It's a shame, really. And, a pity...

...that I have not visited my own diatribe in months. So many reasons really, now that I think about it:

• Sometimes saying (writing) it makes it more real.
• It was created as a suggestion for therapy, but sometimes it just gets too depressing.
• For a long spell we were in another lull while holding.
• I am spending my words on other blogs.
• Time has become such a commodity.

Many things to be thankful for this season. Kate is pushing through her college education as if it were a race, moving into new digs, and working a part time job since June. She still comes home on Fridays, but works most of the weekend leaving out on Monday morning for a noon class. Kate knows that if too many days go by without her daddy laying eyes on her creates issues and manages her class schedule accordingly. She's adding a minor to her schedule and a few soft courses as everything on the horizon for her revolves around her major. Finishing up the first semester of her second year and already 61% complete amazes me. Smart, focused, driven. Just like I like it.

We recently had a scare with our daughter-in-law, but seem to have thankfully dodged a bullet. After a six weeks of testing, nothing significant was found to explain 3 spots on her brain. Joni is a trooper and has a Trojan will. When she started nursing school, she announced that she would be concentrating on geriatric care (and that she could one day help me with Bill). Joni gives large and gives privately and is like nobody else I have ever been around. In her heart and in her body, she knows something is just not quiet right. Knowing that she had anything going on in her brain sent me into a tailspin. Having become very aware of what any kind of brain deficiency does to not only the patient, but everyone within striking distance seems to invoke slight panic....around here, anyway.

I prayed diligently for nothing short of a complete healing for Joni. God is good, that way. We have an understanding. He is fully aware that my pail is full. No doubt about it. Blessings come in all kinds of ways, I just have to remind myself to recognize them.

A busy summer ended with several days at the beach with our good friends, the McKays. This has become a yearly ritual to spend time with them on the most beautiful stretch of beach in the world. We left earlier for home than originally planned, as Bill began having issues finding the right bedroom. The longer we stayed, the worse it got. I would probably rather be at the beach than any other place in the world and only hope that before my time expires, there's a window of opportunity for me to soak up vitamin D without a schedule.

We had Andrew, Preston and Taylor Paige from Texas and Will and Meghan from Boston. House was full from June 1st until Labor Day. It is a joy for me to know that they want to come. We still don't do a lot, but I suppose we manage to find things they enjoy.

Susie comes from Boston every chance she gets and I cannot describe in words how wonderful that has been. To have someone to talk to until the wee hours of the night, someone who loves WB as much as I, who doesn't witness the daily grind, that sacrifices work schedules and leaves her kids, to just acknowledge and support us girls and then the bonus, she brings with her Maddie, Dalt, Meg and Will - it's been a wonderful thing. To know that she knows WB has nothing to offer, nothing to share, nothing at all and yet still makes the trek. I admire her. Any difference of opinion we have ever had is long forgotten as we focus on WB's needs. Another blessing.

Several days a week, Michelle wrangles WB for me, either taking him on rides or running errands. By the time he rises in the morning, I been studying for hours and she's taken over his first cup, the pop tarts and his morning medicine routine. It is a pretty tough job, but she can keep him entertained until at least after lunch. Michelle absolutely handles the heavy lifting.

Since May, I've been able to make one weekend trip to the beach with Sheri, a weekend trip to Memphis with the girls and one ballgame with Kate. Other than that, its pretty much all hands on deck. Sometimes you just have to get to a place where you know its going to be easier on everybody and resist at all costs "not upsetting the apple cart". It won't be easy with the sitters finally start coming, as WB just does better staying at home with the people he knows.

Moving on to the white elephant in the room, the reason the Blog exists at all, the main attraction...

It's just not good. You can dress it up, splash a little cologne on it, prop it up in a window - you just can't make a purse out of a sow's ear, which was once one of WB's all time favorite sayings. Not too much more to say about it except:

•  Can no longer organize the materials for a sandwich.
•  Can no longer cut his meat, butter his bread, ties his shoes.
•  Train of thought is down to seconds.
•  I could once finish his sentences, now I have no idea most of the time what he's trying to say.
• We pretty much communicate for him.
• Lots of crying and frustration.

I absolutely know without doubt the Alzheimer's medications are having little to no effect. However, he still never misses a dose as I refuse to chance it and daylight savings time is for the birds when there's an AD patient in the house. Just this afternoon at dark, he emerged from the bedroom fully dressed, pockets packed and dragging his shoe laces ready to head out the door. I'm not sure where we were going and it took a good 30 minutes to convince WB that we were not going to see "that other boy". He never could tell me who that other boy was, but it took a bowl of tomato soup and three grilled cheese sandwiches to get the cow back in the barn.

Just another one of those textbook symptoms, having slept in the den chair for three years keeps me pretty tuned in to the sun-downing and night wandering. Supposing now the meds it would take to keep him down all night would kill him outright, we just roll with the punches. At 2:00 am this morning and after hearing the biggest racket ever, I found he had moved the comforter and quilt off the bed and was having a Baptist pallet in the master closet floor. You may say leaving him there to sleep it off a great option, except for those damned consequences...

This is daily living, folks. Much like having a toddler in the house, its hell on wheels.And the stupid questions still keep coming, "How's Bill, is he getting any better?"

You're kidding, right? Just Google Alzheimer's. Please. Do it for me. Do it for yourself. Just do it.

His doctors, our neighbors, friends and people who you would never suspect have started opening the door to counsel. Kind words or just a look to let you know that they see the toll its taking and that it is okay to feel helpless. Never encouraged to take another route, just an acceptance that we're still in the weeds without a whacker. Ironically, I now see relief coming from those who recognize caregiver needs. As if to say, "we're shoring you up so that you can keep the vigil."

Since being blunt is one of my hallmarks or (faults), I see no reason to hold back now. You just have to get here to know what its like to see who's still standing with you. Then, you better have the guts to accept who is not.

Interestingly, this came out of my mouth tonight, "To know him now, is to love him most precious. A man who once feared nothing or nobody. A man who dedicated his life to his family and his children. Helpless and vulnerable. And of his antics he says, "I'm sorry, Honey." To which I now reply, "Not as sorry as I am."

The shame is that I see a shift in the focus. The pity is that I am in favor of accepting it. For most who are closest to us, who care and spend the time to really know what's going on, the question has become, "How are y'all holding up?" Upon reflection, perhaps they're starting to see a crack in the rock.

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.

Second great article from USA today....Pat Summitt

She's to be recognized for her willingness to come out and admit her diagnosis. A cure will only be found through awareness. No shame here, just tough as nails....I LUV IT! 

Alzheimer’s disease experts Tuesday hailed Pat Summitt for her decisions to go public with her diagnosis of early onset dementia, the Alzheimer’s type — and to go forth with her coaching career.

“She deserves tremendous credit for announcing her illness,” says John Morris, a physician and director of the Alzheimer’s disease research center at Washington University in St. Louis who is not involved in her treatment. “This under scores the point that people who are not older can also get dementia. It is key for others to know by recognizing and diagnosing early she, and others, can still function at a very high level for some time to come.”

Alzheimer's Dementia ~ Like a Game of Chess

WB June 26, 2011 on Avery Island, LA

Somehow, it is getting much easier to write about any and everything else -  than contribute to this blog. Even though we can grasp that Alzheimer's patients live the 36-hour day, (a book that hits the nail on the head in addressing how much we take for granted when it comes to our memories and thought) how many times can you write about it and how can one offer something new? 

WB is 65, his official diagnosis was 45 months ago, although we were looking for reasons for his problems as far as 6-7 years back. More recent discussion has concluded that this may have stretched back easily to a series of surgeries in 1996-1998. Its as if 3 surgeries under general anesthesia (2 colon and 1 ankle reconstruction) may have trumped up an already risky situation. 

The above details are mainly intended for the medical and research community  that regularly or randomly visit.

We have made two trips to Louisiana in the past two weeks to pick up and deliver grandchildren from Texas. Lafayette is the half-way mark and WB loves to ride. With four total legs of travel, I can tell you that each leg was entirely different.

The first leg to Lafayette on June 11, 2011:  Early to rise and mostly packed for the night, I woke with WB sitting in his chair. Showered, dressed and waiting. This never happens so I am assuming he was making sure he did not get left behind. Traveling I-20 west to I-59 South to 12 is a very common route for us. Disorientated traveling south and convinced that we were on I-65 South. Regardless of the continuous conversation we had about where we were, the numerous questions from him, he never quite to it straight. There are stretches of Mississippi that look like Alabama when traveling south, however, he was in a constant hunt for the exit to his mother's old home place. Just as we would get into what I would perceive as a long stretch of road and extended silence, I would turn up the radio to his favorite music and within just seconds, the questions would begin, often a repeat of the same. Turn down the radio, answer the questions, talk him through it, silence for awhile, turn up the radio. Then immediately, questions. As if the radio prompted the questions. (Where are we, where are we going, what time is it, what direction.....)

Second leg from Lafayette back to Birmingham on June 12, 2011: The boys were with us and full of excitement about their trip to Alabama for two weeks. He would not allow them to have a conversation with me. Finally, we just gave in and rode most of the 8 hour leg in silence.

Third leg back to Lafayette on June 25, 2011: For at least two days prior, we began getting the boys suitcases packed, things together, stuff in the car and this activity creates mayhem for WB. I had made arrangements on Monday for him to stay with Amy (#2 daughter) here on Saturday and then to her house Saturday night and Sunday. When I told him this on Tuesday, he promptly replied "I am not STAYING with anybody, I am going with you." Looking back on it, my mistake was giving him the option. The trip is hard on him, and has become harder on me. Knowing that I wanted to spend that last 8 hours with the boys reminiscing about their stay and suspecting his inability to allow me to do it was too much. Then, after relenting I immediately knew better. For two straight days, he was getting his things together to leave. Constantly. Leg 3 was rough. So bad, that I had downed two beers before dinner and that never happens.

Fourth leg yesterday, June 26, 2011,  we started early with breakfast, and he was turned around about where we were and what the plans were. WB has been wanting to visit Avery Island and the Tabasco plant for years, so Mike and I decided to make it happen. It meant a much longer day for each of us driving with the cost of several hours and an additional 80 miles out of the way, but it was  much to close not to take him. Honestly, there wasn't much to it for us on a Sunday, as they only offer plant tours during the week, but he loved it. Leaving the island for home and spinning off in opposite directions from Mike and boys at the I-10 junction, I put him in the back seat. Except for his inability to operate the different seat belt, it was a breeze.

WB, Me with the Short Summer Cut, Andrew, Preston Mike

With so much to share on their visit, I will include in another post....

It was my two-day jaunt to the beach with my friend in early June and a visit from Bill's daughter Susie that prompted me to get on the stick again looking for respite care and information on elder and estate law. Kate, Michelle and Wade were instrumental in making that  little trip happen, however, WB's reactions upon my return normally tear at any good associated with a getaway.

With several appointments lined up this week, I will no doubt be covered up in paper over the next month. The social worker with Medicaid is due here Thursday at 11:00 am to start the process. She will once again access his medical condition and conclude that without full time care, he IS a candidate for assisted living or nursing home care. We will only be approved for 12 hours of respite (4 hours/3 days per week) if he falls into this category. There is a real push from the state to keep patients in the home for as long as possible. Even though they DO NOT compensate family members for full time care, they will compensate an unskilled worker for 12 hours per week.  In Texas and at very low pay scales, they actually pay family members for caregiver support at home. They believe that better care is rendered from family. If that won't make you feel like you're worth nothing,......

But now, I'm thinking we should take what we can get.

A friend recently asked me, "what kinds of medications are you on?" NONE, I say. To which she responds, "I hear resentment and exhaustion in your voice."

Resentment, perhaps. That this was not the way it was supposed to be and my companion now needs the assistance a child would. I do not blame WB for this and do not think of it as resentment, but sadness. Yes, it absolutely makes me sad. The doctors and I have tried different things but at this stage of the game, I refuse to be medicated for another person's illness.

Sad, that there are so many in our own family who simply do not get it.  There are specific, warranted and absolute opportunities at this moment that could enrich WB's life and this "glass half full wife and full time caretaker" sits around waiting for  those things to happen. Sad that there are still family members who believe he is not afflicted at all. Because he was once so 'in charge' and now cannot speak for himself, I see advantages being taken on an entirely different level and in a plethora of different areas. I know, like so many others, that if WB still had his mind, things would be astoundingly different.

Exhaustion, absolutely. It would be impossible to explain this level of exhaustion. To be so mentally exhausted that it physically wears you out...there must be a word(s) for that, but I am so tired, I cannot think of it. Personally, not good at the game of chess, I have heard chess masters talk of this toward the end of their tournaments. 

Tired, but not so beat down that I cannot see what is happening around me, nor does it keep me from steering this ship to its next port of call. Sometimes when there are a multitude of small skirmishes and you cannot take them all on, I think you just have to pick the battles that will most likely produce the best outcome. This is war, after all. Just not the kind you would pack a firearm for. 

Is this sadness, or am I actually starting to get really mad about this whole predicament? Oh my.

So, just 4 hours last year seemed pointless. But now, 4 hours of respite looks like a golden opportunity to start strategically planning our next move.

Check.

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.

Growing Older

WHOA, today is weird already.

Early to rise this morning and by 9:00 am, WB was up and looking for his coffee and breakfast. I had just LOST several hundred dollars of art on my computer, so what he got was coffee, three doughnuts, his meds and a glass of water.

Relenting and arms flailing, I woke Kate for assistance. After at least an hour, she volunteered to recover the files for me. Sitting on the back porch having a glass of tea at 10:30 am, WB comes to sit with me and asks, "When did my grandmother get here?" (he has no living grandparents)

WHOA Nelly !

After a brief conversation with a friend on the phone, I entered the nook to find him seated at the table with a cup of coffee, eating another doughnut.

"NOOOOO", I said, "You've already had breakfast." To which he quickly replied back to me, "You must be crazy."

Arguing this fact would be pointless. Instead, I'll share a tidbit from a BFF Sylvia Blackerby.....



A group of 15-year-old girlfriends discussed where to meet for
dinner.  Finally, they agreed to meet at the Dairy Queen
next to the Ocean View  restaurant because they had only
$6.00 among them and Jimmy Johnson, the cute boy in Social
Studies, lived on that street.

10 years later, the group of 25-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the beer was cheap, the
restaurant offered free snacks, the band was good, there was no
cover and there were lots of cute guys.

10 years later, the group of 35-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the cosmos were
good, it was right near the gym and, if they went late enough, there
wouldn't be too many whiny little kids.

10 years later, the group of 45-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the martinis were
big and the waiters wore tight pants.

10 years later, the group of 55-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the prices were
reasonable, the wine list was good, the restaurant had
windows that opened (in case of a hot flashes), and fish is
good for cholesterol.

10 years later, the group of 65-year-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the lighting was good and
the restaurant had an early bird special.

10 years later, the group of 75-years-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because the food was not
too spicy and the restaurant was handicapped-accessible.

10 years later, the group of 85-years-old girlfriends
discussed where to meet for dinner. Finally, they agreed to
meet at the Ocean View restaurant because they had never been there
before.

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.

High Cholesterol, Hypertension May Harm Memory in Middle Age

I have suspected this all along.....Study finds link between cardiovascular disease and lower scores on mental skills tests.

By Jenifer Goodwin
HealthDay Reporter

MONDAY, Feb. 21 (HealthDay News) -- Hypertension and high cholesterol may be linked to losses in memory and mental abilities in middle age, a new study finds.

Researchers in France assessed data on about 3,500 British men and 1,300 British women with an average age of 55 who participated in Whitehall II, a long-term study that tracked British civil servants.

Three times over the course of a decade, participants took tests that measured their reasoning skills, memory, fluency and vocabulary. The reasoning test was composed of 65 verbal and mathematical questions of increasing difficulty, and the memory test asked people to recall a list of 20 words. The fluency test asked participants to do such things as name as many words as they can, in one minute, that start with the letter "s" or name as many animals as they can.

Participants were also given a what's called a Framingham risk score, which takes into account a person's age, gender, cholesterol levels, blood pressure, smoking history and diabetes status to predict the chances of having a heart attack, stroke or other cardiovascular problem sometime in the next 10 years.

Those who had poorer cardiovascular health were more likely to do worse on tests of memory and mental ability than were those who had better cardiovascular health, according to the study.

For example, a 10 percent higher cardiovascular risk score was associated with a 2.8 percent lower score on the memory test for men and a 7.1 percent lower score for women.

Over time, those who had worse cardiovascular health also saw steeper declines in mental tasks, with the exception of reasoning for men and fluency for women.

"We found that cardiovascular risk in middle age is related to lower overall cognitive function," said study co-author Sara Kaffashian, a doctoral student at INSERM, the French National Institute of Health & Medical Research in Paris. "We also observed a relationship between poor cardiovascular scores and overall cognitive decline over 10 years."

The study is to be presented in April at the American Academy of Neurology's annual meeting in Honolulu. Experts note that research presented at meetings has not been subjected to the same rigorous scrutiny given to research published in medical journals.

Dr. Ralph Sacco, president of the American Heart Association, said an increasing body of research is showing the importance of cardiovascular health in maintaining brain function over a person's life span.

"The link between cardiovascular health and brain health is becoming increasingly important and recognized," said Sacco, a professor of neurology, epidemiology and human genetics at the University of Miami Miller School of Medicine.

High blood pressure, diabetes, smoking, high cholesterol and inactivity can contribute to a narrowing of the large blood vessels throughout the body, but also the small blood vessels of the brain, Sacco explained.

Those changes can reduce blood flow, which can "starve the brain of oxygen and lead to changes in thinking, cognition and our mental abilities," he said.

Though the people in the study did not have Alzheimer's, other research suggests that hypertension, diabetes and poor cardiovascular health are a risk factor for both Alzheimer's and vascular dementia, he added.

"In the old days, we thought vascular risk factors only led to vascular dementia, but now we know vascular risk factors may also have an impact on Alzheimer's," Sacco said.

But the good news, he said, is that middle-aged adults can take steps to improve cardiovascular health, including eating a proper diet, exercising, controlling diabetes if they have it and, if applicable, taking the correct medications for hypertension, Sacco said.

"There is a hopeful note, which is that by controlling your vascular risk factors, you may be able to reduce or forestall cognitive decline," he said.

More information

The U.S. National Heart, Lung, and Blood Institute has tips for a healthy heart.

SOURCES: Sara Kaffashian, doctoral student, INSERM, Paris; Ralph Sacco, M.D., professor, neurology, epidemiology and human genetics, Miller School of Medicine, University of Miami; April 6-11, 2011, presentation, American Academy of Neurology annual meeting, Honolulu

Last Updated: Feb. 21, 2011

Copyright © 2011 HealthDay. All rights reserved.

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.

Getting out.....

We share so much about staying in that I thought we would speak to getting out.

Last night, WB and I traveled up the road a piece to attend Mick and Rick Springer's 50th Birthday Party. Hosted at Val and Mick's home in Alabaster and only a mile from our longtime friends Skip and Cathy McKay. So, when news of our going to the party arose, Cathy demanded that we also stop by to see them. I was nearly giddy with the invite.

It had been over a year since we had visited them in their home and with the thought of some of Cathy's cooking and homemade margaritas combined with some time alone with her, I simply could not resist. 

The scenario has always been: Bill and Skipper Dee gather in the den in front of the television chatting it up while Cathy and I sit around their large island to catch up. She is the queen of the margarita ~ always has been always will be. This has been a standard for about 18 years, however WB no longer gets to enjoy those famous concoctions. Well, perhaps he could, but with the medications he takes I shudder at the prospect of repercussions. There was a funny moment when he said to me, "have another, I'll drive us home." Heck, if the po-po pulled us over in Helena on the way home, we would both end up in the hokey.

It was evident to Skip the decline in WB's communication abilities in just a short time. We had spent Labor Day 2010 with them at our family favorite, Inlet Beach ~ that was just 5 months ago. Strange how I see subtle changes and then remarkable to me how marked they are to people who do not see him so often. Supposing that is the way these things go, it also validates for me some of the issues we face with daily living. Sometimes I just need people to see and experience what I am to help keep my coordinates in check.

From there, we moseyed on over to Val and Mick's to find their party at full tilt. Great music, great food and great times. Early on, I had worried about WB and how he would do, but when people extend their hand to the "legend" before he can get his sea legs under him, it is all good. Warmly embraced by people he had not seen in many years. Some knew of his illness, perhaps some did not but it simply did not matter. Our hosts made no real big play about the elephant in the room and for that I am grateful. First class, all the way. Thinking back to several years ago, WB would have worked the crowd like a champ. Head thrown back with that hearty laugh while swapping stories.....

So, except for the constant tugging at his jacket to try and cover the extra 10 pounds, he assumed his new normal position. Lean, smile and observe.

From attending events several times a week to trying to get to something once every couple of months is not a symptom of not wanting to see people. Sometimes, it just wears me out to make it happen. The party had been on the books for several weeks and we literally began getting him ready for a 7:00 pm party at 11:00 am. His worries over which jeans, what boot, the color of his belt, which jacket, what time will we leave, who will be there, is it cold outside, when will we eat.....like a merry-go-round, it cycles over and over. Round and round and round we go, where it stops, nobody knows.

After two shirt and three jacket changes, I am dressed and ready to walk out the door as he intently studies his fish while sitting in his chair, still in whitey tidies. Clothes have been ironed and laid out on the bed for hours.

He finally got some pep in his step when I casually asked, "well, are you going with me?"

Thirty minutes later with Kate nearly in tears, the animals nervous as hell and I am feeling my blood pressure in my ears, we pulled out of the garage.

It is so important to get him out, but it is getting so hard to make it happen. Lately, when we make doctor appointments, he is spit shined but they get to see me in yoga pants, tennis shoes, a make-up free face with not even a watch on. And, early morning appointments are brutal as they tamper with the ebb and flow.

Cathy called me last evening to check my progress and I told her I was putting on my face to which she then exclaimed, "say it ain't so!"

The girls were shocked when we returned before midnight and had called several times to make sure he was holding up while offering to come and get him so that I could stay.

Andy met us at the door upon our return. He's a keeper!

Once again, the effort was worth the result ~ and Fuzzy the DJ taught me a new dance move! You just can't beat that on a good day. Valerie has become a real constant in my life. Somehow she always knows when to pop up with encouraging words, scripture and prayer or a girls night out. Our instant friendship has matured with understanding, six degrees of separation and a genetic family tie. A real treat last night was to finally meet their precious daughter, Ashley. She is absolutely beautiful ~ inside and out.

They say to expect rain with a busy week ahead. Plans were to encourage him to wash Black Beauty today, but I think we may pass. It has been quiet this morning and with the prospect of getting some studying in along with the assistance he will need to make the car washing chore happen...well, lets just call it spades and say it is simply not on my radar screen.

Until next time,

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.

Sundowning, Alzheimer's and WB

Read enough to know that the day may come when WB may exhibit this disturbing Alzheimer symptom. 

Even though he sometimes becomes restless at night and medications have been prescribed to relieve it, last night was the first time we had experienced his true confusion with his abilities to differentiate night from day.

You learn as you plow this field how to handle the stress and anxiety AD brings on in the patient. Any travel or activity plans, sudden decision to leave the house, doctor appointments, company coming, etc. exacerbates this. Just about anything that does not fall into his daily routine, will cause WB stress and anxiety. 

We have been talking about traveling to Texas to see Mike and his family for quite some time and WB now wakes each morning and rushes to get dressed for travel. He has been gathering his "gadgets" daily, afraid we may forget to pack his nose spray bottles, flashlights, glasses, pocket knife, hairbrush, mouthwash, phone and charger. Definitely seeing a pep in his step since about October,  WB is most likely concerned that he may get left behind. This symptom is called shadowing and he has been shadowing for years now.

It all started around mid-morning yesterday.

He knew Kate would be coming in after her last tests. He now relates Friday with Kate coming home. So, any Friday that she does not come home creates a double dose of confusion for him.

Leaving WB with Michelle about noon to gather a bill of groceries created even more stress. When I returned, he had begun gathering his things for travel and was ready to change clothes upon my return. I had to once again remind him that we were not ready to leave for Texas. Note: my trip to the grocery totally screwed with his mid-day nap.

Most days about mid-afternoon, he will tell me he's hungry and that he has not eaten all day. I truly wish one could see the before and after AD pictures of Bill and his ever-expanding waistline. If something doesn't give soon, he will be in 42 pants and triple x shirts. I shudder as the last thing we need to spend money on right now is a complete new wardrobe for him. All the while I am trying to cut him back, he is sneaking snacks from the pantry and fridge. Its never been about quality for him, but quantity.

Dr. Lee blames some of this on the Seroquel which increases appetite and then of course the AD will cause him to have no recollection of if he ate or what it was. Just the opposite can happen when AD patients just forget to eat altogether and nearly starve to death.

Hunter came in and the four of us enjoyed a BBQ dinner and settled on plans to take WB to see a 7:30 movie. WHOA, a double date with daughter and beau sounded like a perfect Friday night event with an added bonus of BOGO tickets and the cinema is less than 2 miles from the house.

I had surprised Kate with one of her faves last night (brownies and ice cream) and dished up a moderate bowl for WB to enjoy while attempting to check us in at the movie online. I had my back to him less than 10 minutes when I noticed he had returned to kitchen to triple up his portion. Caught like a deer in the headlights, he was nearly choking himself to get it down before detection.

Scolding him with a smile while cleaning the chocolate syrup from his chin and chest,  I ran to get him another shirt. It was then that he told me he did not want to go. Because he had missed that one nap, there was no alarm for me when he announced that he was ready for bed at 7:00 pm.

I sleep in the den and it has been this way for quite some time. WB snores like a 500 pound grizzly and has a tendency to wander. Overall, it just works. I feel that I can better catch him before he's out the door and down the road.

Having scrapped the movie plans, we (Hunter, Kate and I) settled in to visit, talk over collegiate issues, the holiday itinerary, etc. and eventually plugged in The Grinch. I think we had all dozed intermittently when Hunter and I both were startled with banging. Nothing going on out in the yard, I settled back down and within minutes, another thud.

It only took me a second to get to the master bath to find WB coming out of the shower. Supposing he recognized the shock on my face he explains while drying himself off, "I've been running so late that I wanted to go ahead and get a head start." The pitch of my understanding must have been alarming to him as he asked for the time. 

Then comes, "I'm so sorry, Honey."

It only took a few minutes for him to realize that it was dark outside and others in the house were still moving about. I had him dried off, dressed and back in bed with a Xanax in 10 minutes. By 12:30 he was snoring again.

If you read and study this illness as much as we do, you recognize the symptoms when they strike. Although not shocked, I am saddened. Even though his decline into oblivion has been  evident, it is still happening too fast for me. As much as I prepare myself for these dips, it never ceases to take my breathe away. No matter what we do, no matter how we refocus our efforts, we cannot stop this.

Still sleeping soundly, chances are he will not remember. Chances are, I will not mention it. We will all resume our planned activities with a sideways glance and more attention to detail. Doubtful I will alert his doctors, as that may only increase the medications and getting to the other side of this holiday is my goal. I am confident that adjustments can be made here to get us through it. If I am wrong, so be it.

Instead of hysteria, I will adjust his diet again by removing all caffeine and further restricting his sugar intake. I will have him up by 9:00 in the mornings instead of allowing him to sleep until he gradually rises. We will eliminate a mid-afternoon nap, supper will be moved up to just after dark and I will try to keep him from eating anything before bedtime. As cruel as this seems, it is all in an attempt to manage his care in the home.

Just now when gently rustling him from his long winter's nap he asks, "where's the backhoe?" Sure hope he wasn't of dreaming of digging a big hole for me.

Will be posting links on sundowning some time this weekend.

Looking In The Mirror When Looking For Reflection

WHOA, what a year.

Looking back on a year of posting has been an incredible walk through some things we just do not want to remember. Regardless of our relentless attempts in "trying to remember" and working with the memory lapses with AD ~ there are just some things we (I) intend to let go of.

I probably know a thousand people (personally) and WB could say that squared. When the proverbial shit hit the fan, there seemed to be never enough time to keep everybody in the loop and juggling this communication became exhausting both physically and emotionally. It was then that I abandoned the Just Brantley blog and created Diagnosis: Alzheimer's.

It was also then that I created a communications network. I tell a few people what's going on and they can tell everybody else. Looking back now, that may have been a mistake on my part. Communication and therapy was the reason for this rhetoric, so I will just try and do a better job of it. That and what Dr. Lee calls "caretaker withdrawal".

Big changes in just twelve short months that look something like this:

Kate, #3 Daughter, is finishing up her first semester at the University of Alabama. She is still dating Hunter and we do not hold his love for Auburn Football against him, much.

Amy, #2 Daughter, comes each Wednesday and picks WB up for a ride-about. Either to lunch, or errands, or a haircut, or to visit old friends.

Susie, #1 Daughter, flies in from Boston once a month for 3-4 days to spend time with WB and the rest of  the family.

Michelle, Live-In Daughter, is still working at mostly nights and continues to help us get through the daily living aspects of AD.

Wade, #1 Son, has a new and demanding job that he loves and is on call 24/7.

Mike, #2 Son, is still living in Texas, comes here for a week in the summer and we try and visit them whenever we can.

WB's condition has declined. He now tests 13 on the MMSE. Still problems with speech and it is most evident when around large numbers of people. One on one, he still enjoys nice long chats. He will forget the last thing you said one millisecond ago, but hey....

Looks like we are out of the clinical trial at UAB as he refuses to enter the MRI machine. I have decided that we will not participate in the IOP at Princeton Hospital. Looked like a wonderful opportunity at first glance, but it will be too hard on him. Any kind of stress brings on more than the fallout is worth. Not BIG stress, but doorbells, dogs barking, riding in the car, other people in the grocery store, Alabama Football in Tuscaloosa ~ that's what stirs him up.

And me, well I am convinced upon reflection that its me, myself and I that exhibit the most significant change.

Guessing you never really notice the war you are in until you starting coming out of it, reflection for me has not just been mind boggling but mind blowing.

Physical growth was certainly noted when last year's jeans no longer fit and I began to pay better attention to stress eating. Certainly not proud of that and am sure when my friends see me they must be thinking, "WHOA, what must she be thinking?" I did break down and purchase for myself a new pair of tennis shoes for walking, am not hitting the salon (ever) and am going to splurge this Christmas and get some products for myself that may preserve the old Rhonda before she gets too old. That's the outside stuff.

Its the inside growth that takes me longer to see. Never a jealous person, but I have been so angry and resentful. I was supposed to be looking forward to a month in Italy by now not a life of visits to an assisted living facility. Pfft. Right?

Patience and humility. Yep, that's the good stuff. Can I laugh at myself? Oh yea. Do I still have few scores to settle? You bet, but that will all work itself out. 

We are still hanging upside down on that roller-coaster that levels out and takes wild climbs and deep plunges. Sometimes it lifts my ass completely out of the seat, but our success getting through Alzheimer's will always be relative to how I handle it.

Thinking about taking a road trip soon and it will not matter where we go, WB will never have been there before!

Just Brantley

The Self-Made Man (Or Woman)

Professing that we would not get mired down in this today did not completely wipe it from my mind. I am writing like the wind and will not have time to proofread. It is what it is.

My early morning ritual was severely derailed this morning because of the time change. It was 6 and I was thinking for some odd reason it was 8. I fell down the rabbit hole even further when thinking about how good going back to school has been for me, my family, my soul.

Then, I became even further sidetracked when reflecting on why I did not get the education I so yearned for. (and that whole other rabbit trail)

Veering left at the fork, I fell back into the 1970's and that always riles me up. I had to slap myself around for a minute or two after noticing I had written a complete dissertation on said subject matter without the subject matter (WB) in the writing at all. So, I pulled him in when analyzing the Self-Made Man theory.

Flight of thought. Dr. Lee has a name for it. I seem to think it has something to do with the ability to think about more than one thing at a time. He agrees that is fine, he just cannot seem to keep up with me when I am covering all of the things I need to tell him in just 2 hours per year. That is really all the time you get with your internist if you only go twice a year.

The Self-Made Man ~ (SMM)

The short of it is.....my Gran called an unsavory feller this name with great disdain. "You know, he's just a SELF-MADE MAN !"

HUMMM

In my mind, a SMM was a good thing to be. You came from modest/humble beginnings, was not originally destined to make something overly large for yourself and made out pretty good, overall. Gran was right to call him that, as the shoe fit. But, we all knew he had the morals of an alley cat.

The Willie Bill reference is that I had considered him to be a SMM. But Gran's inference to that other feller had me stumped. I would never, ever throw those two in the same fox hole. Yes, WB came for modest beginnings, from generations of bricklayers and worked himself into a successful home builder. But he did not do it alone. Not completely.

Most of the articles I perused this morning were targeted at those who had NO ASSISTANCE of any kind. Now, how can that be? Does that mean that to be a SMM, you could not have had a special favor, a grant to college, an aunt that let you board in one of her rooms ~ that is what some believe. Surely somebody did something for these SMM's on the list throughout their lives to get them to where they are, even if it was getting a ride on the back of a covered wagon going west.

After several articles mentioned Malcom Gladwell's Outliers it all came back to me. If my memory serves correctly, he inferred that without some kind of leg up (wealth, education, status) one was highly unlikely to make it as a SMM. Most of the bloggers and writers on the SMM subject matter list their ideal SMM's. They all had at least one thing in common ~ lots and lots of money. Then, post after of post of people responding in debate over who should or should not be classified a Self-Made Man.

(Incidentally, I left that book at the airport in Chicago for somebody else to read. It was disgusting. Normally a fan of Gladwell works, I just could not get my arms around it.)

But, when reading about common ideology during the Great Depression, being a Self-Made Man also implied that it was a more well-rounded man. A manly man, a God fearing man, a good husband, a good father, a good neighbor, a man who sets a good example and the consummate humanitarian.

No doubt, the theory has somewhat changed with the times and SMM seems to be on the tips of many a tongue during this economic downturn. Montgomery Gentry even has a song titled Self-Made Man, but he got way off the reservation. Hey, perhaps that was the intent. You know what they say about opinions......

It is all just too subjective. Kate intends to take Philosophy this summer, perhaps she will take this one for the team.

But, isn't that exactly why Gran called this wealthy scad a Self-Made Man in that tone? He was a jack-ass of the first order, to his family, to his friends, to everyone. From nothing, he climbed to the top and today is a very wealthy man ~ and at the expense of others. Gran was highly intelligent and well-spoken. She would not have misused the term.

Now, EVERY-body would like to know who this feller is but I would never disclose his name, here. If you are a relative of mine, you know. EWWWWW EEEEEEE. Nasty business.

No longer confused, I will adopt Gran's analogy. You may become a SMM if you come from nothing and achieve great things, but if you do it at another's detriment, you're not just a SMM, you're a "You know, he's a SELF-MADE-MAN". I can see her now, as she would curiously cut her eyes and lift her right eyebrow.

Same for politics. Why is it that the candidate believes that we are more likely to vote for him/her if you came from nothing and worked your way up to the top? There must be a tell-all on a bookshelf somewhere that explains this madness. I really do not mind if you are as rich as black Texas dirt and running for office if you are willing to work hard, work smart and keep your hands in your pockets. That means, work daylight to dark and then some. You are never off, always on. You are smart enough to surround yourself with people smarter than yourself and you do not lay your hands on taxpayer dollars or your secretary's babysitter.

My analogy would then make WB a better candidate for the Self-Made Man. Everything except he was taught to work hard, taught to lay brick and block, taught to build houses, etc. He did get a leg up, matter of fact, he got a tremendous boost. His advantage was his family and this is how this all began.

A simple little post about being grateful for this new education which allows me to better share living with AD and the differences in our families as it relates to "getting that leg up". That, my friends, is for another day.

But the other part, the thing I now know Gran must have been speaking to ~ is the lack of humanity, the lack of humility, the lack of charity, the lack of compassion, the selfishness. You simply do not have to give your money away to comply. Being kind, humble, grateful, sharing your knowledge, thoughts or opinions would qualify. This feller did none of that.

But WB did, always.

Closing this mess, it is important for me to note that I now believe it may not be smart to profess that you are a SMM while still among the living. Things could change, and they mostly do. And, to be named a SMM by someone else is purely subjective, nobody will ever agree with who may or may not make the list. Even though I posted a request on facebook this morning seeking guidance, I must have already answered it for myself.

Once again it is Sunday, and without fail the day of the week Gran and I always spoke on the phone. Perhaps I would have asked her if that is what she meant if she were here today, but I doubt it. Sometimes you just don't think to ask things like this when you can. Its when you can no longer pick up that phone and make that call that rips your heart out.

Rest in peace, Helen Brantley.

Author Andrea Gillies on Her Mother-in-Law's Alzheimer's Descent

Rhonda:  This is exactly what I've been trying to say and some days cannot find the words. Excellent. Sent to me from a good friend knowing that I needed to read it and share with others I know who are experiencing the same.

Chris Watts

By Michelle Burford
 

Five years ago Scottish writer Andrea Gillies took in her mother-in-law, Nancy, who was then in the midst of Alzheimer's disease. Andrea thought she could simply nurture Nancy through her difficult passageway, but just weeks after Andrea moved into a Victorian mansion with her husband, Chris; their three young children; Nancy; and Nancy's ailing husband, Morris, the journalist encountered a much more cruel reality: Alzheimer's involves far more than memory loss or a little dementia. It's an illness that can rob you of your very identity.

In her new memoir, "Keeper: One House, Three Generations and a Journey Through Alzheimer's," Andrea tells the story of the crisis her family confronted -- complete with Nancy's dark moods, Nancy's unexpected rages and the gradual undoing of Nancy's grasp on reality. As her brain was pared away by the debilitating disease, Nancy, a former secretary and loving grandmother, no longer knew who she was or why she was with her family. The entire ordeal left Andrea with two questions: What exactly is the self, and does identity even exist without memory?

Inside the Brain.....

An interactive tour.

Who thinks of Alzheimer's in someone so young?

http://www.usatoday.com/news/health/2007-06-11-alzheimers-cover_N.htm

Its not like a flea. It will not jump on you.....

It is not contagious. However, Early Onset Alzheimer's Dementia is generally familial. We do not think that WB's parents or grandparents had Early Onset symptoms (65 or younger) and miraculously, WB has tested negative genetically for the markers. Good for WB's kids to know, so how did he come about it?

I posted on this before and continue to believe there were several contributing factors. In his line of work, there were probably a few bumps on the head. He fell out of the car when he was 3 and landed on his head. In his early 30's he was in a boating accident and could have taken a blow to the head. We are certain that this accident contributed to Post Traumatic Stress Disorder and left untreated, could contribute to severe depression and stress, also a contributing factor for Early Onset. That he has severe hypertension most definitely adds insult to injury as it creates vascular issues and years of decreased blood circulation to the brain. 

I asked a cancer doctor once, "why do you think some people get cancer and some people do not?" His explanation surprised me but made perfect sense. He said  it is believed that people take hits; environmental, occupational, genetic, illness, etc. The more hits you take (or get) the more likely you may be to get a cancer diagnosis. 

Again, I think there were many contributing factors, the stars all lined up and WHAM!

This writing is for those friends of his who are his age, who have known him for many many years. Those who hunted, fished and worked with him. Those who knew of his abilities in all areas and are apprehensive because they cannot remember where they left their keys and that they may get AD. Unfortunately, it can remind us of our mortality. 

It is agreed that being around WB in this condition may be scary or make you uncomfortable. Especially if you knew him pre-AD. But if you have been around him in the past several months, you will notice most days a kinder and gentler man. 

I will not tell a lie. There are episodes with outbursts and as Kate previously described, "oh no Mama, Billy Ray is back."

Growing up, WB was Billy Ray. When we married, I promptly changed that to Bill. Wiilie Bill is the name his oldest friends use, thus my pen name for him became WB. Kate refers to Billy Ray as the man she's heard about all her life, the man who raised her older brothers and sisters, the man who was larger than life and would stare down a grizzly bear. Nobody tougher, nobody stronger, nobody ever willing to come at Billy Ray ~ legendary stuff. 

Kate has also devised a plan for a gun that shoots darts. Similar to sedating a wild animal, she suggests that we load the darts with a sedative. Then, when he is having an episode, the shooter just aims and fires away, somewhere in the buttocks. She mentioned this to Dr. Counce, who thought this was an excellent idea. May not be legal, but she enjoyed it nonetheless. 

We do find humor whenever possible. As my friend Amy Dunavant would say, "you just can't make this $hit up!" Even though we think that what goes on in this home us unique, it has been surprising to learn from others who subscribe and comment that his symptoms commonly mimic what they see as caregivers. 

It inspires me to think of the opportunities after knowing that so many people are caring for AD patients ~ patients who are on the cusp of that next stage.

Early Onset is difficult to diagnose and the medical community is leery of labeling a patient at such a young age. WB should have been diagnosed at least 2 years earlier, perhaps even sooner than that. We were ignorant and had no idea. I am not unlike others who think AD would never happen. However, since his diagnosis I have studied this illness to a fault. 

Update: Today, we had made plans to visit a friend(s) home to work in their gardens, house, etc. in anticipation of their return. He lasted about 30 minutes and had to return home as he can no longer tolerate the heat. Very discouraging for him as he worked outside, fished in the summer, worked the fields of the hunting club and played sports 100+ heat all his life.

We finally have a referral for Home Health Care, albeit the wrong kind. I do not need help with bathing him, I need a psyche nurse to visit and I am determined to find one. For him, for me, for us. I need to understand how to care for him now and want back-up. I need someone to tell me when its time to do something else, something different or nothing at all.

Appointment with Dr. Counce is this Friday and I am looking forward to hearing what she has to say.  We are going to continue the UAB clinical trial until he can no longer handle it. 

I want to personally thank those of you who continue to follow this blog.  108 unique hits with just 3 posts is astounding. It makes me realize there is genuine interest in the disease, interest in WB and what a wonderful display of care and compassion. I had lost my voice and feel that I may have found it again. WB's internist suggested several years ago that I write to ease the burden and share with others. Unfortunately, I did not take it seriously. Perhaps I had too much going on, perhaps it just hadn't gotten bad enough, perhaps I was in denial. 

I have borrowed the information below from a reliable source:

Overview

A person suffering from early-onset dementia shows symptoms of the dementia before the age of 65. Dementia is the term used to describe the symptoms of a large group of illnesses, which cause a progressive decline in a person's mental functioning. The most common form of dementia is Alzheimer's disease. Still, early-onset dementia may be caused by other conditions including neurodegenerative and autoimmune disorders.

Cause

Early-onset dementia disease often runs in families. A person whose parent or grandparent was diagnosed with the condition has an increased risk of developing dementia. Many people with early-onset Alzheimer's inherited one of three genes linked the disease. Other medical conditions such as lupus and multiple sclerosis may also be linked to early-onset dementia.

Symptoms

Symptoms include memory loss, confusion and changes in a behavior. A person may feel anxious or restless. Common tasks, such as grocery shopping or microwaving a meal, become difficult to someone suffering from early onset dementia. Myoclonus, or severe muscle twitching and spasms, is common in early-onset Alzheimer's patients.

Considerations

A person diagnosed with early-onset dementia is often still working full time and possibly raising a family. Most patients have no physical ailments. Many people react differently to being diagnosed with the progressive memory condition at a young age. According to the Cleveland Clinic, a person may become depressed, feel powerless or become easily frustrated.

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.

The Cat AND The Hat

The picture above is in direct conflict with the events of last week. For that matter, an even larger conflict with life according to "Billy Ray".

I took a class last week on post-purchase certification at a NeighborWorks Institute in Phoenix. These come around about once a quarter and I am soon to be finishing up this tract in Homeownership Lending and Foreclosure. This marks the sixth trip in a year and they're not getting any easier to take.

The plan is nearly always the same:  I leave on Sunday and return on Friday or Saturday. Michelle and Kate normally hold down the fort and up until 2-3 trips ago, Bill did fine until I returned. Lately however, it makes it until about Thursday and all hell breaks loose. Change is hard for him and normalcy is our friend. 

I had really talked it up this time, reminding him way ahead of time about leaving, urging him to be pleasant, creating projects around the house for him to do. I received a call from my baby Tuesday afternoon, she was sobbing.

Bill had hemmed Kate up right after Michelle had left for work, telling her that "she would be sorry when he was gone". A previous post mentioned that sometimes what comes out of his mouth these days is astounding. It upset her so much that it scared her. She gave him his medicine, put him to bed and locked herself in her room.  

She was still shaken the next morning, so I called him from Phoenix. He indicated to me that he had no idea what had happened so I give him a very large pep talk, reminded him that she was just 17 and went on about my day. Further reports on Wednesday from Michelle indicated that it was a good day. 

On Thursday, I had Michelle take him with her to run errands and they were home by lunch. She made him lunch when they returned and he walked downstairs to the basement. On Tuesday at about 2:30 pm while sitting in class I received a text from Michelle - "CAN YOU CALL ME??!!!!!"

That was a distress text. Out of class I go to call her and she answers, sobbing. After several immediate calls to some of the older kids, I was able to get in touch with my friend Lori and she scuttled on over and stayed with Kate until it was time for Bill to retire. 

Lori reports that he was ornery and showing very few reasoning skills. Kate reports that he's turning back into Billy Ray from the Bill we all know and love. He has accused them all of sending Lori to watch him, is completely incorrigible and I have an interview at 4:15. 

My friend Lori made an interesting observation. She says he's been emasculated. Once the man of the house, he now has to depend on the girls and I for everything. Makes sense. And, when I am away, he becomes the boss again. However, the girls are not going to let him just hop in the car and drive. They try and step into my shoes to help me, but I can see that we're going to have to modify their approach. 

Wade, Angela and the boys came over Friday afternoon and made hamburgers to give Kate and Michelle a break. Wade also agreed that there has been a pretty significant slide in reasoning skills over the last 6 months. Bill told Angela Friday night that he had not talked to me in 4-5 days and he is convinced he is being mistreated since he cannot have free rein with a vehicle and several hundred dollars in his pocket. He can't tell us where he wants to go or how much money he needs......

Looking back on all of the Alzheimer's research materials reminded me that most moderate patients relate this to mistreatment and begin to have little or no regard for any feelings  but their own, simply because they just can't.

Next trip, I will leave an even better plan. Monday is Michelle, Tuesday is Wade, Wednesday is Kate, Thursday is Lori, etc. My new neighbors have offered to help out so perhaps we can add them to the agenda. They had learned of this discord from Kate on Thursday and had Bill over for lunch on Saturday.

All in all, its the stimulation I think. The more he has to do, the more he's occupied, the better the mood. I find myself interacting with him all day so he's become used to that, even if it is little more than walking through the house asking him how the weather is outside, sending him outside to check, sending him downstairs for a small errand. I can generally keep him moving most of the day ~ must be the multi-tasker in me.

Issues? Yes, we've got them. Irony? Yes, we've got that too. As this picture represents, on Monday he is very calm as the cat sleeps on his lap. Hell, in a former life, he kicked the cat!