Answered Prayer - A Christmas "Thank You"

A Christmas "Thank You" to Marcus' Grandma, Caregiver and our Answered Prayer

Below is my mom's (Jan) Christmas Letter to all our friends and family

Dec. 16, 2016

I apologize that I am not able to send out our annual Christmas "up-to-date letter" on Marcus. Although I love this time of year, I found it to be difficult to write a letter this year. Marci has been keeping you all semi up-to-date on our doctors’ appointments and such.  She also sends out the "funny" videos.  We also try to record some of the tough and exhausting outbursts to send to his doctors, but aren't quite ready to send them all to you, as his language is not exactly rated G.  

First and foremost, I want you all to know that we SO appreciate all the great comments and responses to Marci's updates.  It really does encourage us.  Some days are great, some days are good, and some are just plain bad. 

Words cannot begin to explain how amazing of an answer to our prayers that my mom, Marion, has been.  In spite of, this year, her losing 3 siblings and her husband of 53 1/2 years, she is the best caregiver we could have ever asked for.  Besides that fact that she truly loves Marcus, she does a great job in "negotiating" when he seems to be nonnegotiable.  Once again, I say that Gary and I aren't good at the negotiating, defusing, etc.  Grandma has the touch.  She says that Marcus gives her purpose, and I am glad for this, because I still, at times, wonder why I question God's plan. 

Mom and Marcus have an evening ritual of playing Phase Ten (card game), Karroms, learning the state capitals, and their own version of a spelling bee.  I love that she takes time to do that.  When he is at home with us, he always asks me why I can't be "nice" like grandma.  I try to explain to him that I need to stay a little mean so that he will want to go to grandmas.

So, I just want to personally say, "I love you mom, for loving Marcus so much, even though there are times when his actions are so hard to love. You truly are an answer to prayer.”

I hope you all have a very Merry Christmas and Happy New Year!

Love, The McGillivray’s 

Dear Brother: Happy 29th Birthday!

Marcus turned 29 on October 22nd. He didn't realize it was his birthday, but we made sure to remind him throughout the day. I oftentimes will write down thoughts that I wish Marcus could understand. Instead of telling him, I write him letters. I imagine Marcus reading these letters when his mind is healed. This may not be in our lifetime. He may read them in Heaven. Either way, I want him to know how loved he is.

October 22, 2016

Dear Brother,

Today we celebrated your birthday. You turned 29 years old. You woke up this morning not knowing it was your birthday. I was excited to tell you. When I asked you what day it was, you said “October 21st because that is what my watch says”. I reminded you that your watch was one day behind and that it was, in fact, October 22^nd, which meant it was your birthday. When you hear “October 22^nd”, your immediate response is “October 22^nd, 1987”. Actually, it was October 22^nd, 2016, which meant you were 29 years old.

At 29 years old, you are struggling. You have Dementia. You’ve had it for quite some time now. It’s getting harder and harder for you to remember things. You are always confused on what day or time it is. You wake up and want your morning coffee. I got you a coffee cup with our picture on it for your birthday because I know how much you love your morning coffee. After you drink your morning coffee, you usually want to read your Sports Illustrated magazine. Mom has to help you shower first, though. We can’t be having a stinky, 29-year-old. You usually adhere to this, but not without some bribing that you need to change your clothes after you shower. We can’t stay in our Pajama’s all day, brother.

At 29 years old, you have major anger outbursts. You get very confused on things and oftentimes, it translates to anger. You yell, swear, call us mean names and cry. Sometimes you cry really hard, and mom or dad has to hug you so you calm down. After it’s all over, though, you forget about it. Sometimes you are sorry, although you don’t know why. It’s hard to watch you when you have these moments. It’s very hard.

At 29 years old, I know how much you love me, your sister. You love to talk to me on the phone. You love to Face-time with me; although, I mostly think you like to see your face on the phone as opposed to mine. You always want to go places with me, in the “Mazda”. You like to sit next to me. Like RIGHT next to me. Sometimes you’ll want to hold my hand and be my boyfriend. I have to remind you that I’m your sister and that you’d rather have it that way. If you were my boyfriend, I could get rid of you. If I’m your sister, I can’t get rid of you. I’m stuck with you forever.

I wish you didn’t have dementia, but you do. Life is hard for you but we try to make it as easy as possible. You get to hang out with Grandma Marion a lot. She loves you and loves taking care of you. She spoils you, actually. She makes you really good meals and lets you read out loud. You LOVE to read out loud. 

There’s much more I want to tell you, Brother, but it’s hard for you to understand so I try to keep it simple. You are loved by many. You are safe with your family. You can trust that your family is doing everything we can to take care of you. Your story is being written by God. You are, and always will be, my favorite little bubba. Happy 29^th Birthday.

Love, Sister.     

Marcus goes in for an MRI on Nov. 16th at the University of Washington. This MRI is looking specifically for Dementia-related progress. In Marcus' case, we should be able to see how much he has digressed or how much his brain has changed from original tests that were performed. He will also be going in for Genetic testing at the beginning of the year. I will be sure to update everyone when these results are found! 

  

Answers to Our Questions - A Visit to UCSF

On June 23, 2016, Mom, Marcus and I traveled to the University of California San Francisco’s Memory and Aging Clinic. The day started out with a 1.5 hour cognitive test with one of three doctors that Marcus would see. We arrived at the hospital at 8am and by 8:30am, Marcus was in the back testing. We knew it was going to be a long day for him and we could tell that he was mentally tired after that first test. Once this test was over, Dr. Collin, a resident doctor, called us back into a room where we went through Marcus’ entire history. Mom had sent over his records in advance and they had done their homework on him. Dr. Collin asked SEVERAL questions about each stage of his life, preparing to give a report before the main doctor, Dr. Michael Geschwind, came to evaluate Marcus. Once the questions were done, he performed a few physical tests on him where Marcus had to follow directions with different body movements. He struggled with these simple instructions – at one point, the doctor had mom and I performing the exercises in order to help Marcus out. The simple “follow my lead” instructions are very difficult for Marcus at this point.

After meeting with Dr. Collin for a few hours, we had a lunch break before seeing Dr. Geschwind. As with the previous doctors, Dr. Geschwind had done his research on Marcus’ situation and had met with Dr. Collin to discuss at length the previous few hours. They both came to the same conclusion – Marcus is indeed suffering from Progressive Dementia and it is progressing. A year ago, Marcus had a cognitive test done where he scored a 30 out of 100. This is an extremely low score. After the cognitive test was done at UCSF, Marcus scored a 19 – he has dropped 11 points in approximately 1 year. This was not surprising to us, however, as we have seen the deterioration happening.  

When looking at Marcus’ past medical records, Dr. Geschwind noticed his MRI that was done in 2008 was not “normal” for a 20 year old – he explained that at that age, the brain should be “tight” with no unusual coloring. Marcus’ brain did not look like this. It was more “spread out” with space in between. He also had “discoloring of white matter” on one area of his brain. Dr. Geschwind wants another MRI done as soon as possible.

We will also be having an extensive genetic test done – this will give us an idea on whether or not the dementia was brought on by his previous health issues (heart surgery, head concussions) or if this is somehow genetically-related. There is no family history of Dementia on either side of the family, therefore making it that much more complex.

Since his practice is in San Francisco, Dr. Geschwind is wanting all of the tests to be done at the University of Washington. The tests will then be sent to him once they are completed. Depending on what is found will determine how soon we go back to San Francisco. We are hoping to get these tests done by Fall.

One of the first questions Dr. Geschwind asked us was “what do you hope to get out of this appointment?” Although a somewhat complex question, the answer was simple. 1) We wanted to get confirmation from the top doctors in the field that this is, in fact, Progressive Dementia. 2) We are seeking to find the reason behind why, at such a young age, Marcus got this disease, and finally 3) what our options will be moving forward. We were very satisfied with the answers Dr. Geschwind gave us and feel very confident in working with him moving forward. He answered the first question which enables us to fully plan for Marcus’ future. We have much to learn and will continue to seek out resources. Dr. Geschwind is very intrigued by his case as well and is dedicated to helping us determine what caused this disease. As we settle in on determining the unanswered questions, we will find what options we have. Dr. Geschwind has many colleagues whom will also look at Marcus’ case as they work together.

When discussing the options moving forward, Dr. Geschwind, was honest in saying that there is most likely no cure or reversing this disease. He didn’t want to give false hope, which we appreciate. We have accepted this. We understand that God has different plans for Marcus and we will continue to share his story. What Dr. Geschwind did promise, however, was to use his knowledge and resources in helping Marcus and our family with some answers, tools and direction moving forward.

I’ve been very fortunate to be able to travel home every weekend since May in order to help with Marcus and see my Grandpa before he passed away. My job has been very accommodating and I’m thankful for that.  

It’s been a tough month for our family. Many of you know that my Grandpa Darrell Mills (Mom’s father) passed away on Father’s Day. He was diagnosed with cancer in April and fought a hard battle for 2 months. My family, along with a few other relatives, were able to be in the room when Grandpa passed. Above all, he wanted to make sure Grandma was going to be taken care of and we assured him we would make sure she was. In six months, my Grandma lost her sister, a brother and now her husband. Her perseverance has been inspiring for all of us. She plays a huge role in Marcus’s life as his 2^nd caregiver. Despite how difficult it is to care for Marcus at times, we are hoping he continues to bring her laughter.  

Thank you for your continued prayers, support and friendship. You are a blessing to us!  

 

     

Our family took a road trip to Canada over the 4th of July - here are a few pics! 

     

The Ever-Changing Personality

I will often get text messages from my mom on what kind of day its been for her and Marcus. Lately, "its been a rough day" has been the usual message. Marcus' fun-loving, goofy, happy self is still around, but an angry, confused and often irate Marcus is coming out more and more. The simple things confuse him, often leading to yelling, swearing and many times, crying. It's a vicious cycle that is unpredictable.

This video was taken by my dad on Valentines Day, 30 minutes after Marcus had an outburst of anger that included yelling, swearing and crying uncontrollably. Once he is calmed down, it is all forgotten (for him anyway - it's not so easy if you are the one he is screaming at). We are still learning what sparks this in Marcus but there is no pattern, no sign. It truly is unpredictable. We have found that a change in environment often triggers certain behaviors. Over the Christmas vacation, I witnessed a few of his meltdowns. It is truly sad. The confusion in his eyes is so evident, despite a constant effort to make things as clear as possible for him. He will never get it. It's much like a two-year old having a temper tantrum, except you can pick up the toddler and control his actions. We can't do that with Marcus. We have to let him "cry it out".

Through a connection of a relative in Idaho, I have been in touch with a doctor at the University of California, San Francisco's Memory and Aging Center. Dr. Bruce Miller is the Director of the UCSF Dementia Center, and a leading doctor in research programs at UCSF. He is very interested in Marcus' case and has agreed to evaluate him. Once the paperwork is complete, our family will be making travel arrangements to San Francisco. In communicating with the nurses, Marcus will go through a serious of studies, tests and evaluations that will last one week, with one of the leading memory and aging programs in the country. Our hope is to gain a better understanding of what is causing the ever-changing decline in Marcus, as well as understand what to prepare for in the coming future.

After hearing updates on Marcus, many of you mention how difficult it must be. You are right. It is hard. It's a constant worry. It is exhausting. Mom's every day routine can be determined by Marcus' choice of what kind of day he is going to have. However, we thank God everyday for family. Mom and Dad get a few days off when he stays with my Grandma Marion. He has his own room that has many similar features of his room at Mom and Dad's place. It truly takes a village to care for this child. Although I'm not with him on a daily, I know how exhausting it is to care for him.

Yet, despite all of this, God is still good! He is still in control and He is still working. It is often hard to see past our current situation. Things are declining. Doctors don't have answers. We feel stuck. God, however, is working. As I look back on my personal journey, I've realized that God has worked behind the scenes in many areas of my life, and when I questioned why things were the way they were, He revealed the bigger picture. I believe that is what God is doing now. It is easy to lose hope, but God says to trust in Him. We don't have any other choice. We have to trust that each connection we make, each appointment that is made and each doctor that we see will all be a puzzle piece in Marcus' story.

Until then, we will pray hard, believe what we are praying and keep going.