Tag Archives: stroke survivor

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

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

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

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

 

%d bloggers like this: