Tag Archives: caretaking

The Dark Side of Caretaking

4 Jul

This entry will not be about gratitude, which indeed I have in abundance, but the other side of the story: the dark side of caretaking. I am grateful for many things and fortunate in many ways, but I have other emotions I need to express right now.

I decided to share because something happened lately that made me think that, since I have been able to continue breathing, people think everything is okay and that I’m happy. Maybe I make it look too easy. I am in fact very unhappy. While it’s true that I am able to compartmentalize so I can enjoy myself when I’m with friends, mostly I’m alone; and during those times I must make a tremendous effort not to let my negative feelings rise to the surface. I have to fight every day to keep from feeling, alternately or in various combinations:

  • ConflictedIMG_8152
  • Conflicted
  • Constrained
  • Trapped
  • Overwhelmed
  • Terrified
  • Anxious
  • Guilty
  • Resentful
  • Remorse
  • Sorrowful
  • Depressed
  • Angry
  • Lonely for male companionship
  • Sexually frustrated
  • Bored
  • Abandoned

It takes so much energy to fight these feelings, daily and sometime simultaneously. For instance, when I look at Chuck sitting there in front of the TV day after day, I feel an enormous well of sorrow start to rise in me. Sometimes I almost hate him because he is the reason I feel trapped and constrained. Then I immediately feel guilty and remorseful. I feel conflicted almost constantly because many of these feelings are at odds with each other or with the fact that I love Chuck and hate having negative feelings about him.

I know that I’m suppressing, as opposed to repressing; I am aware of the feelings, just not expressing them every time I feel them, which could consume my life. I know suppressing is not healthy for me because those feelings are going to leak out some way or other, and they do: almost every night, I wake up in the middle of a full-blown panic attack. Sometimes I remember the dream that provoked it; sometimes not. Last night, I did: it was a prolonged and horribly graphic nightmare about my late, beloved Rudy. He had significance beyond being an exceptionally great cat; after Chuck’s stroke, Rudy was my sole source of consistent physical affection, which I miss and crave.

I feel like I’ve been widowed for the 11 years since Chuck’s stroke but that my mourning has continued. There’s been no closure; it just grinds on and on. The inability to move on and bearing the responsibility of a stroke survivor are wearing me down. I guess I feel abandoned in the sense that I feel people forget to acknowledge this unless I remind them. I imagine (although perhaps wrongly) that many people are ready for me to move on, when in a very literal way, I cannot.

I could continue, but I think this message delivers the information well enough. I guess all I would ask is try to understand and acknowledge the unchanging nature of my predicament. It still hurts, I just bear it better and am able to compartmentalize it in order to have fun occasionally.

I would like to add that I do deeply appreciate the various and overwhelming kinds of support given me: the recent funding drive; surprise gifts; cards, calls and visits–especially Susie, who comes three or four times a year. Especially I appreciate that fact that Lisa, now living one door over, helps with shopping, preparing meals and cooking and is available any time for emergencies big or small. Having the consistent, sustaining source of her help has made a tremendous difference in my life.

If you would like to read more about my experience of caretaking, please check out my book, Stroke Happens.


A Plea for Help

17 Apr

On August 31, 2007, my husband Chuck and I woke up and life had changed, overnight. He had suffered a massive stroke. I called 911 and he was rushed to the hospital, where he nearly died, twice; first, from the original event, which deprived his brain of oxygen; second, the next week when the clot burst loose and flooded his brain with blood.

He was in the hospital and rehab for seven weeks. When he came home, he was unable to walk, bathe, use the toilet or dress without my assistance for six months. We continued therapy for the next year—including a trip to the University of Michigan Aphasia Program for intensive speech therapy—an arduous and exhausting process for both of us.

While his leg became strong enough for him to walk with a cane, and he learned to bathe, use the toilet and dress himself, he still has extreme limitations. He has no language; and by that I mean he cannot talk, read or write, and has trouble comprehending the spoken word. His right arm is permanently paralyzed. This man, a former professor of education for a major university, was transformed into a silent homebody who spends his days watching television.

I am his only caretaker and have no resources designated for that purpose and no sustained, consistent help from family. I am unable to work fulltime because 1) there are no jobs that would pay me enough to make it worth hiring help for Chuck and 2) I’m almost 60 and am getting passed over for younger candidates for the fulltime jobs that would pay me enough.

Chuck receives Social Security Disability Income, not enough to make expenses. I work part-time as a writer and a dog trainer, but these are not reliable sources of income. I have written two books, one of which I self-published on Amazon (Stroke Happens: A Caretaker’s Memoir) but which lacks national distribution or advertising and so did not bring in much money. The other was from a regional press, and I only received 7% of what little profit was made by the publishing company.

Neither of us have trust funds or inheritances. We have therefore had to draw from Chuck’s once healthy retirement fund—which, before the stroke, would have taken care of both of us for the rest of our lives after retirement—which has fallen to $10,000. When that is gone, which will happen in less than a year, we won’t be able to make our monthly expenses.

At that point, I am afraid I will have to face a difficult decision; that is, sell our house, place Chuck in a nursing home, and move in with someone while I try to find some kind of income.

Keep in mind that for more than ten years I have taken care of this man, who otherwise would have been a burden on the taxpayer as a Medicaid recipient. I have gotten no compensation and in fact have lost ten years of income (I was a college English instruction) and investment into my own Social Security fund.

Because we don’t have a savings account or emergency fund, I have had to use our only credit card to pay for such things as a new heating-and-air-conditioning system; two pulled teeth and bone implants (I have not actually replaced the teeth because I can’t afford it); and the trip to Michigan Aphasia Clinic. We are very close to the limit of $26,000 and I refuse to get another credit card. I am asking for help in paying off this debt. If you would like to contribute, please go to https://www.gofundme.com/helpstrokesurvivorchucklinnell.

Some people might my request impertinent. I would argue that Chuck and I have had extremely bad luck and that, through no fault of our own, found ourselves in a situation the horror of which is almost impossible to describe. I would not wish it on my worst enemy. I have done my best to make Chuck happy and comfortable and to do whatever it takes to keep him at home. I would like to continue to do so, but the burden of debt is crushing and I fear it will destroy us. Having one huge expense disappear would be such a relief, and so I am hoping some compassionate people will help us out and contribute to our fund. Thank you and God bless.

Update: a few days after I posted my plea for help on GoFundMe, Chuck fell and broke his arm. We were in the ER from 10pm (Friday the 13th!) until 6am Saturday.


Featured in Local Paper

2 Dec

I am excited to say Chuck and I were featured in our local paper! Article below by Jason Evans, who did an excellent job.

CLEMSON — Like most married couples, Laura Garren and Chuck Linnell like to rib each other and chuckle at the inside jokes that come with any long relationship.

Their relationship was radically redefined in a matter of seconds in 2008, when Linnell suffered a catastrophic stroke at the age of 56.

Garren recently self-published “Stroke Happens: A Caretaker’s Memoir,” a book chronicling just how their lives changed in the aftermath, as Linnell began the recovery process and Garren navigated their new reality.

Garren discussed the book during a signing the pair held at Nick’s Tavern last Saturday afternoon. An odd place for literature, the Clemson tavern is a special place for the couple — it’s where they first met.

Before his stroke, Linnell taught at Clemson University as an education professor. He was well thought of by his students, so much so that a piece of graffiti on campus once read, “Dr. Linnell rocks!”

“He used to be a great talker,” Garren said. “He could tell some great stories.”

The stroke robbed Linnell of his ability to speak.

“He knows what’s going on, he just can’t express with any language at all,” Garren said. “It’s hard not being able to have conversations. It could have been worse, though — he could have been too disabled to be able to come home.”

Garren wrote the book in the hopes that it would help others.

“(I hoped) it would help other people who were in my position because I had tried to find books written by stroke survivors or people taking care of stroke survivors and there wasn’t that much out there,” Garren said. “I wanted to get it out there because maybe it could help some people.”

Strokes can happen to anyone at any age, even to people like Linnell, a very fit, seemingly healthy man who had no risk factors, according to his doctors.

“He had no warning signs,” Garren said. “Warning signs, that’s what saves people. Anything happening just on one side of the body — droop, paralysis, weakness, a one-sided, really bad headache, if the person suddenly has trouble speaking or understanding speech.

“Anything that’s going on one side, don’t wait to call 911, because time is brain,” Garren continued, alluding to the damage that can rapidly occur during a stroke.

It wasn’t Linnell’s first brush with death. He was in a car accident decades earlier that left him in a coma for weeks.

But his survival at that time came with a cost later.

“It wiped out a lot of real estate,” Garren said. “He didn’t have as much to compensate with as he would have had he not had that first accident.”

A writer and teacher, Garren quit her job to take care of Linnell.

The book draws from emails Garren wrote to friends and family in the early days after Linnell’s stroke and beyond.

“I didn’t really remember a whole lot that had happened because of the trauma, medical post-traumatic stress,” Garren said.

“Those emails generated a lot of support and built community for us. So I referred back to the emails because then I could read them and chart the progress. That filled in some blanks for me,” she said.

The book details the therapy Linnell went through to get back on his feet. Garren had to navigate the confusing, often frightening medical bureaucracy on behalf of her husband.

One idea to get the book out into the community is to leave copies in therapy facilities, Garren said.

“Maybe somebody who needs to read it, and should read it, will read it,” she said. “They can connect and see, ‘Oh, somebody else has gone through this.”

Writing the book became a borderline obsession for Garren, she said. Though a few publishers turned her down, she pushed forward with the memoir.

“I would sit down and write three to five hours, five days a week,” Garren said.

The first draft was completed in about three months.

The book’s subtitle, “A Caretaker’s Memoir,” reflects on her feelings about the situation she was thrust into.

“Caregiver feels more voluntary to me,” she said. “I was forced into this position, and although it was a choice to stay with him and take care of him, it didn’t feel like a choice.

“So I decided I was going to continue to call myself a caretaker because something was taken — the marriage as it was,” Garren continued. “The life we had, the things we had planned — all of that changed.”

Her book describes her process of coming to terms with what happened, not only to her husband, but to herself.

“He probably handled it better than I did,” Garren said. “He’s a trooper. I’ve rarely seen him lose his temper or get upset.”

The book features drawings by Linnell throughout. He added drawings beneath Garren’s signature during the book signing.

“He was always a good sketch artist,” Garren said.

The book also serves as a way to thank all the people who have helped the couple during their transition. Garren writes movingly of the support that surrounded her and of the isolation she felt at times while caring for her husband 24/7. Friends raised more than $10,000 to allow them to travel to and stay in Michigan in order for Linnell to be enrolled in an intensive therapy program.

“I wanted to sort of acknowledge them and thank them,” Garren said.

The couple also drew support from their four-legged friends, many of which are described in the book. One dog even visited Linnell in the hospital soon after his stroke.

“Whoever I married was going to have to love dogs,” Garren said. “They’re real, real important in the narrative of our lives.”

At that, Linnell voices his agreement by imitating a dog’s howl.

Garren is now a dog trainer, becoming certified in 2012.

“I use my writing skills with that,” she said of the treatment plans she creates for her clients and their owners. She’s also teaching part-time at Clemson again.

“Stroke Happens” is available on Amazon, alongside her first book, “The Chattooga River: A Natural and Cultural History.”

For more information on the book, follow the “Stroke Happens” page on Facebook.

jevans@upstatetoday.com | (864) 973-6681

Follow on Twitter @citizenjason5


20 Mar

Strokenomics is a term referring to the situation you find yourself in if you or a loved one suffers a stroke and are forced to live within new means. Hopefully, you invested in a supplemental long-term disability. If you did not, I strongly urge you to do so. Chuck and I were on the verge of buying a policy when he had his stroke, and the difference in our disability income would have been as much as $3,000 per month. As it is, we live on his Social Security Disability Income, a standard long-term disability monthly payment that ends in 2016, and a monthly withdrawal from his retirement. The latter I hate to do, but it must be done in order to make our monthly expenses.

So it bears repeating: if you have not already done so, buy extra long-term disability insurance, which will provide much-needed extra income if you or your spouse become disabled or chronically ill. Furthermore, it will enable your or the loved one to be placed, should it be necessary, in a private healthcare facility as opposed to one run by the state; or offset in-home care, which can be very expensive but can greatly relief the burden of caretaking/enable you to be cared for in your home. Do it today, or you may be put in the situation in which I find myself, a full-time caretaker unable to work outside the home because hiring a caretaker for Chuck would reduce my hourly income to about $5.00.

Not to say that we are destitute. We are very lucky to live in a First World country and to have excellent health care and good, basic insurance. However, when Chuck’s standard LTD runs out, we will lose almost $800 per month, forcing us to dip deeper into his retirement fund. Unless, of course I can make my writing profitable, which I am working on. But if we burn through his retirement, and nothing is left when I’m retirement age in 15 years, what will we, or I, live on? Chuck is 11 years older than I, and his health is somewhat comprised by his disability, so chances are I will outlive him. I haven’t been paying into the Social Security system since I began caring for him almost seven years (2393 days) ago. In addition, having worked erratically and, as a writer and a teacher, never having made a big salary, what I will draw most likely won’t cover all my expenses. I have worried myself sick over this imagined future until I finally forced myself to let it go. I’ll do what I have to do, when I have to do it.

Meanwhile, I have found ways to economize, and I thought I’d share in case anyone else in a similar situation might benefit from my ideas. Strokenomics may be used by anyone who wants to cut corners, by the way. Also, I’m sure I haven’t thought of everything; so if you are reading this blog and have some ideas, please leave them in a comment.

First, I buy 95% of my clothes (and household items such as glasses, pots and pans, etc.) from thrift shops. Even if I could afford to buy new clothes, at this point I don’t know that I would (unless I win the lottery, my secondary plan): why would I want to pay $30 for a blouse that I can get for $4 at a thrift shop? An additional benefit is that I’m not supporting outsourcing, and my carbon footprint may be reduced by about 10%, according to Patrick Barkham in an article, “10:10 Fashion: Can I Give Up Buying Clothes for a Year?” in the on-line version of “The Guardian.” I draw the line at shoes, however, because I am squeamish about wearing someone else’s footwear. However, I save money by purchasing shoes on sale, getting them at about 40% off.

Giving up meat will reduce the grocery bill, as well as lower your carbon footprint and diminish cruelty to factory-farmed animals. According to a study conducted by the Environmental Working Group, “Lamb, beef, cheese, pork and farmed salmon generate the most greenhouse gases. With the exception of salmon, they also tend to have the worst environmental impacts, because producing them requires the most resources – mainly chemical fertilizer, feed, fuel, pesticides and water – and pound for pound, they generate more polluting manure.

“On the health front, the scientific evidence is increasingly clear that eating too much of these greenhouse gas-intensive meats boosts exposure to toxins and increases the risk of a wide variety of serious health problems, including heart disease, certain cancers, obesity and, in some studies, diabetes.” For more information, including a chart detailing the Full Lifecycle Greenhouse Gas Emissions from Common Proteins and Vegetables, please go to http://www.ewg.org/meateatersguide/a-meat-eaters-guide-to-climate-change-health-what-you-eat-matters/climate-and-environmental-impacts/.

Sometimes I feel I’m being nickled and dimed to death. In these cases, I have learned to reciprocate. For example, I recently dropped a couple of movie channels, lowered my Internet speed and reduced my phone (landline) features for a net savings of about $50. I don’t own a cell phone (that’s what I said), so there’s $30 or so.

Some other means of saving include:
Eat out less.
Wait until the movie comes out on DVD.
Lower your thermostat a couple of degrees by day and even more by night.
Recycle paper you use for the printer by using the other side for drafts; or rip them up and use to jot down notes or lists.
Sell stuff you don’t want on eBay.
Cut coupons for groceries.
Look for bargains or two-for-one sales.
Buy secondhand furniture from consignment stores.
Buy a used car, or at least a low-mileage or hybrid vehicle.
Don’t get another cat! Or dog: pets are expensive. One, or one of each, is enough.

Finally, buy lottery tickets. (Just kidding! Sort of. But don’t spend too much on these. Besides, the fewer people who buy, the better my chances of winning.)

As I mentioned, I’m sure other ways exist to employ strokenomics. Please let me know if you think of any. And while I hope you don’t have to implement a strokenomic plan, good luck if you do!

Take Care of the Caretaker

26 Nov

I’m working on a manuscript I wrote about Chuck’s stroke and my experience as his caretaker. It’s called, not surprisingly, Stroke Happens. Today’s post is an excerpt I hope illuminates the fear of being forgotten, the fear that caretakers feel once the crisis is over and people start to move on:

“About this time, some people congratulated me for being so strong, even though I felt as fragile as a hummingbird’s egg. I suspected they were just trying to make themselves feel better, or that they wanted me to move on. What they didn’t understand is that time stands still when you’re dealing with a long-lasting chronic illness or permanent disability; sustained, consistent help is needed for months, sometimes years. I still needed help and was terrified that people were going to abandon me. My response was to write a blunt, almost accusing, email.”

After which I received a slew of support and offers of help.

My points are: if you are a caretaker, ask for help when you need it; if you know a caretaker, offer help on a consistent and ongoing basis.

Should I Stay or Should I Go?

25 Nov

I can see why some spouses leave their stroke survivors. They can’t live with the idea that the person they married has been replaced by a disabled person who needs full-time care. I felt staying was my only option; if I left, Chuck would have to be institutionalized, which I couldn’t bear. In short, I stayed not because of the great love I felt for Chuck, but because of my feelings of empathy and compassion.

I did love, and do love, Chuck. However, since I became his caretaker, the nature of that love is different. I can live with the changes that have occurred in our relationship since Chuck suffered a stroke and became disabled. I’m sure some people cannot, although I don’t know of any studies that indicate a higher rate of separation in the aftermath of stroke. It’s hard to have to redefine a marriage and to let go of certain hopes for the future.

Funnily, before Chuck’s stroke I used to be very judgmental of people who left spouses who got sick or disabled. I thought, “I would never do that.” Even though I was right, being put in that position made me more understanding of people who choose to leave. Ultimately, they have to live with themselves over their decision, and I can imagine how painful it would be.

I “decided” to stay, although it was not a moment in time. It was more of a realization that grew as I started to accept the fact that Chuck always would be without the ability to speak, read or write. As he is trapped by his disability, so am I, although in a different way and voluntarily. I sometimes try to imagine being free, what I would do with my life, where I would go. My longing for freedom sometimes is so intense that it’s painful. But I know that the pain I would cause Chuck, and the guilt I would feel, outweighs my desire to be free. So I stay.

I admit these very personal feelings because I suspect other people have them as well, and I want to say, “It’s normal.” I also want them to know that while the caretaking life has meaning in itself, it’s doesn’t have to define them. In my next post, I’ll relate how I was able to find fulfillment while still being the caretaker for my stroke survivor.

Stroke Happens: A Resource for Survivors, Caretakers and Loved Ones

13 Jun

Welcome to Stroke Happens, a resource for anyone who has been affected by stroke. If you are a stroke survivor or a caretaker, like I am, or if you are a loved one of someone who has suffered a stroke, I hope this blog will provide you with information and inspiration.

Stroke happened to me August 31, 2007, when I woke up to find my husband, Chuck, mute and paralyzed. He went to bed himself and woke up a different person, in effect. Although I didn’t realize it at the time, we had started out on a journey that would prove to be painful, arduous, and frustrating.

Along the way, I learned many things only after I really needed the information. My goal in this blog is to provide answers to questions that the reader hasn’t asked yet. I want other stroke survivors and their caretakers to avoid the obstacles I faced. I also want to offer support to those who are dealing with stroke and its aftermath, to show that happiness is possible even after the most dramatic losses imaginable.

I hope you will find this website informative, entertaining, and helpful. Thanks for reading.

Laura A. Garren

Self Portrait. By Chuck Linnell

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