Novelist | Singer
I have discovered in life that when you are in difficulty, there are all kinds of blessings that pop up from nowhere to provide respite. You simply have to anticipate them and recognize them. There were facts and fears coursing through my head the first days that Mom was living with us. I had never done this – we had never done this, neither my husband nor I. What would we need?
Soon after we moved her into our house in September, I discovered November is National Caregiver’s Month. I didn’t know that until I made a call to Senior Care in Gloucester that first week, when I was still terrified with the knowledge that my mother was living under our roof. The rep from Senior Care was . . . fabulous. She spent four hours with me and listened to all my fears and inquiries, because of course, she knew exactly what I was talking about. This was not just a commiserating friend or relative offering input, but a professional sharing advice surrounding a challenging situation. She booked me immediately into a Caregivers’ Conference in November, and even paid the registration fee. She enrolled me in another workshop for caregivers that ran for four weeks. She was patient and understanding, the perfect advisor in this traumatic chapter of our lives.
I knew I needed help. I had Al, of course, but I was my mother’s child, her Health Care Proxy and Power of Attorney. I assumed from the outset that it was my responsibility to care for her. When I was available, the onus was mine. Al became the watchdog in my absence, quite willingly and without complaint. In a later chapter, I will share his commitment to my mother and what a fabulous job he did taking care of her.
The conference and workshops were as resuscitating as oxygen. By the time they rolled around, we had had Mom in the house about a month, and I was about to commit myself. There are many difficult aspects of Alzheimer’s, but the worst for me was the interminable repetition. I learned later that this can indicate the victim’s recognition of their condition, so they constantly check in. Whatever it was, it drove me to drink—literally. Being a little inebriated added humor to our circumstances, but always made the next day much less fun.
Every conference participant was a caretaker. Even without speaking to anyone, I could feel the weight of responsibility entwined in love swirling around the room. The keynote speaker was unbelievable. We laughed our guts out at her accounts with her grandmother; entering and leaving the room repeatedly to hear the same excited, “How is my best girl today?!” during an especially rough work day. Sharing a belly laugh with total strangers about a subject so painful was cathartic, true, but I needed tools, and she fulfilled that need as well.
Tools are essential to everyone, every day. Tools give us strength, resilience and a sense of forward momentum. But rarely are tools brilliant beyond description—like this speaker’s. This tool was especially dazzling. She said, “Challenge yourself to answer the same questions with new answers every time. For example, when they say, ‘What time is it?’ you are allowed to tell the time only once. The next time, you must provide a different answer, like, ‘It’s time for tea, don’t you think?’ The reaction to that question will certainly be, “Okay!” In that way, you domino them away from the time question, and soon they forget to ask.
The reason it works is because our “logical” brains (okay, maybe not mine) are hard-wired with reason and judgment. We simply can’t escape that basic function, so, regardless of our intentions or level of patience, the repeated questions make us insane. The resulting vicious circle is punishing:
Mom repeats something for the 5th time, and finally daughter snaps at her, albeit gently. Mom looks hurt and says something, “OK then, I just wanted to know!” Daughter feels guilty until Mom starts in again repeating something else. Wash, rinse, repeat.
Believe me, it’s not fun. It’s not even funny. And it’s constant. I was also in chronic pain from my back surgery. It was truly the hardest time of my life, but I kept trying to remind myself that it was such a good thing I was doing and that I would have no regrets at some point in the future . . . but for the present, it was our grim reality.
Mom is no longer living with us, in fact, at this writing, it’s been almost three years. I have nearly erased the numbing feelings of frustration from my mind. I look back on those days with warm memories and try to remember the funny and sweet. I couldn’t have done it without my husband, Al. What a trooper. Not many guys would do what he did for me and my Mom. I don’t know what I would’ve done without him – most probably I wouldn’t have taken my Mom to live with me. As it was, we settled into a tag-team routine, and we never talked to each other or spent any time alone together during her stay.
If you find yourself faced with the challenge of Alzheimer’s, be assured of one thing – you can’t do it alone. You shouldn’t even try. Reach out. It’s amazing how many organizations and agencies there are out there to help you through what has to be one of life’s most challenging situations. Be mindful of your spouse or your children. Alzheimer’s is truly baffling. It makes no sense, and can be crippling to emotions and relationships.
Don’t get me wrong; I have no regrets. I’m so very happy that I took Mom in. It became one of the most important times of my life. I got to know her as the person she was before she met my Dad. I’m also very happy she now lives in a place where trained professionals are looking after her and keeping her safe. I miss her, every day. I miss the person she used to be before the Alzheimer’s, but I love the person she is.
Barb, this is fantastic!! Strong entry and many of the challenges that you so boldly described with Alzheimer’s are ABSOLUTELY TRUE. Many people will appreciate that you are sharing your story.Bravo! xo
You present a very nice balance of the the feelings and experiences associated with the situation: fearful, frustrating, touching, thoughtful, sad, funny, with the love and gratitude coming through too.
Thanks Stacey. It feels good to hear that.