If you're an avid reader of this blog, you know that I typically post on Mondays, Wednesdays, and Fridays. But this week, I had a family emergency that barred me from being able to post.
When we arrived at the VA, it was difficult to see my Grandy in the state he was in. He was still responsive, but obviously couldn't talk with the ventilator crammed down his throat. He was able to use hand signals to communicate, but he was obviously tired from fighting so hard.
In order for you to understand the prognosis they gave us, I need to tell you about my Grandy and some of the medical conditions he has. Mostly, his problems seemed to be centered around a rare genetic disorder we were all aware that he had: situs inversus.
Situs inversus is a medical condition where the internal organs are reversed. In other words, his heart liver, stomach, and spleen to name a few are all flipped or on the opposite side of his body. This disease is related to another syndrome called Kartageners, which limits the number and function of tiny hairs around the body that work to clear out mucus. Because my Grandy is missing many of these in his lungs, it makes it more difficult for his body to cough up and get rid of mucus and infectious substances.
These syndromes coupled with his pneumonia made my 74-year-old Grandy super sick. It also ended up causing extra stress to his heart and limiting his kidney function. At the time of writing this, they are growing a culture of the bacteria in his lungs to see the best way to treat it. He is breathing on his own now, and they are expecting to remove the ventilator and give him oxygen support. His kidneys are functioning well again, and they are draining some of the fluid collecting in his lungs.
As you can imagine, all of this was very difficult to process emotionally. I had just seen my Grandy weeks before doing so much better and laughing and having a good time while we visited. The VA told us we should probably set up hospice or end-of-life services, or be prepared for him to live the rest of his life on a ventilator. Luckily, he was sent to a bigger hospital that could do more for him.
Here are some of the things I learned when I was a caregiver full time for three days:
IT IS PHYSICALLY EXHAUSTING
Walking around a huge hospital is hard enough. Add sleep deprivation, bad nutrition, and pushing around someone else in a wheel chair and it can get exhausting pretty quickly.
The VA didn't transfer my Grandy until about 10:30 p.m., and the other hospital was about 45 minutes away from the VA, so we were at the other hospital at around 11:30 to midnight. We went to the waiting room, but he wasn't available to be seen until around 2 a.m. Then we had to wait for a doctor to come and ask us questions and tell us the plan. We ended up settling down in a hotel room around 3:45 a.m., but we were set to get up around 8 a.m. so we could try to make it to the hospital at 8:30 a.m. when the doctors were doing their rounds.
WORKING FOR OTHERS CAN BE STRESSFUL
As I said, I was traveling with my grandmother who has issues with her memory and it causes her to be somewhat combative when my mom and I tell her to do something so we can get going. I'll give you two examples:
To begin, my grandmother tries to often do things that she just can't do on her own. She walks with a walker. We were loading up the van the other day and trying to hurry so we could get to the hospital on time before they started. She was trying to load heavy bags and her own walker into the car, and she refused to listen. My mom had to pry a bag out of her hand to get her to get into the car.
Another thing that happened was that my grandmother kept having accidents. This is a combination of old age and of her not taking her medicine properly. She had accidents so much so that I had to bring her more than six or seven changes of clothes for only two days. She ended up causing an issue in my Grandy's room and he told us that she needed to go home. I guess that the nurse caught some of the tension and ended up threatening to kick my mom and grandmother out, even though no words were said.
NOT ALL MEDICAL STAFF ARE ACCOMMODATING
The first issue came when my mom tried to speak with the nurse regarding the rule about only two people being allowed in the room. My mom is my Grandy's healthcare power of attorney, so she is the one who is supposed to make decisions and sign off on documents for my Grandy and my grandma. This was decided because my grandma's dementia and how out of her head she gets when she is off her meds. My grandma can't understand what's going on or the risks associated with different procedures, so my mom asked the nurse if all three of us could be back there.
The nurse said it would be find if we were all back there during the doctor's rounds, but she said she was here for my Grandy and didn't want to put up with arguing. She apparently had sensed my mom was angry with my grandma when she had an accident beside his bed, but who wouldn't be. She said she didn't say anything to her. On top of this, I had to be the one there to push my mom around, yet the nurse was still insisting that we only have two people back in the room after the doctors left.
So instead, I asked the nurse if she or someone could come and get us when the doctors came around because, even though she was being difficult, we didn't want to tell my grandmother she couldn't be beside her husband. The nurse answered "that's not my job, I don't have time for that." We had already been there for several days and had witnessed several nurses and doctors coming out to the family waiting room to notify family members of the status of their loved one, so I knew this was a lie.
I was further angered when we walked by a few minutes later and this same nurse was chatting about her day (not patient related) to two other nurses who had stopped by her desk. Another thing that happened was that she knew we wanted to see the doctors and hear the medical plan. Instead of just letting us know they were outside of the room when the respiratory team was with my Grandy, she let them get through their round and mentioned it when my mom asked about an hour later.
Luckily, the head nurse was able to help us for the remainder of our visit, and she claimed she would speak with the nurse about how she handled the situation.
At the risk of making this blog too much longer, I think I will leave it there. Overall, I've found a new appreciation for people who dedicate their lives to taking care of others and their loved ones. I was of course happy to do all that I could because I love my family and I wanted to make sure they could be together.
I hope you will say a prayer for my grandfather in hopes of a speedy recovery! Thanks for reading. Feel free to share your stories about being a caregiver down below!
LEGAL: All photos are my own or taken from Pixabay.com, a creative commons website where attribution for photo use is not required.