Lisa had seen the face of Alzheimer disease before. But she hadn’t expected her mom Clare to get it, and certainly not at such a young age.
When I read Lisa’s Facebook account of her care partnering struggles, particularly with respect to the conflicts around medicating Clare with antipsychotic drugs, it resonated deeply with me. I asked Lisa if I might share what she had written on MyAlzheimersStory.com. She generously agreed.
Here’s Lisa and Clare’s story as told by Lisa:
My mom died of Alzheimer disease in 2016. Sometimes, I still find myself trying to accept she’s really gone.
Mom was diagnosed in 2008, at age 62. The signs were there earlier; we just didn’t recognize them. My dad did the best he could to take care of Mom, whom he loved with all his heart for 51 years. But he also did many things I didn’t agree with along the way. My father was “in charge” of Mom’s care. That’s the way it was. The decisions were his to make, and my mom’s and mine to live with. It wasn’t easy.
Dad allowed doctors to put Mom on more drugs than I can name. At various times, sometimes at the same time, she was taking Depakote and Lamictal (for suspected seizures), Seroquel and Ativan (for anxiety), Haldol (for hallucinations), Imdoor and Ranexa (for her heart), and Aspirin (also for her heart). This seemed to me an insane amount of medication. Some are contraindicated when taken together. Some, such as Seroquel and Haldol are “black boxed” for elderly people who live with dementia.
Dad placed Mom in assisted living, and later a nursing home. When I offered different options, he said no. My dad loved my mom; he believed he was doing the right thing. I loved her too, and over and over I saw what the wrong meds and/or the wrong doses could do.
In the summer of 2015, for example, the director at the assisted living told Dad that Mom was “very anxious.” As a result, Dad allowed Mom’s neurologist to double the dose of Seroquel she was on. Mom’s demeanour changed almost overnight, and not for the better: she started banging on other residents’ doors and screaming blue murder. My mother was the kindest, calmest person you could ever meet. That was NOT my mom.
She also fell twice, and was sent to hospital. No one saw her fall and therefore the cause of her falls was not known. Nevertheless, a neurologist put her on Depakote and Lamictal to stop seizures she may or may not have been having. The neurologist was well respected–chief of neurology at one of the best hospitals in the state. But he was wrong to put my mother on those drugs.
When the assisted living facility refused to keep her because of the aggressive behaviour, which seemed to me to be so obviously caused by the Seroquel, Dad placed her in a psychiatric facility for several months in the fall of 2015. The psychiatrists there confirmed what I instinctively knew: she was over medicated. As they weaned her off the antipsychotics, she improved dramatically. Once “detoxed,” she was fine.
Nevertheless, Dad and the neurologist continued to believe more meds were required. This time, instead of Seroquel it was Haldol, plus Depakote and a host of others. In a sense, they worked. Mom was no longer “aggressive.” On the other hand, she was lifeless. A zombie. I still struggle with that because I couldn’t stop it. In my heart, I knew Mom didn’t need those drugs. But I was powerless to get her off them. My Dad and I argued daily over the medication issue. In the end, it was his choice. He was the one in control of her care.
One day when I went to visit Mom in early March 2016, I found her sitting in a wheelchair, so overmedicated she could not stand. It was like she was suddenly paralyzed from the waist down. My Dad was out of town and I was free to act as I wished. I immediately took her to the hospital. During the week she was there, we had lots of time alone. It was an extraordinary opportunity to love, heal and forgive. In the hospital, they took her off the drugs. She became her old self; the paralysis disappeared.
But my dad didn’t see that it was the drugs that caused her to be so poorly. He blamed the Alzheimer. So did the expensive and respected neurologist I would have fired on the spot. My dad didn’t see any of her falls along the way as the fault of the aides or the meds either. He blamed Alzheimer for the falls too. I would have sued for neglect and wrongful death. Dad was unable to see what I saw. He saw things differently. He honestly thought Mom was happier on those medications and in those facilities. I couldn’t stop him from keeping Mom on the drugs, and I couldn’t bring her home to be with me.
When Mom was discharged from the hospital that last time, she went back to the nursing home. Over the next three weeks, she cried every day. It was gut wrenching to see her so miserable. I sang to her, hugged her and cherished her with every ounce of love and compassion I could find within. I did whatever I could to make her laugh and distract her from the hell she was living. I found ways celebrate the good in every minute we were together. That’s what she would have wanted. That’s what I did.
Mom died on April 12, 2016. I have grieved and missed her profoundly ever since. I still look for the good, and celebrate it wherever I find it. To honour her. Because that’s what she would have done. That’s what she would have wanted.
I love you always Mom.
Despite her grief, Lisa is beginning to come to terms with the loss of her mother. She says her father made the care choices he did out of his love for Clare, and Lisa has found forgiveness. Although our stories are similar, the aftermath of my story is markedly different. I wonder if it’s easier to forgive the well intentioned who act out of love and compassion than it is to forgive those driven by greed, self-interest, convenience and control. Maybe one day, as Lisa has, I will find my way forgiveness too. Sadly, I’m not nearly there yet.