For ten years Sandra Bullock Smith cared for her mother who had dementia. Here she talks honestly about the difficulties she faced and the lessons she learnt
When I first started caring for my mother, I had no apprehension over how difficult the caregiving job would be. I am a strong, capable woman and my mother was gracious, sweet and appreciative. She tended to know the limitations age delivered to her. I tended to know everything. I had siblings who could help me care for her. What could go wrong? The short answer is “a lot.”
One day, as I sat in a hospital with my mother, I realised that in so many ways we had traded places. I was now the mother. I was not prepared for that role reversal. I was not prepared for the emotional challenges of my mother’s declining health and mental abilities. I was not prepared for the myriad situations for which there was no “right” answer. I sought out reading material that would help me feel like I was doing the right thing, making the best decisions. I wanted to read about other’s experiences while caring for a parent. Sadly, there was little I could find on the topic.
Caring for Mom
While caring for Mom, I found I was using phrases with her that she used with us as children. Phrases such as, “don’t give your food to the dog” and “you’ve had enough sugar today.” I kept a journal of these phrases and other experiences of caregiving. At some point I looked at my notes and thought if I could turn my experiences into a book, it might be helpful to others who were caring for a family member. That was the genesis of my book, Trading Places: Becoming My Mother’s Mother.
The book is a very personal collection of stories for me. Trading Places documents the living, breathing caregiving for my beloved mother. Some of the stories might have been embarrassing to her, so I decided not to publish it until she passed away. Even then, the thought of publishing these personal stories still terrified me. But I did it, because I learned so many unforgettable lessons during my time as a caregiver. Here are just a few:
• Don’t take it personally. If your loved one suffers from any form of dementia, the changes to his or her personality are a bitter pill to swallow. It is a brutal emotional struggle for a caregiver. Try to remember that it really isn’t directed at you, or your fault – it’s part of the disease.
• Celebrate the good days. One of the hardest realisations for me was that my mother was not going to get any better. It is easy to fall into a state of mourning as a caregiver when you are watching your loved one decline. My way of dealing with that was to make the most out of her good days. She loved being outdoors so on good days we did something outside. Early on she would help me in the garden. Toward the end of her life, we could do little more than roll her outside to enjoy the pretty weather. I could always tell how much she enjoyed being outside.
• Take care of yourself. It took me a while to learn this lesson. I was so focused on caring for mom that I did not see what the stress of it all was doing to me. I was fortunate to have the help of two siblings during my caregiving years. I learned to ask for their help. I learned to get some exercise. I learned to keep my mind busy and my hands busy – I learned to make bread and I learned quilting. These were things that I hadn’t had time for before.
• Remember you are not alone. Even with the help of my family, there were days that I just felt so alone as a caregiver. When you are feeling that way, pick up the phone and call a friend. You will be amazed at how much better you feel when you share your feelings and have someone to help you through it. Also, there are so many resources out there now for caregivers. There are wonderful books written by authors who have been through what you are experiencing. Read some of these books and you will realise that there is a wealth of information and support available to you.
Sharing my message
My goal in writing the book was to deliver a very heartfelt, uplifting message about family caregiving. Based on the sincere, touching reviews the book has received, I think I succeeded. One reader emailed me and explained that she felt such guilt about whether she had done the right things for her parent until she read my experiences and saw they were very similar to hers. To know I may have helped even one person to deal with the powerful emotions of caregiving makes me very grateful. But I hope that it’s much more than a book about caring for an aging parent. It’s a book about a life well-lived. It’s a book about treating others with dignity and respect. It’s a book about love.
Trading Places: Becoming My Mother’s Mother is available on Amazon and Kindle.