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How do you die from dementia?

How do you die from dementia?

I forgive you, mother, I can hear you
And I long to be near you
But every road leads to an end
Yes every road leads to an end
Your apparition passes through me in the willows
Five red hens – you’ll never see us again
You’ll never see us again
— Death with Dignity by Sufjan Stevens

This title is something I googled many, many times before my mom passed away. The first time I searched for the answer to this dreaded question was after I found my moms diagnosis in a pile of papers hidden in my great-grandfather's desk. My dad couldn't tell me, not yet. The answer wasn't easy to find. It depends, many sources said. Some die from starvation (my gut wrenched), some die from dehydration (more wrenching), some from pneumonia (thats not so bad, maybe). 

Later on, I searched for "life expectancy dementia" or "stages of dementia". Nothing really explained what would actually happen. They were helpful frameworks, but they did nothing to alleviate the torturous waiting game, yearning for death while frantically praying for a miracle reversal of the disease.

I want to share how my mom died, because what I was really searching for was others' experiences to guide my own. I wanted some kind of real answer to help me understand how long it could take, what could happen, and what things I could see. It wouldn't have made it easier, but maybe I would have felt a bit more calm, or known how to prepare myself a bit better.  Or maybe I just wanted to commiserate how much this SUCKS! 

My mom first got sick in 2005. She was diagnosed in 2009, after a follow-up MRI to her 2007 testing. She was working until 2011 (not well), at our family business. That's when I moved home. We were able to move her into full-time care in 2012. She stayed there until she died this past December 2015. Her condition stayed relatively stable from 2012-2015. She had a few really bad UTI's from being incontinent (that started in 2011). We thought she was going to pass away a few times but she recovered. She broke her hip in May of 2015 (2 weeks before my wedding! not fun.) and thats when she really started to decline. 

Her home's policy, even though we had a DNR, was to take her to an ER for her hip. Due to her condition, we decided not to operate. She was very ill, and it would not have helped her to be mobile since she couldn't do physical therapy. She became bed-bound. Her neurologist suggested it would be about 6 months or less until her death. After 10 years, we had a relatively sure estimate. Over those next few months, she started eating less, moving around less, she was less present. Around Thanksgiving we started to notice a real change. Hospice was called in, and provided much needed support, careful attention and medication management. She didn't seem to be in pain. 

I was working full-time, and it was really difficult to remain present at work while this was slowly going on in the background of my life. I was fortunate to have a Doctor who encouraged me to take short-term disability based on a diagnosis of "Mood Disorder", which my short-term disability plan approved. It was a mood disorder, really. I couldn't focus at work (which was bad - it was a hospital!) and I longed to be near my mom in her final moments. She stopped eating altogether two weeks before she died, and all we could provide her were water swabs to moisten her mouth. The last week was rough. I slept next to my mom in her bed, as she fidgeted around. My dad slept nearby on the couch at her nursing home. The staff there was incredible, making us coffee and lending an ear when we needed to vent. My sister came down when it was closer to the end and we all sat with her, crying, holding her hands. 

When we are dead,
We all have wings.
We won’t need legs to stand.
When we receive,
To see a change at last.
— We Won't Need Legs to Stand by Sufjan Stevens

I was alone with her when she started the death rattle. This is when someone is close to death, and their breathing is very labored, and it sounds really harsh. We were listening to Sufjan Stevens album, "Seven Swans", one of my mom's favorites. I frantically called my dad who was at a doctor's appointment and said she was going soon. I told my mom to wait for my dad, and she did. He walked in and we sat with her, mostly silent, listening to the music. She was gaunt, probably only 80 pounds, down from her normal 150-160. She couldn't move. Her hand was contorted down and she would not extend her arm. She stared at the ceiling, eyes unblinking as she labored to breathe. She inhaled, exhaled, and it all stopped. Her Reverend from Truro Church ran through the door, explaining he felt he needed to come and visit her, got lost, and just found the place. She inhaled once more, exhaled, and she was gone as the Rev. said a prayer over her. 

That's how it ended. It wasn't pretty. She was very hard to look at. She felt cold and clammy. She was fidgeting, and struggling to breathe. She lost 1/2 of her body weight. She made weird sounds, and her body was contorted. But - this was real. This is how you die from dementia. It is not clean, it is not easy. I did not feel relieved when she died, I just felt sad. (By the way - if you are trying to console someone who is grieving, do not try to tell them they should be relieved). She has been gone for 10 months now, and I am adjusting to my new life without her. I haven't listened to Sufjan Stevens since, until now. He actually wrote an album about his mother dying called "Carrie and Lowell", which I recommend if you are in need of some sad music to console you. Don't forget to lean on your hospice team, and use those resources - which are free through Medicare and Insurance. Try to play music for your loved one - it is one of the last parts of their brain they lose! Be present and take time to process what is happening. Take time off work. Acknowledge its all awful. Slowly you will come out of that feeling, you won't feel like its all awful anymore, and you can remember how it used to be when they were well! Now, I can say I am relieved. It is over, and my mom is at peace. However, in those final days, that was not helpful to know. It was enough to sit with her and be with family, comforting each other and grieving together.

 

 

Caring for the Closest Ones

Caring for the Closest Ones

How to get FREE help. What?!

How to get FREE help. What?!