Tag Archives: caretaker

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

 

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

 

Resources for the Stroke Survivor/Caretaker

3 Dec

Many stroke survivors do get full function back. I decided to assume that Chuck would, and I became prolifically proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I am sharing my findings in case they might help someone else.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not pursuing this route, but here are some sources, typically sponsored by the federal government and private hospitals, universities, and research centers.

http://www.stroke.org/site/PageServer?pagename=clinicaltrials
http://www.strokecenter.org/trials/
http://www.centerwatch.com/clinical-trials/listings/condition/142/stroke

Constraint Induced Therapy (CIT)
I read about CIT in The Brain That Changes Itself, by Norman Diodge. CIT involves restricting the use of the functional hand and thereby forcing the affected arm to work. The action of movement, even if a therapist manually produces it, causes neurons to fire. The arm communicates to the brain, “Hey, I’m still here! I need neurons.” Treatment takes place daily and lasts several hours. This kind of intensive therapy has been shown to be more effective than conventional therapy, which usually takes place three times a week. In order to qualify for this program, potential participants must have the ability to make a fist, which Chuck never was able to do.

The Mirror Box
The brain is the most complex organ of all the organs, containing the universe and the sum of all we know, as well as managing all our involuntary bodily functions and reflexes; which is why we don’t have to think about breathing. When brain cells are killed, as in a stroke, they don’t grow back. Luckily, the brain has plasticity; it can compensate for such loss with the help of neurons, which can grow new pathways around the damaged area. However, when a limb, especially an arm, is paralyzed as a result of a stroke, it suffers “learned disuse,” and the brain has to be coaxed into giving back function to the arm. Sometimes, it has to be tricked. This is how the mirror box works.

The mirror box is constructed of slick fabric stretched around wires. On one side on the outside of the box is a mirror. The affected arm is placed inside the box, where it cannot be seen; the functional hand rests outside the box, facing the mirror. The patient moves the functional arm while looking at its reflection in the mirror, imagining he is moving the affected arm. The brain is thereby tricked into communicating with the arm, which is what has to happen in order for the arm to move. Best of all, they only cost $40.

The Biffy
In some cases, the caretaker of  the stroke survivor has to assist in cleaning after a bowel movement. In order to avoid this task and to spare Chuck’s dignity, I turned to the Internet, where I discovered a gadget that improved our quality of life to a great degree: the Biffy. It fits onto the toilet bowl and diverts water, by way of the intake valve, through a spout that sends a jet of water into the nether regions when the user pulls a lever. The cost was $100, much less expensive than a real bidet.

Rest   With Chuck After Stroke
A person who has suffered a stroke needs lots of rest. Chuck slept 12 hours a night and took naps during the day for the first year post-stroke. The brain needs that time to heal, so let a stroke survivor sleep as much as possible.

Knowledge is Power
I also found other sources of information on the Internet, such as free magazines Stroke Smart and The Stroke Connection and books like My Stroke of Insight; Head Cases: Brain Injury and Its Aftermath; and The Brain That Changes Itself. I read as much as I could, on line and off, about stroke. As I could find very few books from the point of view of the caretaker, I wrote one myself: Stroke Happens, available on Amazon.

Educating myself was one of the best ways I was able to help Chuck. I gathered a mass of information—some helpful, some not—much of which no doctor or therapist ever told me about. In addition, doing the work helped me feel empowered in a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled many hours that otherwise might have been spent despairing.

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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About Laura Ann Garren

21 Nov

Laura in Cuba.jpgI have been a writer for more than 25 years, starting out as a newspaper journalist. I’ve also been an editor and a teacher of college-level writing and literature courses, as well as a freelance writer and author of two books. I am also a certified dog trainer.

My most important job, however, is taking care of my husband Chuck, who suffered a massive stroke in 2007.

I started this blog in the hope of reaching people who find themselves in a caretaking role, whether for a survivor of a stroke or any other kind of disability. My goal, in this blog as well as in my book, also entitled Stroke Happens (2017), is to share my experiences so that others may benefit from them.

Best, Laura Ann Garren

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