I really need to know if I'm the only one terrified of the end stages of life

Parent Cafe
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@CTmom2018, I’m sorry for your losses and the dread of dementia. Dh and I have been through that, too. We agree on how we want to deal with end of life decisions except for one thing. He insists I must let him go first. I’d agree but for the fact that he so closely takes after his dad who’s in his late 90s and was recently told he has only a few months, if that. I don’t expect to live that long.

With one exception, I’ve developed every health problem my dad had by the same age, if not earlier, and he suffered from Alzheimer’s for years, nearly a decade. My mother was in her mid-80s when she died and she had mild dementia.
I refuse to permit - if at all possible - my children from going through what we went through watching a loved one deteriorate from Alzheimer’s. Nor do I want to endure it. My dad was a brilliant man who became terribly depressed in the early stages when he was aware of his mental decline. He later believed his secure care facility was the POW stalag in which he’d suffered so much. For years I prayed that he could die in his sleep.

I want to learn more about taking control of my own end of life decisions. Meanwhile, we do have living wills. Pills and champagne for me, too. Dh will use bourbon as his chaser.

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You can’t always control the end of life decisions. Stroke victims, for example, can’t end their own lives in many cases. If you can’t swallow, or talk, or hold pills, you can’t do it yourself. And pretty much everywhere, having someone else do it in a quick and humane way makes them a criminal. Withholding food and water is the route that some families choose – but it takes a couple of weeks in many cases for the patient to die – a terrible ordeal for the family, even if the patient is kept sedated and medicated for pain. My dog could get an injection that seemed painless and took less than a minute to take effect. I want that choice, and I want my family to have that choice for me.

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What I am advocating is being prepared…with different scenarios. With a generous dose of therapy, not “just” for fear of leaving your “child” alone. Depression hits most of us when we hit this time in our lives.

The best piece of advice I received from my mother a few weeks before her dearth: “After I am gone if you cannot carry on, if you can’t take care of yourself and your family…I will have failed as your mother. Grieve, but get out of bed everyday. morning.”

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It’s hard to predict the future. I had a glimpse of it this past month, when I was dragging my oxygen concentrator around and sleeping with it for the past month. It really made me more mindful and plan more carefully. It was challenging, but something many folks endure, sometimes for decades. I am glad after one month things improved but not looking forward to having to use supplemental O2 24/7.

H is 15 years older than me and his folks died at younger ages than my folks are now. It’s hard to know what will happen as we move forward. I’ve outlived dire predictions on my mortality by over a decade now, so they’ve stopped predicting.

My folks are sad that many of their friends who are 15-20 years younger are now battling cancer and my folks have increasing memory issues.

It is a challenge. Long life does run in my genes–H’s not quite so much. Dementia is not kind to the sufferers or their loved ones.

Yes, it’s hard to know what the future will bring. We try to live one day at a time, have our “affairs in order” as best we can and move forward.

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I read OP’s fear the same way, and still my reply focused on getting one’s affairs in order. Why? Because I suspect the reason some people don’t get their affairs in order is that they don’t want to recognize the reality of their own mortality. If you are feeling fear and dread, that’s a legitimate reason to seek out help, even if it’s just to admit the fear to strangers on the internet. It is NOT a legitimate reason to fail to plan, and to leave your family in a bad situation that you could have prevented.

Also, sometimes doing something, anything, to address our fears helps us face the feared event. When I first walk into a nursing home I am always fearful of that future. But when I talk with some of the residents, it turns out that some of them are interesting and interested people.

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I live in a large NYC apartment building. It was new about 40 years ago. It’s a good building, so most people have stayed. We are now what they call a NORC or Naturally Occurring Retirement Community. So, somebody set up a meeting for us about this topic. Here are a few suggestions.

For those us who live alone, form a network. Have at least one person who hears from you every day except when you have told him/her you’ll be away. Most people will call, but a friend and I just plan to email. We see each other about 4 to 5 days a week naturally, so we shall really just be covering a few days a week. The worst thing that can happen is suffering a heart attack, stroke, or just a fall that breaks a leg and not being able to get to a phone to call for help. At least limit your agony to one day.

Give that person a key to your home, so (s)he can check on you without calling police, etc.

If you have a landline phone, position the extensions so you can reach the floor from the floor. Practice dropping to the ground and rolling to the phone. See if you can reach it. If you go into the basement, garage or other area, take your cell phone with you if you don’t have a Lifeline device.

If you live alone, consider getting one of those Lifeline type devices. There are several different companies.

Put the name, address, phone number of your physician, physician’s hospital affiliation, the names and dosage of every medication you are taking, your health problems, and the name and contact info for your family members in a holder of some sort and tape it to your front door. If that won’t work, post it on your refrigerator. Label it in big, prominent letters, maybe even bright red “EMS.” Should an ambulance have to come for you, EMS will look for that envelope. It can be extremely helpful for a paramedic or emergency room to know what your health issues are and the medication you have ingested. In NYC, EMS techs are now trained to look for this info, because NYC 's Office of Emergency Management is telling people to do this. (If you use one of the Lifeline type devices or call 911, tell the operator the info in on an envelope on your door. )

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Michael Kinsley has a book due out in April “Old Age: A Beginner’s Guide.” I am currently reading a proof I won through one of the publisher’s giveaways. It deals with this issue in a light hearted way. I’m genuinely enjoying reading it.

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Excellent post, @jonri. The only thing I’d add is that inside the EMS envelope should be your [POLST form](http://www.polst.org/). If you’re not conscious and there’s no POLST, EMS will go full-code on you.

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I can not say how invaluable this site has been to me. Being able to discuss hard topics like this and find supportive, understanding people is such a blessing. A big thank you to all who don’t shy away from the tough topics.

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My inlaws: They are not sure where their will is. The lawyer who helped thrm with it left the firm, which has closed. They sort of looked for their copy, but couldn’t locate it before they left for Florida for the winter. They hope to get around to re-doing the will this summer sometime. None of their 9 children knows where anything important is, whether ot not they have a safe deposit box, where their accounts are, etc. their house is a mish mash of Beanie Babies and valuable antiques. They resist even walking around with someone with a camera to document what is worth keeping or selling. Last summer a loose diamond fell out of their basement safe, and they haven’t found it yet. Gah!!

My own parents: My father sat down in the driveway while draining the lawnmower for the winter and peacefully passed away in his mid 80’s. He was healthy as a horse until a few months before he passed away, but as a physician he knew what was coming and took time to have his 4 brothers and his own children come for a last visit. My mother lived to 93, still in their home, until two days before she died. She left a list on the dining room table: “lipstick, wallet, book…” that she had written as she was getting ready to go to the ER for what she thought was just a little dehydration. As soon as they admitted her and she realized this was probably “it” she called us to come home, and then she called her lawyer to come to the hospital to make really, really sure that everyone knew what her directives were. (She thought that my sister or I would cave in the end and let things be done that we had agreed not to do.)

My parents put everything into a trust when they retired, made us go through the house together to write down who would get what, sent notarized copies of the list to each of us, made sure we all knew exactly where to find all of the important papers, keys and passwords. They wrote their own obituaries, arranged for their own cremations, bought their own urns and mausoleum spots. When my mom passed away all we had to do was clear out the items we had selected, have a charity come in to take the rest, and sell the house.

I hope to leave this world with my parents as a guide.

My husband is of the opinion that his parents’ house and contents just need to be auctioned off while we are somewhere on the other side of the world. A few step siblings and siblings will make a fight of it, and nothing will be settled or easy to find. There will be anger, and the most tenacious siblings will control the “winner take all” mess that will ensue. If they ask my husband to be executor (he is the oldest) he will refuse unless they tidy up the thousands of loose ends before they ask.

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I post this on another thread recently but am posting it again as my folks found this very helpful to put all their wishes and info in one place for when needed: http://www.lastingmatters.com/

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Five wishes by Robert Wood Johnson Foundation us another free way to express your desires.

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I have made hubby promise to outlive me. Not only do I fear the suffering, loneliness is just as difficult. I had surgery last summer that I knew I’d recover from, though I haven’t yet. It made me realize that I do not want to live in chronic pain.

After dealing with my mom I swear I hope someone just puts me out of my misery. I’m up for a murder/suicide plot, smother me with a pillow, shoot me in the head…just don’t let me see it coming.

Sometimes I think we’re more compassionate with our pets.

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Yes, most folks think we in the US are much more compassionate with pets for end of life care than humans. Pain and dementia/Alzheimer’s really are nasty for end of life! >:)

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Last winter there was a heavy snow and I remember hearing about the (inevitable) deaths caused by snow shoveling. One man was in his 90’s shoveling snow! I thought at the time that surely he must know better but maybe it was by design???

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Have you all seen the movie Still Alice? Moving and well acted.

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It was a very poignant movie. Saw it in the plane.

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I willed my body to the medical school in my town. I have framed the certificate and hung it over my nightstand as well as informed all my family my wishes. So when the time comes there is no question as to what I want done. Not everyone is pleased but they respect my choice.

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My dad is 85, and insisted on doing his own snow blowing when I was there recently, although I tried to get him to let me. I compromised by keeping an eye out from the window until he came back in. He does try to take his phone in his pocket now just in case, since I am not there to watch. I had a friend who fell off his roof to his back deck a few years and broke his back – cell phone in his pocket, and he was able to call 911. I told my dad this story!

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I’ve decided that I am going to live and love and be in good health until I am 84. After 84, I will start the next journey of life, whatever that may be. I realize I don’t actually have the power to ensure this but, I figure, why not pick an age and go for it. Can’t hurt. This would be a longer life than my dad (80) and both sets of grandparents. I hope to retire at 80 and start smoking cigars again. My wife rolls her eyes at me when I say this but a man has to have something to look forward to. I am not afraid of dying. But I am afraid of leaving those I love behind without support or guidance.