I got a call that my mom got out of carotid artery surgery and was doing great. Only a few hours later we were told that they couldn't remove the breathing tube, she still needed it. When I heard that I got pretty scared. My family headed that way, nearly 1,000 miles away. She was sent to ICU after a bed was available, more than 12 hours later. Mom was in there for about 2 days and was able to get off the breathing tube. We then got a call in the early evening that she was turning blue and they had to put the tube back in. I was so discouraged by this and felt helpless.
That all happened in the middle of February and now it is the end of March. We went and got my mom after she was out of the hospital and was in rehab. We moved all her stuff out of her little one bedroom apartment. What an overwhelming experience that was. It was overwhelming because I had to make a choice for my mother to move her things and move her to another state. It was also overwhelming because I had to go through all her things, her life's possessions and pack them. You really get to know someone very closely by handing all of their belongings. Mom I can't wait to ask you more questions about when you grew up. I find myself wanting to know as much as I can about you.
Charlie, my son who happens to have autism, is now 17 years old and caring for him over the years has taught me how to care for my mother. The way I helped my son and continue to is similar to what my mother needs right now. She needs to be given a heads up about what is coming next. She needs help with getting her words out. She needs reinforcement after she has completed a hard task. She needs help being motivated to do hard things like walking and eating right now. My mom is confused about her surroundings and people she knew. I don't think she still understands who I am. She recalls things from her childhood or making things up that never happened as well. The stroke she had affected her speech, swallowing, memory, and she is very confused.
When Charlie was struggling years ago (daily tantrums, lack of language, pinching others, and hitting himself) it was hard mentally.
It was hard to watch my son struggle.
It was hard to see him hurt himself.
It was hard to look in his eyes and see confusion and frustration.
It was hard as you had to plan ahead on everything.
It was hard when we had to leave restaurants, activities, or anything that had him experiencing sensory overload.
As we help my mom bathe, change her in the bathroom, comb her hair, help her walk, help her to eat it is hard mentally and physically.
It is painful to watch.
It is exhausting.
I feel sleep deprived.
I feel frustrated in how can I help more.
I feel overwhelmed with all the details with insurance, ID cards, doctor visits, and all the financial responsibility it brings too.
Who cares for the caregiver?
I get to do that too.
I have to take care of myself so I can take care of my mother and Charlie.
How do we do it all?
Well it is a conscious effort to take care of yourself as you take care of others.
Boundaries on helping others should be put in place, set limits.
Make a schedule and try and stick to it.
Schedule in respite times somehow.
Do something you love to do weekly.
Reach out to others for help and talk to others if help is needed.
You have to care for yourself so you can take care of everyone else. As I type these words I am reminded to do what I encourage others to do. Take care of yourself so you can care for your loved ones too.