A Care-Giver's Week: Thursday

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A Care-Giver's Week: Thursday

By Meri Ulrich
July 23, 2007

[Author's Note: The following is an excerpt from a book that I am working on. Just like the life that my husband and I are living ...this is a work in progress.]

Our appointment at the Research Center is for 9:00 am and as usual, there is rushing and stress. I do manage to get my husband to take his medication and get dressed but he is reluctant to shave again and I have to fight that battle before we can leave. He looks awful with a scraggly beard and I believe that it isn't good for his self-esteem to look so awful. I want to preserve at least a part of who he was and looking nice and clean was a big part of that.

It's hot, hot, hot and our air conditioning isn't working in our ten year old car. It is unpleasant to go anywhere, even a short distance. We arrive at the Center and prepare to be grilled.

My husband is taken into a separate part of the building where he will undergo many cognizance tests via computer and other methods (I'm not exactly sure how they do the testing). I am taken down a long hallway and introduced to a nice woman who is a Psychologist.

The Doctor has some forms in front of her and begins to ask me all sorts of questions about my husbands behavior.

Here is an example of the questions:

"During the past three months as he become combative or difficult to manage?"

" During the past three months has his hygiene routine changed?"

"During the past three months have you observed any changes in his ability to do simple chores?"

On and on it goes and it seems as if her list is never-ending. Sadly, I have to answer "Yes" to most of the questions which makes me realize how much things have really changed in our lives. The only positive is that my husband is not at all combative and is even sweeter than he always has been. The disease seems to have made him more social and more loving. I am told that this could change and that if it does, he will be given medication to control his behavior and moods. Thank God I don't have to worry about that as of yet.

After I finish with the Psychologist I am introduced to another lady who doesn't seem to have a specific title and is simply, "A Study person". I have no idea what that means or entails but she too has a million questions for me to answer. I notice that NONE of the questions relate to my role as care-giver and I mention that they should be interested in knowing how the person caring for the Alzheimer's patient is affected and how I can get help in doing the best possible job in caring for him. I get a blank stare and we move on to more questions.

While I am being questioned my husband is going through his own grilling and eventually he is given a break. I ask him what took place and he has no idea. He simply tells me that they asked a lot of questions, had him do some tasks and that he did them perfectly. I have my doubts but since I have no one to ask about how he did I don't comment.

They draw blood from my husband to test for the Alzheimer's Gene and it must be sent out of state to somewhere in New England which is the only lab in the country that does this particular test. If he has the Gene his condition will progress much faster than if he doesn't have it. It will also affect his children so I am hoping that it comes up negative. It will take a month to get the results. The test costs $300.00 and is NOT covered by our supplemental insurance or Medicare so I have to figure out what I am going to cut out of my budget to pay for it. It's important, especially for his children to know the results so it has to be done.

At last the whole thing is finished and after about five hours we meet with Zoran in the conference room. He tells us that Richard did well and that he is definitely only mildly to moderately affected by the disease at this point. He was able to perform many of the tasks normally and those that he failed to complete were in line with the progress of the disease. Needless to say, I have a lot to learn because I am not understanding what all of this means. I realize that I DO NOT understand this disease and that I had better give myself a crash course sooner rather than later.

We leave the Research Center with lots of reading material on Alzheimer's disease and an appointment to return in two weeks so that my husband can have his blood tested again, his vital signs taken and more questions and tests can be performed.

After stopping for a quick (but rather unhealthy fast food dinner) we get home and I relax knowing that tomorrow does not involve the Research Center, Doctors or any medical tests.

What Friday will involve is grocery shopping and that should be a breeze (well, figuratively not literally since we have no breezes here this time of the year that aren't monsoonal and hot).

It will be nice to have a normal day....but wait....there will be no more normal days for us so I need to undergo an attitude adjustment rather quickly or wind up going nuts!!

I spend several hours reading the material that we brought home from the Center and when I am finished I am absolutely terrified of what the future holds. I am having huge doubts about whether I can handle my role as care-giver and I am frightened and saddened for my husband because of the transformation he will eventually go through.

I wonder in my mind if in a year, I will recognize him as the man I have known for 36 years and I am worried that he won't recognize me at all. This is not an impossibility and my heart sinks.

I never thought that I would get so much pleasure in making my grocery list, at least it represents something normal and familiar. Friday should be a good day despite the heat.

Information: (This is the Study that my husband participated in)

Diabetes drug: Avandia

Rosiglitazone, brand name Avandia (made by GlaxoSmithKline) is already approved for treatment of type 2 diabetes (but not for Alzheimer's). It lowers blood sugar by helping cells use insulin more effectively.

Scientists have speculated that Avandia may also be able to help Alzheimer's patients because of its effect on brain inflammation and other processes associated with neurodegenerative diseases.

However, in recent months, Avandia has been in the spotlight because a recent study that reviewed the available published research suggested that diabetes patients on Avandia were at increased risk of heart attack and death from cardiovascular causes.

Researchers studied the effect of an extended release form of Avandia (Rosiglitazone XR) on Alzheimer's patients for 12 months. This was a follow up open lable extension to a randomized controlled trial.

The results suggested that Avandia may help some Alzheimer's patients depending on their genetic make up. Patients that were "APOE e4 negative" did benefit from the treatment, they showed some improvement. But patients who were "APOE e4 positive" either did not improve or continued to decline.

The key points of the study were:

337 patients with mild to moderate Alzheimer's enrolled in the study and 82 per cent of them completed it.
7 per cent pulled out because of adverse events.
48 per cent had one or more adverse events (mostly peripheral oedema, or fluid accumulation, in the legs or sacral region, nasopharyngitis or inflammation of the nasal passages and pharynx).
9 per cent had one or more severe adverse events, each of which occurred in 1 per cent or less of the patients (except for fractures, 2 per cent).
Few patients had clinically significant changes in heart rate (less than 1 per cent) or abnormal ECG readings (2 per cent).
Insulin and glycemic control measures were within the range expected for older people with low insulin resistance.

Although there is controversy surrounding the use of Avandia as a type 2 diabetes drug because of the link with elevated heart problem risks, these risks could be outweighed by the potential benefits when considering the benefit-risk profile of person with Alzheimer's.

Global Clinical Vice President, Neurology, at GlaxoSmithKline, Dr Michael Gold said that Avandia appeared to have a safety profile similar to that already seen in diabetes type 2 patients. He added that:

"Rosiglitazone XR (Avandia) appeared to be generally well tolerated in subjects with Alzheimer's for up to 72 weeks."

This said: "There is value in continuing to study rosiglitazone in Alzheimer's. We need to attack the disease through multiple mechanisms, and the only way we can learn with certainty about issues of safety and efficacy in Alzheimer's is through clinical trials."

"There are risks involved in clinical studies, and we do need to ensure that all risks are thoroughly described and explained to study participants and family members. That's why we have informed consent, and why the process is so important," he added.

Click here for the Alzheimer's Association (US).

Click here for more articles on Alzheimer's research (Medical News Today).

Since my series is a condensed version of the entire Study time frame I will report on my husband's progress in my last article.

I encourage everyone to follow the above links because knowledge of this wide spread disease is essential to all of us and eventually, we will know someone with the disease or become victims of it ourselves. A cure is in the works but it will be several years before it is clinically ready to administer to the public.

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About the author: Meri has a Medical/Legal background and is a former forensic researcher specializing in psychological profiling.

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Email: writers2@cox.net

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