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On the Eve of Our Tenth Year

November 7, 2014 by Marylee MacDonald

How fragile life is, and how easily we forget the myriad shapes of human suffering and the courage it takes to soldier on. Can we say with any certainty what pushes us over the edge, makes us fragile, afraid, and suicidal

Caregivers of those with mental health issues are also in for the long haul. Even looking after our loved ones, we cannot know exactly how it feels to be them.

I received an amazing submission from a writer who wishes to remain anonymous. This essay is about what it feels like to live inside the reality of a breakdown, and to then live beyond it.–Marylee MacDonald

On the Eve of Our Tenth Year
I am writing this to my husband on the eve of our tenth year as a couple. This tenth year, when he has become less my partner and more my caregiver. You see, I am suffering an unusual affliction that frightens us both to our core.

Cycling down the center line toward self-destruction, the author was rescued by a friend.
Cycling down the center line toward self-destruction, the author was rescued by a friend.

Our ninth wedding anniversary–this past September twenty-first–almost passed without us noticing, until Facebook–of all places–reminded us. Mostly I felt bad because it meant I’d forgotten my brother’s wedding anniversary to his wife, on the same date but a few years later. My husband, L., and I don’t do holidays and important anniversaries, birthdays, or things of that ilk very well. Lots of pressure is involved, and it may be that our wallets have naught but cobwebs at key times, but at least we try to treat each other kindly every day. We scramble to give the kids the Right Sort of Memories, and pay proper attention to the holidays kids make note of: Christmas, Halloween, Thanksgiving, Easter, Independence Day, their birthdays. But it has always been hard, and has become harder.

Since October of 2013, I have been (well, allegedly, supposed to be) on some sort of reduced work schedule, first with an official Short-Term Disability for Psychiatric Cause. I was diagnosed with Major Depressive Disorder, Severe Anxiety, and Suicidal Ideation. This left me with forty-two days to “get better,” according to the officials in charge of such decisions. But even with frequent visits to a psychiatrist and a bevy of pharmaceuticals tried . . . rejected . . . replaced, and accepted, I have only gotten worse. I left my formal job and did what I knew I did best: hung my shingle as a full-time freelance writer. I had been getting work over the years in addition to my daily job, but didn’t realize that my functions had become so reduced that I was about to create my own personal hell, one that would lead me to something that in turn resembles dementia, or agoraphobia, or a sort of amnesia that requires (on occasion) full-time care.

My psychiatrist had told me in no uncertain terms that “mothers don’t commit suicide. That is a selfishness they do not possess. It is extremely rare. Who do the children turn to when they are hurting? When they are sick?” He paused, looked at me with a stern expression that I didn’t feel that my rolling tears deserved: “THE MOTHER.”

I kept silent. For years before the recession, I had been a very high-earner, traveling across the country with a competence that leaves me breathless in retrospect, standing in front of decision-makers wearing a lapel-mic, convincing them to spend tens, even hundreds of thousands of dollars. Then I’d make my way home again, heels clicking through the airport, on the phone with my executive assistant telling him to please never book me into that particular hotel chain again, and didn’t he get the message that I had needed a mid-size, and not an economy car rental? I would sip from my expensive coffee beverage and sigh, readjust my laptop bag that was digging into my shoulder. And my husband was the one at home, tending to the children . . . contrary to my psychiatrist’s retrograde presumptions, their primary caregiver.

And eventually, after a year filled with a truly marked amount of personal and professional devastation, disappointment, and abject failure, I turned a corner and went somewhere I’d never gone before, and it changed my relationship with my husband . . . forever, I think. One night towards the end of this past summer, while trying and failing and trying and failing to win the bids and land the gigs I needed to hold up my teetering end of the financial see-saw so we would just balance, I lost my mind. (My psychiatrist called it a “psychotic break,” but I had thought–still think–that’s an outdated descriptor. But never mind. I don’t even bother to look such things up anymore.)

I had been surrounded by under-scheduled and over-stimulating children 24/7 in a messy house crowded with visiting neighbor-urchins and not enough bananas and yogurt tubes to go around, trying to earn my hourly minimum in the nightgown I’d been in for days . . . week after miserably-hot week, with nothing to show for it but unpaid bills and vitriolic calls from creditors. So on this one night, I was urged by my loving husband (rightfully so) to clean up, get dressed, and move my work location to my favorite café. I saddled up my bike as the sun set (we have long since had no car,) and after an initial burst of inspired relief, I remember it going just as it had been, at home. I rocked back and forth in my chair and cried right there in the café.

The “content mills” where freelancers often turn for work were filled with a sea of foreign candidates who would write for so little! almost nothing! that I would lose bid after bid. I remember beating my head with my fists. (I had stayed up all night at times during the summer, sifting through these sites where writers ostensibly got work, and yet I could not penetrate this brick wall.) And we were in danger of eviction, losing utilities, losing our phones and Internet connectivity and everything we needed. Any moment I spent “tending to myself, taking time for me,” was a direct arrow into the slowing beast with a wounded gallop that was my family’s survival.

I have an aunt who had an aneurysm that changed everything about her; that’s the only way I can describe the way I felt when I came to a conclusion that seemed so obvious! So completely workable! Worth celebrating, even! And I can see, looking back, that this is where I lost my role as a partner to my husband and became what I feel is an albatross, although he would deny it to the ends of the earth. I left my purse in the cafe, because I knew I wouldn’t be needing it anymore. I got on my bike in the darkness, this time leaving my helmet and bike light off. I texted my husband a giddy goodbye, which is the only reason I am here to write this today. I said things like, “I am Leaving! Everyone will just know it was an accident. I fail at everything! You see? The children won’t feel left! They will grieve, but it won’t be the same! Oh, I’m so happy. I am so happy!” And while finishing these texts, I rode my bike out into the busiest, most dangerous thoroughfare in our area, straight down the middle, into the oncoming headlights.

All I remember is this: the feeling of overwhelming peace, relief, release, and genuine happiness. I shudder at the memory. And in those moments–Five minutes? Ten?–I could see bits of myself leaving, like silvery sparks out and up, to circle in orbit forever. I took delight in each part of myself that Left. I remember laughing at the sheer joy of it. I was Leaving. I could even see it! And the cars honked and pulled aside, voiceless mouths shouting angry epithets I could not hear nor interpret. They Didn’t Understand. I had to Leave.

My husband is a man of action. During our courtship, he would lull me to sleep on the phone by reading segments of some (military?) survival guide. This is a man who would rather see me in sensible shoes and a leather tool-belt than in lingerie. Prepare. Prepare for life to get a lot worse, be it socio-economic collapse or (semi-jokingly) a zombie apocalypse. He wisely sent an avid cyclist friend of ours, fit and slim as a whippet, one of my best and most calming friends, to come after me: C., who told me, “Hey, hey. Let’s go park our bikes and talk. Where’s your purse? Do you have your bike lock?”

And I looked right at him with a smile and said, “It’s all right. I’m safe now. I killed Her. She had to Leave. She’s gone now.” And he asked logical, quiet questions, like, “Well, who am I talking to, then?”

“A shell. I left one behind to Take Care of Things. Because SHE wasn’t doing it right. So she had to Go.”

And thus began episodes of what I later learned is “depersonalization.” And it doesn’t happen every day. I have clues as to when it will kick in, usually after an episode of great anxiety: my vision changes in subtle ways; the world looks like shards that don’t connect. And I know She is gone and what is left is the shell. And I text my husband, “help.” And he knows how to recognize it. He can spot the staccato speech patterns, the repeating of names, the strange narration I give to my activities. And I have what my “shell” self calls “Minders:” mostly church-affiliated folk who will sometimes give me days of constant care, remind me of basic tasks I need to do. Because a simple flat bicycle tire will throw me into a morning panic of how to get the kids escorted to school. And I might find myself in the grocery store in tears, saying, “Why am I here?” And my husband or another “Minder” will have to ask me what aisle I’m in, tell me to turn around and look for the bread that we “always get,” and I will cry more because I don’t know what that is.

I don’t know why my brain chose this path to take away some of my . . . grief? stress? PTSD from an abusive childhood? All the stressors of tending to a family of five post-Recession? All of it coalescing and becoming too much at once? But it is so hard to feel disembodied from the person you know you are, and to feel like you are a remnant left behind until things get better. I have learned to hide the symptoms better, and have found that providing comfort and solace to others reduces them.

And sometimes I resent my husband because he is able to relax and have fun–especially with our children, who of course have made note of the changes in me, as much as I try to hide them–and I have to live in this . . . this . . . partial existence. This self-invented answer to the non-solution of suicide. But then I think to myself: my poor mate, he doesn’t know what he’ll come home to. He has to care for someone so broken right now that she has put part of herself away for Safekeeping.

A Whirlwind Tour of Six ALS/MND Sites

September 28, 2014 by Marylee MacDonald

The Ice Bucket Challenge raised money and consciousness about ALS, also known as MND (motor neuron disease). Let’s hope the money will help researchers unlock the secrets of ALS, one of a family of neurologically-based illnesses that we would all be happy to consign to the dustbin of “formerly lethal diseases.”ALS is only one of a host of neurological diseases. Finding a cure for ALS may lead to a cure for similar diseases, such as Parkinson's and Alzheimer's.
If you’re curious about how your Ice Bucket Challenge money might be spent, have a look at six centers that are trying to make the breakthroughs those with the disease so badly need. These are legitimate research centers doing clinically validated trials or providing info on where to find such trials.
There are some quack operations out there, places to spend a lot of money for zero result. If anyone is thinking about seeking out one of these treatments, please have a look at the link on the MDNA, Great Britain website. It talks about alternative treatments and clinics that claim to cure the disease or slow its progress. Other national centers also provide info on clinical trials.

ALS TDI (ALS Therapy Development Institute)
Nonprofit organization funded and run by ALS families. Located on Boston, MA. Specializes in fundraising events and in a variety of therapeutic approaches based on genomics and biomarkers. Here’s their web page listing various clinical trials. http://tinyurl.com/nvmxao6

ALS SLA Canada
Canadian organization that coordinates fundraising for research and that provides info for Canadians and their families. For clinical trials in Canada, go here. http://tinyurl.com/l29u2vr They also link to the Canadian Neuromuscular Disease Registry (CNDR), a means by which researchers can connect with ALS patients and their families in order to better understand various aspects of the disease. Their website has a valuable overview of the various research initiatives underway to try to find what causes the disease. http://tinyurl.com/nreyyrt They also have a page that lists the top Canadian ALS researchers.

MNDA (Motor Neuron Disease Association) Great Britain
One discovery I made on their website is a link that talks about unproven treatments. This is such an important topic, and I haven’t seen anyone else address it directly.http://tinyurl.com/jwhksu8 Perhaps they’re attempting to alert the public because there are unlicensed clinics in Great Britain claiming that they can reverse the disease progression by injecting folks with stem cells. The MDNA has fact sheets about how to tell the difference between licensed and unlicensed clinics and issues to think about if you’re seeking alternative treatments, none of which have been clinically verified.

MND Australia
Australia’s MND Ice Bucket Challenge raised $2 million, and that’s going to be a great benefit for researchers down under. Though Australia is a bit off the beaten path for North Americans and Europeans, their website has a page that links to research news both within Australia and in the US, UK, and Canada, and that’s of great value. http://tinyurl.com/phax4fj They have links to various clinical trials going on in Australia and New Zealand. This link is good for other diseases besides ALS/MND.http://tinyurl.com/qxlbr32

ALSA’s Research Arm: NEALS (Northeaset Amyotrophic Lateral Sclerosis Consortium)
For those newly diagnosed with ALS, a good place to look for research trials that match with your type of ALS (familial, sporadic, and other types) a great place to look for research trials is here.http://www.alsconsortium.org/search.php What’s good about this site is that it shows which trials are actively recruiting participants and which are closed, but may be open by invitation only.
Check the webinars page for real-time events about treatments like the Diaphragm Pacing System and Q & A’s about clinical trials. These webinars are terrific. I listen in whenever I can. They allow anyone to ask questions about late-breaking news and research. Past talks are archived.
http://www.alsconsortium.org/educational_webinars.php

RMN (Research Motor Neurone) Ireland
Researchers at Trinity College, Dublin are actively involved in finding a cure for ALS and in supporting families struck by the disease. 1410772018_Orla Hardiman Professor of Neurology Trinity College Dublin-1 In an inaugural lecture for the new neurology institute, Professor Orla Hardiman said that Ireland provides a unique research opportunity to study the role of genetics and make comparisons with similar, but more genetically diverse populations, such as Cuba. Ireland also has been a leader in developing multidisciplinary treatment centers, a topic that was popular at last year’s ALS/MND conference in Milan. Read more here.http://tinyurl.com/kg8fn7y

A Promise Is A Promise

September 19, 2014 by Marylee MacDonald

Guest Post by Margaret Spence

My mother Ruth was sixty-nine when Alzheimer’s began its leisurely, vicious, search-and-destroy ransack of her brain. My father cared for her, more or less by himself, for the next ten years, until he was diagnosed with cancer, and died in five short months.

For a long time Dad denied there was anything seriously wrong with our mother. He began to cut up her food, reminding her to eat. Retired, he took over the household tasks with some relish at first, discovering a love of cooking. He made syrups of orange and lemon. Strips of lavender, wrapped neatly in bows of string, began to appear in the linen closets. Letting my mother lose control of the house, he seemed to discover another creative part of himself. For a time, his new delight in housekeeping allowed him to deny that she could no longer do the simplest tasks. When he woke up one winter night and found her no longer next to him, he roamed the neighborhood in terror. He found the next morning. Staring glassy-eyed at the house in front of her, she stood in the frozen dew.

The author's mother Ruth in the 1950s
The author’s mother Ruth in the 1950s

After the diagnosis, I went to social services seeking help. They mentioned a day care program for Alzheimer’s patients, and Dad and I went to visit. A dozen or so elderly people sat in a circle and tossed a ball from one to the other. The director of the program, in thick foreign accent, explained that it was social time and also occupational therapy. My father was silent in the interview. Later he told me, “Your mother has a master’s degree! She won’t want to be with those people.”

Of course, he never asked her opinion, and she was far beyond giving it. And so, even though by this time my mother was further gone than the patients in the day program, my father insisted she stay home so he could care for her. He did rely on the kind woman who came to clean once a week, and remembered her in his will.
It was an achingly lonely life. Friends fell away. At night, after he’d put my mother to bed, Dad would watch television, a bottle of whiskey by his side.

Dad often said our mother was cheated of the last ten years of her life. He meant he was, as well. His devotion to Mother astounded people, and he took pride in it, I think. But I wanted him to find to find a place for Mum. A place close by so he could visit her every day, all day if he wanted, but could keep his own home as a place of refuge.

I wanted my father to give the rest of his family some of himself. His four children. His twelve grandchildren. To sell the big old house and buy a small one, so my brother could look in on him every day and I could come and care for him on my visits home. But my father always refused. Perhaps, at the beginning of the disease, my mother had begged him not to “put her away” and he had promised. He was nothing if not honorable, but honor could not save his own life or his wife’s.
Margaret Spence

Has Caregiving Silenced You?

September 13, 2014 by Marylee MacDonald

When I opened YOU WANT ME TO DO WHAT? Journaling for Caregivers, I felt that I had been invited to join a circle of intimate friends. There’s a voice to this practical and inspirational guide that made me immediately trust that the book would lead me some place special. I contacted the author, B. Lynn Goodwin, and asked if she could tell me more about the book and how it came to be.
You Want Me to Do What?

MM: The book encourages caregivers to put on their own oxygen mask first. How did that image come to you?
BLG: I’d love to tell you it was original, but the truth is that Sybil Lockhart, who wrote a memoir called Mother in the Middle, suggested it to me. The minute I heard it, I knew she was right. She was a caregiver for her mother, and you might want to check out her book as well.

MM: Caregivers are often advised to take care of themselves. I had people tell me I should get my nails done or go to a day spa. That’s often not possible, given a caregiver’s day-to-day responsibilities. Can you explain how this book could help caregivers who can’t leave the house?
BLG: You can write about fantasies as well as frustrations. Let your writing go where it wants to go, without worrying about structure or form. Let your mind skip around. You’re getting to what you really want to say, and you may not know what that is when you start.

MM: Do you think that something about caregiving turns caregivers into “voiceless” beings?
BLG: It depends on who you are and who you care for. It depends on how badly you want to please the person you’re helping and how open that person is to your ideas. It’s hard for an unmarried daughter to parent her mother. It can also be rewarding. Sometimes it’s simpler to be “voiceless,” but if it’s turning you into a child or an emotional wreck, you need to reclaim your voice. Writing helps, because a journal doesn’t interrupt.

MM: The open-ended prompts lead readers gently into rooms they might not have occupied for quite a while, namely the rooms of their own legitimate needs and feelings. How did you choose these particular prompts?
BLG: I’d used some of them with my free writing group, the one Sybil Lockhart is in. Others came to me as sentences I’d like to finish or sentences I needed to finish. For several years I used sentence starts to help my tenth grade students journal, so I knew they worked in an open-ended way. If a sentence start doesn’t work, look around the room for any sensory image, like the dull drone of a commercial blaring from the TV in the next room. Start there, and see where it takes you. Make leaps. Or comparisons. Or let your mind take you into unknown territory.

MM: One section I particularly like is called “Thoughts About Reclaiming Myself.” This struck me as an extremely wise section. It suggests a future. It suggests that life will get back to normal. Do you think the prompts here are good ones for people who are still caregivers?
BLG: Absolutely. I am living proof that life will get back to normal. I shut down my world to help my mother. When I reopened it, I found new paths. Writing helped me imagine a future and kept me from feeling like I was trapped in an endless loop.

MM: Can you say more about the benefits of writing for fifteen minutes a day, the time frame you suggest in the book?
BLG: Writing for fifteen minutes can clear your mind. It’s like erasing a white board. Once it’s clear, you start again. You let go of what was there (the obsession du jour) and you start fresh. You process. You have enough time to complete a thought but not so much time that you feel the process will never end. If fifteen minutes doesn’t work, try ten or twenty. Write enough to get your thoughts out, but leave yourself wanting more. If you’re eager to share a journal entry, feel free to send it to me at Lgood67334@comcast.net. I’ll tell you what’s already working in the writing. If you ask for help, I may be able to guide you to resources.

MM: Is there a reason for recovering caregivers to use your book after their loved one is gone?
BLG: Once your loved one is gone, you have more time for reflection. It’s a great time to recall both good and bad moments. A relationship doesn’t end when a person dies. I wrote a letter to my mother yesterday while sitting in a restaurant where we used to eat lunch after she had her hair done. I’d just had lunch with my husband, whom I’d met ten years after she was gone. I had a lot to say, and the form opened me up so that I felt like I was talking to her. It was very freeing.

If you are a writer dealing with imaginary people, try letting your characters journal. Use the sentence starts in the book. I can practically guarantee your characters will become more three-dimensional.

B. Lynn Goodwin
B. Lynn Goodwin

MM: What are you working on now?
BLG: I had a YA novel (young adult) called Talent picked up by Eternal Press. It should be out in 2015. I’m working on a memoir about getting married for the first time at age sixty-two. I continue to coach writers, and publish Writer Advice. Check out our latest interviews, reviews, and contests at www.writeradvice.com.

Thanks for this opportunity, Marylee. It’s been a pleasure to answer your questions.
http://www.facebook.com/blynn.goodwin.
http://twitter.com/Lgood67334

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Book title plus a snowy scene showing a mother and daughter walking up a hill in Vermont
If you like literary fiction where even the characters’ best intentions may not be enough to bridge the gap between them, you’ll love Montpelier Tomorrow.

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