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My mom tried her best to avoid having a stroke, following all of the guidelines. She had a minor stroke several months ago and scheduled a test a few days after her 80th birthday (March 7th) to determine how much blockage she had in her carotid arteries. The test showed she had severe blockage in her left artery and significant blockage in the right. Her Dr. scheduled a stent surgery for several days after the test.
March 14th, within 36 hours of the test, my mom woke up not feeling well and called her Dr.'s office. The nurse told my mom it sounded like she was having a stroke and to get to the Heart Hospital ASAP. My brother came to pick her up and had her in the hospital emergency room within minutes. She was seen by the emergency staff and then was admitted to a room in the Heart Hospital. The Dr decided to move her stent surgery to the following day. Several hours after being admitted to the hospital, while sitting in the hospital room my mom suffered a massive stroke. I certainly have a lot of questions about how this could have happened... why they didn't give her the "clot busting" medicine or admit her for emergency surgery? I intend to get to the bottom of this but for now, my main concern has been caring for my mom and this life changing stroke.
My mom suffered brain damage to her left frontal lobe. She has aphasia which means she can not speak, can not find words, identify objects, read or write, her reasoning abilities are no longer intact and her short term memory appears to be affected. Her throat was affected and she can't swallow without choking and/or aspirating food and liquids into her lungs, so therefore she is on a feeding tube. Her right arm is completely paralyzed and her right leg is also affected but not completely paralyzed. For those of you who know my mom; you know she had polio as a child in her left leg, so her right leg has always been her "strong" leg. Now she is having to rely on her left leg which has no quad muscle because of the polio. As I'm sure you all can imagine, without the use of her right arm and leg and having to fully rely on her disabled left leg and her left arm..combined with the brain damage, standing without two people helping her has been impossible. What she can do is recognize people. I believe she understands most everything we say to her and remembers things from her past. She watches TV and loves her favorite local sports teams; OKC Thunder and Sooner football. Even though she can't talk she enjoys visits from friends and family and just having us in the room with her.
Today is June 3rd and the last two and a half months have been a hard and drawn-out emotional rollercoaster, a lonely tiring journey.... with many very small ups and MAJOR downs. I arrived in OKC as soon as I could get here on March 15th. After the stroke, the Heart Hospital sent my mom over to the ER at the main Mercy Hospital. Mom was in ICU and even though the Neurologist had originally thought things were only going to get worse, they started getting better. My mom had a Living Will and DNR which my brother and I followed to the last detail. She exceeded the expectations of her Dr and was moved up to a room in Mercy and stayed there for several days. She was improving but my brother and I had not yet decided to put her on a feeding tube (she was on IV Nutrition); but in order to get her moved to Mercy Rehab instead of a long term acute care center they had to have a way to feed her, so we decided to go for the tube and give her the best chance for recovery. She moved to Mercy Rehab the next day. I was so elated she was accepted to rehab thinking she was on her way to getting better. What I found out was (because of the brain damage) if she was going to get better, it was going to be because I was going to be there nearly every waking hour to remind her why she needed to do the work. Plain and simple, if I wasn't there, she would reject the therapy.
It was a tough 20 days in rehab. It took me many attempts over the next 7-10 days to get her back on the anti-depressant medication she had been on for years. Not only had she had a stroke, she was feeling the affects of being abruptly pulled off the antidepressants...scared, panicked, depressed, crying. The first week was basically a waste of time. After getting back on the antidepressants she was at least doing better mentally and was in good spirits considering the situation. I was still on full time motivation duty as far as rehab was concerned. The therapist had figured out that if I wasn't there, the chances of mom cooperating in her therapies was pretty much zero so the therapist and I formed a schedule. It was working, sometimes more smoothly than others but she was improving.
Her time was up as far as Medicare deemed so it was time for me to find a skilled nursing center. I had chosen Epworth. Epworth had told the Social Worker they would have a room available for mom but when the day came, no room was waiting and I was put on the spot to find another location. Speaking to one of her therapist, she recommended The Fountains and they came to get her the same day. Big mistake! She was there one night, we had to pay $300 to get her released and we moved to Parcway the next day.
Parcway was great, the facility, the staff, everything. I still needed to be the motivator although at Parcway there was no schedule so it was hit and miss, she was still refusing some therapies but not enough for Medicare to refuse to pay. She was improving slowly but surely and I saw the light at the end of the tunnel! Medicare pays 100 days of skilled nursing and our 100th day was July 25th. I had arrived in OKC on March 15th and planned on leaving with my mom in tow July 25th. All of this would be worth the time away from home because I was going to get to bring my disabled but "much improved" mom back home with me to California.
All of that changed. I noticed she was starting to withdraw. I continued to bring this to the attention of the nurses on staff, and after several days of decline one of the nurses finally decided to get a urine and stool sample along with running some blood work. After a few more days of continued decline the test results had come back. She had a UTI and had C-Diff. They started antibiotics but she still continued to decline. After speaking to her nurse, she called the Dr. to OK sending my mom to Mercy ER. Mom was admitted to Mercy, continued the antibiotic she was already on and had no improvement. They switched her to the strongest version to treat C-Diff and she started to get better, although now mom was so weak that all the progress she had made was wiped away. When we were in the ER the Dr. had told me, anytime a stroke victim gets an infection it literally erases all the new brain connections the person has developed back to the day the stroke happened. She was back to square one. She spent 7-10 days in the hospital until the new medication seemed to start working and then we had to be on our way...Medicare strikes again. Back to Parcway. We arrived at Parcway May 29th, still on isolation because of the C-Diff and a balance of 7 days remaining on her new medication. Five days into being back at Parcway, my mom is tired, bedridden, and will not cooperate with any therapies. I know the rules now...don't cooperate and Medicare says "You're out!". I fully expected this and truly understand but it still feels like being kicked in the stomach.
This brings us all to where we are today (June 3rd). I have come to the understanding that I can't do this for my mom. She has to do it for herself. I can't know for sure what she wants because she can't speak, so we work off of a lot of yes and no questions. Even with what should be a simple way of communication, basic nodding/shaking of the head yes or no, it's not that easy. My mom's gestures aren't always direct. She knows what she is thinking, if only I could read her mind... but I can't. I continue down the Medicare path, trying to give her the chance to get at least a bit better. I've decided to enlist my next option which is Home Health and from what I understand Medicare will pay for 60 days as long as mom cooperates with therapy. I'm hopeful but not living in a fantasy any longer. I really believe she has lost her will. Forget planning. I've given that up. I now work solely on a day by day basis. I know where we are heading but not where we will be from one day to another. I am here only as a loving and most grateful daughter. Only to support her, to make her as comfortable as I possibly can and to inform her of her options, hopeful she understands.