Dear Family Advisor
My fiance broke off our engagement because he said caring for my mom has taken over my life.
Last updated:September 01, 2008
Caregiving has destroyed my personal life! I know that sounds dramatic, but last year my mother, who is 69, was diagnosed with frontotemporal dementia, a "reverse Alzheimer's" that takes away behavioral and social skills and later attacks the memory.
I'm her only child and she was a single mom, so I feel like I have to care for her. I started making frequent trips from the West Coast to Washington, D.C., as it took a while to get a proper diagnosis. Finally, I got a job and moved to D.C. My fiancé agreed to move as well, but then he said that my mother had taken over my life and he broke off the engagement.
I've had to place my mom into a care facility. I'm 39 years old and am now living in my mother's old apartment, working at a job that pays less than the one I left. I feel betrayed in every way. I don't even know who I am anymore. I don't know what do.
I know I'm whining, and I really do care for my mother dearly, but this doesn't seem fair. How can I have a relationship with her when she doesn't know me half the time? And although it sounds selfish, how do I care for my mom and have my own life?
You have every right to pitch a fit and scream, "Life isn't fair!" Because it isn't -- not for you or your mom. You're a young caregiver, but know that you're not alone. There are millions of others who've been thrust into caregiving roles at a young age for a variety of reasons: mental illness, addiction, cancer, multiple sclerosis, and other diseases that can strike people at any point.
It's important to honor your feelings of disappointment, bewilderment, and betrayal (by your fiancé and life). But you can't stay there. Throw yourself a grand pity party and then move on. You have to. Your life is far from over, and you have no idea what good things will come your way. Sometimes the very thing that seems like a roadblock can end up leading to a new path.
First, let's talk about your relationship with your mom, because I think your feelings may have as much to do with loss as with betrayal. I know she doesn't necessarily "feel" like your mom any more. Losing parents to dementia can be as wrenching and sad as losing them to death. And you need to grieve this loss as you would a death. I know of a couple who held a "ceremony" for their son who was in a serious motorcycle accident. They gathered a few close friends and relatives, brought out pictures of him, and said goodbye to him. He wasn't dead. He had debilitating brain injuries. They did this because, his mother said, "I needed to let go of the son I had in order to embrace the son I have."
I know that it's painful to see your mom this way. My mother had Alzheimer's, too, and I mourned losing the person I could turn to for advice and comfort. You'll have good days and not-so-good days. You'll have times when you visit her, check on her care, and walk out knowing everything's OK. And you'll have other days when you feel as if you're carrying a cement block in your chest.
But this is about your personal integrity. She needs you now, and if you're the only person she has to look out for her best interests, then I encourage you to accept this role. That doesn't mean you'll always need to live in the same city, but it does mean you need to make sure she's getting good care. Most people who are abused or neglected in care facilities are those who have no advocates.
You don't need to visit her every day or stay a long time when you do, but you need to make your presence known to the staff in order to stay on top of her care. Be good to them: Talk to them and get to know the people on different shifts. Your mother may not even know you're there, but the staff will know that she has someone looking out for her. Love will show in your watchful eye, patience, and consistency as a daughter.
As for your fiancé breaking off your engagement, it may be a blessing. Being married isn't just about two people -- it includes many people and the challenges that life throws at you. The devotion you have shown your mom proves that you understand love and commitment. You want a partner who values that and will stand by you through all that life brings. This isn't your only chance at love.
Now, about you: For the last year, your life has revolved around your mother's changing needs. You left your job and home to move across the country to take care of her! No wonder you feel exhausted and adrift. But caregiving for her doesn't need to be the center of your life anymore, especially now that her daily needs are being taken care of in her new residence. You need to rebuild your life.
Has caregiving taken a toll on your body? Think about signing up for yoga or joining a gym. You may need to do something outside of your comfort zone to shake things up a little. Go to a rock-climbing gym, volunteer to teach English as a second language at a community center, join a book club -- anything that makes your life feel like your life, so that, as writer Joseph Campbell said, "Joy will burn out the pain."
This is also a good time to make a life plan. Where do you want to be, say, three years from now? Where would you like to work? Would you like to travel? Do you want to start dating again soon? Because your life was thrown off track by your move and you may not yet have close friends in D.C. to talk to, you might consider hiring a life coach. Life coaches can help you focus on the big picture and weave together different aspects of your life, such as work, health, caring for your mom, and relationships. They can also give you some extra moral support.
Even if you feel tied to D.C. for the time being, you still have choices. If you don't like your job, start looking for another one -- there are many interesting jobs in Washington, and the capital may actually offer better career opportunities for you than the West Coast. Why don't you move out of your mom's apartment? It may take time or a better-paying job, but you can start getting things in motion to make that happen. You probably haven't even had a chance to get to know the city and surrounding areas. When you do, you might find it liberating to build a new life in a new place. You get to drop some of that old baggage. On the other hand, if you really want to be on the West Coast, consider moving your mother to a care facility there.
Your mom didn't mean for this to happen; she wouldn't have wanted her health problems to sideswipe your life. And they don't have to. Refuse to see this as a tragedy. Don't let that become the story you tell yourself and others about why your life didn't go the way you planned. Start working toward integrating your mom's care into the larger life you imagine for yourself.
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