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.