The Good News: You’re Going to Die. The Bad News: Death Has Bad Breath & If You Have Dementia It’s Worse

Me & mom. Another day.

If you’re reading this blog because you have a parent dying from Frontotemporal dementia, I have bad news: things are going to get worse. That is a fact. No point in sugar coating the truth, right? There is no happy ending, no light at the end of the tunnel (unless you accept death as light), no hope, and no cure. Nothing………………………… says the glass-half-empty-girl.

There is only suffering.

What your providers will tell you as you progress further down the demented rabbit hole, is that “this” is harder on the families…………….. maybe they’re right. I’m not a doctor. I’m a daughter. Still, no one knows what my mother feels, what she may or may not be experiencing or sensing……………………. and no one tells you the truth: it’s going to get worse.

Worse for me was the yelling (well, worse this quarter because it has been much, much, much worse in previous months and years. See: Geriatric psych ward). My mom can’t talk. She yells………………….. AAAAHHHHHHHHHHHHHHHHHHHHHH!!!!!……….. always yelling. She still yells, not as much thanks to Hospice. We didn’t know if the yelling was due to pain, the disease, or some form of communication…………………………. an FTD expert from the Banner Alzheimer’s Institute would tell me that yelling is very common at the end stage……………………… Still, it’s an awful thing to witness. How do you comfort a 75 year old woman? What do you do? You can’t pick her up and cradle her………….. yes, you can hug her and hold her and lose your hearing at the same time, but what can you really, truly do. She is slowly dying. This is how she’s going out. I felt incredibly helpless. Totally alone. On October 31, I snapped. I did not want to carry this burden any longer. I wanted off the Titanic. I was ready to dive head first into freezing waters. As I sat in bed, I thought, ‘a plane crash would be a good way to go. Quick. I would just shut my eyes and go. That sounds nice.’

The thought of ending my own life on a 747 over the Pacific faded real fast with a good night’s sleep, which, for me, is sometimes all it takes. Of course, just because I got a grip doesn’t mean I don’t want off the doomed Titanic. I do. Very much so. But in order for me to actually get on a lifeboat, my mom has to die. And that is an interesting thought to contemplate……………………………. I often think about death. A lot. How could I not? I can smell Death’s breath……………………………….

So back to the plane crash…………………… I from time to time, try to put myself on that plane. To breathe in the fear, to imagine what would happen to me on impact………………… would everything just go black like the season finale of the Sopranos? Or is there something else waiting for me……………………. for you? Is there really a light?

I don’t have children, so I can take the time to do this, while reading the New Yorker.

Death is not a great conversation starter. People don’t like to talk about it. It scares them. Everyone turns incredibly awkward and you’re the asshole who started the conversation. Really, the thing is, most of us are wired to live — to survive. We don’t want to die because we have something to live for. Like children or grandchildren, a fabulous career or a cute cat (or two).

The Dalai Lama talks about death and contemplating death in his book, Becoming Enlightened, so I feel like I’m in good company when I think about a commercial jet nose-diving into shark-infested waters.

To make us mindful of death, the Buddha taught meditation on death. If you are mindful of death, you will be drawn into thinking of many things, particularly whether there is life after death. Even if you suspect that there is, you will take interest in the quality of that life — what it might be like.

This will lead you to think about Karma, the cause and effect of action, thereby drawing you away from choosing activities of harmful nature and encouraging you to engage in activities that are beneficial. This itself will lend your life a positive purpose.

If you try to avoid even the mention of death, then on the day when death comes, you may be frightened. However, if you contemplate the fact that death happens naturally to all living beings, this can make a big difference. When you become familiar with death, you can make preparations for dying, and decide what you should do with your mind at that time. On that day your preparation will have its effect; you will think “Ah, death has come,” and you will act as you had planned, free from fright.

I think he is right. However, while we can mentally and emotionally prepare for death and act of dying (which can take a long time), we physically cannot help ourselves along the way (unless we live in Oregon)………………………………… we cannot die with dignity………….not even one ounce……………………. dying is a family affair, and if an individual is dying from a terminal disease, they should have the right to end their life. But, then, that’s another story. Dying is like arm wrestling with the devil. You fight hard to win, but you know you’re going to lose. Witnessing death ravage your mom evokes a pretty similar response: you want to make your mom as comfortable as possible, to ease her pain — emotionally, physically and mentally — so she can be at peace………………………… my saintly mother deserves that much……………………. And every single day, I feel like I’m dancing with the devil and on the next turn, he’s going to break my neck. I do my best, but I can’t do everything. So what do you do? Nothing. You watch. You suffer with them. You cry with them. You watch them yell out…………………………….. you hold their hand, you hug them, and you give them palliative care.

And then you go home and board that imaginary plane to nowhere.

5 comments

  1. Thank you for writing this. My mom just had a psychotic break and is being assessed. Her mother had FTD. I am very worried and know that I will be very sad if her psychosis was caused by FTD (I have been scaring myself reading academic papers about the two in correlation which is probably not the best idea). I am just trying to prepare myself for the possibility that things will never be the same. She has given me 20 amazing years of care in life that I will treasure forever, even if the prognosis is what I fear. I just hope suffering can be limited in whatever path is ahead of her.

  2. Hi there I can personally feel what u have gone through as my mom is suffering from Fronto temporal dementia and I am taking care of her completely I am with her for 24 hours and I could feel wat mom is undergoing through.I know how it feels in every stage of the disease as it progresses making the condition worse .A daughter can only take care of her mom because she is into her and she carefully observes every bit of her mom s condition and takes care of it . I have not let any outsider to look after my mom. I am sufficient enough and very much responsible enough to take care of my mom. Now my mom is in her end stage and knowing the reality seeing it but it’s difficult to accept the truth of mom s condition as I am the one who is with mom for 24 hours and for her I can do anything and I know all the lobes of her brain are almost damaged no sensorium left and no matter what I still keep talking to her knowing that she cannot response but still I keep telling her what all is happening because physically mom is present nd for me she is my world.It’s the bitter truth which I never dreamt nd my mom is jus 53 and too young for this disease and this kind of her end.now its been 4 months my mom is bedridden after the convulsion attack due to dementia. I remember I cannot forget that last year in sept I saw convulsion attack for the 1st time in my life that is also my mom’s and thankfully at home injection were there nd My dad was there and My dad is doctor so medicines injections r stored at my house so dad took care of it nd gave mom injection but after convulsion attack mom s brain shrinked rapidly because already she is suffering from fronto temporal dementia and convulsion attack led her bedridden. I was shattered and I keep watching her nd I fear sleeping at night because I observe mom sleeping When sneezes she cannot feel when she coughs she cannot say.So I make sure that she sleeps at whatever time after that I sleep.
    I read ur blog and I could relate it with mine as mom is my world and she is the one whom I love the most.

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