system. I learned, unless your parents plan ahead and have a solid long-term health insurance plan or enough savings, they will be like my parents, living frugally off of social security and unable to afford around-the-clock in-home nursing support (insurance doesn’t cover it).
After dad was approved Medicaid, we moved him into a nursing home. I was just two months postpartum. It was one of the saddest moments of my life. We then had to help and encourage my mom to sell their condo (she couldn’t afford it on her own income). She was eligible for subsidized senior housing. She was initially resistant to move, but once she understood that it was either that or moving in with us, she quickly agreed. Thank God! Recommendation: Explain the facts and provide data. Express your short-term and long-term concerns. A neutral person like a case manager or trusted expert, like a lawyer, can also help as a buffer.
A Moment of Reprieve
Fortunately, now with an almost-four-year-old and four-month-old, I am in the clear. Although I am grieving, the brunt of the logistical side of my caregiving role is complete, or at least at a standstill. My dad is safely in a nursing home with a memory care unit. My mom is in her independent housing and living affordably on money that will hopefully last for her whole life.
Looking Back…
No matter how much we plan, it’s inevitable that we will all need help as we age. Whether physically caring, financially, or the emotional burden, you will end up caring in some capacity. I recommend having the conversation now about how your parents envision their older age. Set up and plan their will, power-of attorney, advanced directives, and estate planning. We are uncomfortable with these tough conversations and try to avoid them. However, it takes the burden off the caregiver and control back on the parent.
Self-care
I always fall back on the oxygen mask metaphor. You need to put your mask on first before you can help your loved ones with their own. I have learned to not identify or take on any guilt. Instead, I am sorry for this situation that is outside of my control. I affirm that I am doing the best I can for my parents. It’s enough. I remind myself that dad would want me to focus on myself and my family.
My dad cried the other day while holding our baby. He has my dad’s middle name in his honor. Dad’s already forgotten that. I try to model the importance of caregiving to my eldest son. He knows the book, “Love you forever” which he says is his “favorite.” He knows it’s the sweet, sad book that makes mommy cry. After reading it one night, he looked at me and said, “Mommy, I will take care of you when you’re old.”