anticipatory grief

Hi Beautiful!

Anticipatory grief is a complex emotional condition that caregivers of special needs children experience as they battle with the challenges and uncertainties associated with their child’s condition. This battle is a war that is fought daily with no end in sight.

It can be defined as a state of deep, painful sorrow that occurs before an impending loss. While typical to experience if you are caring for a loved one with a terminal illness, it’s often ignored for those of us live with the loss of our ideal healthy child we thought we would birth. I’m here to say that it’s okay to grieve for what you thought would be and isn’t.

1 in 4 caregivers experience it, yet it’s not talked about. It is a form of CPTSD – Chronic Post Traumatic Stress Disorder as we are triggered daily and live in a constant state of fear.

If you are a caregiver you know exactly what I mean by anticipatory grief, yet those around you are clueless, they only see what you allow them to see and have no idea that you are literally tied up in knots on the inside. It’s knowing that “something” might or will happen keeps us in a state of Fight Flight Freeze.

Anticipatory grief triggers the SAME raw emotions that come with a sense of loss: fear, deep sorry, distress, overwhelm, sadness, anger, betrayal, shame, loneliness etc. No matter where this psychological pain comes from it is intense and significantly affects many areas of your life.

caregiving

John Hopkins university defines caregiving as: “a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability.”

Perhaps you care for a sick or disabled child or are responsible for the health or financial wellbeing of a loved one.

But in addition to caring for another being you are required to be the caregiver of your own health and happiness.

quiz: are you a caregiver?

A caregiver can be someone caring for a child, spouse or parent, an extended family member, friend or neighbor.

Do you provide someone help with:

• Transportation to medical appointments?
• Purchasing or organizing medications?
• Monitoring their medical condition?
• Communicating with healthcare professionals?
• Advocating on their behalf with providers or agencies?
• Getting in and out of beds or chairs?
• Getting dressed?
• Bathing or showering?
• Grocery or other shopping?
• Housework?
• Preparing meals?
• Managing finances?

If you answered “yes” to any of the examples listed above, you are a caregiver.

are you your own best caregiver?

Now answer these similar questions for yourself.

• Do you put off or cancel your own medical appointments?
• Do you fail to pick up, purchase or forget to take your own medications?
• Do you have regular doctor, and/or alternative health appointments?
• Do you seek out therapy to support your health and wellbeing?
• Do you advocate for your own wellbeing needs?
• Do you ever struggle to get out of beds in the morning?
• Do you get dressed in the morning feeling joy?
• Do you ever skip bathing or showering because it seems like too much work?
• Do you order take out because grocery shopping is a chore?
• Do you ever skip meals because preparing one is overwhelming?
• Do you keep your environment clean and clutter free?
• Are you good at managing your finances and have a plan for your future?
• Do you pass on social meet ups as they feel too overwhelmig?yy

If you answered “no” to the examples listed above you have forgotten to take care of your own needs.

“there are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Caregiving is universal.”

– Rosalynn Carter, Former First Lady of the United States

loss

In the midst of mourning the loss of welcoming a healthy baby into our lives, our anguish intensifies upon receiving the diagnosis of any wicked disease or illness. The grief we experience becomes so profound that, in an instant, all happiness is drained from our beings.

Our existence undergoes an irreversible transformation, overshadowed by a pervasive fear that comes to dictate the course of our lives. This is a grief that never goes away, it reappears every time we witness our child bare their burden. We are triggered even when we see our beautiful baby smile wishing it to be long lasting. We are hammered by grief with every seizure we rescue, every outburst we try to soothe and all other crisis we have to battle. We are reminded of our grief when seeing our friends children live out their dreams, go to school, play school sports, have sleepovers, go on dates, get married and start their own families.

uncertainty

A significant aspect of anticipatory grief is the persistent awareness of an uncertain future. Caregivers mourn not only the loss of their envisioned “typical” life for their child but also the daily adjustments and adaptations required for the child’s unique needs.

The emotional toll becomes overwhelming as caregivers navigate the unknown landscape of doctor appointments, therapies, educational choices, legal rights, benefits, etc each demanding their full attention and a learning curve so steep it’s like learning a foreign language.

The daily realities of caregiving for special needs children often involve struggling with a range of emotions, from frustration and exhaustion to guilt, sadness and shame.

The anticipatory grief caregivers experience is not only about mourning what has been lost but also about facing the ongoing challenges and uncertainties that lie ahead. This prolonged state of grief often leads to emotional exhaustion, burnout, and constant anxiety.

The perpetual nature of caregiving responsibilities make it challenging for caregivers to find moments of respite or self-care, exacerbating the emotional toll of anticipatory grief.

isolation

Caregivers often grapple with the social and societal aspects of anticipatory grief. They often face loneliness and isolation as their child’s needs limit their ability to engage in typical social activities. Stigma and misunderstanding from friends, family and work colleagues only further compound the emotional burden, leaving caregivers feeling unsupported and misunderstood.

mindfulness

It is crucial for caregivers to find avenues for emotional expression, support groups, and professional assistance to navigate the complex landscape of anticipatory grief. Acknowledging and addressing these emotional challenges is vital for caregivers to sustain their well-being while providing the best possible care for their loved ones.

“But you are not broken! You don’t need fixing, you just need to remember to love yourself as much as you do for your loved one.”

When we give birth to our beautiful babies we don’t go through any training to prepare us for the overwhelm of caring for a sick child. As adults there is no crash course to provide us with the skills to care for our aging or sick loved ones. We are thrown in the deep end with no life raft in sight.

A part of our existence has been wiped out. Life as we knew it is gone. But I’m here to remind you: You are not broken! You don’t need fixing, you just need to remember to love yourself as much as you do for your loved one.

Remember you deserve to live a healthy vibrant life full of happiness and love!

❤︎ Amanda