Living with heart disease – and your whole family

12 Apr

by Carolyn Thomas    @HeartSisters

For more than 30 years, Dr. Wayne Sotile was the director of psychological services for Wake Forest University’s Cardiac Rehabilitation program. Which is to say that he’s spent a lot of time talking and listening to heart patients and their families. In 2008, while recuperating from my own heart attack, I discovered his must-read book called Thriving With Heart Disease.*  That title, by the way, has always bugged my Alaskan friend Dr. Stephen Parker (a cardiac psychologist and himself a heart attack survivor) who once made this comment about the book’s title:

“Just as soon as I can gather myself together, I am planning on writing a book called ‘Thriving After I Lost All My Body Parts’…”

Despite that small quibble about the title, Dr. Sotile is a terrific writer who really nails it when it comes to guiding those who are freshly-diagnosed with a chronic and progressive condition like heart disease.  Another of his many books expands that guidance.  It recognizes that it’s often the patient’s entire family who need help coping with the stresses and changes brought on by a cardiac diagnosis. Such help, he claims, can actually be the key to recovering.  

This other book, published in 1992, is called Heart Illness and Intimacy: How Caring Relationships Aid RecoveryAs Dr. Sotile correctly reminds us, the patient may not be the only one profoundly affected by this diagnosis.  Coping with a heart illness also involves spouses and other immediate family members dealing with an endless volley of stressors while trying to figure out how to resume a semblance of normal day-to-day life.

There is, in fact, no neutral position regarding the family’s impact on the recovering heart patient, warns Dr. Sotile:  family reactions either help or hinder the patient’s recovery.

This reality was also illustrated in a moving essay written by a cardiac spouse named Steve Kirsche after his wife Martha was diagnosed with cardiomyopathy:

“I admit I still expect her to be the same, as universally people still tell her she looks so good and us guys are very slow to pick up on change. Her medications are affecting her emotionally, and I found myself mad at her for things she never would have said before. It was a huge strain on our storybook romance.

“I am learning to NOT react instantaneously when she appears to say something that would get me upset. Shame on me for not picking this up sooner. It’s amazing this woman is functioning at all!! It’s not easy, and I don’t usually succeed, but I will get better and I will try to be more sympathetic.”

Although patients like Martha understandably need the most concern, they are also the ones in the family receiving the most targeted attention and medical help, especially during early days and weeks – all while their ignored family members might find themselves still reeling emotionally.  Dr. Sotile explains:

“It’s important to remember that the family members of this patient – especially the spouse – are also faced with stressors.

“But family members are not typically identified as ‘patients’ in this process; they aren’t viewed as needing the special care or attention that come with being sick. They’re left to manage overwhelming stress without the nurturing insistence from others to ‘Take good care of yourself!'”

Some families may engage in what Dr. Sotile calls “illness behaviour”, living a life focused on the patient’s illness rather than on wellness.  It’s what some scientists describe as the Velcro/Teflon phenomenon.(1)  For example, neurologist Dr. Ashok Panagariya cites studies that suggest: 

“The brain is like Velcro for negative experiences, while Teflon for positive emotions. Thus, bad memories tend to stick and good memories are easily forgotten.”

Or as one heart patient’s spouse told Dr. Sotile:

“After my wife’s heart attack, we all got used to walking on eggshells in dealing with her. She was afraid she wouldn’t recover, and we didn’t really know what to do to help her.  We all changed our lives in umpteen ways out of fear of her ‘weak heart’. We basically stopped doing anything but work, worry, and wait for the next heart attack.”

If this description sounds familiar to you, Dr. Sotile’s basic summary of how families function might help:

  • there are no perfect families
  • families tend to work as teams
  • family teams resist change
  • family structures determine how we relate to one another

I also like his explanation of how healthy families progress through three commonly observed stages of reaction while adjusting to the serious illness of a loved one:

1.  Initial Stage: Let’s Get Together and Endure  (concern and caring for one another at first, shock, feeling numb, wanting ‘proof’ that patient will recover, guilt, overwhelming fatigue, anger, taking out frustrations on medical staff, desperately wishing this had never happened)

2.  Intermediate Stage: Developing a Game Plan  (shock subsides, coping becomes task-oriented, denial, confusion, learning more about diagnosis and treatment, differences in interpreting medical advice, dealing with grief, feeling powerless, trying to hide emotions to protect the patient, monitoring patient’s behaviour like a stern parent, pre-occupied with future fears, homecoming depression especially in the first six weeks post-hospital discharge)

3.  Long-range Adjustment: Coping Together  (restoring order to family operations, spouses resuming physical intimacy, growing sense of teamwork, flexibly adjusting family roles and rules, allowing and talking about honest reactions, seeking accurate information, setting clear goals, coming to peace with oneself and others in the family)

The take-home advice here:  the way any family copes with serious illness is constantly evolving.

Heart disease is a chronic and progressive disease that lasts a lifetime. It’s the gift that just keeps on giving, so coping strategies that may have worked within a family in the early weeks and months may not be so effective later on.

And our families don’t always get this adjustment “right”. Instead, each of us must forever re-adjust, modify, and reevaluate our own coping strategies.

The families that Dr. Sotile says he’s especially concerned about are those he describes as not showing any obvious early signs of stress in reacting to the patient’s illness, those who settle into “a subtle and dangerous shift” in their ways of living as a family.  Such family members may appear to be doing a lot better than they actually are, or may fail to notice distress signals being sent out – signs that are often clearly obvious to observers outside the family.

This “I’m-fine-just-fine” phenomenon may be a sign of what behavioural psychologists know as defensive functioning”, an unconscious internal attempt to protect ourselves from powerful, identity-threatening feelings of anxiety (for example, feeling bad about a current health crisis).  Experts tell us that all adults have and use these primitive defenses, but most also have ways of coping with reality.  See also: Post-Traumatic Growth: how a crisis makes life better – or NOT

Do yourself a big favour.  If you’re a heart patient, a spouse or the family member of a heart patient, find yourself a copy of Dr. Sotile’s book, Heart Illness and Intimacy.

He wrote it almost 25 years ago, but his message and important advice are as valuable now as ever for both heart patients and those who care about them.

Read it, share it, and – most importantly – talk about it.

(1)  Epel ES, Blackburn EH, Lin J, Dhabhar FS, Adler NE, Morrow JD, et al. Accelerated telomere shortening in response to life stress. Proc Natl Acad Sci

Q:  How did the responses from your family help your own recovery since your own cardiac event?

See also:

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17 Responses to “Living with heart disease – and your whole family”

  1. millercanning April 13, 2015 at 8:44 am #

    Heart disease is stealth and it would be great if it were diagnosed prior to a heart attack. If I’d known that a heart attack could be imminent I would have done research to head it off at the pass. I hate that most women discover it after a major event!

    Liked by 1 person

    • Carolyn Thomas April 13, 2015 at 5:13 pm #

      Stealthy, indeed! Yet many of us do ignore known risk factors, or live in denial even when risk factors are clearly identified. As I now like to ask my women’s heart health presentation audiences, why not live your life exactly as you would if you knew you were at very high risk of heart attack? Sometimes (in an estimated 20% of cardiac diagnoses) we cannot identify any modifiable risk factors, but meanwhile, there is simply no downside to living a heart-healthy lifestyle!

      Like

      • millercanning April 17, 2015 at 12:51 pm #

        I suppose because I was athletic, most of my friends are as well. I was almost plant-based for nearly 30 years. The chronic stress and trauma since childhood is what had me at risk. I’m the poster child for most traumas and still pushing forward. That’s one of the significant missing pieces that is coming up in research and makes me more clear about what happened. Important stuff!

        Liked by 1 person

  2. Robyne Rieger April 12, 2015 at 2:51 pm #

    How about some articles that focus on congenital heart disease?

    Liked by 1 person

    • Carolyn Thomas April 13, 2015 at 6:54 am #

      Thanks for that suggestion, Robyne. I’ve written very little about that particular topic so far. I tend to focus more on coronary artery disease because of my own personal experience – but I might look into this topic in the future.*

      *UPDATE May 17, 2015: See my new post When babies with congenital heart defects grow up

      Like

  3. Jane Morgan April 12, 2015 at 10:48 am #

    Reblogged this on janemorgantownshend.

    Like

  4. Jane Morgan Townshend April 12, 2015 at 10:46 am #

    I couldn’t believe it when I read this. I had two heart attacks 15 months apart, the first when I was 55, then found out I’d been born with 3 birth defects in my heart which have caused me to have Acute Coronary Syndrome.

    This isn’t helped by stress and as I’ve had GAD (generalised anxiety disorder) ever since I can remember, it isn’t easy to stay on an even keel. Five years later I still get bad unstable angina pain at night. It’s worse at the moment as my lovely mum died seven weeks ago today. She cared and was scared for me. I have two sisters so I’m not alone, right? Wrong! They haven’t been in touch with me since Mum died which shouldn’t surprise me…but it does.

    After my first heart attack not one of my extended family phoned me, sent cards or took the slightest bit of notice of what had happened. My sisters helped me a bit but soon forgot all about it and carried on as before, never mentioning it unless I did and then I got moaned at for going on. I was terrified. Two days after my first heart attack one sister came to pick me up from hospital but made me carry my own bag as her back hurt.

    It sounds awful to say this but when I read some of the other comments, it all came rushing back and I felt sorry for myself and envious of the other people.

    Like

  5. Curious to the Max April 12, 2015 at 8:41 am #

    Another excellent post Carolyn, You information is beneficial for everyone with life-altering disease or conditions. It’s a reminder that we are all connected in ways obvious . . . and mysterious.

    Liked by 1 person

  6. JetGirl April 12, 2015 at 6:48 am #

    Carolyn,

    Dr. Sotile’s books were a tremendous help in the early days of my journey. His book on intimacy was the only thing I requested my husband read. Thank you again for advocating his writing!

    JG

    Liked by 1 person

    • Carolyn Thomas April 12, 2015 at 7:22 am #

      Great advice, JG – ask your spouse to read Dr. Sotile too!!!

      Like

  7. Denise April 12, 2015 at 6:46 am #

    Excellent post, Carolyn, with helpful resources to pursue. I’ll be sharing this with my friends and family who are living with heart disease, their own or a family members. Thanks!

    Liked by 1 person

    • Carolyn Thomas April 12, 2015 at 7:22 am #

      You’re welcome Denise – keep spreading the word! 🙂

      Like

  8. Judy Kendle April 12, 2015 at 4:51 am #

    I was very angry and apprehensive in the immediate wake of my heart attack in October 2012 – and my husband became the “hall monitor”, counting pills, making sure I took ’em all, made and kept all medical appointments and tests, and strictly observed the “no added salt,” low fat dietary guidelines.

    He also insisted on accompanying me to all doctor appointments – for about six months. For this, I was grateful at first, reasoning that two heads were better than one to pick up all the new lingo, directions, etc., but in the end, I began to resent the fact that my female GP was directing her comments to him, instead of to me!

    Luckily, he too realised what was happening and readily agreed to drop out of the picture, altho he still attends the one annual appointment I have with my cardiologist – who happily addresses both of us when he comments. John has also gradually relaxed his uber-vigilance as time has passed, but still monitors pills, which frankly I sometimes need. And he’s super-disciplined about exercise – daily walking – and accompanies me every time. And we’ve grown emotionally closer, if anything, as well – expressing our feelings for each other more frequently, for example.

    To date, I’ve fortunately had a relatively uncomplicated recovery from the heart attack without any residual angina pain or need for nitro, so I’m not sure he fully realises that this will most likely end in either heart failure or another attack in time – i.e. the heart condition is chronic and progressive. He doesn’t like to talk about it, so we don’t, but both my mother and my father died from heart conditions, so I know it’s a possibility.

    My children are thankfully too busy living their own lives to worry too much about their mother, but are more thoughtful about family dinners, etc. than formerly. And they definitely rallied round my husband in the immediate wake of the attack – and he was very grateful for their support. That’s about it – we’ve been lucky on balance, altho I still wish it hadn’t happened. And resent giving up salt!

    Liked by 3 people

    • Carolyn Thomas April 12, 2015 at 5:30 am #

      I really appreciate your unique perspective on this topic, Judy. I’m so impressed that you and your hubby were able to figure out how his presence at your doctor’s appointments were affecting you. (NOTE TO PHYSICIANS: focus on the PATIENT in front of you, NOT on her husband!)

      Like

  9. Helen Holshouser April 12, 2015 at 4:44 am #

    Thank you for sharing this work, which I and my family all need to read, as we have survived my heart attacks and stage 4 inoperable coronary artery disease now for 16 years!

    I have blogged about the situation several times over the years. I have realized how much it has affected my family as well. As a psychologist myself, master’s level, I was acutely aware of the stressors we all faced. It is/was so complicated.

    I am blessed by a wonderful, incredibly supportive family. It has hurt them though, changed the directions of their lives I know, I fear not always for the better – for my kids especially. Life, it is what it is. If you are interested, you can read a brief post I wrote about it recently.

    Like

    • Carolyn Thomas April 12, 2015 at 5:10 am #

      Thanks so much for sharing that blog post, Helen. Being told by doctors: “By the way, you can’t go back to work, not now anyway, maybe not ever” was only the first of the shocks you encountered. Your description of life post-heart attack was chilling. “I didn’t want to be a burden to my husband and asked him for a divorce! He refused to leave me. I felt guilty that my daughters were so upset; one left college her freshman year to come home and help care for me. One changed her wedding plans. We had to sell our lovely house, our home, because we’d lost half our income.” All perfect examples of how families can be impacted by our own life-altering diagnoses. Best of luck to you now…

      Liked by 1 person

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