As I struggle with the day to day process unfolding of my brother’s supposed degenerative brain disease, I have to step back and be grateful for each moment. This is the only way I can bring sanity to the situation. I am grateful that I have the opportunity to help and serve him in whatever way I can. I remember going to see him one night and he asked me if I was going to pick him up the next day in my private jet. I later called my son Kyle to tell him this. I said “Kyle, I think I’m going to win the lottery because Gary thinks I’m going to pick him up in my private jet tomorrow.” I remember thinking I have to write this down before I forget it. It seemed too funny. Even if I won the lottery, I would never have a private jet. At least not in this lifetime. What does he know that I don’t?
Aside from the nightmare of the drama of Lewy Body Dementia, there are so many aspects of the bigger picture that most people couldn’t even imagine unless they were living it like I am. First of all, I still need to work and function. Some days I have to leave work early at my job at the law office so I can meet Gary at doctor’s appointments. Then my other job of counseling people with their pre-need cemetery plans, I can’t even do right now. Aside from the fact that I find myself crying 50% of the time, I can only focus on my brother living, not dying. I did make all the necessary arrangements except for his headstone or marker. I just can’t bring myself to do that yet. Although it is in the plan before we spend all his money on his daily care. The medical bills are staggering. Just matching up the Explanation of Benefits with the appropriate bills is a challenge. The other day I got the bill in the mail from the pharmacy for his medications for the month of November. Almost $1,900. Yikes…how is that even possible. I am working with the clinic manager at the nursing home to sort thru that. So many of the drugs that were prescribed for him after he left the hospital for diagnostic testing, were later discontinued. So we have to make sure to get credit for the drugs not used. He does not have prescription drug insurance coverage because he never took any drugs.
I try to go visit Gary at least once a day at the nursing home. Luckily it is only a five minute drive from my home. So now this is part of my routine. I don’t stay long. Just check in and see how he is doing. Early on, there were days that he couldn’t keep his eyes open, didn’t know who I was or called me Mommy. It never bothered me that he didn’t seem to know who I was. I know that on some level he knows. I do give him Oneness Blessings every day. He asks me for this if I forget. I find that my faith is growing stronger and I understand my beliefs more. I don’t believe that when we die we take our diseases with us. I cannot see my mother in heaven still battling pancreatic cancer. These are all part of the lessons we are here to learn while we live on this earth. Always a bigger picture going on. One day at a time and sometimes only one moment at a time is all I can handle. But handle it I will, with love, faith, wonderful supportive friends and family. I can do this.
I see that I haven’t posted anything since August 13th. A lot has happened since then. I started a website www.caringbridge.org/visit/garyjulin. This was to keep everyone updated without me having to repeat myself explaining what was going on with my brother, Gary Julin. So I have decided I need to start journaling what has been happening and this seems to be the best format for that. So…where do I begin?
At the end of August, my brother Gary was starting to get really strange. He fell at my house twice. Once going down the basement stairs, he ended up on his knees. Then he fell walking across the living room where there was nothing there to cause him to trip. I had already moved the throw rug for fear that he might trip and fall. Then he started to hallucinate and see things that I could not see. Eventually I took him to the ER at the recommendation of his Neurologist so we could determine what was actually going on. After about a week of testing they determined that he might have something called Lewy Body Dementia. www.lbda.org That was the first time I ever heard of this disorder. Prior to that, Gary was thinking that maybe he had Parkinson’s. He had even bought a number of books on the subject and was worrying himself sick. I didn’t have the heart to tell him that what they were diagnosing was worse.
On September 7th the hospital discharged him and he was moved to Maple Crest (a skilled nursing care facility) and our nightmare continued. Every day I am learning more and more about this disease. It starts with Parkinson like symptoms which explained why he was having balance issues and trouble walking. He said his feet felt like they were in cement blocks. This from a marathon runner who has run 170 marathons during his career. He stopped journaling abruptly on July 14, 2011 with 70,927 miles logged in on his body. He was weighing less than 140 pounds. At 6′ 2″ his body mass index was off the charts. At one point he was weighing 125 pounds.
Many days he does not know who I am. If I were to ask him he might respond with “you’re my Mommy.” Luckily I really don’t care who he thinks I am. I just want him to feel safe. And hey, if he thinks I’m Mommy…so be it. I know on some level he knows who I am. My main concern for him is that he can’t walk. This means he’s a huge fall risk. On October 1st at approximately 9:45 PM he fell from his Merry Walker with no one actually witnessing what happened. I received a phone message which I did not hear until the next morning. So I immediately went over to see him and investigate. They said he had bumped his head, but the lump was no longer visible. I said what about his red and swollen wrist? Suddenly a nurse was summoned and then they decided it better be x-rayed. Sure enough it was broken so we then had to have him transported to ER. At the ER, he told the nurse that he fell training for a race. I told her she couldn’t really believe anything he said. Then I found out that nobody in ER knew anything about Lewy Body Dementia or had even heard of it. It seems that one of the problems with this disease is that they are extremely sensitive to medications. That is why I believe he was originally screwed up by ER when they gave him an antipsychotic drug called Haldol. Something that should never be given to someone with LBD. So the wrist was further examined by an orthopedic surgeon who indicated it was not a normal break. Of course not. Why would anything Gary do be normal? He said he would probably need surgery. I freaked out about this because of the fact that if they put him under general anesthesia this could screw him up more mentally and cause irreversable damage. Since I expressed this concern to the doc, he decided to wait until he could speak to his Neurologist. Now this was happening on Sunday and the Neurologist was not available. The on duty Neurologist suggested they look at Wikipedia. Are you kidding me. Seems I knew more about this disease than the professionals. Thank God for my Blackberry.
So they put his broken wrist in a splint to secure it until we determined what course of action to take. I was also getting ready to go out of town for two weeks on a Mediterranean Cruise. I knew Gary would not want me to cancel that so I forged ahead with my plans. I worked out a deal with the orthopedic surgeon that we would x-ray his wrist again in three weeks and see then if surgery was necessary. When we went back in for the three week exam, the doctor decided it would be OK to just put on a cast. So we did that and then three weeks later went back for another x-ray. Luckily we got a miracle and it was determined that it was mending OK without surgery. This is his left wrist and he is right handed. So another smaller cast was put on to protect it while it continues to heal. To be continued…
Did you ever notice how people love getting stuff for free? This use to irritate me but now I accept it as what is. I guess it comes from my extensive background in retail. People always looking for a deal or a coupon or some kind of discount. There are people who love using coupons at the grocery store and not paying for anything. I’m sure there are even a ton of books written on this subject. I see the bigger picture, that if everyone shopped this way, how would the retailers stay in business? Do these coupon carrying people not understand this concept? Well enough of my carrying on about it. Can’t change other people. I can only change myself.
I remember my friend Olga teaching me how to never turn down something that is offered to me. Even if I don’t need it or want it. I should just accept it and and say “thank you” and then pass it on if necessary. That way you won’t offend anyone’s kindness or thoughtfulness. One time Olga and I went to the casino and she handed me a $100 bill. I looked at her and said “I can’t take that.” So she looked back at me and said “what?” So I took the money and said “thank you.” Didn’t want to offend my teacher.
So this week my friend Mark called me and said he had a gift for me and I was just going to s**t when I saw it. I said oh is it an Ipad? And then I patiently waited for my gift to be delivered. Turns out he bought me a 32″ flat screen TV to replace my old TV that weighs a ton that was starting to not work right. What a wonderful friend I have. He has been teasing me for at least the last six months that he was going to buy me a 32″ flat screen and he kept naming some off brands I’ve never heard of. So even better yet, he got me a Toshiba. At least I’m familiar with that brand. I am so very grateful to Mark and I appreciate his kind heart. He knew that I was stressing out over my brother’s mysterious possible health challenge that hasn’t been diagnosed yet as we patiently wait for the next appointment with a neurologist. Wow that was a challenging sentence but you get my drift. I’m worried, scared and anxious as to what is in store for us next. But it is all OK. Last night as I was sitting and watching a movie with my brother, he turned and looked at me and said “thank you for sticking with me thru this.” So I guess I am appreciated! Just hope I find some guidance and answers to this dilema soon.
So on another subject, you may or may not know that I am a Memorial Counselor at Forest Lawn Cemetery which I like to refer to as Forest Lawn Memorial Park. Afterall, it is a park. To be exact, 349 acres of rolling hills, and trees, it is a bird sanctuary, a wild life preserve and an arboretum. It was first established in 1885 and so far only 150 acres have been developed. Plenty of room for continued growth and expansion. What most people don’t realize is that it is a non-profit organization. For those people who pre-plan and take care of their needs ahead of time, there are numerous benefits. You can make payments with no interest, no credit check, no hassle. You might even quality for a Veteran’s Certificate or other discounts. So thank you for taking the time to read my blog and if you have any questions about Forest Lawn here in Omaha, Nebraska please be sure to contact me.
July 24th was my Mother’s birthday when she lived on this earth. She has been gone from our sight since April 1999, but never gone from our hearts. Those of us who knew her and loved her will always remember her kind ways and gentle compassionate spirit. She was a wonderful wife, mother, devoted grandmother and volunteer. She never complained about anything and always worked hard to be the best that she could be. She was such a wonderful role model for me. We miss you and love you so much! Thanks for all that you did for me. Wherever you are, I hope you are having a wonderful day! And don’t forget to send me a sign. Forget the pennies, let’s go for a hundred dollar bill! Thanks MOM 🙂
Raymond and Dorothy on their wedding day.
Thanks for taking the time to visit my blog and helping me to remember my Mom. I hope your day is filled with many blessings.
I’m reading a book called Purified By Fire. It is about the history of cremation in the United States. So life is full of choices. Even at the time of our death, there are choices to be made. If we have an opinion, we can make those choices ahead of time and take care of the details…or we can leave it to chance. That is also an option or choice.
Since I made a decision to be cremated, I want to know as much as possible about it. Yes, I know I’m weird. So what else is new? I remember a long time ago, one day my Mother suddenly announced that she wanted to be cremated. My Dad said wwwwhhhhaaatttt??? (I think what he really meant was WTF…I make all the decisions here!) My Mom actually had an opinion of her own. For that I am most grateful. Now that I’m reading this book, I’m wondering if she made that decision around the time of John Lennon’s death. I had forgotten that he was cremated. Maybe that’s what helped her to make this decision. President Kennedy was cremated. John Kennedy, Jr. was also cremated and his ashes spread at sea. All this stuff I had forgotten. Why? Because it’s not really important. It is just a personal decision for each one of us. Something to think about and ponder…
This morning I went to my “favorites” to find a log in page and this leaped out at me. I saw Alberto Villolodo at a seminar once a few years ago and that must be when I found this. I have been gathering information about death and dying for quite some time now. Probably since 1992 when my boss committed suicide and I was looking for answers to my many questions. Books would literally fall off the shelf at the library or they would be out of place, only for my eyes to see them. As my Granny Ruth always told me “Everything happens for a reason.” So if you are curious, check it out…
I didn’t really intentionally set out to research death and dying, it’s just evolving. Kind of like I didn’t want to be an expert on migraine headaches but after experiencing them for over twenty years, I feel like I know a lot about them. Same thing with back fat. Didn’t want to experience that, but there it is in the mirror. Yikes. Time to go on a diet!
Oh, and also, for the record…I talk to dead people. I call them my helpers from the unseen. They usually don’t answer or talk back but I talk to them anyway. 🙂
Thanks for visiting my blog and have an awesome day.
This morning I was once again remembering how I became so fascinated with angels. I think it all started after my Grandma Angie died. I remember going shopping for some type of comfort or distraction. I wasn’t looking to buy anything, I was just browsing. Afterall, my Mom did teach me to shop! I was at the Richman Gordman store wandering around and came upon a Precious Moments angel doll. I remember picking it up and looking at it’s name tag. It’s name was Angie and I knew I needed to buy it (even though I’m sure I couldn’t afford it at the time).
The doll seemed to give me a lot of comfort. So I bought a special chair for it and everything. Then I started collecting angel Christmas ornaments. Eventually I started leaving them out and decorating with them rather than putting them away. That just didn’t feel right to me.
My Mom was a collector and I assumed that as an adult I was supposed to collect something too. Like it was a right of passage or something. Mom collected owls and it wasn’t until after she died that I realized they represent wisdom. So I started collecting all kinds of angel items. Plates, dolls, figurines, statues, garden angels, artwork, blankets, sheets, pillows, jewelry…you name it, I probably have it. Eventually I manifested my own angel gift store called Angel Treasures. I was the exclusive dealer in Nebraska for the art of Andy Lakey. What an honor that was. Andy had a near-death experience from a drug overdose when he experienced angels swirling around him. It is a miracle he survived and came back to tell about his experience. He never did drugs again and eventually started painting angels including 2,000 angel paintings from 1990 to 2000 to represent each year since the birth of Christ.
I had an Andy Lakey angel painting displayed at my store that was valued at $1,200. It was stolen a few weeks before Christmas. I remember feeling like it would come back, I just didn’t know when or how. So I put up a small note on a 3 x 5 card on the nail where the painting had been hanging. It said Angel # (whatever number if was) stolen by someone who is not an angel. Then I drew a sad face because I can be so dramatic! Along about April the painting was returned by drug enforcement officers. It had been stolen and used for a drug deal. The drug dealer had a girlfriend who was an angel collector so he was in the store looking for a gift for her. When he saw my note, he knew he had the stolen angel in his possession. He returned it because he thought something bad would happen to him if he didn’t. He also returned some books I didn’t even realize had been stolen.
So God and the angels work in mysterious ways. We never know for sure where they are or when they will show up, but as it says in A Course In Miracles “God’s angels hover close and all about. His Love surrounds you, and of this be sure: that I will never leave you comfortless. … ”
Thanks for visiting my blog and have an awesome day filled with many blessings.