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.

Throwing in the towel......

Throwing in the towel, waving the white flag, I surrender. Well, on some levels anyway. On others, not quite so fast. Cannot imagine this turning into a literary masterpiece, just a little metaphoric update.

Several things going on the Alzheimer's front. First, WB has had a prescription change. Supposing it is like any medication you take over a long period of time, it just quits working or your illness is moving so fast, the medicines cannot keep up.

Psychotic behavior and anxiety are what we battle most days. You say the word 'psychotic' and may think of padded cells and straight jackets. Whoa Nellie, not so fast.

In this ring of fire, dreams are really hallucinations. If you know a dementia patient who wakes  in the mornings or from a nap believing they were late to play a baseball game, that their deceased grandmother is coming to dinner, that the boogeyman is coming to get their stuff ~ its time to up the Seroquel (Haldol). The side effects are scary, but the positives outweigh the risk.

Think about it: You dream (hallucinate) that someone is after you and out the door and down the street you go. Or, you may grab a weapon. Hide? There's really no telling what I might do if I truly believed someone were after me. They may have bad luck....

I also never want to be on the receiving end of a psychotic episode, again. That was the day I had bad luck....

Since this symptom of Alzheimer's Dementia may surely cause some level of anxiety, (and it does for WB) Dr. Counce has added a new medicine to help with that. He's now cool as a cucumber, gentle as a kitten, amiable and laid back. Am hoping this cocktail will get us through the holidays.

Even though the first 10 days on the new medicines were a hot mess, I can see the both of us adjusting. When he gets an adjustment, we make adjustments.

This time last year, we suffered a set-back. We are still not certain what caused the mini-stroke, but it knocked him out of the Bapi clinical trial and had me scrambling for cover. It was only after his doctors changed the medicines that I had a change of heart. Those few days were so bad, I ordered up a social worker, a therapist of every flavor and an appointment with Medicaid before WB was ever released from the hospital.

Then, I took it all back.

There was an immediate flood of concern and assistance. There was rallying and a circling of the wagons. Then eventually, we settled back into the same routine with occasional visits from family and friends and the opportunity for WB to go and visit family in their homes ~ 

News flash on that, he's not going. He's pretty much not going anywhere for very long where I am not (going).

Throwing in the towel.

The paperwork was mailed off today and my fingers are crossed in hopes that he (or I) get the approval for respite care. Its really just another workaround. Working around WB and what we can do to help us help him without creating too much drama. Trying to make it easy, trying to slip it in without too much commotion. Will he sit with some unknown person for 8 hours so that I can run away once a week? Its a test, for sure. Generally when I'm away for just a few hours, I find him sitting in the garage waiting for me to pull the car in.

The work and documentation that goes into these applications will separate the men from the boys. No wonder so many people needing the services never get them, as you had better have kept every piece of paper that came into the house for at least 5 years.

"The Donut Hole", "The Gap", and now "The Look-Back" period for Medicaid. Somebody really needs to write a book on how to survive it.

So, most days I still continue to study, accepting that unless there is (more) bad luck for me with a mac truck, the odds that I will most likely survive my husband of nearly two decades are hardcore. Hard to fight change when it comes dosed out like this, but it could get really weird. With the kids grown and raising families of their own, my own tired self wonders which one of them will accommodate their mother in a travel trailer sporting a WiFi antenna in their back yard?  We'll see.

Now with a new social media account, WB sits with me at the computer with a purpose. He enjoys getting the occasional message from school chums who remember him. They tell the best stories and I answer back what he remembers. It is uncanny how sharp his memory still is dating back to the 1940's and 1950's.....just don't ask him to get a diet coke from the fridge downstairs as it may take him 3 tries to get it. Fifty years, no problem. Five minutes, big problem. Classic Alzheimer's, stealing his brain like a thief in the night, one plaque at a time.

Waving the white flag.

Trying to communicate WB's needs is exhausting as they change daily. We still have good days, we still have great days and some days are so 'off the wall' it is impossible to describe, so we rarely try. Totally subjective perhaps? "Read the blog", we say.

And the blog has taken on a life of its own. First friends and family followed, then others with the same white elephant in the room. Next came universities, hospitals and government agencies. From all over the world, readers are coming. This little rag has been picked up by Google and is being spread around the free Medical sites touted as 'best reads'. There are more and more invites to contribute to forums and I accept them. At this many years in, I suppose there really is a lot that I can offer.

Surrender. We are taking WB back to the beach.

But the criteria is tough. Directly on the beach (expensive), little to no stairs or elevators (condo).  So we need a house directly on the beach with no stairs at a bargain. We have to be able to see him and he has to see us or the train will leave the station. After many weeks of scratching and searching, it just fell out of the sky. Perfect location, perfect set-up and perfect price tag.

The girls (Kate, Taylor Paige, Meg) are on the prowl for the perfect tan and my stress-induced psoriasis could use the saltwater. And WB, well he could use the exercise. We cannot be sure if he will enjoy it, but I do know he will make me stop at the scuppernong patch to see his old friend, he will ask that I take the same back roads he traveled as a boy with his family, he will want me to play Kid Rock on the CD player, he will tell us again the stories about childhood summers spent on the same stretch of coastline.

Quiet please, we are not leaving until some time next week. But you cannot mention a word of this to him ~ else he'll be waiting in the passenger seat tomorrow morning with his Costa del Mar's on thinking we may leave without him.

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.

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.

Happy 65th Birthday Willie Bill

WB turns 65

WB is sitting patiently, waiting. Oh wait, that was a stretch....actually he has been pacing for over an hour. No. 1 son, Wade, has plans to take him to our local Bass Pro Shop this afternoon. The weather is nasty, but he has been in all week recovering from the little surgery on his face.

About the face. It was from the sun and doc says its gone. Still bandaged, he looks like a wooley-booger as the better way to handle this is to just not shave. We have real issues with shaving, keeping an electric shaver running is impossible and he's simply lost touch with touch. I normally try and shave his face, but it may not always happen on a daily basis.

So he is pacing and waiting. Today is his 65th birthday. Born in Birmingham on February 4, 1946 to J.W. and Helen Brantley. He was their first child of five and has survived both of his parents and one brother, who he misses in the worst way.

I am younger than WB and was born just a few months before he graduated from high school. His older children and I are close enough in age to have just been good friends, but the way I see it, they are all mine, yours, ours and theirs. I cannot stand the thought of any of the grandies calling me Rhonda. Approaching 20 years of marriage makes me a "Honey".

Digressing, the first news this morning for WB was "Happy Birthday" to which he asked, "uh-oh, how old am I?"

The early birthday fish tank is as clean and clear as a whistle. Only 3 fish have expired and the rest seem to be thriving. Bill's No. 1 Daughter, Susie, sent a gift card for fish, supplies and other aquarium necessities and No. 4 daughter, Katie Bug, will be taking him to buy fish some time this weekend. Michelle is baking his favorite strawberry cake and we will have steaks, salad, grits and au jus for dinner.

(To clear up the numbers on the kids ~ they are numbered in birth order, regardless of who birthed them)

To be brutally honest, I never imagined WB would still be at home with us this long post-diagnosis. Ditto for his doctors, all of them. Chock this up to excellent home care and quality of life. He may not believe he is experiencing the quality of life he expects, but it is something we all take very seriously.

And, except for him looking for his keys all day yesterday and washing his hair this morning with conditioner instead of shampoo, the extra dose of Seroquel has once again made a huge impact. I guess the program will be to add and add as things progress to stabilize the behavior. Dr Counce did say she could treat anything and she has certainly made a believer out of me.

With Wade coming, Michelle leaving for work and Kate traveling back from T-Town, I should get at  least 3-4 hours of alone time. Rest, not so much. To the war room I go.

 

War Room

Just Brantley


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.

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

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.

Foster's Second Visit

What a full week we had. Many visits, great food, outstanding fellowship.

Natalie makes it a priority to drop by and see her Uncle Bill when she is in town from Huntsville. He absolutely loves the babies and still aches with the loss several years ago of this child's grandfather, his beloved brother Jim 'Jimbo' Brantley.

Thanks Nat, for your commitment to stop by and share Foster with us. Next time, plan on staying awhile!

Foster and Great Uncle Bill

Meghan with Second Cousin Foster

You Can't Make This Up. Volume 1

Call it what you may, this just sucks. Posting this on facebook last week created a small storm. As many books that have been published on the subject matter, there is nothing I have read that prepares you for this. When I say "sucks", it is not what it does to me, but what AD does to the brain and a constant reminder of his willingness to do something and the difficulties he must be feeling.

Today, there remains a fine line between what WB can help you with, my insistence at keeping him active doing something, what he is willing to do and what I find everyday he has trouble with.

Every morning he makes the bed. Recently he has asked for assistance placing the sleeping pillows, decorative pillow and shams and some days they are simply all inside out and remain that way. WB also fetched the mail, but no longer remembers on his own. But, he is obsessed with taking out the kitchen trash. Sometimes it is full, other times he has just taken it out and gathers up a nearly empty bag. In my opinion, if he's willing to do it he can do it as much and as often as he chooses. Lately however, he is having troubles getting the bag on the inside of the can. 

Seeing this brought a smile to my face. 

There has been no manual, book or blog that prepares you for these things. They will explain the stages, somewhat prepare you for time frames, new medications, ways to cope, caregiver information and I have studied this extensively. Nowhere can I find "real" daily living with AD. 

Continuing to remind myself that life is like a box of chocolates, I am going to reach out to several I know on the editorial staff at the Birmingham News to find a ghost writer or publisher. 

Look out, Maria Shriver. You will never see this, as your father has been living in an assisted living facility for quite some time now. I certainly appreciate the awareness she is raising for Alzheimer's but feel that more of this in the ever-changing stages of dementia should be shared. 

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

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.