I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control to his crappy TV at the hospital. The last time I talked to him on the phone, he was telling me about a church picnic that he had attended. He mentioned he brought brownies in a basket. There had been no church picnic.
I remember sitting on the bed in my small grad school apartment with my black cat, Teela, as my mom called me to tell he that he died. It seems surreal that I still have Teela (although now she has three doggie brothers and a feline sister–oh, and a dad!) and am looking at her in her kitty condo as I type this today. It seems so long ago, but I guess it wasn’t that long ago because I still have Teela–although she is a bit heavier and moves slower…I could say the same about myself though.
I asked my mom if she thought I should call my grandma to express my condolences. To be honest, I wanted her to tell me not to bother Grandma. I was a little nervous to make the call. I didn’t know what to say. When Grandma answered the phone, she launched into a story about the Red Roof Inn she was staying at near my grandpa’s hospital. She had spent a lot of nights there, and they were kind enough to not charge her for the night my grandpa died. She was absolutely overwhelmed by their kindness. I think of this every time I see a Red Roof Inn to this day.
I didn’t really know what to say when she paused after praising the employees of the Red Roof Inn, so I blurted out, “I’m sorry about Grandpa.”
“Oh, honey,” she said. “I was praying for the Lord to take him. I knew he wasn’t gonna be strong enough to come home after losing that leg. It was the best thing.”
The best thing?
At that point in time, I had this idea that we all should fight for our lives to the bitter end. I saw death as failure, not as a natural part of life. And I wasn’t sure what I thought of someone hoping and praying for a loved one to pass away.
In a way, I was glad my grandma accepted my grandpa’s death on some level. On the other hand, I couldn’t wrap my mind around the notion that my grandma prayed for my grandpa to die. I can assure you that the experiences I have had between then and now have absolutely allowed me to wrap my mind around this.
I was speaking with a woman recently whose husband has a type of dementia that can progress very quickly. I pointed out that this rare type of dementia has a shorter life expectancy than Alzheimer’s and most other types of dementia. I had only known this woman for about…3 minutes…so I worried that I’d said too much and was perhaps being a bit pessimistic and blunt when I had no idea where she was at with this.
“Oh, thank God,” she said. “The quicker this progresses, the better.” Then she looked horrified, like she couldn’t believe she said this to me.
There are many people who live well with dementia. Unfortunately, her husband is currently not one of them. And she wants this over as soon as possible, for him and for her.
Then she asked, “Am I a bad person for wishing he dies sooner rather than later?”
I wasn’t quite sure how to respond. It seemed like a question for a ethicist, pastor, or philosopher rather than for me. All I could do was reassure her that her feelings were normal considering the circumstances. She was absolutely right that he seems to have little quality of life. He spends most of his day in their bed–but with his eyes open–and he gets upset if she tries to turn on the lights or the TV. He recently told their kids that he was sorry he ever had them, and he had even become aggressive toward one of his grandchildren. She also pointed out that he’d be really upset if he realized that all the money he had worked so hard to save would likely be eaten up by a nursing home.
So, are you a bad person for hoping that your loved one with late-stage dementia passes away rather than lingers on? Absolutely not. This is normal. It’s also normal that you might wish for them to pass away in one moment but in the next minute be willing to do anything to keep them on this earth.
And when they do die, it is normal to feel guilty that you wished that they would pass away and then want them back. It is normal to feel a variety of emotions when a loved one with dementia dies, but one of those emotions may be relief. And–no–none of this makes you a bad person. It makes you human.
If someone says to me that they want their loved one to “go quickly” or “leave soon” or any other euphemism we can use to avoid the actual term “death,” it may be partially from a selfish place–because being a care partner is demanding.
However, I find that more frequently it has nothing to do with the care partner and everything to do with the person with dementia. While some people with dementia live a life worth living right up until the moment they depart, we cannot say that everyone with dementia has a positive quality of life from dementia to death. It’s just not true. Alzheimer’s, Huntington’s, Lewy-Body Dementia, frontotemporal dementia…these can be cruel diseases.
When we look at our loved ones and see depression, anxiety, and pain (physical and emotional), we may hope for death. Don’t beat yourself up if you pray every night for God to peacefully take your parent, spouse, or sibling. No judgment here. And if you attend a dementia caregiving support group and mention that you are ready for your loved one to pass away, you will see a chorus of nods and knowing looks.
I fully anticipate that this post will offend someone. And I am offended as well. I am offended that dementia causes such suffering that one would at some point hope for death for a family member or friend–and that as a society we haven’t been empathetic or supportive enough to those in the midst of this journey.