My Journey With Evelyn

I lost my mom, Evelyn, to Alzheimer’s and dementia on August 31, 2022, at age 94.

Even though I know she is at peace, I still reflect daily on the entire experience, the trauma, our relationship, and attaining my own sense of peace. I share my journey with the hope that it can help even one person cope with their own journey, because that is truly helping someone in need.

When my mom was 89, having never been sick a day in her life, she fell and broke her hip. I took her in to live with me because I knew she could not and should not be alone. She recuperated faster than someone my age ever could. Before long, she was zipping up the stairs faster than I was. She had a fighter’s spirit, and soon physical therapy was no longer needed.

My mom insisted on living on her own, but it was unrealistic. Her neighbors were her friends, and it was not their responsibility to look after her. It was mine. My relationship with my mom growing up was not great. We butted heads about pretty much everything. I was quite vocal with my thoughts and opinions, which did not bode well with my mom.

My dad, God rest his soul, was truly the best person I have ever known. He was a peacemaker. To this day, I do not know how he did it. My oldest brother, Lance, passed in 2018. We were great friends. Not a day goes by that I do not think of my dad and brother. My brother Bill, who was my mom’s favorite, is thankfully alive and well, living with his family.

As it happens, caring for a parent typically falls upon one person, the daughter. So I did what was right, always with my mom’s best interest at heart.

Reluctantly, my mom lived with my family for more than three years. The first year was okay, though there is a huge level of responsibility in having anyone live with you.

As we entered the second year, I noticed changes in her behavior that were very concerning. Sundown syndrome began. At first, I did not recognize it because she had always gone to bed late and slept in. I remember labeling the time that followed a “roller coaster.” Since I hate roller coasters, I found the name very fitting. Some days brought scary turns, while others were terrifying.

I recall waking at 2 a.m. to my mom staring at me in the hallway outside my bedroom. At first, she would let me bring her back to her room to sleep. Before long, it got worse.

I called her cardiologist, her only doctor, and asked him for guidance. Given her age, now 92, he advised that she was showing signs of Alzheimer’s and dementia. After speaking with a colleague, he prescribed Aricept to help with memory loss, Depakote as a mood stabilizer, and Ativan to calm her nerves. Since my mom had never taken medication, she was very reluctant. Her doctor recommended that I tell her it was for her arthritis.

Eventually she took it, but medication takes time to work and show any improvement. In the end, the medication did not help at all. Soon she was standing over my bed, staring at me and saying, “I didn’t know where you were.” I almost had a heart attack and replied, “Where else would I be at 2 a.m.? I have to be up for work at 5 a.m.!”

Before long, she was starting to spiral. COVID was prevalent, and my children, then 16 and 13, were home attending school virtually. I worked part time, so I was home by 11 a.m. My mom was a late riser, and I was glad to be home early enough to watch her. I never wanted my children to encounter what I dealt with at night.

My mom’s behavior became progressively worse. She would have screaming episodes, saying she heard fighting, dogs barking, music, and other things that were not happening. She would open the garage door looking for my car in the middle of the day. There was mass confusion and severe paranoia, and she was always thinking I was in harm’s way. Nothing I said could convince her otherwise.

The turning point for my husband and me was knowing that if my mom acted out toward our children, we would have to consider alternate care. Then my daughter called me crying and said, “Nanny said terrible things to me.” That was it.

I immediately left work and called her doctor on my way home, asking for guidance. He advised me to have her evaluated at a geriatric psychiatric unit. Since I work for a psychiatric hospital, I was very ambivalent. When I arrived home, my mom had locked herself in her room. I found a hanger on top of her purse that she had bent into what looked like a knife. I immediately threw it out and called her doctor. He insisted I take her to the hospital and call mobile crisis to come to my home to physically take her there.

That was the last time her doctor spoke with me. I realize now that she had become a liability. I called mobile crisis, who said that if she refused to go, they could not force her. What a predicament.

I called my brother to ask for much-needed help. I think he thought I was exaggerating, so he offered to take her to his home. I adamantly said she was a danger to others at that point. It was not safe to move her to his home because she needed specialized psychiatric care.

He took my mom to his home, and 24 hours later she was looking out the window and experiencing active homicidal hallucinations. She agreed to go to the medical hospital, where she stayed for a week for medical testing that proved nothing. From there, she was transferred to a nearby nursing home.

I never imagined my mom going to a nursing home. I always thought she would live with me until she passed. Some things we cannot predict are simply out of our control.

Initially, it was a good fit. Soon, however, she refused her medication and became verbally abusive toward staff. I visited frequently, and before long I knew all the nurses and had a good rapport with everyone.

Some visits were good and some were terrible. One positive thing I can say is that my mom always knew who I was, which I was always grateful for. I brought her favorite foods and desserts. Looking back, Uber Eats was my favorite go-to for a moment in time. I realized how basic life becomes, and how simple pleasures like Dunkin’ Donuts coffee can be a priceless gift.

My mom coined many phrases. “Who gives a sh&@?” was my personal favorite, and “I’ve had better” always made me laugh. Not all visits were funny. In fact, my patience was always tested. I tried to hope for the best but expect the worst.

My mom was becoming oppositional and defiant with nurses. Some nurses had patience, and others clearly did not.

Then the worst happened. I received a call that my mom had an “altercation” with a staff member and that the police were called. What actually happened was that my mom used a slur toward a worker, and he threw her onto the bed and then the floor. She had awful bruises on her arm, open wounds that needed bandages, and bruises all over her body.

The emergency room doctor stated that she had been abused, though it was impossible to prove. The nursing home defended the worker and focused on her being verbally abusive toward staff. Unfortunately, not all nurses are educated in understanding psychosis, which in itself explains much of her verbal aggression and confusion.

My mom did have moments of clarity. She said, “What I said was wrong, but what he did was worse.” We reached out to lawyers and an ombudsman, but unfortunately no one wanted to touch the case.

At that point, her nursing home refused to take her back, which was a blessing in disguise. My mom was moved to a psychiatric hospital, where the care she received was great. From there, I found a wonderful care center that accepted her. Unfortunately, my mom refused to leave the psychiatric hospital, so she lost her bed there. I had already moved her in, and now I was moving her out.

For plan B, I asked her social worker to find a place where he would send his own mom. Fortunately, the place was also good. It was very crowded, but my frequent visits helped fill in the gaps.

Because my mom refused to walk and refused all physical therapy, she soon developed congestive heart failure and died very quickly.

When I look back, as I often do, I realize how very much I learned.

I learned that if we do our best, that is what is best. I learned that faith comes through when everything else fails. I remind my children that their grandmother loved them very much, because she truly did. I learned that quality of life is paramount, especially the quality of life she was blessed to have for so many years.

I learned that Alzheimer’s and dementia truly rob a person of precious memories and their very own soul, which is the cruelest thing that can ever happen to anyone.

No one knows where our own journey will end. Having a loving, supportive family that truly cares about our well-being is a true blessing.

I leave you with my mom’s favorite saying: May God love you, God bless you, and God spare you.

Thank you for the opportunity to share my journey.

Sincerely,
Deirdre