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Caregivers Corner

Whether the loss of a loved one comes from a sudden death or after a long illness the expected response is grief. Many Parkinson’s caregivers are often shocked and some even embarrassed or ashamed when the grief they expect to experience is slow in coming or never comes. Instead of grief they often feel numb and exhausted or sometimes even relieved when the one they love so dearly finally passes.


We have been programmed to think of grief as a response fully loaded with emotions and feelings that we are supposed to experience after someone we love dies. In reality for someone with Parkinson’s disease that process of grief actually started long before, at the moment the reality of the PD diagnosis set in. In previous newsletters we have discussed Dr. Elisabeth Kubler Ross and her stages of Grief, or of Death and Dying as they are sometimes referred. Dr. Ross explains that when someone is diagnosed with a terminal illness they go through a grieving process involving five stages: denial, anger, depression, bargaining and finally acceptance. According to Dr. Ross patients, caregivers and family members often go through these stages long before death occurs, and unfortunately not always at the same time. It is not uncommon for people to vacillate back and forth through the stages of grief through out the PD journey.


In 1944, Dr. Erich Lindemann was the first to describe this grieving process , when he coined the term “anticipatory grief”. The term was further developed by psychiatrist Knight Aldrich in 1963 to describe the mourning by both patients and survivors preceding an actual death. When someone is diagnosed with a prolonged illness like Parkinson’s disease there is a long term mourning that begins to gradually occur for both the patient and the caregiver. The patient may mourn the loss of their physical and mental abilities. They may mourn the loss of independence as they are forced to give up driving, managing family finances, household chores and other tasks. As the patient is forced to give up these the caregiver often has the burden of taking on these new responsibilities. Both patient and caregiver may mourn for the way things used to be.


During the course of a marathon disease like Parkinson’s other losses are often experienced as well. Friends may feel uncomfortable or not fully understand the disease so they begin to pull away. The patient and caregiver may feel like they are a burden or “too much trouble” so they may isolate from friends and family. Intimacy and sexuality are often compromised. Future dreams and hopes are forgotten or abandoned as more and more independence, dignity and hope is lost.


As a caregiver you are grieving throughout the entire journey. As each loss occurs you and the patient both may privately grieve the losses. Kenneth Doka, PhD, M Div, professor of gerontology at the Graduate School of the College of New Rochelle, and author of seventeen books on grief, says that “Grief is a reaction to a loss, but it can also be—and with caregivers grief often is— a multifaceted reaction.”


Caregivers to anyone experiencing a long term illness like Parkinson’s often run the gamut of emotions when the loved one finally passes. Initially the caregiver may feel nothing but numbness—the literal inability to feel anything. This is a natural defense mechanism to allow you to gradually adjust to the loss. This is normal and will pass.


Caregivers and family members may also experience regret for things said or left unsaid. They may question whether they did enough or even play the “woulda, coulda, shoulda” game, questioning if they did all they could or if they should have done things differently.


It is natural to grieve the passing of the loved one, but often caregivers feel relief at their loved ones passing. This relief is often followed by feelings of guilt for “wishing” for them to die or for being“secretly” happy at their passing. Webster defines guilt, “as a cognitive and emotional experience that occurs when a person believes he or she has violated a moral standard.” We have been programmed to believe that we should feel nothing but sadness at a loved one’s passing so if we are happy or relieved then we must be in the wrong, perhaps even evil for thinking that way. These conflicting emotions can wreak havoc on a psyche, especially one that is stressed and exhausted from months or years of caregiving. Often well intentioned family members can make the guilt even worse by questioning your decisions, especially if these decisions involved putting someone in a facility or deciding not to put in a feeding tube, etc.


Anger is also a common emotion after the passing of a loved one. Some are angry at God for “taking” their loved one, others are angry and even bitter after months or years of taking on additional responsibilities as they watched their loved one gradually slip away. Anger is also a normal reaction and should be expressed in a healthy way.


Prolonged grief and guilt is associated with negative outcomes and decreased well being for the caregiver. Grief may have temporary effects on the body like the inability to concentrate, severe fatigue, shortness of breath, heart palpitations, tightness in the chest, weight loss or gain, and headaches. For some these side effects are not temporary they become chronic and may lead to more serious health issues.


According to the journal “Circulation”, individuals with a preexisting heart condition are 20 percent more likely to suffer a heart attack after the loss of a loved one. Those newly widowed are 21 times more likely to have a heart attack within the first 24 hours after a loss of a spouse even if there was no preexisting condition. This increased risk continues for at least a month before it gradually declines.


As we discovered in January with the passing of the actress Debbie Reynolds, after the loss of her daughter, it is even possible to die of a broken heart. According to the American Heart Association, Broken Heart syndrome, as it is called is a very real phenomena that occurs more commonly in women and in elderly couples after long marriages. Severe grief can lead to cardiomyopathy or heart muscle stress which sometimes results in a heart attack.


What is a caregiver to do? Dr. Doka suggests that the best way to combat the barrage of emotions that occurs after an illness is to be more than a caregiver! According to him, “for many people the role of caregiver is all-consuming.” “So when it ends, life can feel as though it’s lost its meaning and purpose.” It is important for caregivers to set up regular “me” time. To continue to maintain activities they enjoy and relationships with others so that when their loved one passes they can continue on with life.


For some counseling and even the temporary use of anti-depressants may be necessary to get past the guilt and the loss. It is also recommended that you talk to your family members and educate them about your decisions to help rid you of your guilt and them of their anger or concerns. It may be necessary for them to speak to the physicians or other healthcare professionals that helped you make your decisions.


Make a point to get out and engage in activities you enjoy. Take care of yourself by getting adequate rest and eating a healthy diet. Exercise daily even if it is just walking in place while watching your favorite television show. Reach out to (and possibly reconnect with) family and friends for support and comfort. Continue to attend, or perhaps start attending a support group to help you gradually adjust to your loss. Write down your thoughts and feelings in a journal and scream if necessary while taking a shower.


The loss of a loved one is not easy to deal with, but over time things will gradually get better. You will never forget the love you had for your loved one but the pain and guilt will eventually subside. 


Sources: grief and bereavement; and resource/grief


Parkinsonism & Related Disorders Volume 12, Issue 1, January 2006, p 35-41


The Emerging Field of Palliative Care for Parkinson’s Disease, Parkinsonism & Related Disorder, Vol. 18, Supplement 3, Dec 2012, Pages S15-S18


Discussion by Dr. ken Doka: Guilt and Regret in Prolonged Illness

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