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Taking Care of the Caretaker

1 Jul

Here’s what happens when I have a flareup of my IBS/fibromyalgia. I awake exhausted, barely able to get out of bed. Everything hurts. My gut roils. I don’t feel that way every day, but when I do I can barely function. I have suffered bouts of increasing frequency, intensity and duration since summer of 2018, and so have had to ramp up my efforts to find effective treatment.

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. I willingly forego eating what I know will make me sick; the problem is that triggers often lurk in other, seeming “safe” foods. One slip and I am sidelined for days.

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My doctor, Doug, has been very helpful. He referred me to two gastroenterologists,  neither of whom addressed my main concern, the IBS. Both wanted to order an expensive, invasive test to “rule out celiac”; I requested a test for Small Intestine Bacteria Overgrowth (SIBO), but neither would order it, so I got a home testing kit. The results were positive. Doug prescribed Xifaxan, an antibiotic that kills only the bad bacteria in the gut. I stayed fairly well for a few months, but my symptoms eventually returned. Due to the danger of resistance, repeated courses of any antibiotic are discouraged, so I had to consider other options.

Doug ended up referring me to the Mayo Clinic Gastroenterology Department (Arizona campus) where I can consult with IBS specialists. The cost of air fare, lodging, transportation, incidents and out-of-pocket medical expenses are high, but thanks to my wonderful support system, I have managed to raise funds for the trip. (I set up a crowd fundraiser through Go Fund Me.)

Thanks for reading and, to all who have helped me past, present and future. I couldn’t take care of myself, or Chuck, without you!

Best, Laura Ann Garren

 

 

I Don’t Look Sick

13 Feb

I don’t look sick, but I am. I have an invisible illness, fibromyalgia, which causes  intermittent pain throughout the body; arthritis; fatigue and brain fog; and, possibly, my tinnitus. I also have irritable bowel syndrome (IBS), depression and occasional bouts of anxiety. All are connected to each other and to stress.IMG_2054

Stress produces harmful hormones that in large doses can damage the immune system, causing a variety of autoimmune conditions, such as I have developed in the time that I’ve been taking care of Chuck since his stroke in 2007 (and about which I published a book, Stroke Happens, in 2017). The fibromyalgia pain and the unpredictability of my IBS symptoms (bloating, cramps, constipation, diarrhea, fatigue and brain fog) make it difficult for me work reliably.

My symptoms have been sneaking up for years, but suddenly increased in intensity, frequency and duration in the summer of 2018 after a particularly stressful personal interaction. I have submitted to dry needling, physical therapy, food sensitivity testing and other labs; I have sought medical help from specialists, but none in my are (South Carolina) were able to help me, so I have been referred by my general practitioner to the Mayo Clinic.

Meanwhile, I am learning to let go of the things I can’t control–in other words, most of life’s events–and control what I can–that is, my reaction to those events. I practice yoga and meditation; exercise; engage in a hobby (bowling); schedule time daily to “play” (spending time with my dogs in the backyard); eat well (I’m a vegetarian); don’t smoke; and am at a healthy weight. I get an occasional massage, which is one of the best therapies for pain because it suppresses the pain response and stimulates the release of serotonin and dopamine, the feel-good hormones.

Lately, I located a podcast, Like Mind, Like Body, which featured an interview with a doctor specializing in pain. Afterward, I ordered his book, Unlearn Your Pain, and have been reading the material, which includes worksheets and writing assignments. I also subscribed to an app, Curable, which offers meditation, brain training, expressive writing and education designed to help people recover from chronic pain. I can report a significant reduction in my pain since I started these regimes, and I highly recommend them.

My physical manifestations of stress make my life more challenging that it has to be. I’m sure I’m not the only caretaker–or victim of stress–who is suffering from such complaints. I understand how frustrating it is, and I hope that by sharing my experience, I can help someone else find a path to healing. Please feel free to reach out with your experiences with chronic pain, caretaking and healing.

Best, Laura Ann Garren

 

The Dark Side of Caretaking

4 Jul

This entry is about the dark side of caretaking. I am grateful for many things and am fortunate in many ways, but I have additional emotions that come up from time to time and I need to express them. I often feel:

  • ConflictedIMG_8152
  • Conflicted
  • Constrained
  • Trapped
  • Overwhelmed
  • Terrified
  • Anxious
  • Guilty
  • Resentful
  • Remorse
  • Sorrowful
  • Depressed
  • Angry
  • Lonely
  • Frustrated
  • Abandoned

It takes tremendous energy to fight these feelings. For instance, when I look at Chuck sitting in front of the TV day after day, I feel so sorrowful that he will never get any better. Sometimes I resent him because he is the reason I feel constrained; then I immediately feel guilty and remorseful. I feel conflicted most of the time because many of my feelings are at odds with each other.

I don’t always acknowledge or express my feelings because it’s exhausting. Inevitably, however, they leak out at some point (usually at night, when I wake up with a panic attack). The inability to move on and the responsibility taking care of Chuck sometimes grind me down. I feel abandoned when people seem to forget or acknowledge my situation.

I could continue, but I think this message delivers the information well enough. I guess what I’m asking is for people to understand and acknowledge the unchanging nature of my predicament.

I would also like to add that I deeply appreciate the various and overwhelming kinds of support I’ve received: money, surprise gifts, cards, calls and visits. Susie comes three or four times a year. Lisa, who lives next door, helps with shopping, preparing meals and cooking and emergencies, big or small. Dorian is always available to lend emotional support and encouragement.

Thank you for reading. If you would like to learn more about my experience of caretaking, please check out my book, Stroke Happens.

Best, Laura Ann Garren

Stroke Happens Featured in Local Paper

2 Dec

I am excited to say Stroke Happens was featured in our local paper! Article below by Jason Evans, who did an outstanding 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.

IMG_5554Their 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

Stroke: A Poem

2 Nov

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

Version 2

Let Me Tell You About My Book

25 Oct

Stroke Happens: A Caretaker’s Memoir tells the story of my husband’s stroke and my role as his caretaker after he suffered a massive stroke in 2007, at the age of 56. I decided to self-publish through Amazon because, after submitting the manuscript to more than 30 publishing companies, I couldn’t get anyone to read it. (I still wonder, “Why do publishers have submission guidelines on their websites if they weren’t even going to look at submissions?” I still don’t have an answer.)

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Finally, I overcame my reservations about self-publishing, realizing I have nothing to prove since I published The Chattooga River: A Natural and Cultural History (2013) through The History Press.

If you follow my blog and find it helpful, please read my book for more a detailed account of my journey through the tumultuous emotional landscape of stroke recovery. I hope my experience can help others find answers, feel validated and reach acceptance in their role as a caretaker; or simply be informed by my description of one aspect of the human condition

Thank you for reading. Best, Laura Ann Garren

 

Suffering is Optional

20 Apr

For Robert

I attended a beautiful and moving memorial service yesterday for a woman who died suddenly and too young. I did not know her but went through school with her brother; her sister and mine are close and my sister couldn’t make it, so I stood for the family. Her father was our beloved family vet, and the death of his daughter makes the second child he has lost.

The service, as these things do, got me thinking about the nature of life and death, love and loss, and how we try to make sense of it all and sometimes don’t succeed. Someone read a passage from Elizabeth Kubler-Ross’ account of her research on what happens after death. I found myself greatly moved by the poignancy of her ideas, although I’m not sure I believe in an afterlife. I wonder if these are stories to us by our egos, terrified by the thought of annihilation.

My former classmate spoke about his sister and his great love for her, which in itself was heartbreaking and beautiful. But he then had the courage to speak of what he called his rebelliousness, alluding, I think to his own doubts. Having lost two siblings seems almost unbearable; but he also has watched his father lose two children. He carries more than his own pain. He implied that he also carries profound questions, if not anger, about the unfairness of it. Why, in fact, does life have to be so hard?

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I have asked myself this on many occasions. When I feel myself being sucked into this question, which cannot be answered, I try to recall some wise words I once read.  Bad Things Happen to Good People was written by the Rabbi Harold Kushner, upon learning that his three-year-old son had a cruel, incurable disease and would die young. I find it difficult to relate the eloquence and profundity of the book in just a few words, but the underlying principal was that the question we should ask ourselves is not, “Why?” but “Why not?

By way of illustration, a parable: once a woman lamenting the death of her only son approached Buddha. She begged him to bring her son back to life. Buddha told her to bring him a poppy seed from the household of a family that had not known tragedy. She went from door to door, only to return to the Buddha empty handed but filled with the understanding that no one gets out unscathed.

Our lot in life, which Thomas Hobbes described as “nasty, brutish and short,” includes suffering. It is inescapable. There are innumerable ways to suffer–death, disease, disablement, divorce, to name but a few—and the only control we have over these events is our reaction to them. We grieve, we get angry, we torture ourselves with regret. In the end, though,  we desire peace and happiness, and we must try find it despite the tragedies that befall us.

I rely on stories like Kushner’s, or Buddha’s, to help myself find peace, which can be so elusive. Everyone suffers; no one is exempt. Since I have accepted this simple, profound concept, I have found it easier to live. Life does not have to be nasty and brutish, at least not all the time; especially if we remember that pain is inevitable but suffering is optional.

If you are reading this and you are suffering, I wish you peace.

Best, Laura Ann Garren

 

Strokenomics

20 Mar

Strokenomics refers to when you find that you or a loved one has suffered a stroke and are forced to live within new means. Hopefully, you have invested in a supplemental long-term disability. If not, I strongly urge you to do so before someone has an unexpected health catastrophe. 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 it will 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.

Unfortunately, our timing was bad. 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. Needless to say, I have found ways to economize. I’m sharing in case anyone else in a similar situation might benefit.

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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). 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.”

Giving up meat (I’m a vegetarian for moral, ethical, environmental and economic reasons) 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.”

Some other ways to save include:

  • Eat out less.
  • Don’t go to the movies.
  • 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.
  • Clip coupons.
  • 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 pet.
  • Buy lottery tickets. (Just kidding. Sort of.)

As I mentioned, I’m sure there are additional ways apply strokenomics. I hope mine help someone out there!

Best, Laura Ann Garren

 

Get What You Need

16 Feb

IMG_8700

Chuck loved Valentine’s Day. He would draw me a little cartoon in the morning before going to work. When he came home, he would bring flowers and a card. For a few years after the stroke, I keenly felt the loss of this silly holiday. Everyone (at least on Facebook) was getting flowers or candy or making plans for dinner. My sweetheart, once so thoughtful, doesn’t even realize it’s Valentine’s Day; and if he did, he would be unable to get me a gift. For a long time, I felt sorry for myself on V-Day, but then on one February 14th, I decided to feel gratitude and was moved to share on Facebook:

“I was tempted to feel sorry for myself today, but then I remembered all the times Chuck brought me flowers when it wasn’t even St. Valentine’s Day. I’m lucky that I found someone who genuinely caring, thoughtful, generous, and so many other wonderful things. He still is, even if he can’t express it in the tradition ways. I’d rather have him here, as is, than all the flowers, candy, and ‘Be Mine’ cards in the world. Plus, he’s given me the biggest gift of all: a way to express MY love in a way most people aren’t called upon to do, by taking care of him.”

Forty-eight people “liked” the post and 15 people commented.

“Laura, this is the most beautiful thing I’ve seen all day!!! What a fabulous valentine for your husband!!! What a beautiful spirit you have!”

“I don’t know your story, but I’ve never heard a sweeter Valentine!”

I was so touched. Each time I got another replay, I felt I had received a little Valentine.

In the words of the Rolling Stones, “You don’t always get what you want…but if you try sometimes…you get what you need.”

If you would like to learn more, please read my book, Stroke Happens.

Best, Laura Ann Garren

 

How to Communicate With Someone Who Has No Language

4 Dec

When I tell people that Chuck’s stroke left him without language, the first question is usually, “Can he read?” Is reading language? Yes? Then the answer is, “No, he cannot read. Or write, or speak.” Furthermore, his comprehension of spoken language is poor.

Chuck has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language; and apraxia, the ability to manipulate the musculature of the mouth in order to produce sound. (Which is beside the point in his case, sense he has no verbal capacity.) So how do we communicate? One way is through supportive communication. I’ll explain it as it was to me, then reveal which techniques worked best for us; you may find some of these suggestions helpful.

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How to Engage in Supportive Communication

1. Choose a time when Chuck is fresh and a place with few or no distractions. People who suffer from the affects of a stroke or head injury tire easily and are easily distracted by extraneous noise or activity.

2. Make sure Chuck has his dry-erase board and marker, picture dictionary, photos and photo albums.

  • Dry-erase and marker. The dry-erase board and marker were absolutely brilliant assistive tools and were suggested not by a speech therapist but by my niece Anna, who is a counselor and an artist. Chuck, himself a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.
  • Picture dictionary. Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. Too much was going on in the illustrations, say a market full of people, food, items and activities. To identify a single item—let’s say an apple (to indicate he wanted one for a snack)—took too much effort. His vision deficit probably contributed: he has a right field cut, meaning he lacks vision on the inside of his left eye and the outside of his right eye, a result of the stroke.
  • Photos and photo albums. Photos and albums worked well for Chuck because he recognized himself and others and had positive associations and memories connected to the people and events in the pictures. They also prompted name retrieval. Part of Chuck’s cognitive deficits include not being able to visualize whom I’m referring when I say the person’s name; he has to actually see the person or a photo thereof.

3. Ask him if he has a topic he would like to discuss, using one or all of the tools above.

4. When he points to or draws something, ask him to say it. Give him time to formulate the word, and ask if he would like you to write the word. If he continues to struggle after about 20 seconds, or if he asks for help, prompt him. If he cannot get it by himself, say the word and have him repeat it. Be patient. Give Chuck time to process, prepare, and articulate. This process will be fluid, so continue using the technique described as the conversation moves from topic to topic.

5. Spend the same amount of time telling him about yourself or something of interest to you or how your day is going. Speak slowly, repeat frequently, and use the dry-erase board to write key words and illustrate concepts in order to increase his comprehension. Newspapers and magazines are a good source of topics. Be patient. Give him time to understand your message. Repeat the message as needed.

6. After about a half-hour, progress to an exercise or game.

Other Things to Remember

If you are talking to Chuck, look directly at him. I have noticed that since Chuck is unable to contribute to a conversation, people tend to ignore him because, I suppose, he cannot contribute. Ignoring him is not only rude but also can intensify the isolation and loneliness frequently experienced by people who have aphasia.

Keep it short and simple. Chuck gets frustrated when someone talks to him and he doesn’t understand, or when he tries to express an idea but cannot make himself understood. Yes/no questions are best. Don’t talk too much; it’s okay to just share space with him.

I’ve been told that a hallmark of aphasia can include a disinterest in the lives of others (as well as other personality changes). I’m not sure if this is organic/structural or the result of being the center of attention during a long period of rehab. Chuck definitely has become detached since his stroke, his emotional repertoire drastically reduced. Luckily, he is usually in a pleasant mood, which is not always the case with stroke survivors.

I hope someone finds these ideas helpful and applicable to their particular situation. If you would like to read more about our experience with stroke, recovery and caretaking, please read my book, Stroke Happens.

Best, Laura Ann Garren

 

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