Dementia: I Don't Know Who This Person is Anymore...

When given the news your parent has dementia, how do you cope with caring for a stranger? Here are some experiences and lessons learned from a few who have traveled this road.


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My Last Year with Dad

Last year, while on a ski trip with my husband and some friends, I received a call from my panic-stricken stepmother. My dad had fallen, broken his leg and was being rushed to the hospital.

I had already dealt with the death of a parent: my mother had died suddenly years before. But I had never experienced the prolonged suffering of a beloved, aging parent. Especially painful was the fact that Dad could not come home after his hospital stay and instead went for rehabilitation in a nursing home, a six-hour drive from my home in Atlanta. Thus began a year of roller coaster sentiments that left me physically and mentally exhausted-- I was in an emotional state like I have never experienced in my adult life.

One of the stronger emotions I suffered was guilt-- something I learned to live with daily. Guilt would sneak up if I spent a day by myself or with friends or other family members. I felt guilty knowing that if I was not with Dad, someone had to take my place—I felt worse if no one could. Guilt was when I looked into his sweet face and told a little white lie about his progress, his appearance, his prognosis. I also suffered knowing I was not my usual self at home or doing my best at work.

Intimacy between Dad and I grew as we took the opportunity to relive old memories, laugh together over old stories, hold hands and share emotions. There were also serious discussions. At one point he shared with me his thoughts on his funeral details and a few truths of his feelings about certain individuals.

I experienced fear on many levels. I was, of course, fearful that I may lose someone I dearly loved. But I also experienced a selfish fear when I realized the person who bolstered me through my personal trials and tribulations was now weak and relying on my strength. Shear panic set in when Dad began sharing his fear of never going home or that he might die. And of course, the unmentioned fear-- that one day it might be me lying in a nursing home bed.

Hope was an emotion that ebbed and flowed. Some days we were flying high on hope. The conversations were fun, the moments together were like the good old days, and his progress was visible. We hoped that we had dodged the bullet this time. But after taking ten labored steps at Thanksgiving for the family, Dad relapsed and was not coherent for days. And that is how it goes with hope. Sadness can engulf you. It overcomes you when you finally accept that your parent is not going to be with you much longer, and then it never really leaves. Sadness for me was, and still is, a physical ache, heaviness in my movements and tired, weepy eyes.

Dad passed away eleven months after his fall. But mine is in many ways a happy story. The prolonged illness of a family member can make or break relationships. I am blessed with a stepmom who served as a rock for Dad during his illness. I am blessed with a husband who was there for me. My sister, stepsisters, other relatives and family friends shared in giving Dad their time, love and encouragement throughout his entire ordeal. And I used the time I had with Dad wisely.

Dad never doubted that he was a much-loved husband, father, brother, uncle, grandfather and friend. And that is the greatest gift that can be given to anyone.

What I Know Now:

1. The emotional and physical toll of visiting and leaving someone you love in a nursing home may not be noticeable on a per visit basis, but it is staggering. I aged years in a period of 11 months. You truly do need to take good care of yourself during this period – no matter how selfish it seems to be at the time.

2. It is depressing for them and for you. You can’t help but want to run out and leave as soon as possible, but you suffer from guilt for feeling the way you do and for leaving them behind.

3. I “willed” my dad to live on a daily basis, walking around with a prayer constantly running in my mind, like a never-ending video clip. It takes an enormous amount of energy to function normally while in constant conversation with God.

4. With my dad having remarried I had NO rights in any decisions made about his health or finances, leaving my exhausted 83-year-old stepmom in full control. Many times I disagreed with those decisions but had no legal recourse.

5. Dad is as vivid to me today as he was when I sat for long hours holding his hand, reassuring him he would get better and go home.

Ronnie Bulleit is the mother of two daughters and lives in Atlanta. Her favorite memory of her father is learning ballroom dancing by standing on his feet as he moved across the living room floor. This will be her first Father's Day without him.

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