My Parents Never Forgot My Love

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Cheryl. I’m a woman from Tennessee who is part of the Baby Boomer generation. I was a caregiver for my mom and dad.

What did your life look like when you became a caregiver?

My youngest child had just gotten married. I had a new empty nest, and I was enjoying the independence and time alone with my husband. It was pretty nice actually. I progressed into the artist phase of my life, making and selling my art.

Both of my parents began getting sick, so we had moved closer to be ready to take care of them as their condition was getting worse. Suddenly, the bottom fell out, and it was time to step into a caregiver role. It was not a choice; we had to.

Who did you care for and what prompted their need for care?

We’re a close family and I was already interacting with my parents most days. As their ability was declining, I was stepping in and helping with more things. When my mom was diagnosed with Alzheimer’s, it became clear she needed care.

She became stubborn and started insulting everyone, which was not her personality. Alzheimer’s was ruling her personality and her habit.

My father had been sick with brain tumors and was deteriorating during the same time as my mom. They shared a room in the assisted living facility, which created its own issues.

What was a memorable learning?

Just before my parents moved into the assisted living facility, my mom had a traumatic fall and spent a few days hospitalized in intensive care. That sent her mind sailing rapidly into a bad place.

She got terribly paranoid and thought the hospital workers kidnapped her and were demanding money. I was staying with her at the hospital and at one point I made the mistake to say, “You’re confused, Mom.” That was wrong. I should not have said that.

At that point, just the sight of me infuriated her, and she stood up in her hospital gown and said, “I’m going to leave.” I replied, “Mom, you don’t have any clothes on. You can’t go anywhere and it’s snowing out.” She found her purse and bra and left the room. I quickly found a big burly man, and I said, “You have to catch her or put her back in her bed.” He was this deep voiced big bear of a man and he took her by the arm and said, “Come on, honey, let’s go in there”. Suddenly, she turned into a teenage flirt and he got her back into her room and into a chair. She relaxed, but the sight of me set her off so I had to disappear. I called my sister from two hours away who was able to calm my mother down. I just had to stand away, and it broke my heart.

It all became too much, so I went to the head nurse and I told her, “I don’t know what to do, I never trained in this. They’re my parents and I love them and I’ll do anything for them.” She told me, “You need to pay attention to how they feel around you. You don’t have to explain things to them if it upsets them. You don’t have to reason with them. Just agree with them.” I said, “Are you saying lie to them?” and she replied, “Yes, lie to them.” That’s when I learned I couldn’t reason with them. I just had to go along with it all.

What surprised you about caregiving?

My mom felt trapped and was furious that she couldn’t go where she wanted. I had to dismiss the nurses because their presence was upsetting her. Nurses would stand there and I’d say, “You can go now, I’ve got her.”

I’d sit down and distract her by saying things like, “Hey, Mom, I can make a fish face. Can you make a fish face?” You know, little things like that. Or, “Oh, Mom, I was reading this article the other day about this silly thing I thought you would like.” She would get distracted, calm down, and let me crawl into bed and she would cuddle me. I learned that brief distractions are the very best thing.

It also surprised me to learn that a mild affliction, such as a bladder infection or constipation, can send someone with dementia completely around the bend. Those were the times that my parents forgot my name. Thankfully, they never forgot that I was someone they loved, and they knew that I loved them and would be kind.

How do you try to balance being a caregiver while caring for yourself?

There was no balance. My mom and dad’s health was deteriorating quickly, and they were in the same nursing home room. He had gotten down to under 100 pounds with brain tumors and had no appetite. He couldn’t taste the food. The doctor put him on a marijuana extract to help him eat, but a nurse noticed that the medication was making him psychotic and act erratically. We took him off the medication and that helped. During that time he was oblivious to what was going on with my mom. She’d be sitting in the bed vomiting into a bucket held by a nurse. He’d be reading the paper just oblivious. Handling both of them was more than anyone could manage.

I would fall asleep anywhere I was, then wake up and do it all over again. I rarely had meals. Trying to see my husband was hard. I had no time for myself. It was especially tough when my parents were in separate facilities. If one was in the hospital and the other was in the assisted living facility, I had to go between the two of them and try to keep them both calm. Those were horrible times.

I came home one time, just broken, and I started praying. I felt exhausted, that I couldn’t do it all, and I started praying for God to take the load off of me. The answer I got was, “Oh, I have taken most of it off you.” It strengthened me to know that I wasn’t shouldering the burden alone.

There wasn’t balance at that level of intensity. During the last month of my mom’s life, I lost 30 pounds because I didn’t have time for food. I ended up moving into the nursing home with my mother. I brought an air mattress and stayed there with her around the clock.

What resource would you recommend to caregivers?

I relied heavily on the head nurse from the assisted living facility, who was a very knowledgeable, direct woman from Boston. She taught my sisters and I the best ways to handle the two different forms of dementia my parents had.

The hospice care staff was also beneficial. My dad was in hospice when my mom died. In particular, his caseworker helped me to be calm during a wildly uncalm time. He taught me to just stay physically close, to hold my parents’ hands a lot, and to caress their faces like babies when they go into physical crises. That was important, because a patient with dementia is similar in ways to a child. I suppose that having a large family taught me very well how to deal with those behaviors. Anger NEVER helps. And yet, they are still adults, so they still deserve respect. It’s such a fine line.

What advice would you give to caregivers?

It seems so counter-intuitive until you’re in a situation that warrants it, but the advice that a nurse shared with me really helped. It’s okay to lie to your parents, and it’s okay to stop trying to reason with them. You cannot reason with the unreasonable.

Sometimes you have to forget everything you learned and treat your parents in a way you never would before. That might be the best thing for them in their final months.