The Cost of Caretaking

1 Jul

I awake exhausted, barely able to get out of bed. Everything hurts. Spasms roil through my gut. Still, I must get up and take care of Chuck, because who else is going to do it? I don’t feel that way every day, but in the course of the last year, I have suffered bouts of increasing frequency and intensity. When I do, I can barely function, another challenge on top of an already challenging life.

For years after Chuck’s stroke, I was miserable. At some point, I finally accepted reality and decided to change what I could, which was my internal landscape. Being unhappy is easy, because doesn’t require any work. Not being unhappy, however, takes work, and I have invested tremendous effort in the endeavor. I am pleased to say that I have largely managed to succeed. However….

My health was compromised due to the years of extreme stress. I suffer several debilitating autoimmune disorders: Irritable Bowel Syndrome (IBS), a chronic condition that causes painful spasms in the small intestine; fibromyalgia, which causes widespread, chronic pain, fatigue, sleep and mood and cognitive disorders; and possibly celiac disease. Since the root of each is inflammation, one can trigger the others. Flare-ups can last for days.

I can manage my symptoms, to a degree. Controlling stress is paramount, because it can trigger flare-ups. I maintain a very restrictive diet, which entails avoiding certain “trigger” foods that contain FODMAPs. These include a wide variety of fruits, vegetables, sauces, dressings, mixed spices, bread, cake, cereal, crackers, pasta, almost any processed food and many more. I willingly forego eating what I know will make me sick; the problem is that they often lurk in other, seeming “safe” foods. One slip and I am sidelined for days.

I know I don’t look sick, which is a problem with having “invisible” illnesses. In fact, I look very healthy: I practice cardiovascular exercise and yoga daily, when I’m not ill, and maintain a good weight. I eat well, and don’t smoke or eat meat. I’m sure many people who think it’s “all in my head” or who sympathize but don’t really understand how debilitating these conditions are.

My doctor, Doug, has been very helpful. He referred me to one gastroenterologist, then another. Neither addressed my concern, which was how to deal with the IBS; they wanted to order an endoscopy to “rule out celiac.” I, having researched extensive research on IBS, requested a test for Small Intestine Bacteria Overgrowth (SIBO), but both GI doctors dismissed that idea. I declined the endoscopy and got a home kit to test for the SIBO; it came back positive.

Doug then put me on Xifaxan, an antibiotic indicated for IBS that kills only the bad bacteria in the gut and that I had read about in the course of my research. After starting the treatment, I experienced four months, symptom-free. Then I got sick again. For two days, I was waking up exhausted and barely able to drag myself out of bed to take care of Chuck. My lower abdomen was seized with cramps and my body ached. I experienced extreme “brain fog.” In short, my illnesses compromise my ability to function, as well as perform my caretaking responsibilities.

Doug has referred me to the Mayo Clinic Gastroenterology Department, where I can consult with IBS specialists. However, the cost may be prohibitive: Chuck’s care, air fare, lodging, daily expenses and, of course, out-of-pocket medical costs. We live, just barely, on Chuck’s Social Security Disability Income, and I refuse to go into debt again after paying it all off last year. What little we had in savings has been depleted by some recent, major house repairs, and I hesitate to dip into what little is left, in case I need it for an emergency.

Being solely responsible another person is challenging enough without being sick. Plus, I have to think of the future: I’ll be taking care of Chuck indefinitely; I may have to (try to) go back to work someday. But how will I manage to hold a job if I can’t show up? My hard-won peace of mind is under siege. I want to feel and to be well, and I believe the best way for me to do so is to consult with the best doctors in the world.

If you’ve read this far and want to help, I’ve set up another Go Fund Me to defray the cost of the Mayo Clinic endeavor. Here’s an approximate breakdown of expenses:

Respite Care for Chuck: $1,000

Airfare: $500

Lodging: $600

Out-of-pocket medical: up to $3,000

TOTAL: About $5,000

If you are still reading and want to help, I have started a fundraiser.

I have always appreciated the deluge of help, in any and all forms, from those who support me and done so in a sustained and consistent manner for so many years. Your combined efforts have saved us on many occasions. By the way, the anniversary of our stroke, which happened 12 years ago, is coming up on August 31, one week after our 23rd wedding anniversary.

Thank you for reading.

 

 

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But You Don’t Look Sick

13 Feb

 

I look perfectly healthy. However, I am not, nor do I feel, healthy. I have chronic lower back pain, as well as pain that flares up throughout my body for no apparent reason; arthritis in my knees; irritable bowel syndrome (IBS); fatigue and brain fog; and tinnitus. I also have suffered from depression for many years and have occasional bouts of anxiety, both of which are amplified by the physical ailments. I recently received a diagnosis of fibromyalgia, which explains a lot.

The fibromyalgia pain, and the unpredictability of my IBS symptoms (bloating, cramps, constipation, diarrhea, fatigue and brain fog) make it impossible for me work reliably. In fact, I recently resigned from a part-time job—where I the flexibility to go in whenever I wanted and work as few hours as I wanted. I was caught in a cycle: I would have a flare up, not be able to go in, become stressed because I couldn’t meet my obligations, and get even sicker as a result.

I have been under tremendous stress, which caused these problems, for more than a decade. My husband, Chuck, had a massive stroke 11½ years ago, and I have been his sole and full-time caretaker and healthcare advocate ever since. I also had to assume the responsibilities of running the household. While I just summed up my life in a few sentences, I could write a book. (Actually, I did. Stroke Happens: A Caretaker’s Memoir, is available on Amazon.) But what I’m writing now is not about being a caretaker, it’s about the health problems brought on by the stress I suffered as a caretaker. I suspect I suffer medical PTSD as well.

The stress was intense and unrelenting for several years as I struggled to get Chuck the healthcare and therapy he needed and to accept that he would never recover fully. Stress produces harmful hormones that in large doses can damage the immune system, causing all kinds of autoimmune conditions such as I have. Eleven years later, I am coping as well as I can; I fight every day to keep myself from giving in to fear or despair. I have managed to find meaning in what I do for Chuck, who will not get any more recovery but is happy and healthy otherwise.

However, I am sick, and I suspect some people find it hard to understand or sympathize with my complaints because I don’t look sick. I am 5’7’’, 150 pounds, and fairly fit due to years of exercise and practicing yoga. I eat well and am a vegetarian. Some people might think, “If you can exercise, why can’t you work? Why do you need to hire someone to clean your house if you’re able to do yoga?” Allow me to explain.

Working entails an obligation. You get paid to go somewhere for an expected amount of time and do something. If you cannot, then you fail to meet your obligations and to get paid. I am unable, at this point, to be obligated in this way. I am able to walk my dogs because I can do so on the days of my choosing and for as long as I am able.

Cleaning house is physically demanding and entails a lot of bending over and to the side; if I do so for more than five minutes, I have to spend the rest of the day in bed with back pain. So when you think, “Oh, it must be nice to have someone clean your house for you,” I say, “Yes, it is, but I would much rather be pain free and be able to do it—and so many other things—myself.” It is not, in short, an indulgence but a necessity. When I practice yoga, I work around my pain, assuming the poses my body will tolerate on a given day. Yoga has kept my physical condition from worsening and has helped strengthen the muscles that support my back and knees. Also, there is no goal, as in house cleaning; I don’t have to “finish.”

I have undergone physical therapy, as well as dry needling (similar to acupuncture) for the pain; these give temporary relief. I have taken what meds I can—having IBS limits my options. I feel I am doing or have done everything I can to address my problems. If a new and viable option presents itself, I will follow up on it.

I can assure you that having just one, let alone all, of these physical manifestations of stress is not convenient and makes my life even more challenging than if only dealing with Chuck’s. I’m not asking for anything except sensitivity and perhaps understanding, although emotional support is welcome. I also to share my experience with others who are suffering from any of these complaints or from just being a caretaker. Thanks for reading.

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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.

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:

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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.

 

 

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