Tag Archives: stroke survivor

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.


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.

About Laura Ann Garren

21 Nov

I have been a writer for more than 25 years. I started out as a newspaper journalist and make forays into newsletter editing and teaching college-level writing and literature courses. I had begun another venture based on my love of dogs, working on becoming a certified trainer, when my husband Chuck suffered a massive stroke in 2007. Very soon, I realized that my new full-time job was to take care of him. I quit my teaching gig, suspended my dog-training certification process, and concentrated on getting Chuck the care and therapy he needed.

With the passing of time, Chuck needed less care, so I resumed my studies toward becoming a dog trainer. I also developed an overwhelming desire to share Chuck’s and my story, so I began to write. Every day, for up to eight hours, I sat in front of the computer and wrote. The words poured out, and in about three months I had 35,000 or so words, a manuscript I called Stroke Happens.

I then started the hard part: finding a publisher who would read, much less publish, Stroke Happens. Naively, I thought I would be successful because when I was in the throes of the stroke experience, I found a dearth of information from a caretaker’s point of view. I was sure that a market existed; however, I could not find a publisher that would look at my manuscript. The overwhelming response, when I got one, was that I needed “a writer’s platform.”

Then I had an opportunity, to write an article for South Carolina Wildlife Magazine, about a bird that was spotted nesting way outside of its range (see http://www.scwildlife.com/pubs/mayjune2012/atourist.html). The editor liked my work and invited me to write more stories, so I did. I  also got a call from an editor at The History Press out of Charleston, SC, wondering if I would like to write a book. Yes.Garren Biz Card copy

A year later, I was the author of The Chattooga River: A Natural and Cultural History (see http://www.amazon.com/Chattooga-River-Natural-Cultural-History/dp/1609499859/ref=sr_1_1?s=books&ie=UTF8&qid=1378334467&sr=1-1).

Now I have a writer’s platform, although not in the area of stroke; therefore, this blog. I also hope to publish excerpts or chapters from Stroke Happens in an attempt to entice publishers. Meanwhile, I will post on this blog. Please comment and/or ask questions. My goal all along has been to share my experience with other caretakers and stroke survivors, particularly those who suffer from aphasia.

And wish me luck publishing Stroke Happens. Because it does.

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

13 Jun

Welcome to Stroke Happens, a resource for anyone who has been affected by stroke. 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 me 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 prove to be painful, arduous, and frustrating.

Along the way, I learned many things only after I really needed the information. My goal in this blog is to provide answers to questions that the reader hasn’t asked yet. I want other stroke survivors and their caretakers to avoid the obstacles I faced. I also 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. Thanks for reading.

Laura A. Garren

Self Portrait. By Chuck Linnell

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