Still mesmerized.....

Houston, we may have a problem....

Newsflash: I finally killed a fish.

Yep, casualty number 1.

It was a newly purchased Plecostomus (algae eater). Although I am now convinced it wasn't anything we did, perhaps it was simply because there was not enough algae in the tank already. Nonetheless, he has been scooped out, bagged and is sitting in the freezer awaiting his return to Petco as they honor a 30 day guarantee. Kate tried to convince me to move him to the outside freezer to keep Michelle from screaming out loud when she went to get ice last night, but hey ~ what's not to like about a little excitement every now and again.

The 36 gallon aquarium is an absolute hit. When visiting Dr. Counce last week, I suggested to her that she mention this to other families of Alzheimer patients. It soothes WB in the most positive way as it puts him to sleep, puts him back to sleep and so far has kept him from wandering at night. Providing just enough noise, a little water noise and now Moze, the rescue cat, is keeping him company. They are mesmerized buddies.

Back to last week's appointment, Dr. Counce has raised the Seroquel to another 5 milligrams twice per day. And, after mentioning my concerns with the high levels of zinc over many years, ordered a heavy metals test for both urine and blood. This is not a hard test, just a capturing of urine at home for 24 hours (on ice) and delivering the following morning to take blood. The instructions said refrigerate so I stored in the water closet in a styrofoam cooler. 

Amy came for her visit Monday morning and volunteered to deliver the specimen and have his blood drawn at the lab. They lunched at the famous Fran's in Pelham where they are always excited to see WB. So the story goes, Mayor Murphy recommended that Bill come to walk the tract at the Pelham Park a couple of times a week ~ NOT. Amy had to remind everybody that the only way to get Bill into a fast walk would be to chase him with a gun.

What he does not know and will find out soon enough, is that when the cold weather breaks, he will be walking with me. May have to up the Seroquel again, as he will be convinced it is punishment.

If you are wondering about Seroquel dosage, WB still takes less than most people we have talked to that have this as part of their prescription routine. I asked Dr. Counce about newAlzheimer's meds and she has me convinced that he is getting the best there is (Namenda and Excelon) and advised that she felt they were continuing the lesson the sharp declines.

Dermatologist test results came back as well and we will be taking WB for surgery on his face next Tuesday morning. Only under local anesthesia, but they have still advised a long day at their office.

Do not have pictures to post from WB's outing on Saturday with Wade, Aiden, Austin and Bill Strickland to the boat show, but he had a fabulous time and was worn out when he returned. An avid freshwater angler, bass club member and boat owner, I was convinced there may be repercussions ~ but none so far. 

And, as discouraged as he has been about not hunting this year, he finally relented, "You know, this has been the only year I can ever remember not hunting. But I just don't think I feel up to it". His way of admitting it or his way of excusing it remains a mystery. Hunter's 8-pt took care of the venison for the freezer and we will look at the pics from the camera at the backyard deer feeder this weekend.

Susie sent WB's birthday present early and Michelle will be taking him out today to find a few glo-fish in neon green.

Will keep all posted on the heavy metals test and the cancer surgery while trying to keep Moze out of the fish tank.

JustBrantley

My name is Rhonda Brantley and my husband, Billy Ray Brantley suffers from Early Onset Alzheimer's Dementia. This is the best shot we have at documenting daily living.

Poligrip and Fixodent Linked to Alzheimer's

When poking around about early onset Alzheimer's Dementia, I was reminded about something I read some three years ago. It wasn't until today that we learned that both Poligrip and Fixodent had high levels of Zinc which penetrated the soft tissue of the gum, leading to all sorts of unexplained health issues including neuropathy, tingling in hands and feet, weakness in lower extremities, misdiagnosed MS, MD, Parkinson's Disease and a host of other life threatening ailments.

Well now, WB has worn dentures since he was in his twenties that required the above to keep them in place. Symptoms of neuropathy are weakness in the lower extremities and problems with ankle pain (he's had ankle reconstruction) problems with numbness, tingling and pain in the arms (he's had nerve blocks and complains daily with this) decline in motor function (check), confusion (check), abnoral high blood pressure (check, check, check) allergies (check) masked Alzheimer's and Parkinson's?

WHOA. Could all of these symptoms for the past 30 plus years been in relationship to Zinc poisoning from using teeth glue in mass quantity for years and years and years?

On February 18, 2010 Glaxo Smith Kline announced that it plans to stop selling a number of Poligrip denture cream products and also plans to remove the ingredient Zinc from its existing denture cream product line. The announcement was reported by the Associated Press amid a growing number of lawsuits claiming that Zinc caused neurological damage and blood problems in denture cream users.

I intend to investigate this more and report my findings AFTER I contact our attorney about the lawsuits being filed against Glaxo Smith Kline and Proctor and Gamble. If you have any questions beforehand, let me know. Would be glad to share the info.

From an excerpt in WebMd:

“Zinc had previously been shown to contribute to the formation of plaques in the brains of patients with Alzheimer’s disease, so it was logical for us to test the idea that zinc might also contribute to the formation of plaque-like drusen in the eye as well. AMD can be considered as the Alzheimer’s disease of the eye, in that both involve the build-up of proteins and metals like zinc and copper into microscopic clumps.

Daily living.....

Insomuch as I try not repeat myself, it still seems important to recant the obvious when moving forward, especially for newcomers to the blog.

That said, WB and I share 7 children and 12 grandchildren (the grandies). He had four, I had one, we had one and then took one from someone else (who did not deserve her and she deserved a better life). In my opinion, all kids deserve good parenting and support as it is the basis for the rest of their lives. Heck, we may not have been model parents, but it certainly wasn't for the lack of trying.

All but two live in the general vicinity of the homestead here in the Birmingham metro area. Baby Kate is in college at the University of Alabama, which is only about 45 miles from here.  She rearranges her class schedule to allow commutes for long weekends so it is almost as if she is still at home.

WB with Michelle and Kate

Michelle (the one we absconded with) still lives at home. She is an extreme help to me and at this point in time have no idea what we would do without her. She was actually in the home before Kate arrived. I believe we rescued her and now she is rescuing us.

WB with Amy

Wade and Amy both live very close and still work in and around the construction related industry. We see Amy at least once a week on her off day and it is a huge day for us all. Typically, they will go on a ride-about, run errands or do whatever it takes to get him out of the house for the day. I get him up, showered, dressed, fed, medicated and ready. Can not even explain what just a few hours alone in the house is like ~

WB with Wade and wife Angela

Wade is on-call. Wade is the son who gets the call when the wheels fall off the bus. Regardless of the time, day or night, he gets the call. May not amount to anything, but I see the day coming when the calls for help may be going out more often. (sorry Wade) If I cannot lift it, tote it, screw it in or reach it, I call Wade. He is the closest to us logistically and can probably manhandle WB about as good as I can.

Susie with her two of her four, Maddie and Dalton

Susie, WB's oldest, lives in Boston with her family and travels to Birmingham very often to spend long weekends here. Just this past weekend she was here, got really sick and then snowed in. It is a miracle she made it home as bad weather is heading east. She will be back with granddaughter Meghan around February 21st and we will look forward to it.

Then, there is Brandon ~

I have not spoken of him much in the 'daily living' archives because he is not a part of it. He is WB's youngest and only child from a second marriage that ended badly. To say there was strife for the past 19 years with him would be an understatement. For many years we patched it up only to see it fall to pieces again. At this time I forbid him any interaction with his father.

Cruel? Perhaps. But not nearly as cruel as the fallout afterward. For years I have witnessed how manipulative and engaging he can be as we open ourselves up. Looking back on the situation, I consider Brandon a source of tremendous stress for WB which only exacerbates dementia. It absolutely has played a role in the dynamic with the other children and about 18 months ago I put an end to it all. If and when he ever gets it together will be the day that it is too late to spend any quality time with WB. The decision has been made and I will not overturn it.

Mike and his wife, Joni

My first, Mike, moved to Texas and briefly attended Schreiner University. Born and raised there, I left Texas in a huff. Abandoning family, friends and an ex-husband with a new wife, Mike spent summers there with his Dad and loves it. After marrying a Hill Country girl, they settled in Kerrville  and are raising three sons. We do not see them much at all and it breaks my heart. Normally, they travel here in the summer for a few days and we go west at the Christmas break.

Me, Mike and Kate

This year, we took a longer break. UA allows nearly a month off and there certainly was not anything keeping us from it. If we overstayed our welcome, nobody mentioned it. It was craziness but they were very patient with it all. We are all convinced that WB may never be able to take that trip again. As much as he loves it, it simply disrupts the routine and the routine is what keeps me from stabbing myself in the neck with an ice pick.

I am so blessed to have the kids rallying around the 'big elephant in the room'.  That is 6 grown children to share the antics with, to vent with, to commiserate with, to be scared with. Once again, unless you spend time with him, its hard to grasp how this evolves. 

WB's speech is increasingly more affected, his gait is off and therefore he stumbles often and has to be helped through uneven sidewalks or stairs. I noticed the feet shuffling was progressing while on this last trip. Then, while out of town, there were two instances where he simply could not find the bathroom, resulting in accidents. He questions us continually on the same things and now insists that the girls come and get me, as if the answer from them is not accurate. He is sleeping less at night and I suspect sundowning is upon us. He is constantly looking for something, even if we have shown him where it is. He can no longer work the remote control, telephone or prepare himself a meal. We cut his meat and will soon be peeling his apples. Setting his clothes out and preparing everything for his shower are things I did not have to do just a year ago. Of course there is no driving even though he firmly believes everyday that he is getting better.

WB has gained 10 pounds in the last 6 months. He is constantly hungry and I am sure it is because the AD is playing tricks on him. Just this morning he had a bowl of cereal (and I have to put it up to keep him from double dipping) and an apple with peanut butter. In less than two hours he was asking, "what we got to eat around here?" Just as I am convinced that reducing his weight by 10 pounds will make him more mobile, help with the incontinence, reverse the diabetes, make him feel better ~ he is convinced I am starving him.

On our last appointment with Dr. Lee, he suggested that I get out more. He simply does not realize the stress this creates on the caretaker who stays behind and the wrath that ensues upon my return. It is hard not to argue with Bill, as he can stir up a pot in 5 seconds flat, but you learn through trial and error. Generally, my replies are "ok, lets just not talk about this any longer as it upsets you and then me and its just not worth it ~ I love you and you love me, so let's just drop it" followed by an extra dose of medicine.

We have doctor appointments lined up again for the next couple of weeks (didn't we just do this?)

The urologist because his PSA is high. The eye-doctor as he is seeing a dark spot and I fear it is a cataract. The dermatologist because the place on his face will not  heal. The neurologist for an adjustment in AD meds. I need a mammogram in the worst way so perhaps we will get that in the schedule before March. If my appointments do not coincide with his, I usually just defer and he isn't scheduled for a 'tit squeeze' any time soon.

One may ask if its all worth it. If in the end prostate or skin cancer would not do him in before the Alzheimer's, should we worry? Well, we know there will never be any surgeries because he cannot tolerate the general anesthesia and we will treat his ailments as if AD never came up. Not to mention that he will worry me relentlessly until I get him to the doctor ~ which is also textbook Alzheimer's. 

These patients will pick at something and worry over the smallest of things like digging in his ear, taking the new razor apart 10 times a day, asking us how the officials came up with the score on the football game, telling me its Wednesday when its Sunday because he's forgotten about the chalkboard in the kitchen. 

I suppose at this stage of the game it is the constant 'asking' that is so exhausting.

We are still committed to keeping him at home as long as we can. I am not Nancy Reagan, nor do I have the luxury of her resources, but know now why she did it. She had complete control over the level of care her Ronnie got, which is most likely why he lived for 10 years after diagnosis and they know now his mental faculties were challenged probably up to 10 years prior. WB will be 65 next month, he was diagnosed in October 2007 which equates to a little over 3 years post diagnosis.  Most of us agree that he has been struggling since at least 1997 following several colon surgeries and an ankle reconstruction.

WB will have to completely not know me before I would ever consider another regimen.

And the caregiver job? Thanks to reading less about the disease and more about caregiver issues, we find more and more how the stories mirror one another ~ just that the length of time with Alzheimer's in generally longer as the patient lives longer. I have a cousin who has cared for her disabled daughter for 20 years and have more adoration for her today than ever.

So, that is the update on WB and the AD. Hopefully, the postings will be light and airy for awhile as we share pictures and events. I have started a cause on facebook to benefit the Alzheimer's Association of Central Alabama and only because they need all the help they can get, primarily something geared toward young children and young adult children of patients. If the boomer population produces more and more early onset dementia cases, then there will surely be a need.

I love WB more today than ever. And, even though I am his constant person, I miss him in the worst kind of way. He would surely think this whole ordeal is 'one hot mess'.

Just Brantley

James 1:3

Be assured and understand that the trial and proving of your faith bring out endurance and steadfastness and patience. 

I have so much to write about and simply cannot find the time to get caught up. Bill's mother passed away October 13th, we have just come off a trip to visit his sister in Brunswick and there is tons to write about on the Alzheimer's front.   

We are officially at the halfway mark in the UAB clinical trial on a new and upcoming Alzheimer's medication. WB was on hold since August as the last MRI was what alerted us to a sub-acute stroke. After much conversation, it was decided that he could continue with the trial, just without the infusions.

It goes something like this:

MRI, blood work (labs) and cognitive testing. Then, 6-7 weeks later, an infusion of either BAPPI or the placebo. The MRI is in place to test for brain swelling or side affects of the infusion. It is an 18 month trial and I felt sure that we had been fired.

Several weeks ago, the medical monitor allowed WB to continue with the study without the infusions until at least a reading of another MRI. We spent several hours last week in testing, both he and I. To be included in the trial, he must have a trial partner and it has to be the same person throughout. 

His MRI was scheduled for today along with another MMSE. His last MMSE score was 13/30.

It was not a good day and I have myself to blame for most of it.

First, I foolishly made his appointment for 9:00 am. That is entirely too early for WB to get up, shower, have coffee, breakfast, dress, etc. and get in the car by 8:00. It takes us an hour to get there, park and get into their offices. We have learned, it is best to let him wake on his own.

Bill is broad shouldered and weights 254 pounds. The imaging machine they use for the study is not over-sized or open and has always been tight for him. Once before, I had slipped him a Xanax before we left the house to get him relaxed as he has had some anxiety in the past. I was scolded for this so this morning, I did not administer "mother's little helper".

Rain, rain and more rain. Parking was a challenge but we made it in without incident. Same place, same tech, same everything. Except today, he would not go in. One hour and a half later, Elvis left the building. Even after several attempts to make it better, after they had set me up with a chair beside the machine to hold his hand, after starting music, then a movie....it was simply not to be. He told me later that it really scared him and he would just rather not go back. 

I believe he understands that this will most likely eliminate him from the trial. A trial that may have given him a chance at this medicine 3-5 years before it ever makes it to market. But, that could still be 12-14 months away from today. I am no longer confident that there would be any medicine available in that time frame that could reverse the damage.

From there we made a stop for a bill of groceries. We're having an Italian Feast this weekend with all the kids and grandies. It is only recently that Bill accompanies me to the store. He pushes the buggy and I usually park him at the end of an isle while I gather and then meet back up with him, then we move to the next isle. He and the buggy in the middle of the isle causes a lot of frustration for him, for me and for all the other shoppers. This just works best. However today, he would not stay at the end. If I got too far down the isle and he couldn't see me, he just struck off looking for me. Fear. 

It was easy to detect on a short trip this weekend the shortening of his short-term memory. 

Remarkably, my patience is at a place I never thought it would be. WB must have asked me every 15-20 miles on a 1250 mile trek what road we were on. I just answered. We intentionally left his cell phone at home so each and every time mine rang, he would ask, "where is my phone?" I just answered. These were not the only questions repeated.

Where is my wallet?

Have I eaten today?

Is Katie Doll going to be home when we get there?

Is Dalson still in the back seat?

How are we doing on gas?

He has no idea he's repeating, so I just answer. I no longer say, "Remember........". I just answer.

We are three years post diagnosis. We have survived the anger, the guilt, the psychosis, the depression and now we must survive the fear.

After relaying these events today with #1 son, I am reminded how thankful I am to have so many of us working in a concerted effort and in the same direction with the same goals. 

One doctor says no sugar, another says adult day care, one says therapy, one says a sleep study, one friend says get him out more, another says I should get out more. It is nice to have all of this direction, but in the end we will do what works best for WB.

Yes, I will try and cut back on the refined sugar. There is no-sugar added Blue Bell in the freezer. We will continue to travel him as long as he's willing and will open our home to as many and as often as it presents. But therapy may be off the table. 

At some point we must forgive ourselves and quit trying so hard to fix him. By we, I must mean me. I am the fixer, I can fix anything. 

Most telling now is that his new amiable personalty is pleasant with a sweet spirit. We laugh out loud more today than I ever remember. He is needy. He is kind. He is scared. 

Please be reminded, these excerpts are in no way intended to make a mockery of  a very serious illness. We, as a family, never really knew what Alzheimer's Dementia looked like. My posts are to inform and share and it gives me great relief. I get to say it once here and we will always have something to look back on. 

Not only is his life changing, but ours is as well. Things we thought were once  important are now not worth a tinker's damn. Things we took for granted are now more precious than ever. He found a family who loves him and I have found something I never knew I had......patience.

Just Brantley

Know the 10 Signs of Alzheimer's

10 Signs of Alzheimer's Disease

Crazy Relieved....

Inlet Beach, Florida

I have been skirting around this for several days. To write or not to write. Perhaps it took some time to process. Any other time I would post as to not forget what I wanted to post about. 

It seems WB is having strokes. Subacute (less than acute) strokes, deep in the white matter....

That was the news Monday after the occupational therapist also confirmed what we had already noticed. WB was slurring his words and it does come and go. So, Monday's schedule included another trip to Shelby Baptist.

WB Loves Refrigerator Pickles

I was born at night, but not last night.  May be a little slow on the uptake, and it did take me awhile to figure it out, but now I know without a doubt that if our routine goes sideways, we're in a pickle.

The Alzheimer's has created a routine monster out of me and that fits right in with the consistency necessary to keep things from totally getting off into the ditch. Same, same, same...over and over again. It may seem mundane, but I've learned the hard way, consistency is KING. I can nearly tie his episodes to veering off the path. Whether it was all of us being away from the house for several days and staying in a new place, Kate or I being away from the house for more than several hours at a time,  satellite dish not having a signal or particular telephone calls. Things like that.

WB wears the same thing every day. A pair of Wrangler blue jean carpenter shorts and a Guy Harvey T-Shirt. This was his daily summertime uniform when he worked and until just recently clogged around in a pair of flip-flops. Easy on, easy off. The only change to that has been the introduction last Fall of the camouflage green rubber Crocs and the newer pair of Crocs he received on Father's Day. The new shoe detail came about when he began to shuffle his feet. Shuffling and flip-flops were causing problems for him as sometimes he would just shuffle right out of them and right onto the floor. 

He also has two pair of prescription glasses and I have installed straps on both pairs. Some days he has me looking for glasses and he's got a pair on his head and the other pair around his neck. 

Then there is his wallet, his nose spray and the new $9.99 Timex digital watch with a velcro strap. Just recently he began having difficulty telling the time so I switched them out in the middle of the night after a late night jaunt to the Walmart. My excuse was that he could get this one wet and he accepted that. 

Oh, and he makes our bed every morning. Watches news shows after breakfast and medicine until mid-morning nap. Then lunch, another nap, then hunting and fishing shows in the afternoons. 

On a good day, that is his agenda.

However, there are certain things that will throw him off. We cannot run out of Blueberry Pop Tarts, or diet cola, we do not run out of Equate brand nose spray, mouth wash or denture cleaner and never ever run out of Aunt Dell's refrigerator pickles. On the pickle front, I have failed miserably.

Many of our friends have had them and they have become a staple for gifts. Jars do leave here and I find them in the refrigerators of many. 

The process of gathering the recipe and ingredients over the last week has WB antsy as there has been too much to tend to lately, the pickles have not been a priority for me, but we are completely OUT!

Like all families, great recipes are handed down through the generations. The 'Aunts' (My Gran and her sisters, Jean, Dell and Ella Rae) were all fabulous cooks. Aunt Jean was always on the ready to share her recipes, but those who know her witnessed her joy at always leaving out at least one ingredient. My favorite recipe of her's was the Pimento Cheese. My Gran could whip up any kind of cake, cookie or pie without a recipe.  Aunt Ella Rae made the best Divinity in the land, Aunt Dell's chicken enchiladas and white chocolate fudge have traveled all the way from central Texas and are now a part of many Alabama recipe boxes.

That said, I think its time to share Aunt Dell's pickle recipe. Actually, I have modified it as I double up the original recipe. When making, you might as well make plenty as they will store in the refrigerator forever. They perfectly compliment a turkey and mayonnaise sandwich on wheat.  But, WB just eats them straight out of the jar with everything.

Candied Dill Pickles - I double this recipe which quadruples Aunt Dell's original

2 gallons Kosher Dills (you can find these at Walmart for under $3 each)

8.5 pounds of sugar (that's a 5 lb bag and a half)

2 pts Apple Cider Vinegar

1 Bottle Pickling Spice

10 Cloves of Garlic

Slice the pickles (and I slice them thick) and add all ingredients into a large covered container. Let sit at room temperature for 5 days. Stir twice a day. Then, put in jars and refrigerate. 

If you want to store in the large jars the Kosher dills came in, that's fine. I generally put them into Ball jars with lids and store in the fridge downstairs. 

In five days, WB will be in pickle heaven. He will be happy to have them and I will be happy he's happy.

My name is Rhonda Brantley. My husband, Billy Ray Brantley has Early Onset Alzheimer's Dementia.

189 Unique Hits in 10 Days......

 

Absolutely incredible.

I have been blogging on and off for the last several years and only recently became serious about it. Back in 2007 when WB was officially diagnosed, Dr. Lee suggested that I write for therapy. Then, appointment after appointment, I would visit the doctors with lists of questions and ideas from the searches I made online and elsewhere. In true Rhonda Brantley fashion, I studied this to a fault, needing to know why, how and when. With AD and specifically Early Onset, there just wasn't enough unique information to satisfy me.

One of my chief complaints to Dr. Lee on a particular visit was the depression and helplessness I felt when trying to explain to our vast group of friends and family the condition, symptoms, etc. and the mechanics of sharing it over and over and over again. "Write", he said. "Do it for you, do it for WB, do it for others."

You can look at my trusty visor, all crumpled up and distorted, to see that I hit a brick wall several weeks ago. Not ungrateful, but overwhelmed at the sheer number of calls from well-wishers with suggestions and ideas on what I should do. This is what I could do for WB, this is how I should handle it for myself, that is how we must do it for Kate, the kids, etc.  Overwhelming concern turned into a very large suggestion box. Since so few really know and understand the true fall-out for the affected and not knowing from me specifically and regularly what was going on had opened up the door for hundreds of drugstore antidotes.

Again, grateful and humbled for the support and concern, but the scope and breadth made it hard for me to get my arms around. I walked around for days just manhandling WB and the new medications like a ship wandering aimlessly in the night. Solace came late at night after finally getting him down and I began to type. 

SHUT UP! It was a cathartic moment. Rising from the computer, I left those bottled up emotions for my trusty Mac Desktop to process and I walked away.

Unfortunately, I am not a product of higher education and my writing skills are rough at best. But when I quit the search for proper sentence structure and word usage, I found my voice. Then, after searching for other blogs on the suffrage of ordinary people and their day-to-day struggles living with Alzheimer's Dementia for some kind of checks and balances, I came up empty. Stumbling upon this niche was purely accidental and now I feel a responsibility to myself and others to keep this blog active and updated.

Yes, we can find article upon article about the stages of AD; the symptoms, the signs, the treatment. Ultimately, I and others in this situation just need to know if these unique experiences are really unique, common, textbook, etc. Remember, each and every AD patient is different. Sometimes I could just appreciate someone telling me, "Hey you, this is how its going to happen". 

Some may say getting into a support group is the answer. HUMMMMM, not so much....yet (for me). Perhaps soon, perhaps when the psyche comes, perhaps when things slow down a bit. I needed instant relief and found it on the keyboard. 

I found people (or people found me) who are in the same place. I wake early with dread, but am now able to release several levels of personal anxiety while sharing with others. A mix of our life, our struggles, specific articles found on the subject matter, pictures, music, joyful moments  ~ 

After I started WB's blog about Alzheimer's, I quit writing on my personal blog and directed all traffic here. When my own life pursuits were put on indefinite hold, so did that portal.  Someday soon, I hope to export those articles here in archives. But for now, its AD and after AD.

As an active advocate for many causes, this specific shoe fits very well today. I must find those who are tired and exhausted, overwhelmed and anxious, fearful and apprehensive, angry and resentful. Help me find others going through the caregiver experience or who suspect the genetics of dementia. From just a few random comments and emails there is no doubt a need for confirmation on the trials and tribulations of daily living and coping mechanisms.

Even though chosen topics are peppered with personal flair, readers have already provided great subject matter for me to ponder. Taking lessons from others on Search Engine Optimization,  Social Media, Blogging, HTML manipulation, etc. justifies my excitement. Unique hits are just that. People came to visit at least once. I push through facebook and have over 700 friends, but that alone cannot justify the recent number of hits on the gory details of Alzheimer's Dementia. 

Somebody is spreading this word. Thanks friends. Please keep sharing.

~ RB

What is time to a hog?

WB & KB getting some couch time

Another one of WB's famous sayings is coming back to slap us right in the face. Am skipping around my intended post schedule to report a new condition ~ as of today, WB can no longer tell the time on his watch.

Well, there you go. You can see by the picture above, taken today. Looks normal, smells normal, looks healthy, physically strong ~ cognition is spun out, kaput.

After breakfast, he normally putters around for a couple of hours before his shower, watching the news channels and he ALWAYS makes our bed. Lately, less of the decorative accouterments are ending up there and I am surely not complaining about that.

He visits me in the office in 15-30 minute increments. The door is always open and I can hear him all the way into the back of the house, can hear all doors opening and closing, can hear him rattling around in the kitchen. I keep a chair beside me for him to sit in when he visits. He'll ask me what I'm working on or who I'm working on, ask about his medicines, comment about the weather, question me about dates or events, comment about a news article, give me a list of things to do, ask for clarification, etc.

This morning, he sat and waited patiently for me to finish a segment of design. When I turned to him it was obvious he had been crying. He asked me to look at his watch and tell him what time it was. I have to admit, it took me by surprise. Even though he typically asks me numerous times per day the time, after reminding him to look at the clock, he normally reads it. Today, he could not read his watch.

"It is 9:45" I say. 

"9:45 in the morning?"

"Yes, honey. Its 9:45 in the morning."

The look on his face absolutely broke my heart. I read his tangled mind. 

He rose, told me he was tired and was going for nap. 

I gave it a few minutes and went in to check on him. He was laying across the bed on top of the duvet quietly. Kissing him on top of the head I told him that by the weekend, we would have him a watch with numbers. 

"Anyway", I say, "what's time to a hog?" 

We try and find humor in EVERYTHING and today that same humor let him off the hook. It was over, he took his nap and by lunchtime, all was forgotten. One glitch, the watch is still on his wrist. I will be making a run to the Walmart late tonight to find a replacement.

We really have taken a big dip in the past couple of weeks. Our appointment with Dr. Counce, his neurologist, is tomorrow and I have a list of questions for her. I suspect we will be raising the depression meds post haste. His last mini mental exam was 15 out of 30. She may not perform one tomorrow, as next Wednesday we are picking up on the clinical trial at UAB and he is scheduled for another MRI and mini mental exam then.

We are looking for Susie, Maddie and Dalt this afternoon and will be cooking out and spending time with them before they take a flight out tomorrow. 

WB is pretty pumped about our road trip on Saturday up the 127 Corridor Yard Sale and is very content this very moment sitting on sofa with Katie Bug. We move her into the dorm next Friday and am hoping those new meds have kicked in by then. The entire family has fingers and toes crossed as we find ourselves hoping for the best and  expecting the worst. 

 KB's new home....temporarily.

More on the cook-out later....

No, WB is Not Helpless.......

CRS disease. Can't Remember Shit. That's what we started telling WB about 10 years ago. Just thought there was too much on his mind, too much going on, too many obligations, a house full of kids. We're all in agreement that this may have started back about 9-10 years ago.

Just as recent as 15 years ago it was dementia, before that they just labeled you senile. With the total AD patient count quadrupling by mid-century (with all of us baby-boomers), they may name it something else altogether, like the plague. WHEW

I write often on what he can't do but have been asked to list the items he can do. In case somebody may want to visit or take him for a ride or walkabout, I agree it would be good to know what to expect.

Things he can no longer manage:

He cannot tell you what day it is, what month it is, what season it is.
He cannot count backwards from 100 by 1's.
He cannot work the credit card machine at the gas pump.
He cannot remember to put the gas cap back on.
He was forgetting when driving that he was driving, was doing too much looking, so no mo' driving.
He cannot keep up with anything: and most things are right where they always are and where he left them.
He loses his glasses when they're on his head.
He can no longer work the remote control.
He cannot remember to take his meds and after he's taken them cannot remember that he took them 5 minutes before. (when he took them)
He no longer reads at all, plays any games, works any puzzles.
He can't make change.
He can longer drink WHISKEY.
He cannot live alone or be left alone for long periods of time. He's a flight risk if he's bored.
He cannot remember what he had for breakfast or if he had it. Same with lunch and dinner.
He has trouble forming his words and finding the right words to use on occasion.


Things he manages pretty well......

He can remember nearly everybody he sees, unless he's at a funeral.
He can dress himself completely in his same uniform...wrangler shorts, Guy Harvey T-Shirts
Shower, shave and get ready although it takes longer.
He can take the trash out, but not get the liner back in the can.
He can drive the golf cart.
He can make a peanut butter and jelly sandwich, heat up a pop-tart but gets confused making his coffee.
He watches TV if you will get it on the right channel.
He would like to fish, but he can no longer get his gear right and each cast produces a bird's nest.
He would like to hunt, but I am scared to death to turn him loose with a firearm (alone).
He can reminisce about things and people (even call them by name) from the PAST.
He dreams a lot and they are vivid and real to him.
He loves to go riding in the car and visiting folks.
He likes going to the Barber Shop to see Joy.
He likes going to eat lunch at Fran's and he loves Fran, although he can't read a menu. They just bring him what they know he likes.
He likes to kick the dogs from time to time.
He loves seeing the grandies, but I can tell they're starting to wear him out some.
He feeds himself well and you can tell (250 pounds).
He loves to be hugged, kissed and made over.
He can mow the grass, is terrible at it and we no longer ask him to do it.
He will go to a movie, but its not one of his favorite things.
He will float in the pool but can't get too hot with the new meds.
He loves to watch deer.
He loves to ride in a boat on a lake ~ not in the ocean.
He loves to tell stories, always has, always will.
He loves company.
He can tell the time on his watch but asks me 20 times/day what the time is.
He will ask questions....over and over and over and over again. Because he can't remember the answer.
He won't wander too far away if he's out and about with somebody.
He knows most days that this is going to kill him and it depresses him greatly.
He will interrupt a conversation in a heartbeat. Otherwise, he knows he will forget.
He loves Diet Coke.

Of course there are other things he can do....other things he can't,  but  I wanted to relay a general idea of what really goes on at this level of impairment. If you think this is like taking care of a baby or toddler at this stage, that is simply not true. He does not require a care seat, does not need a diaper, can eat and toilet independently and will not make as ass of himself in public.

So, don't let me give you the impression that the AD has taken over to a point where WB's wandering around like he doesn't know anything. That just isn't so. Each and every day is different, to an extreme. Some days its better that he not even get out of bed, much less the house. Then others, we are amazed. Textbook Alzheimer's Dementia.

We understand his triggers and sometimes they just can't be avoided. If he decides he's going to run away from home, I cannot let him and then we have issues. If he decides to burn something in the backyard, I try and get the fire out of his hand. If he gets a power tool out or a ladder, I usually intervene. Generally, its the intervention that causes the breakdown. When we have to say no. 

This alone causes his depression. He knows that he can't do these things most days, but others I suppose he just gets to feeling pretty frisky. Again, I think its boredom. He needs more mental stimulation now than I have to give him.

In the beginning, he was so depressed he talked of "offing" himself, but now I do not believe he has the capacity to think that way. AD makes a person unable to think of anything else or of anybody else but themselves. Their thoughts, their feelings, their lives, their needs. Complete inability to connect with the feelings of others. 

Bill's oldest daughter Susie is coming on Wednesday from Boston to pick him up for a little field trip. I believe lunch and a trip to The Bass Pro shop are on the agenda.

Wade, Bill's oldest son, will soon be working his new job schedule around to include WB since there will be some drive time and job site visits.

If I were WB and in his condition, I would most likely be depressed about the prospects of knowing that there was no cure for my ailments and that each new day brought the prospect of more confusion and helplessness.

A tidbit about the 7 stages of Alzheimer's: WB was officially diagnosed 3 years ago this October 16th at level 3-4. We are now at full 5 with about 4 episodes of 6.

Stage 1:	No impairment (normal function)
	Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.

Stage 2:	Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer's disease)
	Individuals may feel as if they have memory loss and lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.

Stage 3:

Mild cognitive declineEarly-stage Alzheimer's can be diagnosed in some, but not all, individuals with these symptoms

Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include: Word- or name-finding problems noticeable to family or close associates Decreased ability to remember names when introduced to new people Performance issues in social or work settings noticeable to family, friends or co-workers Reading a passage and retaining little material Losing or misplacing a valuable object Decline in ability to plan or organize

Stage 4:

Moderate cognitive decline (Mild or early-stage Alzheimer's disease)

At this stage, a careful medical interview detects clear-cut deficiencies in the following areas: Decreased knowledge of recent occasions or current events Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances Reduced memory of personal history The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations

Stage 5:

Moderately severe cognitive decline (Moderate or mid-stage Alzheimer's disease)

Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may: Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated Become confused about where they are or about the date, day of the week or season Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s Need help choosing proper clothing for the season or the occasion Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children Usually require no assistance with eating or using the toilet

Stage 6:

Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may: Lose most awareness of recent experiences and events as well as of their surroundings Recollect their personal history imperfectly, although they generally recall their own name Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet Experience disruption of their normal sleep/waking cycle Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly) Have increasing episodes of urinary or fecal incontinence Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding Tend to wander and become lost

Stage 7:

Very severe cognitive decline (Severe or late-stage Alzheimer's disease)

This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered Individuals need help with eating and toileting and there is general incontinence of urine Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.

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. 

HALLELUJAH!!!!!!!! 

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 deal....you 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.

Rules Seek to Expand Diagnosis of Alzheimer’s

By GINA KOLATA

For the first time in 25 years, medical experts are proposing a major change in the criteria for Alzheimer’s disease, part of a new movement to diagnose and, eventually, treat the disease earlier. 

The new diagnostic guidelines, presented Tuesday at an international Alzheimer’s meeting in Hawaii, would mean that new technology like brain scans would be used to detect the disease even before there are evident memory problems or other symptoms. 

If the guidelines are adopted in the fall, as expected, some experts predict a two- to threefold increase in the number of people with Alzheimer’s disease. Many more people would be told they probably are on their way to getting it. The Alzheimer’s Association says 5.3 million Americans now have the disease. 

The changes could also help drug companies that are, for the first time, developing new drugs to try to attack the disease earlier. So far, there are no drugs that alter the course of the disease. 

Development of the guidelines, by panels of experts convened by the National Institute on Aging and the Alzheimer’s Association, began a year ago because, with a new understanding of the disease and new ways of detection, it was becoming clear that the old method of diagnosing Alzheimer’s was sorely outdated. 

The current formal criteria for diagnosing Alzheimer’s require steadily progressing dementia — memory loss and an inability to carry out day-to-day activities, like dressing or bathing — along with a pathologist’s report of plaque and another abnormality, known as tangles, in the brain after death. 

But researchers are now convinced that the disease is present a decade or more before dementia. 

“Our thinking has changed dramatically,” said Dr. Paul Aisen, an Alzheimer’s researcher at the University of California, San Diego, and a member of one of the groups formulating the new guidelines. “We now view dementia as a late stage in the process.” 

The new guidelines include criteria for three stages of the disease: preclinical disease, mild cognitive impairment due to Alzheimer’s disease and, lastly, Alzheimer’s dementia. The guidelines should make diagnosing the final stage of the disease in people who have dementia more definitive. But, the guidelines also say that the earlier a diagnosis is made the less certain it is. And so the new effort to diagnose the disease earlier could, at least initially, lead to more mistaken diagnoses. 

Under the new guidelines, for the first time, diagnoses will aim to identify the disease as it is developing by using results from so-called biomarkers — tests like brain scans, M.R.I. scans and spinal taps that reveal telltale brain changes. 

The biomarkers were developed and tested only recently and none have been formally approved for Alzheimer’s diagnosis. One of the newest, a PET scan, shows plaque in the brain — a unique sign of Alzheimer’s brain pathology. The others provide strong indications that Alzheimer’s is present, even when patients do not yet have dementia or even much memory loss. 

Dr. Aisen says he foresees a day when people in their 50s routinely have biomarker tests for Alzheimer’s and, if the tests indicate the disease is brewing, take drugs to halt it. That is a ways off but, he said, but “it’s where we are heading.” 

“This is a major advance,” said Dr. John Morris, an Alzheimer’s researcher at Washington University in St. Louis who helped formulate the guidelines. “We used to say we did not know for certain it was Alzheimer’s until the brain is examined on autopsy.” 

Dr. Ronald Petersen, an Alzheimer’s researcher at the Mayo Clinic in Minnesota and chairman of the Alzheimer’s Association’s medical and scientific advisory council, said adding biomarkers to a diagnosis would be a big improvement. 

Today, he says, when a patient comes with memory problems, doctors might say that the person has a chance of developing Alzheimer’s in the next decade, a chance of not getting much worse for several years, and a chance of actually getting better. 

Tests like brain scans, Dr. Petersen said, “will allow us to be much more definitive.” If the tests show changes characteristic of Alzheimer’s disease, a doctor can say, “I think you are on the Alzheimer’s road.” 

That can be a difficult conversation, but it can allow patients and their families to plan. “At least it’s a conversation the physician can have with the patient,” Dr. Petersen said. 

Alzheimer’s experts welcomed the new criteria. 

“Over all, I think this is a giant step in the right direction,” said Dr. P. Murali Doraiswamy, a psychiatry professor and Alzheimer’s disease researcher at Duke University who was not involved with making the guidelines. “It moves us closer to the cause of the disease rather than just looking at symptoms.”

But, he added, it also is a huge change. 

“This has implications for everybody alive, anybody who is getting older,” Dr. Doraiswamy said. Among other things, he said, it will encourage a lot more testing. And, Dr. Doraiswamy said, “diagnosis rates, like testing rates, only go in one direction — up.” 

Doctors will have to learn new terms — preclinical Alzheimer’s; prodromal, or early stage, Alzheimer’s. Patients going to see a doctor with memory problems might be offered biomarker tests, which can be expensive. 

The ripple extends beyond doctors and patients, Dr. Doraiswamy said. The new diagnostic criteria also have consequences for lawyers, insurance companies and workers’ compensation programs. 

And, he said, people have to be prepared for unintended consequences, which always occur when the diagnosis of a disease is changed. For now, he said: “We ought to be cautious that we don’t stimulate all this testing before we can give people something to manage their disease. There is no point in giving them just a label.”