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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.

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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

A Celebration and a Mourning

26 Nov

IMG_5811Yesterday, Chuck and I celebrated the publication of Stroke Happens by gathering with some friends for a book signing at a local tavern—where we met, actually. About 15 or so people showed up with their copies, which Chuck and I signed. I also had everyone sign our copy. Everyone had fun, some musician friends played, and I felt very grateful and humbled by the support. After getting home, my neighbor Lisa came over and we had a few more drinks and sat around the outdoor fire.

But what goes up must come down. At some point, an emotional storm erupted in me. I suppose it was about the past trauma of post-stroke life; but also anxiety about the future. I am petrified I won’t be able to continue to afford living as we have. I’m unemployed and in debt. Two tooth extractions—I haven’t even gotten new teeth but have two gaps where my back molars should be, one on each side—and a replaced HVAC system have put a serious dent in the finances. I struggle monthly to make ends meet and wonder how long I can continue, even as I hope for salvation in the form of a full-time job. (Or huge book sales.)

Normally I practice the teachings of Buddha, about letting go—of past regrets, future worries—but sometimes I am unable to do so. Last night was one of those times. I’m still working on it this morning. Or maybe I should say this mourning, because I am in this situation because of a loss—the loss of the man I married, who was my partner and who could at times take care of me when I needed it, as in today. Now I have to take care of myself, as well as of him. I’m doing the best I can, but it doesn’t always feel like it’s good enough.

Celebration and mourning. One coin, two sides.

 

 

Stroke Happens Now Available

7 Nov

I am pleased to announce that Stroke Happens: A Caretaker’s Memoir, is now available on Amazon in electronic and paperback forms. Here is a link to the latter:

https://www.amazon.com/dp/1973239167/ref=sr_1_2?ie=UTF8&qid=1510062251&sr=8-2&keywords=Stroke+Happens

Please share with anyone you think would benefit from reading. Here is the book description:

“When he was 56 years old, my husband, Chuck, suffered a massive stroke that nearly killed him. Literally, overnight, our life changed. After almost losing his life, Chuck lost his speech and the use of his right arm and underwent months of hospitalization, rehab and therapy. Stroke Happens tells the story of his arduous journey toward recovery and my transformation from wife to caretaker. It’s a story of hope, despair, acceptance, and love; but most of all, survival.”

And the author photo:

Chuck and Laura.jpg

While I would rather it have been published by a press, I just could not break in. Oh well, maybe someone will discover me? It’s a pretty thought, anyway.

If you read it, feel free to send me your thoughts on it. And many thanks if you do either.

 

 

Stroke Epigraph

2 Nov

Waiting to hear if I will be able to use this poem, by my late friend John Stone, doctor and poet, as an epigraph for my manuscript.

Stroke

I imagine his bedroom
where he woke this morning
to find half his singing nerves
numb and silent

his tongue halved and pulling
the cold words cramping in his throat

half a world gone in each eye.

I dream
his darkened bedroom
where last night
his mind meshed
in its last unaltered thinking

where now
these work shoes
will unwalk
neatly
against the wall.

–John Stone

 

Coming Soon

25 Oct

After a long hiatus during which I have been engaged in various endeavors, I have decided to turn my attention back to Stroke Happens: A Caretaker’s Memoir, which chronicles the story of my husband’s stroke and my transformation into his caretaker. I am preparing the final draft to publish on Amazon within the next month, after recently realizing that I still want to share our story.

I took a long break from Stroke Happens after I finished the last draft and started trying to find a publisher. I queried at least 30; each time, I got a form rejection letter or no response. Finally, some nice editor actually took the time to write and tell me that, in all likelihood, no one would look at it unless I had a literary agent. I wondered, then, “Why do these publishers have submission guidelines on their websites if they weren’t even going to look at submissions?” (I still don’t have an answer.)

I had grown so frustrated by that time that I put down Stroke Happens and began exploring other creative (and money-making) avenues. I have been growing my dog-training business; writing a series of articles for South Carolina Wildlife Federation; working as a part-time writer for Clemson University; and, of course, continuing to care for my husband.

Although I have always had reservations about self-publishing, I realized I have nothing to prove, having already had a book published: The Chattooga River: A Natural and Cultural History (The History Press 2013, which can be purchased on Amazon). I started revising, yet again, and plan to have it up by November 22.

Stroke Happens will describe the journey of my husband and myself after he suffered a massive stroke in 2007, at the age of 56, and how we coped with the challenges that followed. I hope anyone who reads this blog, especially if you have been affected by stroke, will read it. It is a story of hope, recovery, acceptance, love, friendship, and much more.

Until then, I will be posting on this blog whenever time permits. Stay tuned for further developments! And thank you for reading.

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