Life has changed immensely since my last update! I am now married to an amazing man and living in Charleston, South Carolina. We have been fortunate to not have any major damage from the last two hurricanes that came through the East coast. We were ordered to evacuate for Hurricane Florence but had work canceled for Hurricane Michael. The damage that was done from those hurricane’s is astronomical and incredibly sad. It is definitely a new experience for this west-coast girl.
One of the hardest things about moving to the East coast was not being close enough to help take care of Marcus. Even though I was living in Portland and him in Sumner/Carbonado for the past few years, I was able to drive up on the weekends to give my parent’s a break. During this chapter of life (because this is a chapter that will soon be over, with the next coming), I am unable to just drive home. It was hard for me to understand why God would pull me away from that. I know it was hard for mom as well. However, I know that God wants me in Charleston right now. I am incredibly content and loving the journey I am on with Jamaal, but my miss friends and family SO much.
Before I made the transition to the east coast, I knew that I would find a way to still help with Marcus’ care giving. I didn’t know how or what it would look like but I had been praying about it ever since I knew I’d be moving. Through relatives sharing our story, I was given the contact information for someone who was working on a project for families with loved ones who had Dementia. I reached out to him and quickly learned that I wanted to be a part of what they were doing and could see how our family could benefit from the project they were proposing.
Essentially, the project involves “Eva”, a voice-activated software that helps people living with Alzheimer's and Dementia and provides relief to families and caregivers. We are one of the first (if not the very first) families to implement the program and are getting 1-on-1 service to personalize the program for Marcus. On a fundamental level, Eva picks up when Marcus says certain words and responds with content that I have loaded. For example, when Marcus starts to get irritated and says something that triggers a “melt down”, Eva would pick up on this and start playing his favorite song, movie clip or show a picture in order to divert him. The software is programmed into a tablet and mounted on the wall. I have worked with one of the designers since July and we’ve made some great adjustments in order to make it as resourceful and personal as possible. It truly is amazing and will help families in the care giving process. If you would like information, please let me know (marcimcgillivray@gmail.com) or check out the website at http://forsenthealth.ai.
Marcus’ care giving plan hasn’t changed much - Grandma Marion (and our Aunts and Uncles) help take care of him for a few days during the week while Mom works. He has good days and bad days. His “melt downs” are intense - lots of cuss words, name calling, crying and screaming. If he was instigated physically, he would engage. Thankfully, we know NOT to do this and so far, he hasn’t been physical. He is so confused. A simple gesture from someone can cause a major meltdown because “he just doesn’t get it”. We are constantly reminding ourselves that he does not have the capability to think “normally.” Yesterday’s meltdown is a perfect example:
Being 3-hours ahead of the west coast, I am often calling Mom around their dinner time. When I called yesterday, I knew something had happened. As soon as Mom answered the phone, she gave me “the look”. I asked how it was going and Marcus says in the background (very loudly) “I’m gonna kill someone, Marce”. Oh great. I know now he is having a melt down. As most of you know, my mother is not one to back down to intimidation from Marcus. She had a few words for him and he for her. I waited until there was a break in the conversation and asked to talk to “my bubba”. Oftentimes, I can get him to calm down enough to talk. As soon as Mom put the phone on him (we were on FaceTime), I saw that he had been crying. Many times when he gets upset, he doesn’t cry. He’s just VERY mad. This time, he was crying. He couldn’t translate why he was upset. He really couldn’t remember but he knew he was upset about something. Mom was able to tell me what happened:
Per the usual, when Mom picks him up from Grandma’s, she gets him the shower. He doesn’t shower unless he’s prompted to do so and even then, he can’t remember what to do when he is in the shower, so he requires help. One of the BIGGEST obstacles when getting him in the shower is getting his dirty clothes and washing them. He HATES changing his clothes. Very rarely, he is OK with the clothes being washed. 9 times out of 10, he throws a fit in the shower until we show him he has another set of the exact same clothes. He didn’t want his dirty clothes washed yesterday and this started the meltdown. After he got out of the shower and put his new clothes on, he was ready to go. As they were leaving Grandma’s, a friend of hers came to visit and pulled her car up next to Mom’s. Since there was a car in front of mom and to the side of her, she would have to put the car in reverse in order to leave. No big deal. Well, Marcus wasn’t having it. He aggressively motioned to Grandma’s friend for her to move her car. Mom told her the car was fine and that they were on their way out. She knew a bigger meltdown was coming. Mom starts to back the vehicle up and Marcus lost it. Swearing, screaming, utter confusion. He couldn’t understand why the car was parked there. Thankfully, no one saw this except Mom. As they were driving away, the swear words and name calling continued. He was so confused. At that point, Mom was done. She had had enough. She engaged in a yelling match with him, which Marcus took on the challenge. After a few minutes, Mom put on the silent treatment. Most of the time, no words are the best way to let Marcus digress and start to calm down. No matter how many times Mom tried to explain the simplicity of the situation, he just couldn’t understand.
After she told me what happened, I reminded Marcus that he is loved, safe, and that everything was OK. The more research I do on Dementia, the more I realize that outbursts are often a result of feeling unsafe, insecure, and incredibly confused. He was holding back tears as I was talking to him but eventually got to a point where we could carry on a conversation.
The poor kid is so confused. It’s very sad to see and very frustrating to deal with. What we see as very simple situations, his brain cannot comprehend. What is very simple problem-solving skills for us, is a major issue for him. When he can’t problem solve, he gets confused. When he gets confused, he gets anxious. When he gets anxious, he gets scared and communicates his fear with anger and emotional distress. He does not have the ability to function on an every-day level like we do and all the emotions are felt by him and his caregivers.
At this point, trying to find ways to help the care giving process is one of my major feats and participating with the “Eva” project is one step closer. I say this every time and I will continue to say it. Caring for Marcus is very hard. He is unpredictable. He is confused. He is not able to understand simple, everyday situations. It.Is.Hard. BUT, God continues to give his caregivers strength. Life truly is a journey and we know God has a purpose for the life he has given Marcus. As hard as it is to accept, there is no other choice. We will continue to pursue the purpose for this pain.
