How can you figure out if your loved one has Alzheimer’s Disease?

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For me, we just thought that he was getting older and forgetful. Rick started forgetting where he had parked his car. He used to be very methodical and would never forget anything. He was like a human map, knew every street and shortcut, he was Google Maps before Google Maps was invented. He also had an idennic memory. He passed every test with a perfect score. He created a software program to prepare his taxes by typing in the entire tax code into his program. And then he was starting to forget things.
My sweet genius husband started to forget his wallet, keys in the door, in the UPS store post office box, his phone, he forgot to take his medicine and eventually he would forget everything, except me so far (3 years now).

Rick doesn’t know my name anymore. So I asked him what’s my name and he answers you guys. That’s what I have left for the man once was so inspiring to me. He stills say everyday how beautiful I am and how much he loves me. But I believe that I have more a physical body than the brain that I fell in love with. It is so difficult. I want to give up so often.. But I love him more than my own life. He is and was everything to me. All that I hope for. Am I going to just get rid of him? Never. We will fight this together, this evil disease.

Pay attention of some little details to evaluate your loved ones:

1 – Memory Changes

2- Withdrawal From Usual Activities

3 – Disorientation to Time or Place

4- Visual-Spatial Difficulties

5- Decrease in Written or Verbal Communication Ability

6- Challenges in Problem-Solving and Planning

7- Personality and Mood Changes

8 – Misplacing Items Frequently

9 – Decline in Judgment

10 – Difficulty Performing Familiar Tasks

 

I need to fix him

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For the first couple of years I was really determined to fix him. Everyone thought that I was in denial. We tried:

– homeopathic supplements

– organic diet

-lots of exercise

-ketogenic diet

It was working for a while. He passed the MMSE (Mini Mental State Exam) with a 28 out of 30 but then in March of 2016 he had a brain bleed and that set us back tremendously. It was horrible! I wonder if anyone else has experienced this? After this huge setback, I decided we should began writing his memoir to preserve his memories and include all the incredible songs and lyrics that he has written.

After that, I am forced to be very patient and loving and basically I have lost the love of my life. Well, his body is here but is his brain still here? No. I miss him.

It is very hard to face what is going to become of us and I really do not know if I can withstand it but I’m going to try. I’m waiting for Israel to come up with a cure. I keep saying I need a miracle. When will something good come?

I get really happy for small remembrances and when he reads something correct. I love it when he corrects Faby, his caregiver, if she sings the wrong song lyrics. I know that I sound like a bit of a downer right now but I have reason. I need to get it off my chest. Sometimes I can be very funny about things. That’s how I hope this blog is going to go; some days funny, some days sad.

I hope we can get through this together as my father used to say about himself to deal with my mother and all of her illnesses he was made of Iron well I think I am a lot like him so I must be made of Iron too.

I keep researching everyday for every clinical trial that we could try but he needs to pass MMSE or MMSE2 and now he just gets 1 out of 30. The score he gets is what’s his name? Frederick Moore. What day is today? He doesn’t know. When is your birthday? Sometimes he answers and others he doesn’t. None of the trials will accept him because he’s too far gone or we cannot risk a micro bleed from blood thinning. Why does he need to pass this test? I hate this test. I am so desperate that I am willing for him to be the guinea pig! I will try anything on him! But someone please cure him!

When I decided that`s enough

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It took years to receive the actual diagnosis. It was a slow progression of forgetfulness. When we went to Dr. Amos (neurologist) It was when we found out for sure. Rick couldn’t pass the Mini Mental State Exam. He couldn’t draw a clock. He couldn’t remember the 3 words…Light – Pen – Watch.

I always ask myself if we had found this before, could we have changed anything? I don’t know but I suggest that if you think that you have any probability of someone close to you that shows these symptoms look for a neurologist immediately.

Well we are 9 years into the disease now and sometimes he calls me mom. Very sexy right? My dear husband is calling me mom.

I have to help him in the bathroom (I will spare you the details, I refuse to write about it) and help him take his pills (I try to give every vitamin or supplement that I find that is good for fighting Alzheimer’s or the brain. So there are about 10 pills in the morning and another 10 in the afternoon).

I also help him shower (he doesn’t want to take off  his clothes, everything hurts, the water is too cold or is too hot and It is supposedly killing him).

I must remember his songs (his songs, that he wrote, and I must sing with him so he remembers some parts and sing along, by the way, he stills remember how to play his guitar very well).

I put on his pajamas (he doesn’t want to change ever and you know sometimes I am so tired I let him sleep with his jeans on and brush his teeth, and floss (flossing is the same as death! Impossible, he hates me so much when I do it) pretty much everything.

We never had kids, but now I have a “2” year old kid (Rick). I cry all the time and sometimes, try not to cry in front of him and  I try to laugh with him and say that he is still sweet and caring. I know that he loves me so much and I love him too. But try to put yourself in my shoes. I am an open book.

Since the brain bleed in March of 2016, it has been incredibly difficult. I can’t see clearly the progression because I am here every day but every minute he gets worse and I know things will get so much worse. It’s so hard to accept. Why doesn’t anyone have a cure yet? Every clinical trial is just for mild Alzheimer’s. Scientists have found a cure for Aids! We now seem to have a way to treat Cancer and things are improving. Am I just doomed to suffer and continue losing the love of my life?

 

 

 

 

 

The beginning – 2010

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In the beginning of 2010 I was noticing that Rick would forget things. I wanted him to visit a doctor but he didn’t think anything was wrong. It wasn’t that important until I thought that’s enough! This is not normal. I forced him to go to the neurologist. On July 8, 2010 they ordered an Magnetic Resonance Imaging (MRI) and he’s incredibly claustrophobic so he did a stand up MRI. This didn’t show the disease just an arachnid cyst that was there since birth.

From 2010 until 2014 I just dealt with Rick forgetfulness every day without having a clue of what was coming. I think that the doctor thought that it was just his Type 2 diabetes making him forgetful.

Do you know just one in four people with this disease gets diagnosed? It was estimated in 2014 that there are approximately 44 million people worldwide living with Alzheimer’s disease. By 2050 it is estimated there will be as many as 16 million Americans living with this disease. You could be next! What is causing this? Is it our nutrition? Is it just DNA? What is it? Every 66 seconds someone in the United States develops Alzheimer’s disease. And why don’t we have anything that can help? AHHHHHHH!

Since 2010, I have been on a mission to improve his memory.

Since 2014, I have been on a mission to cure him.

Since 2016, when he had a brain bleed from being on baby aspirin and fish oil and many supplements it has been a downward spiral.

When I talk to friends or some doctors they are in shock, Rick used to be a genius, everyone knew it. It took a long time to figure out that he had Alzheimer’s at such a young age. After I figured it out, I spent a lot of money on anything and everything to help him. Why? Is it worth it? Some people say a lot of vitamins it is just expensive pee. His nutritionist always says it is better to get all of his vitamins from the food that he eats.

Life is complicated. I keep working to make money to pay the bills. I am already in debt on credit cards… I need to pay a caregiver and daycare and his insurance and our home expenses and it’s just so expensive. I pretty much do everything by myself. It’s not fair. I have heard of people going completely broke fighting this disease. I just don’t have the time to work more, cook, clean give Rick a shower, take my shower and pay the bills…pretty much everything. But Rick is the love of my life and in fact my whole life so I started trying everything to help him or prevent things from getting worse. I guess that I was in denial because I believed that I could fix him.

From 2010 to 2014 I noticed that Rick wasn’t the same as he used to be. I didn’t know how to help him. He was incredibly independent before and he was a man that could multitask. He was a Renaissance man, knew everything from Shakespeare to Ren and Stimpy. 

In 2014, I kept noticing that Rick wasn’t his old self. I finally said that we had to go to a different neurologist than he had been to before. I asked everybody that I knew to give me a reference and then my sister who works for a doctor who had Alzheimer’s referred me to a doctor in Santa Monica.

We had our first appointment with a different neurologist on 09/25/14. At that appointment he asked him to draw a clock, and he couldn’t. Other questions couldn’t be answered either. The doctor gave us the diagnosis of Alzheimer’s dementia. How is this possible? He was only 64 years old! This is too young to have Alzheimer’s disease! No I said, impossible! Thinking back, I don’t know why I didn’t realize that this would happen. Rick’s mother had Alzheimer’s in her eighties, his aunts, about the same age and his grandmother in her nineties. This inherited disease is occurring in this family a generation younger each decade. But most of the family members were women. But he had the gene. It is known as APOE4/4.

Do you or your friends have Alzheimer’s disease in your family histories? I suppose I was living in a dream. Because we had such a great relationship and we were so happy together. This is not fair, the love of my life can`t have Alzheimer’s. He doesn’t deserve it. I don’t deserve it. I was always the person who went along with all of Rick’s ideas and thoughts. He is the one who would make all the decisions and now I need to be the boss. I hate to be the boss. Where is my Rick?

After we received the actual diagnosis in 2014 we started the process of trying to slow the progression, trying to find a cure, and figure out a solution. I was sure that I would find something. I researched every article, every treatment, I spoke with everyone. Where are the answers? I am writing this blog in 2019 and I keep searching. There isn’t a day in my life that I don’t search every article, research google for new treatments, receive emails from clinical trials, and ask everyone that I know who finds anything to send it to me. Today I received something from a surgeon from Brazil. I will try anything. I am desperate! Please send me any trial, anything that worked for you? rschyjer@gmail.com. I will also write about everything that we’ve tried before.

The love of my life has Alzheimer’s Disease

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Hi my name is Renee.
I am not sure how to tell you this catastrophic story but my goal is to share everything I have learned so that we can help each other get through this or find some help and or support. Do you know anyone with Alzheimer’s disease? Do you have any ideas and suggestions that you would like to share? Please write me rschyjer@gmail.com with any comments, questions, ideas, and stories.
I married the love of my life. He was brilliant, a genius in fact, handsome, and so loving and giving, the sweetest person you could ever meet. He was an amazing songwriter, musician and singer. We would have conversation until the early hours of the morning and being together was heavenly.

After 35 years of loving each other and marriage, we got the horrible news that Rick had Alzheimer’s disease at age 60. But 60? It is such a young age 60. Men even have kids at 60, my dad did. People don’t retire until 65. Getting this news was the saddest day of my life.

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