Friday, July 30, 2010

Can't make a silk purse out of a sow's ear.....

That's what WB would say.

On Medications:

I am 48 years old and do not have to take any medications daily, but WB has been taking daily meds for sometime now, over 25 years I am sure.

We have a routine with the medicines and early on I was warned...."whatever you do, don't let up on the Alzheimer's medications".  The medication(s) he takes for the Alzheimer's does not cure, they slow the progression and hopefully ease the symptoms. It was explained to me that "a week without these" and WB could very well digress to where he would be should he never have had the medications in the first place. I do not know if this is fact, but I am damn sure not up for testing it.

We treat the AD and we treat the blood pressure and we treat the depression and we treat the anxiety and we treat the irregularity and now we treat the personalty. For several years, pieces of his brain were lost to plaques and tangles and now those pieces have turned to chunks. Those lost chunks are changing his personality.

Seroquel or Quetiapine tablets and extended-release (long-acting) tablets are used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions). Quetiapine tablets and extended-release tablets are also used alone or with other medications to treat or prevent episodes of mania (frenzied, abnormally excited or irritated mood) or depression in patients with bipolar disorder (manic depressive disorder; a disease that causes episodes of depression, episodes of mania, and other abnormal moods). Quetiapine extended-release tablets are also used along with other medications to treat depression. Quetiapine tablets may be used as part of a treatment program to treat bipolar disorder and schizophrenia in children. Quetiapine is in a class of medications called atypical antipsychotics. It works by changing the activity of certain natural substances in the brain.

Dr. Counce explained that its like Haldol in pill form. It was the 60 milligrams of Haldol that it took to calm him in the ER last week.

We came home with the prescriptions Friday and by Monday, I had backed off half the dose at night. It was like the wildest kind of wild. All of WB's residual symptoms were magnified: obsession, dreaming, restlessness, cravings, anxiety. The Seroquel also causes him severe heartburn and in the past couple of years, any ache or pain, scratch or pimple wears him out. He will gnaw and pick at it until it's a full blown problem. I have to look at whatever it is many times a day. Smell it, touch it, get the magnifying glass out, pinch it, rub it...over and over again. So him having chronic heartburn is intolerable ~ for both of us.

When WB woke early yesterday morning with a new plan to drive, I added the extra Seroquel back into the regimen last night. 

Today, I can honestly report that we are having a pretty good day. Yesterday, not so much.... But hey, we used to take it one day at a time, now we take it in increments. Its 4:00 pm and it has been a pretty good day, all day. He slept until his normal time this morning, he's puttering around in the garage and has been occupied for over 2 hours. 


Dr. Counce said it would require tweaking and she was spot on again. She's given me permission to work with it and that's all I need to know.

Here's the rock along for awhile with things like they are and we get what I call a "dip". Then we all make adjustments. The doctors, the family, the medications, WB. We recover, readjust and rock along and then out of nowhere, another "dip" and the process repeats itself. We never know when the dip is coming, how long it will last or how severe it will be. We have no understanding if the next dip can be treated and nobody can tell us as each and every AD patient is different.

I think it must be like getting hit with a taser gun. Its real tough on the front and then takes time to recover from the initial hit. Though oftentimes before the recovery happens we're getting stunned again.

On Asking for Help:

I have always known that there are givers and there are receivers. You have got to have givers to handle the receivers and without the receivers, the givers would just blow up. WB and I separately were givers and then after we married we never let up. To charities, to homeless, to immigrants, to churches and to children on the social side and then mentoring others in business, counseling and volunteer work. He never begrudged my giving and I never got in the way of his pet projects. 

Then, the apple didn't fall too far away from the tree with Kate. She got the giving thing ~ squared.

We are not "receivers". 

So many have asked, "what can I do?" And I honestly cannot think of how to express a need. Not only do I not know how to ask for help, I do not know what kind of help I would ask for.  Somehow, some way we've managed to get this far without too much incident (although Brantley Homes creditors may not agree).  Even though life threw us a curve ball and I am not living life as planned, it's still life. The good, the bad and the ugly.

My ideal day would be to go to work, help provide for my family, come home with dinner or something to cook, visit with family and entertain friends as often as possible, keep a tidy home, get my toes done once a month, make sure baby girl has what she needs, have the means to buy good underwear. You know, the basics.

And those basics have slowly become harder and harder to realize. If I won the lottery tomorrow, it wouldn't change the fact that my wish list of life's basic needs are out of reach for an indefinite measure of time. I miss the workplace environment, I miss socializing at the beauty shop, I miss hanging out with friends and the planning and preparing of great meals and entertaining, I miss wandering around special places with Kate and I really miss my husband. 

All of that made me feel whole. But you just can't make all that happen when you throw in a 250 pound Alzheimer's patient.

Was it Mother Teresa who said "God won't give me more than I can handle?" That comment came out of my mouth today and then it struck me, this cannot be God's work. Maybe this is Karma, maybe this is Satan, maybe this is a practical joke but my God would have no hand in this. 

It doesn't take me long after having a "woe is me" moment to realize how horrified I am at what must be going on inside WB's head. Even though this is the best day we've had in awhile and even though tomorrow could be a disaster, I don't have Alzheimer's Dementia.

On receiving help:

Gone way around the bend with this post to say that I have decided to RECEIVE guests...lots and lots of company. All day, any day, anyway.  And, since WB's got the AD, he won't remember! We received company Wednesday night and it was fun AND delicious. Matter of fact, he has a special visitor coming next week. It was decided this morning and he will have forgotten by this afternoon, so I will wait until the night before to tell him. Our good friend Gary Brantley and his "girl of the month" will be coming in next Friday to stay the weekend. (her name is Pam and I really like her) I just learned that our neighbors are coming over later and it looks like we may be ordering pizza. We will not disclose any of this ahead of time so there will be no let-downs for WB if it doesn't happen and a surprise for him when it does.

On friendship:

WHOA at the outpouring of love, prayer, support and kind words. Over the top and has been absolutely the one thing that keeps me moving. I get it. If I am broken, I cannot take care of him. There were over 50 unique hits to the blog yesterday. With that much support and interest, I will continue to write. 

On practicing what you preach:

Pick yourself up, dust yourself off, move forward.....pick yourself up, dust yourself off, move forward....pick yourself up, dust yourself off, move forward. I've said it a thousand times to a thousand people. 

Now more than ever, I must practice what I preach.


  1. DANG YOU'RE GOOD ! Keep this in some form or fashion Rhonda and PUBLISH it later !
    Go ahead and start thinking of catchy titles for your book about this journey that will no doubt be food for the soul of others truckin along in your Ropers ! xxxooo Debbie

  2. Thanks girl. Trying to stay focused. Love you!


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