When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends?
My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her separation from my father. We both started noticing drastic changes in her attention to detail, motivation to work, cleanliness of her home, etc. and were concerned for her well-being. It wasn’t until she started not answering her phone that we insisted on a change. She simply didn’t want to speak to anyone, because she herself couldn’t understand the changes going on with her mentally, and wouldn’t know how to explain herself. For outsiders, it looked like disinterest, depression and laziness. For myself and my father, we knew something larger was the problem.
What is one thing you learned about yourself as a caregiver for your mom?
Caring for my mom has taught me so much – and hindsight is 20/20. However, I have found that my resiliency, despite challenging situations, is far stronger than I have ever given myself credit for. When people ask ‘how did you do it?’ I simply reply with the most honest answer I can – There was no other option.
How long and how often were you caring for your mom?
When my mother was diagnosed, the legal implications of her inability to care for herself came to light. Since her and my father were divorced, the State of New Hampshire would have taken control over her finances, healthcare decisions, etc., had there been no one else deemed a responsible party. And at age 20, I was not the ideal candidate. However the thought of the alternative was not something I could bear. Court appointments and legal requests for guardianship took months. When I was finally named her legal guardian, I took on a larger role in her care than I had expected (but was committed to fulfilling as long as I was needed). Additionally, I was her secondary caretaker, traveling from Boston to New Hampshire every weekend on Saturday mornings and returning back to the city on Sunday nights. I cooked, grocery shopped, cleaned the house, did laundry, refilled her medications, paid bills and made sure the caregiver schedule for the following week was set. It was a routine that was well-oiled, but didn’t leave a ton time for the typical weekend ‘R&R.’
How did you balance being a caregiver for your mom with other obligations (work, relationships, planning your wedding, etc.?)
At the time of my mom’s diagnosis and while we moved her back into the home I grew up in, I was an undergraduate at Northeastern University. I would travel back and forth from the city to the coast of New Hampshire to be with her and relieve my father and the other caregivers each weekend. Meanwhile, I was a live-in nanny for a family of three, whom I would care for during the week when I wasn’t at class. I also was just starting a new relationship with my now husband. For the next few years, that was my life. I spent more time in my car than I did in my bed. And while my friends were partying each weekend, I just simply wasn’t around. My priorities were so far removed from those of my age, and I was okay with that. After I graduated and started working full-time, her disease was quickly progressing. Instead of spending Friday nights with my boyfriend (at the time), he would come home with me and help. Once we were engaged, we knew we wanted to move quickly in hopes that she could see me get married. That was the light at the end of the tunnel.
Throughout your mom’s illness, what moment stands out to you most?
A goal that was shared by my father and I was singular and authentic – we wanted to keep mom at home for as long as we were financially and physically able to. Luckily, we spent her money right and found so many helpful resources that were available to us – like the Rockingham VNA and Hospice. Despite her illness, my mom was never without someone by her side that truly loved her – a luxury that many others in a similar situation aren’t privy to. We are so grateful we were able to achieve that goal and to care for my mother at home, even until the day she passed. Selfishly, the moment I remember most vividly in my mind was having her at my wedding, just a month and a half before she passed away. That memory stays with me, and reminds me of something truly magical, even on my most difficult days.
What advice would you give to other caregivers trying to take care of a parent or loved one?
Don’t try to do it all on your own. You will reach a breaking point, and you won’t have the energy to pull yourself back together. Ask friends and other family for help. Have someone come over to relieve you for a few hours so you can shower without worrying the house will catch on fire (yes, I’m not kidding – things like this fall by the wayside). Be honest with others about your situation, because more often than not, they would love nothing more than to help.
If you’re caring for someone living with a chronic condition, you can connect with others who understand what you’re going through on PatientsLikeMe. You can also connect with others in the growing Alzheimer’s community on PatientsLikeMe.
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