Oh, Christmas Tree

Kevin spent the night again last night and put up our Christmas tree. Our tree is older and is not quickly put together. First you have to figure out how the stand goes together. Directions came with the tree and are around somewhere, but I have always been a firm believer in doing first and reading directions later, if at all. Each layer of branches has a coordinating colored end such as blue, red, etc...But most of the paint has worn off so at best it is a guess which branch goes to which level. Each branch has smaller branches that have to be formed into a realistic looking pine bough. It usually takes me several hours to sort each pile of branches and then go through each pile and form each bough. Kevin, I found, has a different way of putting the tree together. He just kind of eyeballed each branch and put it in a pile of others approximately the same size, put all the branches on the tree trunk and then kind of spread them out. It was much, much faster than the way I have always put the tree up. There was a time when I might have told Kevin the right way to do the tree and insist he do it my way. It was very difficult to learn to accept help when it is offered and to lose control over the way things are done. I was grateful that Kevin did the hard work and I get to do the fun part, decorating the tree. I realize that there are other ways to do things rather than just my way and if the end result isn’t perfect, well, I have never seen a perfect tree.

Christmas trees

Kevin spent the night Monday night. He pulled out most of our Christmas stuff so we could start decorating. When we owned our two-story house, I decorated big time for Christmas after cleaning up the Halloween stuff. Kevin and I put tons of lights on the outside and the roof of the house. Thanksgiving night we turned it all on and it was (we thought) beautiful and festive! I did different things to the inside of the house. One year, I put a big tree in the living room, a tree upstairs in Kevin’s room and a tree on the roof. Looking through the windows from the outside, it looked like one tree went through the whole house. We always had lots of decorations and Kevin and Wendy would help decorate. Kevin was more into decorating though and wanted things in the same place as they had been the previous year. (He still does not like change). We had a Christmas tree in every major room. Kevin and Wendy had smaller Christmas trees in each of their rooms and the lights acted as night lights for them. They decorated their trees with their own ornaments. Kevin always went for lots of tinsel and bling. That is not his style now. Wendy’s style of decorating was more romantic, a style that she continues to this day. So now we have bins and boxes all over and Kevin will be back on Monday to help set up the tree..

Biscuits

Wendy and the Kids were over yesterday. While the Kids and I did crafts, Wendy did some cleaning for me and washed a load of clothes. I made a stoup (cross between soup and stew) and biscuits. Joshua and Melissa say Grandma makes the best biscuits, so I usually make them when they come over. My Grandmother made biscuits every night for dinner. She never measured her ingredients. She had a drawer in her kitchen that was lined with metal and held her flour. She would make a well in the flour and put all her ingredients into it. Then she mixed it up adding her milk until the consistency felt right. She would pull off a chunk of dough, roll it between her fingers into a flattened ball and put it in her metal biscuit pan. The biscuits would cook up light and fluffy. They were the best biscuits I have ever had. When I was a teenager and doing a lot of cooking, I asked Grandma for her recipe. She didn’t have a written recipe and just used a pinch of this and a pinch of that. I sat there while she made her biscuits and when she took of pinch of this and that, I measured it before she put it into the mixture. Grandma is gone but I still have her recipe and think of her every time I make biscuits. Bisquick makes a good biscuit that with a little tweaking, tastes every bit as good as Grandma’s, but I still like to make mine from scratch just like she did. Now, when I make biscuits, Joshua and Melissa bring their barstools over to the counter and make them with me. After washing their hands, we measure and mix and pat and cut. They roll the biscuit dough in butter and place it in my biscuit pan. The biscuits come out light and fluffy and practically melt in our mouths. It makes me so happy to know that Grandma’s biscuit tradition continues with the next generation.

Life

Ever since I was a little girl, I have said my prayers at night. I always thank God for Brian and I having such a good marriage, for my wonderful kids and family. The other night, after I said my prayers, I lay there thinking. I can understand my having Scleroderma and everything that goes with it. I would rather have it than have someone else in my family be sick. But I was wondering why Brian has Alzheimer’s. He is such a wonderful, loving man; why should he have to go through this? I have often wondered this, but until that night I had no answers. Then in a moment of clarity, it came to me. Brian depends on me for so many things. He always has. My love and support have gotten him through some difficult times. We have always faced everything together. We both know that we will not be here 10 years, probably 5 years from now. We have accepted that. But If I go before Brian, he will be devastated. He has family and friends to help him but you have to know Brian to know that he will not want to survive without me. I figure that God has given him Alzheimer’s so that if I go before him, he will probably be living in the past at that time and not in the present. His memories will sustain him until it is his time. I have to believe that there are reasons for everything. I think in Brian’s case, God is being merciful.
I don’t usually talk about my beliefs. When you are facing death, you have to plan ahead so that you can get the best of whatever is possible out of the time remaining. I believe there is a God. A few hours before my mother died, she said she saw "The good Guy", meaning God. She was not a religious person and to say something like this was out of character for her. I cannot look at the sky or at nature without knowing the miracle of life. My Catholic upbringing has given me my beliefs. My beliefs give me the courage and strength to live the best possible life out of my remaining time. All of us are going to die. Some of us are lucky enough to know when and are better able to prepare for it. I read somewhere that without death, life would not be so precious. That is so true.

Caring Voices

The company that gave me the financial assistance for Letairis is called the Caring Voice Coalition and may be found at http://caringvoice.org I thought it was called Caring Hands. My apologies.
According to Jean Sommers, Financial Team Lead, at the website, I will automatically be approved for financial assistance for Letairis in 2009. If I had been approved before Sept., I would have had to apply again. I sure hope that is how it works. It will be very nice not to have to worry about Letairis next year. Caring Voice was established in 2003. They offer financial assistance, education and caregiver support. I cannot say too many times, how grateful I am to them.
It is not just Letairis that is so expensive. Most of the treatments for pulmonary hypertension range from $30,00 to $150,000 per year. I am so happy I don’t have to go on Flolan as yet, if at all.
Flolan is administered through a permanent catheter placed in a vein in the neck or chest. It only lasts 3 to 5 minutes so it has to be continuously infused. A portable, battery-operated pump is worn attached to a belt around the waist or carried in a shoulder pack. It costs about $100,000 per year and as you can see, is very complex to administer. Home health care aids help patients maintain and administer the drug. Infections can be serious. Interruption of Flolan can be life-threatening. Side effects can include jaw pain, headache, flushing, nausea, diarrhea, and vomiting. As with Letairis, Flolan can increase a patient’s life expectancy. So, you can see why I am so grateful for a treatment given in pill form versus a treatment so invasive as Flolan.

Alzheimer's treatments

There are two types of medications approved by the FDA that treat cognitive symptoms of Alzheimer’s disease. Cognitive symptoms affect memory, language, judgment, planning, ability to pay attention and other thought processes.
Cholinesterase inhibitors prevent the breakdown of acetylcholine, a chemical messenger important for learning and memory. They can delay worsening of symptoms for 6 to 12 months, may more, for about half the people who take them. Aricept (Donepezil) has been approved to treat all stages of Alzheimer’s. Exelon, (Rivastgmine), and Razadyne, (Galantamine), have been approved to treat mild to moderate Alzheimer’s. Namenda, (Memantine), works by regulating the activity of glutamate, a different messenger chemical involved in learning and memory. It is the only drug of its’ type approved for moderate to severe Alzheimer;s to temporarily delay worsening of symptoms for some people.
Brian takes Namenda and Aricept.
For many individuals, Alzheimer's disease affects the way they feel and act in addition to its impact on memory and other thought processes. As with cognitive symptoms, the chief underlying cause is progressive destruction of brain cells. In different stages of Alzheimer's, people may experience: physical or verbal outbursts, emotional distress, restlessness, pacing and yelling, hallucinations, and delusions.
There are two approaches to managing behavioral symptoms: using medications specifically to control the symptoms or non-drug strategies. Non-drug approaches should always be tried first. These include recognizing that the person is not trying to be mean but these are symptoms of the disease and changing their environment to resolve challenges and obstacles to comfort, security and ease of mind.
Medications may be appropriate when individuals have severe symptoms or have the potential to harm themselves or others. Medications can be effective in some situations, but they must be used carefully and are most effective when combined with non-drug approaches. When considering use of medications, it is important to understand that no drugs are specifically approved by the U.S. Food and Drug Administration (FDA) to treat behavioral and psychiatric dementia symptoms.
As with all medications, talk to your doctor about what treatment may be right for you or the person in your care. A medication's effectiveness, and the side effects it may cause, can vary from one person to the next. For one individual, one drug may be more effective but have greater side effects. For another person, the same drug may be less effective but have no side effects.

Living with Alzheimer's

Brian’s newest symptom is frustration when trying to make himself understood. He will see something on TV and come find me to tell me about it and by that time he has forgotten the words. If I am watching the same program I usually can figure out what he wants to say. I have to change the TV stations for him so I pay attention to what he watches so that hopefully it is easier for him to make his point. "Writer" is actually David Hasselhoff who is guest staring on a sitcom. Brian recognized him from his old show "Night Rider."
Brian loves to watch certain TV shows and movies, although his attention span for movies now-a-days isn’t very good. He is not able to work the remote anymore, let alone put a movie in and play it. He used to sit and watch the TV for hours at a time, now he is in motion about ¾’s of the time. At first I thought he was just checking to see where I am, but he is up and down even when I am sitting with him. And as I have said before, we go to bed and he is up and down for about 20 minutes before he settles in for the night.
He can’t focus on reading and if he could, he can’t comprehend it. If I point at something, he doesn’t understand where or what I am pointing to. Once in a while when he talks to me, he faces the other way as if I am on the other side of him. He knows I am there, just not sure where. More often than not, I help him with getting dressed and using the toilet.
Brian hasn’t been depressed (that I can see) or angry which are common to people living with Alzheimer’s, or any chronic disease. Brian has always been a "what you see is what you get" kind of guy. He has always depended on me for financial matters, keeping track of social events and running our household. He is very comfortable letting me take care of him. He loves and trusts me and knows no one could do it better at this point in our lives. So he hasn’t had the fears that others have about what to expect with the disease process. His only expectation is that what ever happens, I will take care of it for him. It might sound simple but Brian is not a complicated guy.
Brian lost his job as a forklift operator early in the disease process. He tried temp work but wasn’t able to learn new skills. The last year he worked was in the garden department at Walmart. As his symptoms got worse, I would go in the back and write down his schedule for him and tell him when to work. He liked to get to work at least an hour early to familiarize himself with the store each day. I drove him and picked him up. He got where he couldn’t read anymore and when stocking shelves, just matched like items with like items not code numbers. If he had a major problem trying to find or do something, he would call me for help. He likes people and the other personnel loved him. We managed to keep his disease under wraps until he went out on disability.

Alzheimer's

I have done a lot of talking about my disease processes. Brian wants people to know about Alzheimer’s and living with that disease process.
Alzheimer’s is the most common form of dementia that as many as 5 million Americans have. It destroys brain cells, causing memory loss, changing thinking and behavior. It gets worse over time and it is fatal. It is the sixth-leading cause of death in the U.S.
By the time Brian went in for diagnosis, it was fairly easy for the doctors to see the damage Alzheimer’s had done to his brain. His CT scan showed his cerebral cortex, the outer layer involved in memory, thinking, judgment and speech. had shrunken due to the disease process. He wasn’t able to perform simple tasks such as drawing a clock or remembering three words that the doctor had given him to remember just a few short minutes before. Brian was already at the moderate stage of the disease process.
As we age, we have occasional problems remembering and maybe some slowed thinking. With Alzheimer’s, serious memory loss, confusion and other major changes in the way our minds work are not a normal process of aging. The brain has 100 billion nerve cells (neurons) that communicates with many others to form networks. These networks have special jobs such as thinking learning and remembering. Others help us to hear, see and smell and tell our muscles when to move. In Alzheimer’s, the networks break down and eventually they die. Scientists are not really sure where the breakdown starts.
Two abnormal structures called plaques, (protein deposits that build up between nerve cells), and tangles, (twisted fibers of another type of protein that form inside dying cells), are prime suspects in damaging and killing nerve cells. Scientists are not absolutely sure what role plaques and tangles play in Alzheimer’s disease. Most experts believe they somehow block communication among nerve cells and disrupt activities that cells need to survive.
Brian has early onset Alzheimer’s, meaning it started before he was 65. Brian is only 57. It may affect people as young as those in their thirties.
Alzheimer’s had no current cure, but there are treatments, such as Aricept for the symptoms. Most of what we know about Alzheimer’s has been learned in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing.

And Then...

In 1992, Kevin called me at work to tell me the fire department was there and I needed to come home. When I drove up, there were three trucks and four fire department cars parked out front. They had heard of our haunted house and wanted to see it. So Kevin and I gave them a tour. They were impressed but also offered several safety suggestions that we took to heart. That year was the first we used walkie-talkies so that we knew where everyone was at any time so in case of a fire we could tell the fire fighters. We made the second floor more accessible to exiting in case of a fire. It was another great year!
In 1993, a few hours before we were due to open for the Haunted House tours, we were told we could not open without a permit. We would have had to wait until Monday to get the permit and of course, by then Halloween would be over. After frantically making some calls, I found out the permit was necessary because it was thought we were charging money. Our signs clearly stated we accepted donations for whatever charity we were giving to that year. No one was required to pay to go through the house. It was just pure fun. We didn’t need a permit after all!
The first year all of our kids got involved, there was a huge storm the night before the party. They had worked tirelessly on a maze out in front of the house and a huge set of experiences from labrynth that went from the side yard all through the back yard. Wayne had built a pirate ship in the pool with skeletons for the crew (we even had a ship launching ceremony!). It was all in shambles and the pirate ship looked like a shipwreck. Everyone rallied together and we were able to repair a lot of the damage in time for the party that evening. The pirate ship we left to look like a shipwreck because frankly, it actually looked pretty good and intentional.
Each year we tried to out do the past year and we all were just getting exhausted. We decided that 1994 was the last year for the party and the haunted house. It was a bittersweet party but we have so many memories to last us a lifetime.

Halloween

Last night was Halloween. We spent the evening at our friends who decorate on a good scale. We go over for dinner and to watch the trick or treaters enjoy the props.
From 1976 to 1994, Brian and I had a Halloween Haunted House that really was incredible. We had a two story house and every room was decorated with a different theme each year. We couldn’t do it all ourselves. We have wonderful friends and family that helped us. We would start planing in April and start gathering supplies. Not having any budget, (or as we called it, "A beer budget"), we grabbed anything we could for free. We made most of our props because the wonderful Halloween props that are available now were not available then. We used tons of cardboard, latex, fiberglass and spray paint.
Work started usually in August with people over working every weekend. Kevin and Wendy were kicked out of their rooms and had to sleep in the family room downstairs for the next few months (they loved it!). At first we stapled and nailed cardboard right to the walls. Later years, we made frames to attach the cardboard to and reduce the damage to the house. I swear, if someone in a helicopter had flown over our house with a giant magnet, our house would be flying! And I am sure the local hardware store had his highest revenues during that time.
Wayne was in charge of building things for us. Charlie was in charge of making things move. Brian was in charge of the prop department, Mike was the Cardboard King and Colleen was in charge of keeping us supplied with chocolate chip cookies. The last Sat. of the month we had a grand party with as many as 250 people. Even though the party was so much fun, the most fun was in those weeks leading up to it. As the party got closer, then we all worked almost every night as well. We never laughed so hard or so much!
Brian and I tried to keep the use of our bed during this time so it was nothing to sleep with hundreds of spiders including a giant spider over our bed, as we did one year. Another year we slept with Lizzie Borden, and another year we slept with the plant from Little Shop of Horrors. At this time we were very involved with the local little league. The league needed to raise money so Brian and I offered to open our house for a few days to accept donations for the league providing the league helped us take tour groups through. We ended up making $700 for the little league that year so we continued to open our house for about 4 days each year to raise money for charity. We raised money for Earthquake Relief, Make-A-Wish and others. Being big Disney fans, we were able to send several ill children to Disneyland through the Make-A-Wish Foundation. We would ask for a $1.00 or $2.00 donation and no one was turned away for lack of money. Many of the neighbor kids came through several times a night. And then......I’ll tell you tomorrow!