by Carolyn Thomas ♥ @HeartSisters
Today we look at the third stage of The Four Stages of Heart Illness from Dr. Wayne Sotile’s excellent book called Thriving With Heart Disease, a must-read for all heart attack survivors and those who love them. Dr. Sotile, a cardiac psychologist, describes the heart patient’s journey through a series of “separate, identifiable stages”. He believes that your recovery will have fewer surprises if you are familiar with these four stages and know what to expect.*
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Stage 3: Handling the homecoming blues: You’re suddenly on your own, reality sets in, and the whole team must adapt to its new normal.
You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures. No longer are nurses and doctors checking, monitoring and calming you. Now you have to decide what you can and cannot do, and you may feel under-qualified for the job.
What used to be simple is suddenly unbearably complex. Making the bed, a doctor’s appointment or even a tuna sandwich can overwhelm you and bring you to tears. You feel childish and emotional and terribly alone – no matter how many people surround you at home.
Women’s homecoming can differ from men’s in a very important way: they get far less support. Husbands of heart attack survivors provide less hands-on help and participate less in recovery than wives do. Women are more likely than men to insist that their families not be inconvenienced for the sake of their rehabilitation, resulting in family dynamics that are less oriented towards the patient’s needs than they should be. See also: Women Heart Attack Survivors Know Their Place.
A woman recovering from heart disease often finds herself marinating in a potent brew of shock, anger, loneliness and stress:
- Shock because our culture still downplays the epidemic of heart disease among women.
- Anger because after years of pleading with the people she loves to take care of themselves, she’s the one who got sick.
- Loneliness because her family is less likely to provide the support and care she needs.
- Stress because her domestic responsibilities don’t come with a disability plan. Many women – even those with demanding careers – are the organizational and spiritual hubs of their homes. When they’re out of commission, everybody else can be thrown into utter disarray, compounding the patient’s anguish.
And in the early stages of cardiac recovery, you may experience many unfamiliar sensations – a strange combination of fear, weakness, fatigue and helplessness. It might take you all day to complete tasks you used to zip through before lunch. Moving very slowly, bouts of depression, weeping, social withdrawal or obsessive anxiety about dying – these are all normal during the early stages of heart disease.
Because you haven’t yet learned what you can and cannot safely do, you’re probably constantly asking yourself: “Am I doing alright?” In the meantime, friends or family may be lurking in the shadows, monitoring your every move:
- “Do you think it’s okay for you to do that?
- “Have you taken your medicine?”
- “How are you feeling?”
- “Why don’t you let me do that for you?”
At first, these reminders and offers of help may soothe and reassure you, but it’s almost certain that they’ll soon become irritating and you’ll find yourself growing testy with the people trying to help.
During the early crisis stage, your friends and family gather around you and everyone’s energy is focused on you – whether you’ll survive, what the illness means, what treatment you’ll need, and how to get you well again. But once the hospital crisis passes and you come home, the personal needs of others around you – especially those of the primary caregiver – begin to surface. Family tensions and debilitating exhaustion will develop if these needs aren’t acknowledged and addressed.
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Something that Dr. Sotile calls ‘coping overkill’ can also happen during the homecoming stage. This is caused by a swarm of fears that can cause the patient, family members or both to turn into the heart health police, preoccupied with catching themselves and others making mistakes.
Homecoming can be challenging for the family. Research has shown that a heart patient’s loved ones usually find the first days of homecoming to be a difficult and frightening time. Only about one in five caregivers feels ready to properly care for the heart patient at home.
Depression is also a normal part of recovery, and it comes in many forms. It’s all part of creating a new normal for yourself: establishing a new set of attitudes and expectations that redefine what normal means in your life.
You may be reading this and thinking:
“Hey – that’s not me. The hospital was a breeze. I’m still my usual cheery self!”
Please take a break from your victory dance – because you may not be in the clear just yet. About 20% of heart attack patients who seem unfazed by the hospital crisis stage develop emotional problems within four months after being discharged. One explanation for this alarming statistic is that many survivors experience undiagnosed (and untreated) Post-Traumatic Stress Disorder (PTSD).
* Excerpt from the book Thriving With Heart Disease © 2003 Wayne M. Sotile, PhD
♥ Here is how Dr. Sotile describes the progress of these four stages of heart illness:
- Stage 1: Surviving The Crisis – Illness strikes, and patient and family begin the journey.
- Stage 2: Creating a Coping Strategy – Everyone starts to grasp what heart illness is, what’s involved in treatment and recovery, and that the patient and family must work as a team.
- Stage 3: Handling the Homecoming Blues – (This blog post): You’re suddenly on your own; reality sets in and the team must adapt to its new normal.
- Stage 4: Learning to Live With Heart Disease – Patient and family have accepted the diagnosis and committed themselves to living with the illness, not in spite of it.
NOTE FROM CAROLYN: I wrote much more about coming home from the hospital after a cardiac event in my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order)
The New Country Called Heart Disease
Depressed? Who, Me? Myths and Facts about Depression Following a Heart Attack
“I’m Not Depressed!” – and Other Ways We Deny the Stigma of Mental Illness After a Heart Attack
Is it Post-Heart Attack Depression – or Just Feeling Sad?
Post-Traumatic Stress Disorder: Not Just For Soldiers Anymore
Women Heart Attack Survivors May Be as Psychologically Traumatized as Victims of Violence
Why Aren’t Women Heart Attack Survivors Showing Up for Cardiac Rehab?
10 Non-Drug Ways to Treat Depression in Heart Patients
When are Cardiologists Going to Start Talking about Depression?
8 thoughts on “Handling the homecoming blues: the third stage of heart attack recovery”
My mother suffered a V-fib MI three years ago Mother’s Day. She was dead for 2.5 mins, after great work she was brought back. We escaped that last 30 second window which can cause brain death. She has not displayed any neurological damage post attack, but as her daughter, I got a shell back, not my Mom. She did not participate in any cardiac rehab program. Is there a support group for her and my family to deal with this depression. She is waiting to die. She is 77, my Dad 79. Any insight would be greatly appreciated.
Hello Tamara – your mother’s experience is not uncommon. Ask for a referral to a professional counsellor experienced in this kind of traumatic health crisis. Meanwhile, check out the (free) WomenHeart online support community for help from others who have been through a similar experience. Best of luck to all of your family.
This almost reads like my own homecoming after open heart surgery. THANK YOU for this, I’m forwarding it to all my family and friends now. Maybe it will help them understand what I was trying to describe to them. I’ve also ordered this book, thanks so much for the recommendation.
Just reading this article has brought tears to my eyes as I remember all of the emotions I went through after having had a heart attack 3 years ago.
I especially agree with with Dr. S. Parker that a person is not ever really the same after having had a heart attack. I find that all of the emotions are still there when I think back to that life changing event.
I am sure anyone who has experienced a heart attack will understand, but I also know that anyone who hasn’t would expect that after 3 years, someone should just get over it.
I work at my health daily. It is my #1 priority. I wish I didn’t have to think about it, but I have heightened anxiety if I can’t make it to the gym to do cardio exercise and strength training. Not exercising is not an option for me, nor is just pigging out on junk food whenever I want to.
I feel healthier for looking after myself, but I also know I don’t have a choice and before my heart attack, I felt like I did.
Dr. Sotile’s book sounds quite worthwhile (I just ordered it), but I have problems with the title. It almost makes it sound like it is easy to recover from a heart attack. After reading the title, one could feel guilty because one isn’t yet thriving.
American culture tends to believe that thinking positively can cure anything, or going through seven steps (or twelve or whatever) can cure what ails you.
Popular psychology tends to deny the darker side of things (like severe depression), and tends to take an extroverted approach to solving problems. (Jung’s recently published The Red Book is a model for working with and valuing the inner life.)
It takes a long time to work through the shock and effects of a heart attack, and one is really never the same. (One can be better – “”Strong at the Broken Places” — but it is a long journey.)
While Dr. Sotile writes well on the emotions after a heart attack — a much neglected area — the title can imply they are just part of a stage one goes through and gets over with. Difficult and dark emotions will always be there.
Is America ready for “You’re Crazy if you are not Anxious and Depressed after a Heart Attack”?
Dick Cheney allegedly did jumping jacks shortly after he had his stent to show that he was doing well. Right.
Just as soon as I can gather myself together, I am planning on writing Thriving After I Lost All my Body Parts…
Thanks for the continued excellent choice of heart topics…
Hi Steve – I hope you don’t have to lose ALL your body parts before writing that new book of yours! 😉
I do agree with your opinions of Dr. Sotile’s book title. This title is all about conquering, battling, winning, and the triumph of the human spirit over reality.
But would I be as likely to even pick up this book if it had been called “Barely Coping With Heart Disease”? Probably not. I’m doing a good enough job with ‘barely coping’ as it is – and we live in hope! Dr. Sotile’s content certainly does seem to acknowledge the ‘darker side’. His line about weeping because you have to make a tuna sandwich – I’ve been there!
Thanks so much for your comment,
Wow. You cared enough to make a tuna sandwich after a heart attack?
Did you have enough energy to put on (heart healthy) mayonnaise or did you just have it straight?
(BTW — are you sure we are supposed to be eating tuna? or bread?)
Yes, I tried! But between the mercury in the tuna and the simple carbs in the bread – it’s pretty deadly stuff, that tuna sandwich!