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)