Just a few days after Labor Day, we took my dad to the hospital after noting some confusion. This happened back in July as well, and when an MRI was completed we discovered that there was swelling in his brain as a side effect from radiation. We all- family and doctors- assumed that was the problem this time. So the doctors loaded him on steroids to reduce the swelling, just as he we had done in July.
But there was one problem: We were wrong.
Whatever was causing his initial confusion was not radiation necrosis- nor was it cancer related. But it was too late. The extremely high dose of steroids put him into a steroid psychosis. We ran all kinds of tests those first few weeks. We were ecstatic that the cancer in both the brain and the lungs were shrinking, and even more relieved to find that there was no cancer in the spinal fluid. My dad went through two spinal tap tests, a 24 hour EEG, an MRI, and multiple blood tests. And during all of this, he went from periods of unresponsiveness to seizures to hallucinations. He wasn't eating or drinking. He was wearing a diaper.
In the last week or so he has started to slowly come out of the psychosis and come back to us. He could eat if he fed him. He was following simple commands. He stopped repeating what we said and the hallucinations seemed to settle.
He has now been moved to a rehabilitation facility to get physical and occupational therapy. Sitting in a hospital bed for a month has caused him to lose his strength. There are still moments of confusion, but he is making tremendous progress.
The month has been hell. I cannot begin to express how terrifying it is to watch your dad become unresponsive. But I certainly have learned a lot.
10. There are secret angels in the hospital- and they aren't always the medical team. I loved my dad's nurses. but I also felt so much comfort from the Starbucks barista's. Which may seem silly, but they learned my name and always asked for an update on my dad. I change my order up all the time so they would try to guess what I was getting that day.
9. Your routine will HAVE to change- and that's okay. Just let it go. Realize that instead of heading home after work to cook dinner or to have book club or workout may not happen. Visiting at the hospital will take priority. Running an errand for the other parent will take priority. It's okay. I did my fair share of complaining, but have come to accept that routines sometimes just have to change.
8. Not to send conflicting advice, but you will also need to find time to do something for yourself. This morning I got up and went for a run- because I had to do something for me where I wasn't thinking about my dad.
7. You will run into some really cranky people at the hospital- but remember that you have no idea what they are dealing with. Don't take it personally.
6. Sometimes you need to be an advocate for your parent/loved one who is in the hospital. If you think they are uncomfortable or aren't getting what they need, SPEAK UP. It's an odd role reversal- we are so used to our parents taking care of us and helping us to address our needs- but now, it's up to us to care for them. So speak up.
5. Music really can heal. In the days when my dad was totally unresponsive. I played music for him and he would flutter his eyes or tap his fingers...once he even cried. I honestly felt like I was witnessing a miracle. Another time he was particularly anxious, so I played music again and he calmed down in seconds, singing along and requesting songs. His favorite? Susan Boyle's 1st X Factor audition.
4. Some people i your life will disappear when you need them the most. Often it's because they "don't know what to say". Call me selfish, but I think that's a silly excuse. You don't have to KNOW what to say, or just say SOMETHING. To ignore your friend when they are going through this hell is only adding to their stress/grief. I really struggled with this and felt like on top of everything else, I was losing friends. But what I learned is that we can't control what other's do or don't do or say or don't say. It hurts, and it sucks, but if they can't set aside a few minutes of their precious time to be there for you, they really aren't the kind of person you want as a friend.
3. Although some people disappear, there are so many others who are willing to help. For my family, that was primarily our close friends and our church community. They brought meals, sent cards and flowers, Some sat with my dad when we couldn't or ran errands for us. They WANTED to help and wanted a concrete way of helping. Let them help. Give them a task. It's not selfish.
2. You faith will be shaken and you will want to break down. THAT'S OKAY. Have a breakdown- shoot, have five. Cry, yell, scream, shout. Do whatever you need to do. You are free to feel however you want to feel.
1. There is absolutely nothing more important than family. I work for a large nonprofit and we have several events coming up- this is our crunch time. I should be spending every moment working and getting ready. But I'm not, and everyone gets it. No matter how important or crucial your job is, your family is so much more important. And things like this will bring you even closer together.
