For me, when my Dad started to act strangely and make some bad decisions, I was confused, and could not tell if he was changing into an irresponsible person or if he had a medical problem.
At one point, he tearfully told me, “There something was wrong and I cannot think straight. Please help me.” Then he started to have small tremors and walk stiffly. It took over two years to find out that he had a progressive condition called PSP (Progressive Supranuclear Palsy) that affected his movements similar to Parkinson’s and that it also affected his brain in ways similar to dementia.
Our roles as father and son dramatically changed as he moved in with us, and I experienced mood swings from trying to do everything for him, to trying to teach him everything to do, to blaming him for his mistakes or problems. My instinct was to protect him, but I couldn’t protect him from what was to come.
As a caregiver, my biggest mistake was to view this as a personal failure. Also, how did he feel? Now, he needed help and felt helpless in his new world. Physically, stairs and bathrooms became difficult and painful places, as he needed assistance getting into the shower or up the stairs. He started to blame himself, thinking about anything he had done that might have caused this condition or maybe he should have done something differently to prevent this.
No matter what the cause, these life-changing events, create a common process of how to deal with this change. A simple fall or a visit to the doctor can change a person from giving help to needing help. For those of us that dare to love them, everything changes for us as well. While we understand that it is okay to mourn a loved one that dies, we do something very different when they need our help. Welcome to caregiver guilt.
Maybe there are people in the world that do all they can, feel their love so strongly, that they never develop this guilt. For the person that need help, maybe there are people that know they did everything right and did not do anything to cause this problem for themselves. For the rest of us, we have to move through this process so that we can deal with the situation in a constructive way.
Here are my 6 steps to moving through the guilt process (By the way, I am still learning this, so if you have advice from your personal experience, please share it with me):
- Realize that how you feel is normal. Everything has changed for you or someone you love, and it is natural to mourn that change and resent it. As humans, we have the gift of emotions, but we have to accept that gift in all its difficult moments.
- This is a process, and you won’t be productive or feel productive every day. Give yourself time and grace. You will try to learn everything, realize that you will never know enough, try to prevent every bad from happening, and fail as often as you succeed. You will forget your successes, and only remember your failures, so hold on.
- Express your emotions to the other people you care about whatever you feel. If you can’t put it into words, share the frustration. It is normal. My mistake was trying to be strong, and it took a long time to be okay with what could be done and what just had to be endured. Don’t shut out people who try to help even if they frustrate you. Admit you are doing your best, and that you will continue to get better will help you enjoy the time you have together.
- Ask for help and meet people that are in a similar situation. Most of us are not trained for this. My favorite day was a support group where the caregivers were separated into our own group. I finally realized that everyone in this situation was dealing with the same reactions and feelings. You can also meet people that have moved through this process to become amazing caregivers and inspirational people that you will never forget.
- Realize you have limits. You need to remain healthy and have backup plans that give you respite. You need to be at your best, and you can’t do that every moment especially if you are pushing yourself beyond what humans can do
- Tell them you love them, remember the good days, and create new memories as you deal with what is happening. Don’t just handle it. Take time to have simple fun and live life. Share your love and gratitude every day, because the more frustrated you are, the more everyone around you feels it.