Today was an interesting day to say the least. My husband’s doctor finally wrote a note for him to help get approved for his pension and SSDI. He is still having seizures so, she doesn’t want him left alone. She said he needs a caregiver until he can get stabilized. He also is not allowed to drive. His diagnosis is partial complex seizures and encephalomalacia with memory loss for the basis of needing a caregiver. Encephalomalacia is softening of or missing brain tissue. It is difficult to treat encephalomalacia. It is not possible to cure, as destroyed brain tissue cannot be regenerated. Treatment consists of detecting the underlying cause and treating it. Severely damaged brain tissue may be removed by surgery. He also has Gliosis of the brain, which is scar tissue of the brain. She wrote he is not to be left unattended because of his seizures. His liver function test was a bit high too, so they are thinking of changing his seizure medication again. She also questions if he even had Bipolar 1 because his symptoms did not start until after he started his seizure medication. A neurologist and mental health doctor will work with my husband and I to figure out his next course of treatments and medication needed. At least we have the paper to help him get his pension so we can pay for rent and bills while he is being treated.
We were approved for housing today and should have something by the end of this week. I am excited, but worried because we have zero money coming in. It’s hard for me to get him everywhere, care for him, and work. I am not sure how I can do both if he is not supposed to be left alone. If his pension does not get approved in a couple of weeks, I have no choice but to find a night job and take him to appointments in the daytime. I will have to work 8 hours at night and care for him in the day in order to pay our bills too. His seizures are mainly in his sleep, so I will just have to pray he will be ok while I am gone.
With all this going on, I have been having major chest pain off and on for weeks. I get pain in my neck and arm too. When I try to go to sleep, I am jolted awake by the pain and have to try and go back to sleep. This can go on for hours every night and has caused me to have sleep deprivation.
Tonight, at about 8PM, I started having the chest pain while just sitting and playing a game on my phone. I took a bath to calm down, but I just felt worse. The pain caused me to go into full-blown panic attack. My husband was sleeping and I had to wake him up to take me to the ER. He didn’t help me get dressed and seemed upset that I woke him. When we got to the ER, he didn’t help me into the building. He stayed behind to smoke. I passed out and someone in line had to help me into a wheel chair. I was rushed in to get an EKG which just showed a faster than normal heartbeat (128bpm). I was given papers to fill out. By then, my husband was by my side and didn’t even help fill out anything or push my wheelchair to the room. He was more worried about being hungry and mad at the staff for walking by with pizza. Is this how my life is going to be forever? No one giving two shits about me? My spouse only worried about him and his needs?
The Doctor told me my heart is ok. No blood clots, X-ray was fine, EKG fine, cholesterol and electrolytes fine, everything is ok. He said I have panic disorder and I need to start taking care of me! He is right! I am going to the free mental heath facility he told me about and going to see a counselor and possibly get on anti-anxiety medication. I am also going to quit smoking and REFUSE to do every little thing for my husband. He only needs driven around and monitored for seizures. He does need reminding of things he needs to do, but I am going to start making him write his own reminders down and have him put them in his phone as well. He can fill out his own paperwork and talk to his own doctors about his needs. If he gets frustrated or forgets something, I will be there to help. That is the only point I will step in and speak for him to his doctors unless I am relaying important medical information I know he doesn’t understand. He also has issues comprehending what the doctors say and, for that, I will explain everything to him and write notes.
I am not abandoning him, I am just going to make him do the care for himself I know he can do. We did this for patients when I worked in nursing homes. It helps them be more self sufficient, keeps them active, and teaches them coping skills. I am also not going to put up with being called names or taken for granted. He needs to learn that if this treatment does not stop he will be alone for sure. I will leave. I deserve better than this. I have already given up everything to help him. If he continues with this treatment, I am going to go. I just can’t take anymore. I now have panic disorder because of all of this. I deserve to be loved and cared for as well. This all can’t be one sided. He thinks that he gets a get out of jail free card because of his brain injury. He does not. He can’t keep mistreating people and expect them to stick around.
Tomorrow I am quitting smoking and going to the walk-in mental health clinic. I am going to take care of me tomorrow! It’s time I do something to help me for once. I am also taking that walk around town and on the beach that I missed out on today. Of course all this will have to be worked around my mental health needs and our housing needs IF the case manager wants to meet with us tomorrow. I’ll take housing over the beach for sure!