Today, we start the screening process for entrance into a Study for a drug that may help to improve brain functioning. It is sponsored by GlaxoSmithKline and headed up in our area by Dr. Marwan Sabbagh, MD. Our leader in the Study is Zoran Obradov, MD, and several other individuals to conduct the testing.

The first stop of the day will be at The Sun Health Research Center in Sun City, Arizona where Dr. Sabbagh and Dr. Obradov have their offices.  It is a place that is clean and bright but also reminds me of something straight out of “The X-Files” with its double doors posted with signs that tell us that ONLY research personnel are allowed to enter. We enter through a different set of doors and will be seated in a pleasant anti-room with a television set that shows CNN all of the time and lots of literature on various programs, information about Alzheimer’s and other booklets and papers. Some of them talk about “brain donation”, which freaks me out when I first see them.

But, it’s still early in the day and I have the toughest job ahead of me before we get to the research center. I must make sure that my husband takes his medications and that he gets dressed in time for us to make our appointment which is scheduled for one o’clock that afternoon.

You would think that since it is now only seven in the morning that I would have plenty of time on my side, but you would be wrong. It takes a long time to get an Alzheimer’s patient ready to do anything or go anywhere because there is much resistance and a lot of reminding.

I finish my awful coffee and start to get myself ready for the day. I believe that I have learned to set records for getting myself together that other women could only envy. Not that I am going to look nice or put together or anything of that nature, but I will be good to go within an hour.

As I finish combing my bed head to make it resemble something that doesn’t bring to mind “The Bride of Frankenstein”, it is time to wake my husband. This is where the day really begins for me as his caregiver.

That brings to mind the term “caregiver” which the dictionary describes as:.

The difference between number one and number two are vast and life altering. I am now a “Caregiver” but I am also a wife. I have been a wife for thirty-six years and some of the roles in our relationship have completely changed since his diagnosis and the onset of his disease.   

Where once my husband took care of me, I now take care of him more often than not. We have always shared the roles of husband and wife and both of us have done our share to contribute to a good relationship that never allowed for either of us to be solely in charge of the marriage. In other words we shared everything and had a very good marriage as a result. We still have a good marriage only now it has changed direction and description and doesn’t even resemble the partnership that it once was.

I make my way to my husband’s room, (we now sleep in separate rooms because he is restless and gets up at all hours of the night and I am an insomniac and once awakened, am up for the day).  I gently call his name and he looks at me with some confusion. He isn’t confused in the sense that he doesn’t recognize me, but in the way that most of us are upon being awakened out of a sound sleep. I ask him what time he got up the first time and he says that he can’t remember. This is common as are the other things that he can no longer remember. Things like the date, year, time, place or whether or not he took his medication or ate afterwards which is a necessity.   

Now comes the difficult part…at least for me. I put out his medications (of which there are at least nine different pills for the morning dose), and prepare to check them off on a self-made chart that I keep so that I won’t forget when and what I gave him. He procrastinates about taking the medication and we begin the medicine dance.

This probably brings to mind some Native American ritual where war paint and hopping around in front of a fire are involved but. Nothing could be farther from that description.

I remind him that the pills are out and that he needs to take them. He acknowledges me and proceeds to ignore my request. I go off to do some chore that needs to be done before we leave for the research center and when I return about fifteen minutes later the pills are still neatly laid out in their spot on the sink. I sigh and tell him once again that he needs to take his pills. He once again says, “Okay”. While continuing to stare at the Weather Channel, his favorite television viewing.

Time passes and at least ten more reminders are forthcoming about taking the pills. I am getting frustrated and my patience is wearing thin. I should mention here that I am not known for being a patient person in the first place so it doesn’t take much to set me off.  

I want to mention here that a “Caregiver” MUST be patient when it comes to this type of brain disorder. It is the most difficult form of care-giving in my opinion because a simple medical treatment and a pill won’t make things better. It takes the patience of a Saint to deal with an Alzheimer’s patient and that is one of my biggest challenges.

After two hours of reminding and cajoling, I have gotten to the end of my rope and I do what I should have done in the first place, I walk the medication into the family-room with a glass of juice and hand him one pill at a time until he has taken all of it. He resents this because he feels that I am treating him like a child (which of course, I am).

With the pills out of the way for the morning I must see to it that he consumes some food or the pills can and will upset his digestive system (it says so on the bottle).

Here we go again. I ask him to eat a bowl of cereal with fruit and he answers in the affirmative. I run around doing more chores and keep coming back to remind him to eat. We go through this process for at least an hour until I fix the cereal and hand it to him. He than eats it and finally the medication/eating ritual is complete. It only took two hours. I check my watch and it is now nine o’clock and I KNOW that I have at least a three hour battle on my hands to get him ready to leave for the research center.

 I have noticed that the man who was once very regulated and concerned with his physical hygiene no longer exists and I must remind him to shave, brush his teeth shower and get dressed in something besides the ratty sweat pants and tee shirt that has become his daily uniform of choice.

If it seems as if I am making light of this it is only an illusion. It is painful to watch and even more painful to look back on what once was and how all of that has now gone by the wayside. It is painful and sad and frustrating so even though I am attempting to insert a little humor here, in my heart there is none.

Finally, with about half hour to spare my husband starts to get dressed. He spends at least fifteen minutes in the bathroom and comes out unshaven. I ask him what he was doing and he says, “Nothing.” I look into the sink and see that at least he has brushed his teeth and combed his hair which is in desperate need of a good wash. He didn’t shave and looks like a homeless person.

I ask him why he didn’t shave and he replies, “What for?” He makes a good point as we seldom go anywhere other than to doctor’s offices and the grocery store. I still wish that he would take off his scraggly attempt at a beard because it ages him. He is eighty-seven years old but looks ten years younger when he is clean shaven. I am twenty-two years younger and aging quickly.

It’s is now time to leave for the research clinic and he asks the usual question, which will be repeated several times during the short trip to the doctor's office. “Where are we going?” I answer and tell him which direction to go and we start out on our adventure.

The research center is behind a large hospital called Boswell Hospital and the guiding landmark is that it has a tall green roof which I think was copper colored at one time. The elements have turned it green like an old penny but it is easy to see once the correct turn is made onto the property housing the building.

Next comes the parking conundrum. Here in Arizona, parking in some spot of shade means the difference between getting a second degree burn when re-entering the car and not getting one. There is little shade at this time of the day so my husband circles the parking lot enough times to cause me to feel sea-sick. Finally I object to the constant spinning around and we reluctantly parks under a wimpy looking ficus tree that emits almost zero shade.

 Once we enter the building it is now time to hurry up and wait.  At last we are called in for the screening visit and we are ushered into a small examining room with two chairs and an exam table. We are met by a nurse who does the usual blood pressure, temperature, respirations routine and asks a couple of mundane questions.

I should mention that one of the symptoms of Alzheimer’s can be silliness. My husband always had a very different sense of humor than mine and he always tends to be a bit silly (I refer to this as his “Three Stooges” routine), but with the onset of the disease all of these humor traits are blown way out of proportion and he is downright silly at times. Sometimes I am embarrassed and that makes me feel guilty. It’s hard to describe, but suffice it to say, if you were there you would also think of “The Three Stooges”  minus the slapping and head hitting.

At last his doctor, Marwan Sabbagh (pronounced Sabbah) comes into the room and does a neurological exam. He tests reflexes and strength to note if there is any sign of weakness that could indicate that a stroke has taken place or some other neurological problem. He makes small talk (but not too much) and I begin to ask a bunch of annoying questions and make some observations to the doctor regarding my husband’s behavior. It’s kind of sad because we are talking to each other as if he weren’t in the room and I’m sure at this early stage of his disease that he must feel like an idiot while we converse in front of him. It can’t be helped because I must let the doctor know what’s going on…good, bad or indifferent.

The doctor administers a cognizance test which consists of several questions like what day it is, what year, what city, what county you live in. Than he gives my husband three simple words to remember, (they are usually the same…apple-tree-table). He will repeat these words in about two minutes to see if my husband can remember them. He seldom does.  Than he has my husband fold a piece of paper and place it on the floor in front of him and than draw a copy of some intertwined boxes (which he always does correctly). I can’t figure out why he can do some of the tasks yet forgets where he lives. The doctor explains that it’s all symptomatic of his disease. I’m still in the dark as this disease is a puzzle not only to me but to the people researching it to a great extent.

My husband usually scores about a nineteen which indicates that he is mildly to moderately impaired.  I am informed by the doctor that some people can’t even score a one.

After the testing is done we discuss his medication levels and I ask (beg) for samples. The medication that he is currently on (Namenda and Excelon) is fairly new and is very costly even with our insurance co pay. The two of them can run over three hundred dollars a month. That’s not even counting the other medication he takes to control his blood pressure and cholesterol. It totals around six hundred dollars a month or more and we live on social security which suffice it to say won’t support a small ant colony let alone two grown human beings who expect to eat at least once a day and have shelter over their heads. He gives me as many samples as he can and I am grateful.

Doctor Sabbagh is brilliant, and kind but he is a busy man having to run this huge center so we only spend about fifteen minutes with him.

The Doctor in charge of the Research Study is Zoran Obradov, an MD from Eastern Europe. He is sweet and caring and has a great sense of humor. You can tell that he really cares about the patients and he makes both my husband and I feel at ease.

He explains the Study and tells us that at the next visit my husband will have blood drawn, get an EKG and go over to the hospital next door for an echo-cardiogram.

It will take most of an entire day and my husband must fast before the blood is drawn (uh oh, I think to myself…more trouble ahead).We fill out what seems like a ream of paper and than we are done.

It is now late afternoon and I am exhausted. I can only imagine how tired my husband is. Actually, I don’t have to imagine for very long because I soon discover that he is grumpy as hell when we get into the boiling car . I can't wait to get home.

We get home, I fix dinner and my husband watches television until it's time for more pills and eventually bedtime. I have noticed as of late that he will watch the same movie over and over again and I finally figured out that he probably isn’t comprehending it the first time so he needs to keep watching to get all of the nuances. It’s sort of like living in the film “Groundhog Day”..

The day is over and tomorrow will bring more challenges than I care to contemplate. The days of the week are no longer just numbers on a calendar...they are adventures into a strange new world.  

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