What to Do When Grandma Has Dementia
December 28, 2016 9:50 AM   Subscribe

Working while caregiving can take a big toll on you. Caregivers who have full-time day jobs suffer from poor health, low work productivity, and emotional burnout and breakdowns. The important thing is to always get enough sleep, and keep your nutrition up—take vitamins. You have to keep a disciplined schedule. Wake up at this time, do you, then do Grandma, then do you again, then do Grandma once more and be off to work. After work, come home and do Grandma, then do you, then do Grandma till she falls asleep, then do yourself once more and go to bed. Somewhere in-between the Grandma and the you and the work, don’t forget to do God.

I read this because of my increasing caregiver responsibilities for my dear mom who is still active and doing well but I try to prepare for what's ahead for us. The writer shares his experiences as a man caring for a woman and an African American man as caregiver. Larry Handy also covers so much more: cultivating friends who can relate, dealing with family, managing hospital stays, record keeping. This really affected me on many levels as I am "trying my best to be one less quitter in the world".
posted by narancia (17 comments total) 54 users marked this as a favorite
A book that has been very helpful to me as a caregiver for someone at the end of life was Her Final Year. The book will be available for free download this Sunday (as it always is on the first of the month).
It focuses on the experience and I've found it reassuring to 'check in' with someone else who has gone through these experiences.
posted by darmok at 10:08 AM on December 28, 2016 [5 favorites]

This was beautiful. I find that if I don't stop myself, I can easily get paralyzed with fear about being on either side of this. I have some ideas of what I can do to help avoid being a burden in my old age, but I am at a loss for how to cope when the people I love need more help than I can give.
posted by sparklemotion at 10:46 AM on December 28, 2016 [3 favorites]

Wow, what a phenomenal writer. Thanks for sharing this.
posted by sockermom at 11:33 AM on December 28, 2016 [4 favorites]

One of the first things you're told in an Alzheimer's support group is that you can't take care of your loved one unless you first take care of yourself. Unfortunately, it's a hard lesson to learn, and so many people suffer for not taking it to heart.

The sad part about the way our society is structured is that, for many, it's simply not practical or possible to properly care for a loved one (and keep the caregiver sane/healthy/etc.) outside of placing them in a care facility. And, that's probably the toughest hurdle for the caregiver to conquer. It's a jumble of emotions to have to wrestle with that inevitability, and many people put it off for far too long, until both the loved one and the caregiver are in serious difficulty.

My wife and I went through exactly this over the past few years with both my mother and her father. Navigating the end of life for two others has certainly solidified some feelings I have about being elderly in this country, as I myself approach my later years. Not many of those feelings are positive, I'm afraid.
posted by Thorzdad at 11:51 AM on December 28, 2016 [5 favorites]

But know that sometimes leaving Grandma and going away to work can be a solace. You may need that change of setting to clear your mind. Going to work can start becoming your daily vacation.

This. This is how fucked up it can get.
posted by Mogur at 12:05 PM on December 28, 2016 [24 favorites]

My grandmother is suffering from dementia. We buried her husband last week. She asks for him about hourly. My mother's going crazy trying to keep up. We had a tear-filled phone call yesterday, about how much she misses her mother.

I'm going to forward her this, thank you. I want it to help her forgive herself for allowing herself a moment to cry, and be human.
posted by DigDoug at 12:20 PM on December 28, 2016 [4 favorites]

A wonderful post, and so true.

I wasn't good at taking care of myself while taking care of my mother in the skilled nursing center (she put herself there) while she had severe Parkinson's and increasing dementia. I just kept working (classroom teacher) and got angrier and angrier. And wrote REALLY funny blog posts that I friends-locked and will never be able to share.
posted by Peach at 12:23 PM on December 28, 2016 [2 favorites]

My wife and I have been living this for a decade or so, as we take care of her mother (who suffers from Alzheimer's). She lives with us, and has been my wife's main focus since the start. I help as much as possible, but it's a full-time "job" for my wife. Her mother is in her early 80s, and about mid-way into the Alzheimer's Cycle - it's only going to get worse. Circumstance and preferences have us set on keeping her mother with us till the end, and if we do our job right she may be with us for another 10 years.

It's so, so hard explaining the situation to anyone on the outside, living it day by day and hour by hour. The confusion, the fear, the changes we've had to make in our lives. There is no break, no down time. I can escape to work, and do what I can to be a caretaker when I'm home. It's much harder on my wife, as she sees her mother degrade and regress. We try to do the right thing, but there's no training or preparation. We second-guess decisions and choices, while soldering on making her mother's twilight years as safe and comfortable as we can.

Everything in the article resonates with me. At least the author is younger, when her mom passes we'll be in our mid to late 50s. I know we've not put enough time into planning our future, what will happen when we no longer have caretaker responsibility?
posted by jazon at 12:32 PM on December 28, 2016 [9 favorites]

I've read this three times since I posted it. I've cried at a different spot each time while at work - which is my daily vacation. As the only girl out of four children, all the needs of and care for my mom have fallen to me. She is still doing very well but I wonder about the years to come. So now I am trying to develop strategies and coping skills to get me through whatever is in our future.
posted by narancia at 12:35 PM on December 28, 2016 [4 favorites]

Having read it carefully, I think it may be fiction (no mention in the author's bio), but still true.
posted by Peach at 12:40 PM on December 28, 2016

I'm an only child, my mom is 65 with a family history of mental illness (she has bipolar) and Alzheimer's, and I am absolutely dreading this. She's difficult to deal with even without any serious health problems. My stepdad is nearing 80 so he's unlikely to be around, or be of any help even if he is. I've tried to have a talk about finances (my mom is a spendthrift, but at least they own their house) but they're not forthcoming so I have no idea what resources I'll have. I don't have hardly anything myself.

I guess people do what they have to do when the time comes. I try not to dwell on it.
posted by AFABulous at 12:47 PM on December 28, 2016 [2 favorites]

I'm in an unusual situation as a relatively young person with a chronically ill spouse (who is also young). There aren't many resources for young folks who are caregivers (other than for parents, obviously, which is a different kind of care-giving). Anyhow, one book I've found and recommended to many, no matter what their age is The Mindful Caregiver

(p.s. re: Mogur's response to work = daily vacation. I know it's sad, but I definitely feel that way a lot of the time, I think many probably caregivers do.)
posted by nuclear_soup at 2:00 PM on December 28, 2016 [6 favorites]

For the first time in 10 years, I am not responsible for anyone with a terminal illness. I'm 27. It's hard to breathe a sigh of relief and figure out what to do with all this free time when I know/am paranoid that this is just a short lull before the rest of the Baby Boomers in my family get old and sick. Knowing early-onset Alzheimer's runs in my husband's family doesn't help with the feeling that someone is about to need me.

I really should have made a caretaker friend my own age at some point. It's really hard to always be the only person under 30 talking to other caretakers in their 50's/60's or to try to explain to other twentysomethings what it's like to have a parent with stage IV cancer and dementia. Reading Samantha Irby always helped.
posted by lemonadeheretic at 4:44 PM on December 28, 2016 [9 favorites]

A fantastic resource for caregivers is Family Caregiver Alliance.
posted by Maurecia-Flavored Ice Cream at 8:03 PM on December 28, 2016

I listened to a podcast with the author of the book Connecting in the Land of Dementia . Her story and approach were touching and thoughtful.

Podcast link here.
posted by h0ke at 8:44 PM on December 28, 2016

"I'm here on holiday and it's nice."
An intimate portrait of European dementia patients whose care has been “subcontracted” to nursing homes in Thailand. We hear from inside a home in a suburb of Chiang Mai where Thai staff care for patients from Switzerland and Germany. It costs perhaps between a third and a half of equivalent, or arguably better, care in the patients’ home countries. We hear the funny and warm interactions between the two very different cultures – and the astonishment of the Thai staff at the way that Europe treats its senior citizens.
BBC World Service (audio, 27 minutes)
posted by Mister Bijou at 1:24 AM on December 29, 2016 [1 favorite]

[This is good]

Going into my eleventh year as primary caregiver to a super-strong lady who turned a six months diagnosis into 17+ years so far I still have problems with taking care of myself first. From the outside it's been perceived as being uncaring at times. When I'm already feeling extreme guilt for not being there 24/7, it's that little bit of social pressure that can get me behind the eight ball. Weirdly, my employer and teammates at work have been my best support. Not because everyone else sucks, but because they all really step up and I still have a job there...and at times everyone else sucks.

I found nuclear_soup's comment about there not being a lot of resources for the younger caregiver of a non-traditional chronic/terminal patient to be dead on. I second the linked book FWIW. Anyway, just wanted to add my $.02 and a thankee for both the OP and the moment of respite.
posted by Fezboy! at 5:58 AM on December 29, 2016 [2 favorites]

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