Darais Days

This morning, Lily was up early to go get doughnuts for Clarissa’s birthday. I got out of bed later after my late night. Neither Lily or I had been sleeping a lot lately and I’m always grateful that Lily is the one with energy in the morning. I was slow getting out of bed, and slow showering, but I finally made it upstairs so Clarissa could open her door and see her presents.

After we sang Happy Birthday to her in front of her presents we took her downstairs were Lily had gotten donuts, and we lit candles, sang happy birthday again and let her open presents.

After the festivities, we swung by Best Buy and Bed Bath and Beyond for some final things for Georgia and then took her to her new home.

There was a complication when Legacy Village told us they couldn’t let Georgia in because Georgia’s doctor’s office had not yet sent her prescription orders and information so they could properly manage her medication. Sarah, who has been so great, suggested to Lily that tomorrow would maybe work better to move in. Lily was very firm with her that it had to be today, and I’m so glad Lily stood her ground. I was planning to return to work tomorrow, everything was moved over and ready, and Georgia was in the car ready to be in her new home. We waited about one hour in the car and finally everything got sorted with her Dr.’s office. Then there was a new wrinkle which was that one of her prescriptions was not from her doctor’s office, but rather from her neurologist. Then we had to track that down. Meanwhile, Georgia was having a mild episode in the car. All in all we waited an hour and a half or so and then Sarah finally confirmed we were good to come in. Thank goodness! I think that might have been a mistake because two or three hours later the neurologists office called me to tell me they just sent the paperwork. I said, “are you sure you just now sent it and that you didn’t send it earlier?” I asked this because we had been inside a couple hours at that point and supposedly that was the paperwork our entrance was waiting on. Maybe God just threw us a bone because Georgia was needing better accommodations then sitting in the car waiting for her room.

Once Georgia was in her room, I stayed her for a long time. After some rest, she started to feel better and she helped direct me in the unpacking. We got everything set up, and I also talked with the med-tech. I was there four hours or so, and Georgia and I were both in very good spirits. Unpacking together was fun. We both liked her room a lot, and thought the space was not as small as we feared. The place looked quite cute the way we were doing it up, and we talked hopefully about the peace, and order she will experience in her new home. Georgia thought it could feel more like a temple to her. I had a really good and happy time unpacking with Georgia. I felt affirmed that we made the right decision. At multiple junctures she would get tired, or need care, and the care center staff were right there to help her. They were all very sweet and capable. Georgia also did a great job eating her lunch, and eating has been a challenge for Georgia. It all felt hopeful, and I loved spending the time with Georgia who I love so much. I also set up her Amazon Echo Show. I felt very energetic and happy while helping her and was grateful for the energy given the past couple days I did not feel as well and I didn’t sleep much last night. She also seemed hopeful and in good spirits.

I then left and got a couple more Echo Shows for us at Best buy so it is easy to video call Georgia whenever we want. While driving from Georgia’s to Best Buy, I pondered something that Georgia told me previously. She said that a week or two before he big episode with the ambulance, the Spirit told her, “trust me.” I pondered how Georgia has been declining for months. It has gotten harder and harder for her to live in our home with all of its noise and bustling, and how it has also gotten harder and harder for Lily as her mom has needed more attention. I pondered how Georgia seems to be doing so well, and in the perfect place for her needs, and not there is pressure relieved at home. I pondered how it seems to be the right thing for everyone, but without a major dramatic episode involving a hospital, we, the family, would never have taken the time to pull the alarm, rally together, deeply process her situation and find the right solution. I would have never taken 7 days off of work, and we’d all be trying to make it work at home. I considered the possibility that Georgia’s major episodes were divine interventions to get us to do the right things for everyone. I recently listened to a talk by D. Todd Christopherson, and he makes the observation that sometimes adversity comes to us to help us make an important course change. I have felt God’s hand in this, and I know Georgia has too. Also, on the way home I brought a big Cold Stone Icecream Cake, and we did one last celebration for our sweet Clarissa turning 3.

Then at night Lily went over to be with her mom, do the finishing touches on unpacking, and help Georgia decide what artwork to hang and where. It was so neat that both Lily and I could spend quality time with her to help get her situated and comfortable in her new environment before the Caronavirus rules kicked in.

We love you Georgia and Clarissa!

It is a good thing we decided yesterday that the care center was the way to go, because today was moving day. Lily, Georgia and I were active last night packing up Georgia’s room. Lily especially had a lot of energy and was instrumental in getting everything ready. Amazingly, Georgia had the energy she need to get it all done too.

Today the movers showed up in the morning and had everything delivered to Georgia’s room by around noon. They also took a bunch of our junk (set aside from the garage re-org) to the dump which was amazing.

Aside from overseeing the move, Lily and I were involved in buying Georgia’s new TV and a TV mount for it. Fortunately Legacy Village said their maintenance person would install it! I was also in and out of Georgia’s room a lot moving things in. We bought her towels and a cabinet for her bathroom and other things that I took in. I hung her picture of the temple and her mirror and helped get the room set up somewhat.

Lily and I were both so tired and in that condition it can be very difficult to manage children. As a great idea for an activity, Lily got together a bunch of expired ingredients and let the kids “cook” with them. All four kids were having a blast. Ammon was going nuts making bubbles with the vinegar and baking soda. Clarissa made a wonderful peppercorn, sprinkles and rice concoction and Lydia and Mary had fun too. It started to go rogue when kids started going inside for new ingredients. Fortunately I intercepted Ammon on his way out the door with a brand new little bottle of Spanish Saffron.

This is probably an appropriate place to mention that Lydia might become a scientist. I say that because recently she has been very into making slime. She finds recipes online for different ways to make slime. Contact solution is a common ingredient. Add shaving cream for fluffy slime. She found one slime from just shampoo that is microwaved and then cooled. She adds color to the slime and experiments and gets different textures etc. One slime could stretch across the entire room. She filled up 10 or so Tupperware containers with different kinds of slime. It’s very cute to me.

Tomorrow is Clarissa’s birthday. Lily and I were so busy and tired during the day that we were thrilled when Lydia and Mary offered to wrap her presents for tomorrow which you will see all set up for Clarissa in a picture below.

I should mention that Lydia has been very excited about Clarissa’s birthday. When Lydia gets super excited about something the anticipation actually starts to drive her and everyone else a little bit crazy. Two or three nights this week (including tonight) she wasn’t able to sleep right away and then she started completely stressing out that she would be too tired to be in a good mood and enjoy Clarissa’s birthday. That worry feeds her anxiety and gets her more and more riled up. Multiple times there was sobbing around midnight from this sweet stressed out girl agonizing over how lack of sleep would ruin her ability to enjoy Clarissa’s birthday. Lily and I were eventually able to help her fall asleep each night. One night Lily slept in her bed with her (and tweaked her back). It really is a sweet anxiety, poor girl. She really has been so excited about her sister’s birthday. She even picked out presents for her, and as I said, helped wrap her presents.

I got balloons in the evening as I was wrapping up errands related to Georgia’s move and set everything up for Clarissa when I got home. Tomorrow will be a big day: Georgia’s move, and Clarissa’s birthday. I wanted the house to be in good shape when all the moving activity settled so I was up late cleaning. It kindof worked out because Lydia was up late again stressed out that she couldn’t fall asleep to be fresh for Clarissa’s birthday. Lily went to bed before me. All of the events recently have been a ton for her to process, and they have put a lot of physical, mental and emotional work on her. She has been a true star getting everything done that needs to be done and has taken the brunt of everything from the family standpoint (obviously Georgia has taken the biggest brunt as she is the one going through the episodes and medical issues). Lydia wanted to sleep with Clarissa tonight so she could be with her when she woke up and saw her balloons. That didn’t go so well as both Clarissa and Lydia were up until around midnight. Lydia had to be helped and calmed down because again she was stressed about getting to bed so late. I think Clarissa was just so excited to have Lydia in her room that sleep didn’t really seem to be an option.

Today Georgia had a major episode. To protect her privacy, I will not go into extensive detail, but I will say many of us, including Georgia, thought she might be dying. It was an intense drawn out 4 or so hours, with a lot of tears and a lot of phone time with family members. We didn’t take her to the hospital because she didn’t want to go there. She was just there, and there wasn’t anything the felt they could do for her.

After the episode, Georgia was still weak and exhausted, but started to come back to normal function. The episode started when Mary said, “boo” to Georgia playing her regular startle game that they always play. Mary was heartbroken when I explained that her game started an episode and she couldn’t play it anymore. I worried a lot that telling her that news might have been hard on her.

As a family, we continued conversations. Enduring an entire major episode with her made us all realizing how emotionally draining, traumatic, and dramatic of a roller coaster Parkinson’s truly is. Lily confessed that she didn’t know if she could emotionally hold together if this roller coaster was happening in her home regularly, even if Georgia did have 24/7 care. We continued to talk as a family and all determined that the care center route was the way to go. Legacy seemed like a great place, and Georgia needed to have constant access to help. Additionally, she needed a place that was quiet, and a haven. A place with no peace or chaos. There was no short term way to solve that in our home, and even long-term, the minute she stepped out of her rooms, even just to get a snack or eat dinner with the family, she would be in the hurricane of our bustling family life. At a care center, she could leave her room to have calm interactions with other seniors, make friends and eat with others in a calm orderly way and attend well organized events with other adults. It just seemed like the order and tranquility she needed to heal. Georgia had told me days ago she wanted to rule out home-care, because she didn’t want someone with her 24/7 just waiting for her to get sick. But it took the rest of us some time to come around to agreeing that it was the right thing for her. I thought a care center would be best early on, but then swung in the other direction, and then back to thinking care center was best. Lily swung back an forth too. It was a hard decision, but Lily’s family is so amazing. Discussion was always loving, supportive and constructive, and I really feel we all arrived at the right choice.

I’m grateful for Clark’s clear thinking and input, Swathi’s medical expertise and matter-of-fact insights, Lily’s courage, honesty and great research finding the best care-center nearby, and Georgia’s love, grace and pragmatism. It’s a gift to go through hard things with such wonderful family.

I need to also mention that when we thought it was truly serious with Georgia, we had some angels come to our aid. Our home-teachers, the Giles, babysat our children for an hour and a half so Lily and I could be at Georgia’s side when things were at there worst. Then my dad and Suzanne came to the scene when we asked even though they had made no prior plans to be here. They relieved the Giles and watched the kids into the evening so that Lily and I could finish tending to Georgia, and then have a long conversation with Clark talking through what to do. Without the Giles, and without my parents, Lily and I could not have cared for Georgia the way we did, and we could not have had the time to process and make conclusions with Clark that helped us all feel aligned and at peace about our direction by the end of the day. Again, I am so so grateful to be surrounded by such loving supportive people as we go through this period of life.

I will also mention my boss and my team. I’ve been taking time off of work to help with everything and my boss told me to take as much time as I need and she is stepping in for me when needed. I haven’t been checking email or worrying about work at all. It’s been a gift to be fully focused on Georgia and also Lily who has been instrumental in supporting and helping her mom, was feeling the wear of everything and was needing reinforcement.

I am so so grateful for all the good people that have helped during this time. Even our Bishop has checked in. He has counseled people for 7-8 years and he spoke very positively of the care-center route and said he usually sees that route go well. He said relationships often do better in that scenario because being a care-taker can strain or alter a relationship in some cases.

Today was a big day. Lily and I were getting tired from everything, and especially Lily who had been helping her mom during the night. Georgia has been up and down, but to this point there was no major episode like what sent her to the hospital.

Lily spent a ton of time today with her mom working on paperwork for her admittance into Legacy Village. She also took her mom to get the Carona Virus test. The whole process was a complete joke. The “Test Utah” organization will only test people under super specific circumstances and “An Elderly woman with intensive medical needs cannot move into her care center without this test” apparently isn’t enough. So Lily had to lie and say she had certain Covid symptoms (but not other because then they would send Georgia to the hospital and not test her there). Fortunately Lily was coached up by the lady at Test Utah about what to input in their system so Georgia could get tested. Lily half-jokingly said thank goodness she was the one doing that and not me because I would have a panic attack. I say half jokingly, because she’s quite right. I get very stressed bending the truth even a little, even if it is the obviously right thing to do.

In the afternoon, I bought new bike shoes for my road bike, and I also bought a new shower chair and a beautiful new recliner for Georgia. The recliner is made for elderly people with medical needs and it has a remote to control it. I felt happy hoping Georgia would like it. On the way home, I got pizza and ice cream for the family. Through all of the this, Lily and I have neglected the kids quite a bit, but at least they are eating happily :). Also, I did manage to play GoFish with them earlier in the day. They were were excited about it because Suzanne had recently taught them how to play.

In the evening, the kids made a huge mountain out of pillows and blankets and played with stuffed animals on their “mountain”. I love those kids! They have been so sweet, self-sufficient and fun during this difficult time.

Today, we had had lots and lots of processing and dialogue between Georgia, Lily, me, Clark and Swathi. We talked a lot about what to do for Georgia. We discussed care center options, home-care options, building out the new room for Georgia etc etc. Georgia seemed to prefer the idea of a care center because of the peace, order, care and simplicity of that solution, but Lily, Clark and I had a lot of conversation as we explored our own feelings on what was best. At the end of the night, Lily felt very strongly that we should keep Georgia here, close to family and home. Clark definitely preferred the idea of her being at home. I was back and forth. All of us wanted Georgia to make her own decision at the end of the day. One complication with the care at home strategy is that the noise is such a problem for her and she would need to endure a construction project at home for her new room to be built out.

We are leaning towards the care center route and so with limited time, we are acting swiftly to get everything set up for that. Lily spent a lot of time ordering a new bed for her mom. She also got us a new mattress in the process! We had to toss our old King Mattress because it got so dusty sitting in the basement during the construction so we’ve been using a queen mattress on a king size box spring. Since I’m always smooshed up against Lily cuddling on her side anyway, it wasn’t a problem. But it is going to be nice to have a King again!

Lily made amazing corn chowder in the afternoon and here are some pictures from around the house.

I’m writing this a week later and don’t remember exactly what happened today. It’s all a bit of a blurr, but most likely it involved lots of planning and coordinating for the move (Lily lined up movers), making decisions, more family discussion and processing, taking care or Georgia during her episodes during the day and at night time and managing children in the process. There has been a ton to coordinate with the Legacy Village such as Georgia’s Carona Virus test which Lily scheduled for tomorrow. Lily has taken on the responsibility of all the coordination for the move-in, the paperwork, the coordinating move-in date, furniture etc.

Lily and I were also were in near constant discussion it seemed between each other and with others in the family trying to process and decide if a call center was really the right move.

On Wednesday my dad and Suzanne took turns watching our children so that Lily and I could both be present to do a more thorough evaluation of care centers.

We first took a longer visit at Legacy Village. We liked everything we saw. Georgia said nothing left her disappointed. Just to make sure we were evaluating multiple options we also went and looked at Jamestown.

Jamestown was also amazing. The candy bomber lives there. They have adorable baby ducks. They have tons of huge activities and their nurse is Amy Hansen, who we all know and love from our last ward. Lexi, her amazing daughter who babysat for us also works there.

But right after visiting Jamestown, Georgia wanted to go back to Legacy one more time. She really liked that one. It was clean, calm and new. Everything seemed nice and well-run. Jamestown was also nice, but it was an older building, a much larger operation and a bit more chaotic seeming.

We cancelled our third care center visit because we all felt sure that Legacy Village was the right place if we decided to do the care center route. Georgia was such a trooper! Her episodes are daily and she struggles with exhaustion and walking at times, but she was able to be present and effective for all three visits.

We were so grateful for dad and Suzanne to enable our visits. Of course, the kids adore them and have so much fun with them. Suzanne took some adorable pictures of the kids lined up at the leg rest and we got some more fun photos too.

It was a huge day for all of us. In the early-evening, we all went swimming because Lily had rented time in the pool of the kid’s swim instructor. I felt overwhelmed by everything going on and suggested we cancel. Lily wanted to keep the appointment and I was fine with that. It turned out to be exactly what we all needed. We felt so refreshed after the swim. We had so much fun and we felt re-energized for the road ahead. Georgia was in great hands with Suzanne while we swam.

Also, I took these picture of some amazing Lily’s we got at Trader Joe’s. They are gigantic and added so much beauty to our home during this difficult time.

Georgia came home today! We all loaded in the car around noon to pick her up. While in the car, Lydia had fun taking pictures of people and doing stop-motion videos of her and Mary playing and eating.

I had fun picking up Georgia and seeing her again. After picking her up, we went and looked a care center that Lily found that was rated 100% from “A place for mom” rating company. We weren’t sure if we were going to go the home-care route or care center route yet, but Georgia was leaning towards care center, and we knew we had to do something fast. I’ve been taking work off to help with everything, especially now that Georgia needs a lot of care, and that situation couldn’t last forever. So we promptly started exploring all possibilities.

We were very impressed with Legacy Village. It was new, clean, beautiful, and the marketing person was very kind and not pushy. Here is a picture of Lily walking in with her mom.

It was an intense day for everyone as we all processed and discussed the best options. We love Georgia so much. She has been such a source of love and light in our home, and it has been difficult to consider changes to the way things have been. The reason I cried Sunday when she was being taken in an ambulance was because I had a feeling things would be dramatically changing and that she might need to leave us.

Also, Mary spent a lot of time playing at her new friend Haven’s house.

Every now and then something happens that affirms the idea that there is a caring God out there. Today was one of those days. Georgia was still in the hospital today, and there person who was likely taking it the hardest was Mary. Mary is Georgia’s little soul mate. Mary even has a desk in Georgia’s room where she colors and colors and colors. I think she has three or four shelves in Georgia’s room now with all the art she has done in her room. They spend a lot of time together and have a very special relationship. I’m writing this blog two weeks later so I know a lot of future developments that had the potential to be very hard on Mary.

And so it felt particularly special when a seven year old girl named Haven discovered Mary at our house while she was on a walk. Haven is a delightful girl, as is her mom Chanda and their dog Twinkle. Mary and Haven instantly became best friends. Mary made a sweet note for Haven about them being friends. Mary is so happy to have a new friends, and we feel incredibly grateful she has this new friend to be a bright spot in her life during this moment when Georgia, her special friend, is not doing well.

Georgia is still in the hospital and our thoughts and prayers are with her. She does not like the hospital at all and no one really knows what happened yesterday that caused such a bad episode or what the episode even was. Georgia, we love you and we hope you come home soon!!

Also, we are planning on building out a new room for Georgia that will be sound proof and away from the house noises so she can have more peace. Noise is very hard on her and triggers and exacerbates her episodes. I spent the majority of the evening clearing out the wing of the garage that will be converted to Georgia’s new wing. Lily helped and I always enjoy doing home projects with her!

Today was a very difficult day for the entire family, and most especially Georgia. She had a very active and happy day yesterday, and we learned today that she over-did it yesterday. Around 10:30 AM she had a massive medical episode, that resulted in an ambulance taking her to the hospital and keeping her for the night. We love her so much, and Lily and I both cried as we saw her in such a broken state and considered what road ahead would be like. We spent a lot of time talking through options, talking to Clark and Swathi, and making conclusions about how to best help her going forward. The moment I cried was when I thought she might have to go to a care center because of how many needs she now has. I cried because it just wouldn’t be the same here without her, and I love her spirit and I love having her around. Lily was sobbing because she thought Georgia was going to die. When the smoke cleared, we learned that Georgia will be OK, and that there are good options we can use for in-home care. We are excited to have her back in the swing of things and dearly hope she’s doing OK in the hospital and knows we love her. Due to Coronavirus, we were not able to visit her in the ER, where she spent most of the day, but we did call her. We love you Georgia!

On Friday, Lily made the most delicious eggplant Parmesan. Ammon, Clarissa and Mary all helped her make it. Ammon is so cute in his helmet! The way he jumps, falls, and gets banged up from being so athletic and energetic, it’s probably not a bad idea for him :).