I’ve Experienced 3 Phases of Caregiving

Life experience plays an integral role in shaping our behavior and thinking. I have come a long way from being an unsettled 18-year-old to a wiser and more focused woman in her 50s. Looking back, I see how the ups and downs we face shape our individuality. We are all unique and slightly eccentric in our own ways. Everything we go through crafts our distinct mindset.

I am a caregiver to a spouse who suffers from hereditary ATTR amyloidosis. Aubrey was diagnosed in 2013, and any of you who have walked with me through my writings will know that our journey has been filled with highs and lows.

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Caring for a loved one who is deteriorating in front of you is difficult. There are days when I wish the earth was flat so I could jump off the edge. But there are also days when the simplest things in life fill me with so much joy.

I’ve realized I’ve gone through three main caregiving phases in my 11 years as a wife and carer. I’ll use the acronym DOT to define them. They are the determining phase (D), the occurring phase (O), and the transcending (T) phase. Each stage is complex and multifaceted, and has helped shape me into the woman I am today.

Determining

After Aubrey received his diagnosis in 2013, I spent roughly four years spinning the wheel of grief, and moving between stages of denial, anger, bargaining, depression, and acceptance.

This phase determines the carer’s future: We either become stronger in preparation for the next phase, or feel broken enough to leave. After a loved one is diagnosed, caregivers must dig deep, find their inner strength, and take a close look at what really matters in life.

As carers learn to adjust to constant change associated with illness, they require a lot of support.

Occurring

For me, this was when I began to accept the reality of what was occurring in the present, and what the future might hold. Aubrey may not be in the future. We probably won’t grow old together. Many things I want to do may not include him.

During this phase, I was still spinning the wheel of grief, but not as often, and less vigorously.

Transcending

Finally, I’ve been in the transcending phase for about three years. I have accepted reality, matured, and unfortunately become slightly detached. I have learned to function separately from the situation before me. Instead of being empathetic and affectionate, I have become clinical and matter-of-fact. I am focused and determined to see Aubrey achieve his best outcome, and I push him to do better and stay hopeful. Unfortunately, I am also distant at times and hard to read. I have built a shell around my heart to stop it from shattering.

As I continue to grow and change, perhaps I will experience other caregiving phases. I will check in again if I get there.

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.