One of the most prevalent issues I see in my work is how someone’s memory loss and confusion affect the loved one who is caring for them. In some rare cases family members all pitch in to help and support one another, but that is not the reality for most family caregivers. More often than not, the bulk of care giving falls to the adult child who lives the closest, or who volunteers first.
Sometimes family members stay away, not because they don’t care, but because it is just too hard for them to see that their parent has changed. Elie Wiesel compares the sufferer of Alzheimer’s disease to a book in which each day a page is torn out until all that remains are the covers of the book. After working with many people with memory loss and their families, it does seem that the family members share as big a loss as the victim of the disease. Like their loved one, they too are in limbo. The person they love is here, but part of them is already gone. It is too late, yet too soon to say goodbye. For the family member who is their primary caregiver, there is no greater gift they could give them and they live with few regrets long after their gone, except for one, which is that in the process of caring for them, they may have forgotten to take care of themselves. It is often true that the support we give the ones we love, far surpasses any support we give to ourselves.
Many of us have heard the analogy of the flight attendant on a plane explaining the oxygen mask procedure. Should we lose cabin pressure, the oxygen masks will drop down. If you are traveling with a small child, please place the oxygen mask on yourself first, otherwise you could lose consciousness while trying to help your child and then neither of you will be able to breath. And this is true for caregivers. If we spend all of our time and energy on our loved one, and none on us, we become exhausted, burned out, and sometimes even sick to the point that we are no longer able to care for anyone.
So how do we take care of ourselves when we are overwhelmed with all we have on our plates?
Seek practical support and ask for help. Maybe your brother or sister can’t spend a lot of time with their parent who doesn’t really seem to know them anymore, but maybe they would be willing to help you. Perhaps they don’t even know where to start because you seem so capable. So be specific. You could request that they go grocery shopping and give them a list, cook a meal, walk the dog, mow the lawn, make home repairs, pick up your kids after school, or pay for things that are needed. If there is no one else or they cannot help, you may want to consider hiring a caregiver.
Seek emotional support. Challenges almost always seem less daunting when shared with a friend who is willing to listen, especially if that friend is someone who can imagine walking in your shoes. By joining a support group you can spend time with people who understand your situation, and may have been living with it longer and can offer some great advice. (please visit alz.org for support group information) People tell me that before they came to a group they felt like they were the only ones going through this and then realized they were not alone at all. Many of the participants got even more out of it by supporting the other members. Sometimes one of the members would tell a funny story that only the participants of the group would get, and the seriousness of the subject would release into long needed laughter. One man told of the bright side of having to move into an Assisted Living together when his wife’s dementia worsened. It seems she had been hiding money all around the house for years. She hadn’t told anyone and forgot that she had done it. When they moved out, he and his children found over $10,000 hidden in the house.
Support yourself. Take care of yourself and take time for the things you love to do. Spend time with friends and family, see a funny movie, exercise, sleep, eat healthy, read, spend time with pets, see your doctor if you are feeling run down and don’t skip health appointments. If you take care of yourself first, you will be able to take care of the people you love.