Tag Archives: caretaking

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

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

 

Should I Stay or Should I Go?

25 Nov

When a spouse suffers a stroke, that person is changed, sometimes drastically and often forever. Some people can’t handle losing their loved one in this way; in fact, the rate of divorce increases more than 13% when a spouse is disabled.

I can see why some spouses leave their stroke survivors. Full-time caretaking is grinding, grueling work. I have stayed (12 years at the time of this writing) because I felt it was my only option. While I have been stressed and miserable much of the time during the post-stroke years, I know I wouldn’t be any happier if I had Chuck institutionalized. Also, I would have wanted him to stay with me, had the situation been reversed.

However, I did have to change my expectations in order to make the mental adjustment. Our relationship has changed, and I had to accept that. I had to redefine our marriage and to let go of my vision of future we were supposed to have. Not everyone can do so.

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.

When I “decided” to stay, it was not a moment in time. It was 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 constrained 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 intense and painful. But the pain I would cause Chuck outweighs my desire to be free.

I admit these very personal feelings because I suspect other people have them as well, and I want to assure them, “It’s normal.” In addition, I want to assert that full-time caretaking doesn’t have to define the caretaker. In my next post, I’ll relate how I was able to find fulfillment while still being the caretaker for my stroke survivor.

Best, Laura Ann Garren

Chuck and Laura

Moving On

24 Nov

The other day I announced to my email list that I had started a blog. I received a message from a friend congratulating me on my “blob.” I laughed, but when I sat down to write my first entry, I froze. I couldn’t decide what to write about. I felt like a blob. I found it difficult to channel the experience, perhaps because it was difficult to relive.

I finally decided to make this entry about moving on, because at one time the thought was unimaginable. The stroke happened to me as well as to Chuck, and I thought I would never be happy again. However, I have managed to find a level of contentment and peace I never thought possible.

The first step, obviously, was to get through the crisis itself. Next was to get Chuck what he needed in terms of continued therapy, which absorbed most of my energy for the first year and was driven in part by my desire for his complete recovery. When I realized that goal was not reachable, I then had to accept it, which was one of the hardest things I’ve ever had to do. I had to let go of the idea of Chuck as he was before the stroke. DSCN1338_1_2.jpgThe process was very painful because that was the prize I had been reaching toward, the finish line that had kept me in the race.

I spent the next couple of years avoiding reality. We left our small town to move the city, and then back again. I missed having access the unfettered outdoors: hiking in the woods, swimming in the lake, walking in the country. However, during our “exile,” I received some gifts I would not have otherwise. The first was yoga. The second was being able to be present for a dying friend. I have I learned to find silver linings in the stormiest of clouds.

I also rediscovered my love of writing, which has helped me recover my identity. Garren Biz Card copyI began contributing to an award-winning wildlife magazine, and five years later, I wrote a book (The Chattooga River: A Natural and Cultural History) and published a manuscript, Stroke Happens.

51ZBPymvoMLMy point is that I had to actively seek contentment and fulfillment, not wait for them to find me. For a time, I lost myself in the role of caretaker and victim. I had to redefine myself, or more specifically inhabit the self I had become. The act of writing, or finding my voice, enabled me to move on while remaining in place. May everyone else in a caretaking role be able to do so, as well.

Best, Laura Ann Garren

Your Best Resource is You

21 Nov

Your loved one has just suffered a stroke. You’re overwhelmed. What should you do, and when? In an effort to assist others who find themselves in this position, I’ve compiled a list of things I did, as well as what I wish I’d done, after the initial crisis.  Keep in mind that this list constitutes my opinions based on my experience as a caretaker.

1. Get the best medical care available. Make sure a neurologist is on staff. Some hospitals don’t have one, believe it or not. If yours does not, transfer your loved one to a hospital that does.

2. Apply for Social Security Disability Income immediately, even if you think your loved one won’t need it. Benefits don’t start until five months after APPLICATION, not date of disability, with no retro activity.

3. Demand that therapy start as soon as your loved one is out of immediate danger. Anticipate therapy after hospitalization and start making calls as soon as possible; every facility will have a waiting list, and you want to get your loved one on it as soon as possible.

4. Do not be afraid to dismiss a therapist you or your loved one doesn’t like, for whatever reason.

5. Research treatment options; don’t depend on the experts to know everything. Find out if any clinical trials are running, or where the best therapy is for specific conditions, such as aphasia.

6. Create an email list of family, friends and colleagues so that you can communicate about your loved one’s condition and ask for help when you need it.

7. Create an email list, website or phone tree in order to corral help when you need, then don’t be afraid to ask. People want to help but often don’t know how. Tell them, whether it’s food, a ride to the hospital, someone else to visit your loved one so you can take a break, or just a kind word. Caretaking is a grind, and you may be doing it for a long time, so pace yourself.

8. Wallow in self-pity (aka express your feelings about the situation), but try not to act out; do take care of yourself. Exercise, eat well, don’t misue alcohol or drugs. If you feel depressed, ask your family physician to prescribe meds.

9. Read everything you can get your hands on about stroke: books, magazines, articles, both in print and on line.

10. Start a journal in which you can record events, as well as your feelings. In the chaotic aftermath of a stroke, you may forget things, so it helps to write them down. Also, sometimes you might not realize how you’re feeling until you write it down.

11. Anticipate what your loved one will need upon coming home. Ask the therapists what these might be: a handicap ramp; removal of rugs that might cause tripping; shower seat; etc.

I hope this has been helpful. If you would like a fuller account of my caretaking experience, please read my book, Stroke Happens.

Best, Laura Ann Garren

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

13 Jun

Welcome to my blog, Stroke Happens, a resource for anyone who has been affected by stroke. It’s also the title of my book about stroke, recovery and caretaking. 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 us 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 test the limits of love and endurance.

Chuck Self Portrait

Along the way, I learned many things only after I really needed the information. One of my goals in my Stroke Happens blog is to provide answers to questions that the reader hasn’t asked yet. I want to help other stroke survivors and their caretakers to avoid some of the obstacles I faced. I 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. I also have a Facebook page by the same name (Stroke Happens); please check it out and click, “like.” Thanks for reading.

Best, Laura Ann Garren

 

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