Tag Archives: caretaker

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.



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.


Coming Soon

25 Oct

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

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

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

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

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

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

Chuck’s Arm

3 Dec

Six years post stroke, Chuck’s arm remains paralyzed. Many stroke survivors do get function back, and it’s hard to predict who will or will not. I decided to act as though Chuck would and became very proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I want to share my findings, in case they might help someone else in some way.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not being involved in any, but I spent many hours searching the lists. They are typically sponsored by the federal government and private hospitals, universities, and research centers. Here are some links to information:


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. This 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 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, well worth it. The company’s web site is located at https://www.biffy.com.

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.

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 more in control of a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled up many hours that otherwise might have been spent despairing.

Take Care of the Caretaker

26 Nov

I’m working on a manuscript I wrote about Chuck’s stroke and my experience as his caretaker. It’s called, not surprisingly, Stroke Happens. Today’s post is an excerpt I hope illuminates the fear of being forgotten, the fear that caretakers feel once the crisis is over and people start to move on:

“About this time, some people congratulated me for being so strong, even though I felt as fragile as a hummingbird’s egg. I suspected they were just trying to make themselves feel better, or that they wanted me to move on. What they didn’t understand is that time stands still when you’re dealing with a long-lasting chronic illness or permanent disability; sustained, consistent help is needed for months, sometimes years. I still needed help and was terrified that people were going to abandon me. My response was to write a blunt, almost accusing, email.”

After which I received a slew of support and offers of help.

My points are: if you are a caretaker, ask for help when you need it; if you know a caretaker, offer help on a consistent and ongoing basis.

Should I Stay or Should I Go?

25 Nov

I can see why some spouses leave their stroke survivors. They can’t live with the idea that the person they married has been replaced by a disabled person who needs full-time care. I felt staying was my only option; if I left, Chuck would have to be institutionalized, which I couldn’t bear. In short, I stayed not because of the great love I felt for Chuck, but because of my feelings of empathy and compassion.

I did love, and do love, Chuck. However, since I became his caretaker, the nature of that love is different. I can live with the changes that have occurred in our relationship since Chuck suffered a stroke and became disabled. I’m sure some people cannot, although I don’t know of any studies that indicate a higher rate of separation in the aftermath of stroke. It’s hard to have to redefine a marriage and to let go of certain hopes for the future.

Funnily, 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.

I “decided” to stay, although it was not a moment in time. It was more of 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 trapped 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 so intense that it’s painful. But I know that the pain I would cause Chuck, and the guilt I would feel, outweighs my desire to be free. So I stay.

I admit these very personal feelings because I suspect other people have them as well, and I want to say, “It’s normal.” I also want them to know that while the caretaking life has meaning in itself, it’s doesn’t have to define them. In my next post, I’ll relate how I was able to find fulfillment while still being the caretaker for my stroke survivor.

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 today, I froze. I couldn’t decide what to write about. I felt like a blob, indeed, hands poised over the keyboard, waiting for the words to come. I felt I needed to write about Chuck’s stroke, therapy, recovery or how I coped with it. But I didn’t feel moved, so I pondered on it for a while. I think I understand, now.

     When Chuck had a stroke, it took over my life. However, six years have passed, and I have moved on. It’s now hard to recall much of the experience or my feelings during that time. The stress of that time blurred my memory of events. So how to proceed? Maybe this post should relate how I moved on, because I do remember a time when I thought I never would be able to. I was every bit a victim of stroke, albeit in a different way, as Chuck. While I would not describe myself as “happy,” exactly, I have found a level of contentment and fulfillment I never thought possible. Maybe I should describe how I got there.

     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 was not possible, 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, a very painful process 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 by moving, twice. We left our small town to move a small city, and then back again. I missed having access to my form of therapy: hiking in the woods, swimming in the lake, walking in the country. However, during our sojourn to the city 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. The last was rediscovering my love of writing, which has helped me redefine my identity. I started writing again, and five years later I wrote a book. I have a manuscript in progress and an idea for the next project simmering on the back burner.

     My 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 as a victim, ultimately not enough for me. I had to find myself, or more specifically the self I had become, and merge it with my new role as Chuck’s caretaker. The act of writing, or finding my voice, enabled me to move on while remaining in place.


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