It is hard to imagine what could interfere with the matters of planning for a funeral of your mother-in-law, but sometimes life among the living gets complicated. In this case, it was regarding Ben. (Warning: This might be more information than you want to know, but I don't know if family members in the future might have to deal with something similar and I want to make sure they know some of the hard stuff.)
Backtracking in the timeline a bit to the end of August: It was decided that Ben needed to transition between the antipsychotic that he has been on for the past 3 years to another one, due to the harmful effects that medication was having on Ben. As a result of taking that medication, Ben had gained over 90 lbs., has very high cholesterol levels that didn't respond to taking three different medications at the same time, developed fatty liver disease, and was diagnosed with diabetes 2. His liver enzymes continued to worsen beyond what is expected with fatty live disease so more tests had been ordered. He has a cyst in his liver and also one on or in his kidney and a mass around his gall bladder. These things can be fairly benign issues or something more serious, so more tests have been ordered. Over the past year, efforts have been made to help him lose weight with no luck. This particular medication takes away the body's ability to feel full so you feel constantly hungry. And we discovered that some of those medications were also negatively affecting his liver. Yuck!
So after trying a few other things to relieve the liver issue, Ben's psychiatrist changed him to another medication and tapered him off the first one. Within a week, Ben started struggling with symptoms. He mostly lives with voices in his head, because he can't tolerate high doses of the medication. However, as he weaned off one and ramped up the new one, he quickly became overwhelmed by the voices, anxiety, and other related symptoms. As a result, by September 16, he decided to admit himself into the CRU so that he could get extra support as he made this transition. So he spent his 32nd birthday in the CRU except for heading to Davis Hospital for a echo on his heart (his heart is doing great--a piece of good news.)
He stayed there for 10 days and was released on September 26 even though we expressed our feelings that he was not ready to return back to his apartment.
The next day, he called me and asked if he could come and stay at our house for the day. He hadn't slept at all the night before and was experiencing a high level of confusion and distress. He came and spend the day with Jena since we were over at Mom Hall's house playing games. He was calmer that night after sleeping at our house and wanted to go back home.
He headed back home that night. On Sunday, Gary went over to bring him to our house for dinner, but Ben refused to leave his house. Gary stayed with him a while, but then headed home and told me that he had not seen Ben that sick for a very long time. A worry, but too much was happening to do anything about it that night.
Monday morning about four hours after Gary's mom had passed away, Ben called. He was very anxious and talking very fast and soft. I was very worried, but was reassured a bit when he said that he was at Journey House (a place at Davis Behavioral Health where he can go during the day and be with others). I knew that they would keep their eyes on him and send him to the CRU if needed. Gary and I had decided that we needed to tell Ben about his grandma in person and had planned to do that on Monday night.
About 5:30, I got an email from his therapist telling me that Ben had been readmitted to the CRU. Although that made me sad, it also meant that he was with people that knew him and they would help him, while we were busy with handling things at home.
Tuesday I spoke with his therapist and asked if there was a way that Gary and I could speak to Ben in person and tell him about his grandma. Because of Covid, no visitors are allowed so it meant that special permissions had to be granted. The therapist indicated that he had an appointment with Ben on Wednesday morning and he would be walking Ben from the CRU to his office and we could meet in his office and talk to him for as long as we needed. So a plan was made--10:00 on Wednesday in Jeff's office.
Wednesday: During my morning prayer, I felt a distinct impression that Ben needed a blessing today and it needed to be a blessing of the sick. Although I had prayed about Ben earlier in my prayer, I was not thinking about this or praying about him at the time I felt this. Ben has been struggling with schizophrenia for over 13 years and he has asked and gotten blessings over that time--maybe two or three. Gary believes that people should ask for a blessing, so I wondered how he would feel if I told him that Ben needed a blessing today--and not just of comfort but with the oil...when Ben had not indicated a desire for a blessing. However, as soon as I asked Gary, he immediately agreed, saying that me asking was enough.
Although we have many wonderful friends and family members, we know that Ben is cautious about who sees him when he is very sick. We decided that we would call our Bishop who is also the CEO of Davis Behavioral Health and ask who in that office would be able to assist Gary in giving a blessing. Our thought was that they would be familiar with the illness and not surprised by the situation. Even though our bishop works out of a different office, he immediately offered to come and assist Gary and said that he would get there shortly before 10:00. That was a sweet gesture and we appreciated it so much. It became even more.
I received a call from our social worker saying that our meeting had moved to a CRU office as they felt Ben wasn't stable enough to leave the CRU and that he (the therapist) was also running late. I told him about our plan to give Ben a blessing and he told us to go ahead to the CRU and they would be ready for us. He would join in about 15 minutes. Gary and I headed to the waiting room to wait for our Bishop before going to the CRU. I had forgotten my phone so went out to the car to grab it when I saw our Bishop and the director of the CRU coming across the parking lot from the CRU. As I approached him, the Bishop told me, "Ben has been throwing up and they have taken him to the ER at Davis Hospital." We grabbed Gary and sat down in a conference room and the CRU director updated us on Ben's mental health and their concern about his throwing up. We then headed to the ER which is about 2 minutes away.
I was struck by the need for Ben to have a blessing today and was so grateful to have Gary and our Bishop ready and able to make that happen for him. And with the nurse "turning her back, while our bishop who also was the CEO of DBH" came into the room, Gary gave Ben a powerful blessing--not of cure and symptom relief but of hope for great knowledge in the future and other important things. I don't know how Gary did it--two important blessings for people that he loves in the same week under difficult situations. He is my rock for sure.
Then we waited in the ER for about 8 hours while they ran some tests and we met virtually with a crisis worker. Ben was basically catatonic during this---no talking or responding, very rigid in his movements, and little reaction to anything around him. He was not eating or drinking. He hadn't been sleeping over the past few days. That was the worry with the throwing up--was there a physical cause of the catatonia or was it part of the schizophrenia?
The physical causes were ruled out and the decision was made for Ben to go back to the CRU. Gary left shortly after that decision was made to pick up Scott from the airport. I stayed with Ben and spent 45 minutes getting him from the ER to my car due to his catatonic and high anxiety state. ER staff was supportive but didn't have any idea of how to help me help Ben in this situation. We made it to the car and surprisingly he transitioned to the CRU without difficulty although it took a wheelchair to move him from the car to the unit.
I rushed home and spent an hour rushing around trying to make the house presentable (Scott, Gary and Jena had headed to Panda Express for dinner.) as Tosha and her family was arriving around 8 pm as well. Unfortunately my goal to clean the refrigerator and groom the dogs didn't happen before they arrived. I am not going to lie when Ava (age 22 months) first saw me and said, "Grandma" I almost broke down in tears. It was just what I needed--three excited grandchildren to lightened what had been a very difficult day and few weeks. So glad to have them here. We spent the evening talking and playing with grandkids and getting to read them bedtime books. I had worried that having kids would be an extra stress on me. It actually was very stress-relieving to be with them and to feel their love and excitement about being here with Gary, Jena and I. It was perfect even in the middle of everything.
We had a busy day planned for funeral prep, but Charon and Vonette had taken over our lists as well as their own lists and kept things on target. We climbed into bed (late once again) and fell asleep--hoping that we could finish everything we needed to do on Thursday.
I woke up about 4:00 am and couldn't fall back to sleep, so finally at 5:00 I got up and handwrote my thoughts for my remarks for the funeral and then sent out some texts to my nieces and nephews about their memories of Grandma Hall. About 8, I headed back to bed for some more sleep, getting up and ready around 9:30 to meet Vonette and Charon at Grandma's at 10:00 to continue the planning needed for the next day. It was going to be another busy day--but when you are mourning, busy isn't bad in spurts.
And then the phone rang and it was Ben's psychiatrist--Ben had been moved back to the ER at Davis Hospital. So Gary and I whipped around the house, saying good morning and goodbye to Scott and Tosha, Austen and the grandkids, and headed to the hospital--texting our regrets to Charon and Vonette--once again we had to choose the current battle over funeral preparation. That alone is a heartbreaking choice to make. We were so appreciative of the support of Charon and Vonette while we left them with our list as well as theirs for the funeral and the family dinner afterwards.
...and we went through Covid screening once again as we entered the ER for the second day in a row. Little did we know at that time what this was going to look like.........
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