The Daily Struggles of Two Caregivers

In my first posting about Caregivers, I emphasized that caregivers must have a break or help from others to prevent burning out. In this article I will describe in detail what my daily activities are and how I manage not to burn out. The second story is a conversation of myself and another caregiver of how she manages her life and at the same time taking care of her husband. She will remain anonymous for privacy reasons

One of my primary duties as the primary caregiver for my wife who has Parkinson's Disease is to help her take her medications on time. The second item is to insure she take balance meals and reminds her of her daily exercises. If its a good and sunny day, we will take a short walk around the house perhaps from 5 to 10 minutes depending in how she feels that day.

My wife needs help dialing the phone and putting on the TV. In the morning she is sometimes weak before she takes her medications. Later on in the afternoon, she feels better and will try to help me cook dinner. Before I know it is time to bed. This daily routine is only interrupted by our twice a month trip to the Casinos and Dinner. Her monthly beauty shop and quarterly trip to two doctors-a GP and a neurologist is another break in our daily routine. There are times when she feels like going to church or to the Filipino store after church, otherwise we attend mass in Television every Sunday. My son who lives with us and works full time help me takes care of his Mom on his day off. Without my son's help, I probably would have burn out by now. In between my care giving duties, I manage maintaining my blogs, writing activities, and play computer games(bridge) for my own mental health.

The following is a FB conversation between myself and a long long time friend who is also the primary caregiver to her husband suffering from a rare neurological disorder. For the sake of privacy I will just call her FBM and her husband Steve( not his real name)

"Hi Dave, Just started a while ago face booking and I saw your message. I am sorry I was not able to respond to you soon today. Great to be able to contribute on your new article about caregivers. Being a nurse helps me a lot understanding the medical "lingo" thrown at me whenever I take Steve to the doctors. Taking care of Steve and understanding his illness are challenging but I can handle them.

The hardest part I went through and is still is, is making decisions for every day problems, whether I should do this or do that without getting a second opinion from somebody I trust. I guess I was afraid to make a mistake then and even up to now with my decision making. An example is our rental house, which I am debating whether to upgrade the bathrooms and the flooring; will I have to increase the rent and how much? I guess we grew up in our culture that expects the man/husband to do the decision making for the family and that's how I got used to.

So, since Steve became ill, I have to learn fast and do all the decision making. Reading books, navigating the internet, talking with friends are my resources to increase my knowledge on problems/issues I have to solve.

Praying also helps me a lot to ease the burden of making a decision. Since I am able to leave Steve alone for 2-3 hours, I can see my friends for lunch or go do my errands which is a great therapy for me.I walk everyday as much as possible for half an hour for health reason. I still do the housework but I am not over zealous in keeping our house neat, tidy and clean.

I hired a gardener and a pool cleaner when Steve started to get sick so that has been a big help for me. My oldest son and family live closely so if in emergency I can call him or his wife to help me out. Just this week, my daughter in-law took my car to Modesto for front power window repair. I have a handy man who helps me fix little things in the house. I enjoy reading articles about caregivers and I know your article will be a good one for me to read once you have finished it. I hope my little contribution may add a little insight to your project. Love and regards to Macrine."

My response: Hi FBM, thank you so much for your reply. Your detailed response is much appreciated. I think, I will make a separate article on this. I will not mentioned your name, but your personal experience will be helpful to others who are in your situation. Again may I reiterate that as a caregiver, we should not forget to take care of ourselves otherwise we will burn out.