I often struggle with how much to share publicly.
But then I remember that Chad told me to share it all — he wanted others to know what it’s like and he wanted people facing a similar situation to understand what it’s really like — what the doctors don’t prepare you for; what no one understands until you live through something such as this.
So, here I go.
Since Tuesday, Chad has been comfortable. He has had around-the-clock care by a dedicated, compassionate, loving staff that have his best interests, comfort and dignity in mind.
He slept for the most part, and had some pain on his right side when he moved or breathed deeply. The bruise on his right side from falling on the bathtub late Tuesday afternoon is hideous – it makes me cringe to see it.
On Wednesday, Chad was more alert. His mom came to visit and we spoke with the resident doctor. She adjusted some of his seizure medications.
Wednesday evening, after dinner, he became agitated. He, clearly, did not want to be there.
Which I understand. No one would want to be in unfamiliar surroundings. He hates the bed alarm — which goes off to alert the nurses when he tries to get out of bed. He doesn’t quite understand why he’s there, even though we’ve assured him it’s for his safety and medication control.
He lashed out at me, very upset. He demanded that I leave, and I told him I would. He yelled that he hated me and wanted me to leave. Repeatedly. He grabbed my arm, twisted it.
As I packed my belongings and cried to myself, he spun his wheelchair in between me and the door. Even though he wanted me out of there, he didn’t really mean it. He just couldn’t say it.
So, I stayed. And I cursed those tumors for taking control of his body and mind. It’s so unfair.
We both slept okay.
There is a particular nurse aid that he doesn’t care for. She is very pleasant, but something about her just doesn’t agree with Chad. I think he’s just tired of seeing her so often – when the bed alarm goes off, when he needs assistance to the bathroom, etc.
On Thursday, he became agitated with me again. I agreed to leave, as I wasn’t feeling well and felt it might be best to get some uninterrupted sleep at home for the night. He was also running a low grade fever, and he needed rest as well as I did.
I called to check on him around 7:30, and the nurse alerted me that Chad was extremely angry.
He threw his dinner across the room, hit the nursing staff, refused his medications by clenching his mouth shut. He even tried to escape, which I find alarming. He was half way out the door with the nurse aid (the one he doesn’t like) before she able to get help.
He indicated he wanted to talk with me, which surprised me. He’d been giving me the silent treatment all day, except for asking me to leave.
He has a hard time communicating, but was able to repeat a key phrase over and over, “I’m finished.” He wanted to come home. And that hurt my heart.
I talked with him for a few minutes and he told me he wanted me to come back. I told him I would, and that I needed to speak to the nurse again. He didn’t want me to speak to her, so he slammed the phone repeatedly on the counter. Apparently, he dropped it — and I heard a lot of commotion.
Then the phone went dead.
I called back immediately, to find out he pulled the phone out of the wall and the phone at the nurse’s station was out of service for a while.
He was violent with the staff and it was decided he was endangering himself and others – so he had to be sedated by injection. I was completely saddened to hear this. And I know that is not my Chad. It’s the tumors.
After talking with the nurse a few more times, I decided to come back the following morning. We didn’t want to further agitate him by me showing up & him thinking he was going home.
While I feel sick that he was so upset, I am also relieved that someone else was the target of his anger this time — it makes it more real to me. He’s not just lashing out at ME, he’s just lashing out.
On Friday, I arrived to find him being wiped down with cool compresses to control his fever. He was soaked with sweat. He didn’t remember the events of the previous evening. . His eyes were huge — wide! I could tell he was getting a little agitated by his “favorite” nurse aid, and the nurse recognized it too. They were able to calm him down with oral medication before he started acting out.
He did refuse a few meds; mostly any liquid in a syringe. He recognizes the pills he took at home, so he usually takes those with no problem. But if he sees a syringe coming towards his mouth, he clamps his mouth shut. We were able to convince him to take one syringe and once he was alseep, the nurse administered the other without his knowledge.
Late morning, he had some visitors; his mom and aunt and uncle. He slept a lot of the time they were there, but I know he had to enjoy spending some time with them.
He had a small focal seizure in his right arm, which was treated with Ativan to keep a larger seizure away.
He didn’t eat a whole lot Friday, but he did eat. Which is better than nothing.
The staff doctor came in again, just to let us know she was adding yet another seizure medication (Depakote) that would play double-duty as reducing his agitation. She stressed that she didn’t want him to get hurt during an outburst and she didn’t want to have to sedate him with injections if he got out of control.
Again, I decide to leave and let him rest.
I called to check on him Friday night and was told he was agitated again, but nothing compared to Thursday night.
He continued to run a fever, also.
Saturday – today.
Still, the fever. He didn’t have much of an appetite – which is understandable.
He was sleeping nearly all day.
I got him to eat a half of my sandwich around lunch time, and then again a few hours later.
He seemed to be having a little difficulty talking and preferred to be asked simple questions he could nod or shake his head to answer.
Giving him choices or too much verbiage seemed to confuse him today more than normal.
He also stayed in bed all day, and made no attempt to get up unless he needed to use the bathroom.
I called to check on him around 6pm, and he was still sleeping. He was definitely more tired than normal today.
I noticed that his right leg, the one that isn’t really functional, looks different in appearance today. It’s much slimmer than the left leg, and I understand that’s from lack of proper use. It was just a little bit of a shock to see it.
I feel so sad for Chad. I can’t imagine how frustrated he must be — to be trapped in a body that won’t cooperate well, to try to communicate and know what he wants to say – but not be able to say it. I just can’t imagine how he must feel to lose control.
Carys & Cailyn have bee having fun playing with friends and cousins this week. My mom has them until tomorrow afternoon.
I will definitely be by Chad’s side all day tomorrow, and will bring the girls by to see him on Monday after we complete 1st grade orientation at Carys’ school. I can’t believe we have a 1st grader!
School shopping is complete – for the most part. Next week will be so chaotic, trying to get back into a schedule and making sure the girls get to spend as much time with Chad as possible.