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Janet & Willy’s Story
Site created on September 2, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
I (Jewel) am going to go back & forth between my mom & dad since things have been crazy for both of them this summer...
Mom... In late June, Mom drove alone to her niece's (Joanna, Mick's daughter) wedding in Georgia. She drove back to Houston to help with Dove's kids while she was volunteering at a foster kids camp. She returned to Jewel's home in Dallas where she had been staying for about 1.5 months before the trip.
Dad... At the same time, my Dad was having a very clear Bipolar episode that started in Arkansas where he was working. He went to the hospital in El Dorado to be treated for edema in his legs. One day he decided he needed to be in Dallas, and he didn't want to wait until we picked him up so he drove his motorcycle in the middle of the night to my house. The next day we took him to the ER at Baylor. Two days later he decided he didn't like their treatment and got on a bus to Parkland. They treated him there, and his mania got worse. He got pretty agressive threatening to leave again, so they court ordered him to stay in his room. He was there for 2-3 weeks.
Mom... One day, my mom went to visit him and ended up driving around lost for 10 hours. We called and called and couldn't reach her. She had never made it to the hospital. We called the police, and just as they were about to submit the report, she drove up. She had gotten lost and forgot to use her GPS or her phone. She said she just didn't think of it. We notice other clues of a Bipolar episode - we found cigarettes, she was waking up in the middle the night and not remembering, staying up too late and waking too early. She also left the stove on a few times, and we were worried about her being there without us. We tried to encourage sleep and hope the episode would subside.
Dad... Eventually after 2-3 weeks, a bed opened up at the VA, and Parkland transferred him there. He checked himself out 2 days later and got to my house. In the middle of the night, he took my mom and they drove around for many many hours, and we couldn't reach either of them. Barney (living with us as well) was able to call the VA to learn they had just made it there late at night. The police escorted my mom to my house. And my dad (we learned later) was in critical condition with stage 3 kidney failure, liver failure, blood clots near his brain, and the usual weak heart. They said that there wasn't enough blood getting to his brain which caused delirium.
Mom... Mom's episode did not subside, so we took her to Green Oaks (a psychiatric hospital). There they started her on Resperidone (anti-psychotic) and Aricept (for memory). They noted cognitive decline and told us we should get a neurological assessment but were not helpful in getting that done. I'm not certain why they started the anti-psychotic as she's never needed one, and we never spoke to a doctor to learn why. They discharged her after 1-2 weeks (the days are a little blurry). I picked her up and took her to a neurologist to see if she was experiencing dimentia. She passed his initial test and he ordered blood work and an MRI to start narrowing down other possible reasons for memory loss. Her memory worsened, and she started losing days and a correct sense of logic. Like for example on a Saturday, she thought it was Sunday, and despite all of our proof, she was sure it was Sunday. She started to get less agreeable and would try to drive to church on that Saturday because she thought it was Sunday. She almost burned some blinds down with a candle. And she was cooking when we asked her not to. It got pretty out of our control, so we took her to another hospital called Sundance, assuming that Green Oaks wouldn't take her back since they already deemed her stable.
Dad... We saw him with delirium, and it was pretty scary. The VA got him stable eventually with liver, kidney and heart back to functioning as well as they can be. After that, they were able to start him on Abilify for his Bipolar, and slowly his mental status improved.
Both... By now, the siblings and I were looking into nursing homes for my parents since it was likely that Mom had dementia and Dad needed rehab at least. And we couldn't take care of them. Lack of Medicaid was an issue to navigate. We found a place that accepted my dad right around the time that the VA was ready to release him. About 30 days ago, he went to Rockwall Nursing Care Center. Emotionally and personality wise he seems to be back to normal, but he has extreme memory loss. They don't seem to be concerned at the nursing home, so I've taken him to see a neurologist who tested him and ordered blood tests, EEG and MRI. He doesn't remember that he's been in the home longer than a day, and he doesn't remember anything that's happened recently including what happened to his leg.
Mom... She seemed to decline at Sundance. Whenever we (Glory, Barney & I) visited (Wed, Fri, Sunday) she was more and more frail, and she continued to lose days. One visit, she had to have help getting up. Two Thursdays ago, she couldn't move her legs at all. They transported her to the ER, they ran a bunch of tests, didn't find anything and they sent her back. She was moving less and less after that and had to move around in a chair (like a recliner on wheels). The psychiatrist diagnosed her with dementia and psychosis related dementia and suspected she had Lewy Body Dementia. He said the Resperidone was dangerous with patients with Lewy Body Dementia. I thought he would stop it but he only reduced the dosage.
We found 3 possible longer term nursing homes, so we asked Sundance and Rockwall to fax over clinicals for their review. One of them called Cottonwood Creek denied my dad and were still considering my mom. Suddenly on Wednesday afternoon the 22nd, Sundance called to tell me my mom was about to be transported to Cottonwood Creek. We didn't know she had gotten accepted there or that she had discharge orders. Later we found out that she actually never got accepted and they were surprised to see her when she arrived. We visited her that evening, and Barney and Glory visited her that Sunday the 26th. She was still immobile but seemed to be happy to have left Sundance.
Later Sunday evening Dove got a call from the nursing home saying they thought she was having a stroke and they were sending her to the ER at Medical City Plano. She had a pulmonary embolism (PE), and they didn't see signs of a stroke in CT scans. They intubated her, put her on a ventilator, started her on heparin (blood thinner) and sedated her overnight. They monitored her blood oxygen vs carbon dioxide levels and by the morning, they were normal. The next morning, they took her off sedation and the ventilator, and she was able to breathe on her own. But she was unable to speak or swallow. They monitored her closely in the CCU over the next several days, thinking she may improve. They eventually swapped the heparin for aricept (able to take long term in pill form) and also put a feeding tube through her nose. As days went by there were less things she was hooked up to. The doctors explained it wasn't really normal for someone suffering from a PE to lose speech and swallowing abilities, so that remained a mystery, along with why she ever lost movement in her legs.
After research on Lewy Body Dementia and Respiridone, we suspected that the drug could be one of the culprits. This was confirmed when cousin Michelle informed us that Aunt Donna experienced something similar while being treated with Bipolar and given another anti-psychotic. We were pretty vocal about that and thankfully they listened and never restarted her on that.
Mentally Mom is doing really well. She understands everything and emotionally is much more present than she has been since this episode began. In the CCU a nurse in training found a communication board that has yes or no buttons, images for feelings, things she needs and a keyboard with which she can spell things out. Her left hand/fingers is pretty strong, so the board is really helpful. Interestingly, the memory issues and as the speech therapist call it time/place orientation problems - are no longer existent.
She's had visits from me, Dove, Glory, Barney, my Dad (we have been able to pick him up from the nursing home), Marcus (my husband), my kids, my mother-in-law, one of our employees, and multiple members of her community group from church. One of them Jamie has been there for several hours on multiple days when we couldn't be there. She can FaceTime, Skype and calls on speaker phone and has received calls from several friends/family. If you send her a message, she loves when we read it to her. We watch shows on Netflix and Amazon to keep her awake during the day, and worship music and sermons, reading books to her and praying with her calms her and sometimes lets her rest when nothing else will. She is often frustrated, angry, sad, afraid and tired (per communication board), but she knows she is in God's hands and that he's working through this season.
I am sorry for the lack of posts. I'm not surprised to report that soon after Mom & Dad were together that we faced the beginning of busy season with our business. I am not surprised because it seems like God's timing to me. He gave me just enough time to care for her until I was no longer needed.
Most likely, I will only get busier & busier from here.
Dove is continuing to visit as often as possible, and she is handling all the finance/business affairs of Mom & Dad - mostly pertaining to their application for Medicaid at the moment.
And Barney & Glory are continuing to visit when they are able.
The big HUGE news is that Mom is talking now!
It was so delightful to hear her voice for the first time in so long. She is working so hard with the speech therapist and my dad. She's got exercises multiple times a day, and she even ate some ice cream the other day.
Today Ellie and I visited and she talked a lot. We held up a book (Power of Praying for your Adult Children) and she read a paragraph out loud while holding the book up on her own.
Watch the video to see & hear her!
My dad is doing a great job caring for her, but his memory is still pretty bad. He has to be reminded of a lot of things, but he remembers daily that his main job is to care for Mom.
We would love your prayers for continued restoration for both of them!