[social] [social_icon link="https://twitter.com/MyAlzStory" target="_blank" title="Twitter" type="twitter" /] [social_icon link="https://www.facebook.com/MyAlzheimersStory" title="Facebook" type="facebook" /] [social_icon link="https://ca.linkedin.com/in/susan-macaulay-a500982" title="LinkedIn" type="linkedin" /] [social_icon link="https://www.pinterest.com/shequotes/" title="Pinterest" type="pinterest" /] [social_icon link="http://myalzheimersstory.com/?feed=rss " title="RSS" type="rss" /] [/social]

daughters, dementia and drugs: finding good on the road to forgiveness

4

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.

Clare loved floppy hats. Lisa held onto hers on this windy day at the beach.

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.

Subscribe to my updates here.

4 Comments

  1. norman duncan on

    I cannot help but cry along with those who have read this. I have been fighting morphine for too many years to remember. My battle with our Government is their lack of requiring aggressive training requirement for med schools to make every GP AD friendly. I do not want to use the word murder but in this case the daughter should have gone to court made a strong case against her father. Love and helping a wife is misguided if the spouse loses his families confidence. When my wife passed we were married 73 years and my daughter an OTR was by my side as much as possible and I forbid the use of morphine till the very end. In my professional career I have visited many nursing homes with patients limp in their wheel chairs doped beyond imagination abandoned by family who have given up visiting for lack of cognizance.

    • Norman, having been through family struggles like the one Lisa experienced, I can tell you it is devastating, demoralizing, and soul destroying. I went to court, and lost. What happens in court may be legal (and sometimes not), but in many cases I feel it certainly is not just. It surely was not in my case. I don’t sit in judgment of Lisa, she did the best that she could and unfortunately was powerless to change things. I know exactly what that feels like.

  2. I love how Lisa is sharing her story honestly but with a great deal of understanding for her father. That generation was taught that doctors, lawyers and other professionals were “gods” in their own rights, that they knew everything and that they had some sort of magic wand. Having been a medical writer for most of my career, I have talked to enough doctors and specialists to bust that myth wide open! They are just human beings, who have access to limited information themselves, and are struggling to keep up with massive changes in the medical world. Some of them are good, most are not, because the educational system that spits out doctors doesn’t even address nutrition and exercise. Again, a revolution or an evolution is required. The ones with an ingrained sense of self-importance are the worst; no one can argue with them and they are not even OPEN to listening. It’s sad that our parents bought into this deception, enough to make them not listen to a daughter or a friend. We are all in this together, and helping each other is the only way forward. Good post, Amazing Susan. Keep your light shining bright….

    • “They are just human beings, who have access to limited information themselves, and are struggling to keep up with massive changes in the medical world. Some of them are good, most are not, because the educational system that spits out doctors doesn’t even address nutrition and exercise.”

      Lorrie, I couldn’t agree more. Everyone is human. Everyone can make mistakes – doctors just as much as anyone else. No one should be on a pedestal. Too far to fall. What really pisses me off though is the arrogance. I can forgive most things, but two things I cannot: serial lying and arrogance.

Leave A Reply