Praying for the End in Dementialand

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.

5 thoughts on “Praying for the End in Dementialand

  1. Yes. It’s where I’ve been many times as my mother has endured so many challenges over the last six years once we moved her from her home into the care of others. Now, as I stroke her sunken checks, hold her limp hand, and sing over her shrinking frame, I pray for a peaceful end while grieving the idea of no longer having her to care for. Do I trust death enough to be a better place for her? I’m not sure I am ready to leave Dementialand. We’ve been here so long, it’s become our way of life.

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  2. Well said. I am enjoying your posts because they validate how I am feeling as a caregiver of a young husband, diagnosed with Frontotemperal Dementia. Thank you for your words, it helps.

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  3. This is a very hard subject to discuss, but needed. When I was diagnosed in 2010, the following year my dad had a massive heart attack followed by a massive stroke. My mom couldnt take care of him so he moved in with us. As I was dealing with the harsh reality of not being able to work or drive ever again, I became a caregiver at the same time. I have had those feelings many, many times. But for both of us. I seen his suffering as the stroke hindered him a great deal then came his own Alzheimer’s and dementia as the next 2 years went by. When he passed last year, I had every feeling in the world. Wrenching heartbreak, extreme guilt, anger that he was gone.. but in the back of my mind was “relief”. That word seems such a horrible word and feeling. It was a mixture – for him and I. I knew he was ready to go home to the Lord and I knew he wouldnt be suffering anymore, no more pain and was leaving this world for “paradise” – which I was so happy for him, envious too and also sadness. But the relief was for me too and I hated it. That part of me that could finally focus on myself and my progressing dementia/early onset of alzheimer’s and I guess, rest and heal as best that I could.
    I miss my dad so much, some days to the point that he is all i can think about and I cry and wish he was still here to hug me and tell me everything is going to be ok like he used to. It takes me awhile to remember he is in a better place and has found his own peace.
    Now, I’m the one wishing it for myself. I’ve blogged about it and had a response from someone saying how selfish I am and I should appreciate all that I have and can still do (ex: still write a blog, express my feelings) Maybe I am being selfish to want this all to end. But I see the suffering my family is going through – because that was me, not long ago, with my dad – being a caregiver – which was the hardest thing I’ve ever done in my life. How can I “want” my family to go through what I did?! I’m not “suicidal” at all. I’m just tired and scared of the scars that will come to my husband and grown children as they continue to care for me.
    This disease is so horrible as I’ve written about many times. I’ve written that it’s the worse disease in the world because we dont have a “time frame”, no meds to even help the disease – only the symptoms of the disease – which then you take more meds to counter the side effects of the symptomatic meds….. a ridiculous cycle. We will or are all ready a “shell”. I guess for me and sorry if this offends anyone, but for me – I would rather have a disease that I know – “ok, Mrs Wagner, you have 3 months to live and this is what you will go through till then” … as harsh as that is, that’s a lot easier than “ok, its about 10 years of this, but every single person in the world progresses differently, so we really dont know when or how you will go – through stages of dementia, lose all memory, finally pass away – because we may live in dementia land for 10 years – in a world not knowing the person next to us anymore, not being able to walk, feed ourselves, bathe, or even find our words anymore for a simple conversation.. either locked away in a home with strangers – or living at our own “home” with “strangers”.. that’s our reality.
    Death – not an easy subject nor any easy answer, but all feelings are “normal” and unfortunately whether a caregiver or someone with the disease, you want it to just all go away (to end).

    Sorry for the long post, I haven’t written a blog of my own in awhile – dealing with the disease as its progressing quickly now and this was a great blog and the timing in my case was perfect – a perspective I needed to read and will share. Thank you!!

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  4. My father died years ago at age 52 of a sudden massive heart attack. Here one day, then simply….gone. It was a blitz attack to the family. Young widow (40’s), 4 children (2 0f which were in high school). We were simultaneously numbed and consumed with grief. Life had suddenly and cruelly changed. We struggled to survive, reorganize, create a new life.

    I was terrified my mother would follow him to her grave- die of a broken heart. I vowed to do anything in my power to make her happy. I chose to devote myself to her.
    Yeah, I know, I have seen psychologists since then and that was not the healthiest choice to make. But I could not see it at the time.

    Now she is 81 and diagnosed with Lewy-Body dementia. She is declining rapidly now. In retrospect I can see that she has had it for quite a few years now. She dies a little bit every day now. I watch her cry because she is confused and lonely. She wants to go home and see her mother- literally. She does not often recognize me as her daughter. She asks me to call her mother to come pick her up because she doesn’t feel so good.

    I too have come to pray for her release. This is not living. She rarely smiles or enjoys anything.
    I have to wonder. Is suffering from illness God’s (or nature’s, if you are a Darwinist) way of allowing us to “let go”? Until I watched her suffer I would have fought tooth and nail to keep her here. Now I hope she finds her relief soon.

    Is the quick and dirty way of loss better than the slow and dirty way of loss?

    No. Each one tears your heart out. You will never be the same again.
    Thank you for your blog. It helps.

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