My mother was diagnosed with dementia six years ago and I had to go through one of the hardest decisions a child will ever have to make for their parent. After much consideration, I had to make arrangements to have her transition from her beloved Brooklyn home into an assisted living facility in New Jersey. This is a decision that many people eventually have to make. Statistics show that 1 in 3 seniors die with dementia (more than breast and prostate cancer combined!). For many of us, it is not a question of “if,” it is a question of “when.” So, what do you do when your parent becomes the child?
My mother is a first-generation Italian American, making Italian culture ubiquitous throughout my upbringing. I come from a culture where you take care of your people. When she was well, I talked to her every day. I would go to her for advice on marriage and motherhood. She was my rock and I looked up to her my whole life. I learned all the important traditions from her, such as the importance of sitting down together as a family for meals and, as a mom, being the bond that keeps everyone together. So, when it turned out she couldn’t take care of herself anymore, I was completely lost. I wish someone had given me advice, but instead I was fumbling in the dark. If you’re going through the same thing I did, which, statistically speaking, is a very real possibility, here is what I wish someone had told me.
Don’t be in denial
It’s important to look out for the early warning signs. The more you are ready to accept what is happening, the more likely you will be to respond in the right way. When you start seeing early signs of dementia, it’s not going to get better. It will go faster than you think. So be ready to take the necessary action for the good of your parent.
My mother would become forgetful. She would repeat herself. She had issues with cleanliness, which is a tell-tale sign of the onset of dementia. People with dementia don’t like to take showers. When we went to visit her, she had no food, or her food was rotting. She was eating cookies for dinner. Her driving became a problem and we had to take her license away.
The moment I realized something finally had to be done was when I visited her and found her face-planted on the table in the middle of the day. She had mixed up her medications, combining strong painkillers and sleeping pills. She had become a danger to herself, and it became clear that she needed round-the-clock care.
Don’t feel guilty
It became necessary to make arrangements for her to live in an assisted living facility where she would be looked after. My siblings lived far away, and I couldn’t take care of her myself. I was battling breast cancer at the time, which, on top of the emotional toll my mother’s situation was taking on me, made for a toxic combination. I hardly ate and I lost 20 pounds from the stress.
With the help of a cousin, I found a perfect home for my mother, but I couldn’t help feeling guilty for not taking her in myself. Coming from an Italian American family, I grew up with the mindset where you take care of your own and if you don’t, that is a moral failing. My guilt was exacerbated by the intense pushback that my mother was giving against going into an assisted living facility. On move-in day, she caused a scene that lasted over an hour. During her transition, the professionals told me that they had never seen anybody give them such a hard time.
I felt like the worst daughter in the world for relinquishing the care of my elderly mother to a bunch of strangers. But the truth is that in today’s modern world, we are often ill-equipped to care for the elderly and we have teams of professionals who can do it better than we ever could. My situation at the time was such that if I didn’t put “me” first and teach myself to emotionally detach from this incredibly hard situation, I would have fallen apart. It is a difficult decision to make but a necessary one.
You don’t have to go through this alone
We are always faced with a range of complex emotions when we come to terms with the fact that the person who raised us, the person we looked up to, is now our responsibility. Having the roles reversed, the parent becoming the child, is never easy. Realizing that this person is not going to be in a position to guide us and help us make important life decisions can feel incredibly lonely.
I am lucky that I had so much support around me at that time, from amazing friends to loving family, from my two wonderful sons to my soulmate and husband. But friends and family don’t always know what it’s like to go through something like this. I was still struggling with immense amounts of anxiety, and my real recovery didn’t start until I started seeing a therapist. I was able to talk through all the turmoil that was going on inside of me, and I was able to finally make sense of it.
So don’t think you have to do this all yourself. Build yourself a support system that will help you through the dark times and point you towards the light you so desperately need and deserve.
It gets better
When you’re in the middle of the confusion, it’s hard to believe, but let me tell you: it does eventually get better. When my mom first moved into her new facility, she would call me, often in the middle of the night, telling me that she had to go home. She still thought she had a home to go back to in Brooklyn when in fact that home had to be sold to pay for her assisted living facility.
These calls were frequent, and my heart broke every time she asked to go home. I would use deflection as I did with my children when they were young, telling her, “I’m tired, let’s talk about it tomorrow.” She would let it go, and then she would forget and bring it up again. But little by little, her pleas became more and more infrequent. Eventually, they stopped altogether.
And then one day when I was visiting her, she pointed to another resident and said to me, “She’s always complaining about this place. I don’t know why she’s so unhappy. I like it here—they serve nice meals, I have a three-room apartment, and they keep us busy with activities.” And that’s when it hit me: she was finally settling in. She was finally happy here. I cried that day, in that moment, as I did many times during this transition. But, instead of crying because I was sad, I cried tears of joy. I hadn’t sold my mom out. I had done the right thing.