Life post stroke – Stages of grief.

George Scola


 What has happened?

 You are ‘normal’:  Researchers have found that there are many common questions, issues and challenges facing all younger people who have had a stroke irrespective of their degree of physical disability.  Every individual will have a different and unique experience but it is very important to recognize that you are not alone and that most of what you are experiencing is quite ‘normal’.

The journey of recovery from stroke, for both survivor and carers and/or family members, involves various stages of realizing the things that have changed and readjusting to the effects these changes have on your lives.  Note, not all changes will be obvious in the early recovery period.

Coping with the physical as well as hidden disabilities can be challenging, cognitive abilities, poor memory and understanding, psychological and emotional problems can be a real challenge on the survivor, family members and loved ones.  The recovery period can be lengthy and there is no time frame in which to recover…it all depends on the individual and the support they receive!

You may find yourself comparing your recovery against that of other people who have had a stroke, please understand that no two strokes are the same.  Every individual will experience differing degrees of severity and speed of recovery, and people with similar problems will react differently.

Coming to terms with a stroke

Why me?  Coming to terms with having a stroke is something that many survivors have difficulty with.  You may have never been ill previously or have any risk factors for stroke and thus you certainly did not expect something so devastating to happen to you.

It is normal to expect things to be put right or be reversible but the damage done by stroke may have to be lived with for a long time.  After more severe strokes the transition into ‘disability’ may be very difficult to deal with.  With less severe strokes, hidden disabilities such as difficulty concentrating, fatigue and negative feelings about your body image can cause frustration.

As part of your recovery you may find yourself questioning many aspects of your life such as what the future holds, your spiritual beliefs, your role in society, your relationships with others, your new found role in the family, your ability to have sex and your ability to work.

A stroke may present many losses.  Physical and psychological abilities may have changed as may your level of independence and hopes for the future.  Changes in your family and social relationships can also leave you with feelings of loss.

Dealing with these potential changes can feel like a grieving process and often people who have had a stroke feel like part of them has died.  In younger survivors this reaction and the anger and frustration involved can feel overwhelming, as can feelings of guilt they feel for the burden the stroke has brought on their family and friends.

Will it happen again?

Much depends on the cause and type of stroke especially whether it was a bleed or a blockage and tests are necessary to find out as much as possible about this.  These might include testing the blood for various things, measuring blood flow through blood vessels, checking the heart to look for any abnormalities.

An inherited or genetic condition could have caused a disorder in the clotting mechanism of the blood.  Some strokes in younger people are caused by bleeding from a weakness or malformation in a blood vessel that may have been present since birth.

Doctors can’t always find a reason:  Unfortunately no explanation can be found for some strokes.  If this is the case you have to try and accept the fact that you may never get answers to your questions.  You must concentrate on being positive, reduce any known risk factors as much as possible and be vigilant in monitoring your health.

In some cases it may be possible to consider surgery to prevent further stroke.  Blood thinning medication may be considered as a preventative measure.  The risk of another stroke lessens as time passes.

Making lifestyle changes:  It can be a big challenge to change lifestyle habits such as smoking and drinking, or serious problems such as substance use.  Knowing that these changes will reduce your risk of another stroke doesn’t mean they are easy to make.

You may feel that the stroke has affected your choices in life too much already, and you may feel resentment about making healthy changes to your lifestyle.  A compromise of cutting down if unable to cut out will help to ease conflict if it arises.  Some people will take longer than others to come to terms with their stroke and so resist changing their lifestyle.

What you can do to help yourself:  There are several well understood medical conditions that are underlying causes of stroke such as high blood pressure, high cholesterol and diabetes. The following measures are known to improve some or all of the conditions mentioned as well as reducing the risk of stroke.  So taking steps to implement these changes will be a worthwhile investment.

  • Stop smoking and Moderate alcohol intake – binge drinking is particularly dangerous as it raises blood pressure.
  • Enjoy a varied, low fat and reduced salt diet, including 5 portions of fruit and vegetables a day.
  • Control your weight for your age and height.
  • Keep as active as possible.
  • Avoid recreational drugs.  Amphetamines, cocaine and ecstasy increase the risk of stroke.

The combined oral contraceptive pill may make the blood more likely to clot, especially in women with other risk factors, and may also raise blood pressure.  You may want to discuss other forms of contraception with your doctor.      


Stages of grief (Elizabeth Kubler Ross):

 The stages of grief experienced by a survivor and/or their caregiver are not necessarily exclusive to stroke but can be applicable to various challenging situations or trauma one experiences. The stages of grief were originally described by psychiatrist Elisabeth Kübler-Ross in relation to individuals facing terminal illness, but they can also be adapted to other forms of loss or adversity. When applied to stroke survivors and/or their caregivers, the stages of grief can help illustrate the emotional journey they may go through. It’s important to note that not everyone experiences these stages in the same order, and some stages may overlap or be revisited multiple times.

 1. Denial

This initial stage often involves disbelief or difficulty accepting the reality of the stroke. Both the survivor and the caregiver may struggle to comprehend the severity of the situation, minimizing the impact of the stroke and its long-term effects. This can last for days or months and sometimes years. Denial protects you from being overwhelmed by the change in your life.  Unfortunately, some survivors get stuck in denial and never come to terms with the effects of their stroke and the shock and disbelief that they are experiencing is not real, that they will wake up and all will be well again.

2. Anger

Anger and sometimes embarrassment are a normal emotional response as the full implications of what has happened to you are realized. As the reality of the stroke sinks in, individuals may experience feelings of anger, frustration, and resentment.

Survivors might direct their anger toward themselves, their caregivers, medical professionals or their God. Anger is often directed at the person closest to you, which can cause feelings of being misunderstood for both of you.

Caregivers, on the other hand, may feel anger toward the stroke itself or at the unfairness of the situation. 

During this phase, the full burden and impact of what has happened are being realized, so particularly family and loved ones need to be aware of this phase and as difficult as it is, sustain this phase!

3. Bargaining

This stage involves attempts to regain control or make deals with a higher power. Survivors may make promises to themselves or others in exchange for a return to their pre-stroke condition. Caregivers may find themselves bargaining for more time, better treatments, or improved outcomes.

4. Depression

Feelings of sadness, grief, and hopelessness can set in during this stage. Survivors may mourn the loss of their previous abilities, independence, or lifestyle, while caregivers may experience a sense of loss for the person they once knew. This depression can manifest as

social withdrawal, loss of interest in previously enjoyed activities, or changes in appetite and sleep patterns.

Anxiety after a stroke is often related to feelings of fear, fear of dying, fear of having another stroke, fear of the unknown, fear of losing their identity and fears about their roles and responsibilities.

Guilt can be about what caused the stroke, about the disruption and concern and stress to the lives of those around you, about not being able to work, about not being able to contribute as before.  Feelings of guilt can be powerful and destructive and can be completely irrational.

5. Acceptance and adjustment:

In this final stage, individuals begin to come to terms with the reality of the stroke and its consequences. While it doesn’t mean they are necessarily “okay” with what happened, it signifies a shift toward embracing the new normal and finding ways to adapt and move forward. Survivors and caregivers may start exploring rehabilitation options, seeking support networks, or learning to manage the challenges associated with stroke.