Day 29 – Never a Dull Moment – Thursday, May 4

This has been a very emotional last couple of days. These last few weeks have really gone by so fast. Today is 4 weeks since Mom’s stroke. It’s crazy to think about how far she has come. Her stroke was so severe that the neurologists and doctors who were there when she was admitted were not hopeful of a positive outcome. We really couldn’t think about anything too far into the future.

When she arrived into the ER, she was in a coma and unresponsive. They prepped her for the surgery to remove the clot and before going in, we were told that there was a chance that she wouldn’t survive the procedure. We had no choice but to try really, because without doing it, there was a 100% chance she’d die. She made it through surgery and the next hurdle was whether or not she’d wake up. If she did wake up, how much brain death had occurred? They couldn’t get all of the clot, so her vision might be impaired. Would she speak again? Would she breathe on her own again? Will she eat again? Walk? So many questions and there was really no way to know.

When she woke up we were told that it might be a possibility that she’d need a tracheotomy and a feeding tube permanently. She might have double vision forever.

Since then, she is breathing on her own. She does have a g-tube, but she’s starting to take some food by mouth. Ice chips mostly, but she’s had pudding the last couple of days. Her speech is coming back. We can actually say that her primary communication method is speaking! Her balance is improving. She can sit on her own for 20 or so seconds (trust me… that is a HUGE deal). She can stand with just one person helping her. It used to take two people, and one person was basically hugging her the whole time. Her double vision appears to be GONE! These are all things that most thought she would never be able to do. Not EVER, let alone 4 weeks.

With all of those positive things there are some other things that are happening that we are learning how to deal with. Sleep schedules are wacky but the mental/emotional side of things are the most concerning. Although concerning, it’s not uncommon. Chad had mentioned in a previous post that highs can be really high and lows can be really low. I will spare you the details but I am sure you can understand that if you are not in the right mental state pushing yourself through several hours of therapy is extremely difficult and tiring. The more tired you get the more it can affect your mood and your ability to think clearly. It can be a dangerous, ugly cycle and it’s one we are trying to break free from.

Yesterday I was very upset about being given a discharge date of Monday. We did find a place that we really like for her but I was hoping for more time with intensive therapy because of the great progress we’ve been seeing. This morning when I went to see her, mom had made it clear that she didn’t want to stay one more night in the rehab center. She had a lot of things to say today, and much of it not very good. Perhaps being given that date was a blessing in disguise. Throughout the day I was able to speak with her and come up with a plan for each day to help her manage her fatigue and frustration. I told her about the other facility that we found in the hopes of giving her something to look forward to. After I thought I managed to get her sold on the idea, I was told that the team had another meeting and changed her discharge date to next Friday, May 12. Normally I’d be happy but I was really conflicted given the earlier conversations I had with Mom. Long story short, I was able to get her to agree to give our newish routine a chance. No more back to back therapies, some adjustments with her medications, making sure she has time to sleep, and ensuring that we are finding the absolute best fit for her next level of care.

This is a long post, I know. I have been trying to keep my posts pretty positive and focused on her progress. However today was a big day. Not only did today mark her first 4 weeks as a stroke survivor, but we had a very big obstacle that we needed to confront. Getting Mom to commit to the rest of her recovery is so important to me. We cannot do this for her. She needs to want to do this for herself. If/when you come to see her, PLEASE do not tell her not to cry. It is OK to cry. Sometimes it can’t even be helped. PLEASE do not talk to her about her medication or treatment plan. Visit her as her friend. You aren’t there to treat her as a medical professional. We already have people there to do that. Support her. Love her. Encourage her.