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.

HBO: Documentaries: The Alzheimer's Project: Alzheimer's Basics

What Is It?

Alzheimer's disease (AD) is an irreversible, progressive brain disease that slowly destroys memory and other thinking skills, and eventually even the ability to carry out the simplest tasks. Ultimately, the person with AD dies, often years earlier than he/she would have otherwise. In most people with AD, symptoms first appear after age 60. The brains of people with AD have an abundance of two abnormal structures—amyloid plaques and neurofibrillary tangles. A third characteristic change is the loss of connections between nerve cells (neurons) in the brain. Learn more.

Who Gets It?

Alzheimer's disease becomes more common as people get older. Today it affects more than 5.3 million Americans, according to estimates from the Alzheimer's Association. As the baby-boom generation moves through retirement, that number could soar to more than 11 million by 2040. One out of eight people age 65 or older has Alzheimer's. The number of people with the disease doubles for every 5-year age interval beyond age 65. Learn more.

Who Is At Risk?

Age is the best established risk factor for Alzheimer's. The genetic make-up inherited from parents may also influence risk of developing the disease, and when. Other non-genetic, environmental, or lifestyle factors might play a role in brain health and the development or prevention of Alzheimer's disease. Many of these can be controlled or mitigated, including physical activity, diet, control of chronic diseases, social engagement, and intellectual stimulation. Learn more.

How Can People Find Out If They Have It?

People who are concerned about a serious memory problem should talk with their doctor. The doctor may be able to diagnose the problem or make a referral to a specialist in neurology or geriatric psychiatry. Health care professionals who specialize in Alzheimer's can recommend ways to manage the problem or suggest treatment or services that might help. Learn more.

Can It Be Treated?

There is no cure for Alzheimer's disease, but current treatments focus on helping people maintain mental function, manage behavioral symptoms, and slow or delay symptoms. Four medications are approved by the U.S. Food and Drug Administration to treat AD. These drugs don't change the underlying disease process and may help only for a few months to a few years. Behavioral symptoms may accompany memory problems and can include sleeplessness, agitation, wandering, anxiety, anger, and depression. Scientists are studying new treatments to manage them. Treating behavioral symptoms often makes people with AD more comfortable and makes their care easier for caregivers. Learn more.

Who Else Is Affected?

There are nearly 10 million Americans providing 8.5 billion hours of unpaid care to people with Alzheimer's disease or other dementias - time valued at $94 billion, according to the Alzheimer's Association. Seventy percent of people with Alzheimer's live at home, cared for by family and friends. The largest group of family caregivers is spouses, followed by daughters, daughters-in-law, sons, siblings, and grandchildren. About three in five caregivers say their children aged 8 to 21 are involved in caring for a loved one with Alzheimer's disease, according to a 2008 Harris Interactive poll. In addition to the families and friends, our society as a whole is affected. Today, the direct costs to Medicare and Medicaid for care of people with Alzheimer's and other dementias and the indirect costs to business for employees who are caring for Alzheimer's are estimated at more than $148 billion annually. Learn more.

Can It Be Prevented?

No treatments or drugs have yet been proven to prevent or delay AD, but people can take some actions that are beneficial for healthy aging and that also might reduce the effect of possible risk factors for AD. You can exercise regularly, eat a healthy diet that is rich in fruits and vegetables, engage in social and intellectually stimulating activities, control type 2 diabetes, lower high blood pressure levels, lower high blood cholesterol levels, and maintain a healthy weight. These actions lower the risk of other diseases and help maintain and improve overall health and well-being, but will not necessarily prevent or delay AD in any one person. Even if these actions were eventually proven effective, they might not offset a person's individual genetic and other risk factors enough to prevent the development of AD. Learn more.

What's Being Done About It?

Thirty years ago, we knew very little about AD. Since then, scientific research - supported by the National Institute on Aging and other components of the National Institutes of Health, the Alzheimer's Association, and other organizations - has led to important advances in our knowledge about AD and to the development of promising new drugs and treatment strategies. Today, scientists are investigating many approaches to treat, prevent, or cure Alzheimer's, with 91 drugs in clinical trials as of 2008 and more in the pipeline awaiting FDA approval to enter human testing. Learn more.

How Can I Help?

Clinical trials to test new treatments and interventions are an essential part of AD research. At least 50,000 volunteers, both with and without Alzheimer's, are urgently needed to participate in more than 175 actively enrolling Alzheimer's disease trials and studies in the U.S. To reach that goal, at least half a million volunteers must be screened. To find out more, contact the National Institute on Aging's Alzheimer's Disease Education and Referral (ADEAR) Center at 1-800-438-4380 or at the website www.nia.nih.gov/alzheimers.

There are many ways to join the fight against Alzheimer's disease, such as participating in research, supporting people with the disease with donations of time, help, or money, and other activities. To find out more, you can contact the Alzheimer's Association, which invites the public to become "Alzheimer's Advocates," at 1-800-272-3900 or at the website www.alz.org.

http://www.seniorhomes.com/p/alzheimers-disease-prevention/

HBO: Documentaries: The Alzheimer's Project: Alzheimer's Basics

Say It Ain't So

Having purchased this book twice in two separate editions,  both have completely disappeared from this house. It was recommended to me immediately upon WB's diagnosis and probably prematurely. People can tell you what happens with AD patients, but you really do not realize it in it's entirety until you're living it or living with it. Unfortunately, Alzheimer's begins to define everything in your life and in the lives of everyone watching as it completely takes over.

Having never recommended The 36-Hour Day to friends and family before, now's your chance to pick up a used copy somewhere. It really does not matter which edition, the scope is the same.

Believing we can find humor to deflect reality is just my style so naturally I have been putting off the inevitable as if saying it out loud or writing it down would make it a more reliable statement of fact.

I picked up 'say it ain't so' from a friend of mine many years ago. After some remarkable comment,  she would always reply, "Say it ain't so" and I would laugh out loud. Now, I fear that saying it out loud will make it so, therefore I have been putting off having this conversation with myself , much less others. To write it must mean it is so, so here we go.....

WB's condition has taken another dive over the last couple of months. Normally, I do not recognize subtle day to day changes, but lately they have been overall significant.

Speech for him has been troublesome and for the last several years he has communicated in questions.

Up until just recently we could figure it out, read his mind or finish his sentences. With very limited two-way conversations these days, I am  keeping my sentences short and am presenting my questions to him that allow one word answers. The Alzheimer's is definitely damaging the pathways in his brain, now, making it difficult for WB to find the right words and to understand what we are saying. He regularly substitutes words for others and invents entirely new words altogether.

For a long while, WB would have days where he would call his friends from his cell phone to chat about this and that. The pattern is, he will call them and try to get a few words in and then hand the phone to me. His last call to one friend ended in great frustration. Recently, more frustrating for the friend than for WB when he shouted at me, "Rhonda, I just cannot understand what Billy Ray is saying!" Most days, I try and hide the phone.

Reminded by a friend of mine that it is some days like communicating with a toddler. Do not tell him we are going to do something or that we are expecting someone too soon or you will be queried on it non-stop until it happens.

I also remember being able to tell him to slow down and it will come. Now, it doesn't come at all.

At home, the girls and I are constantly transitioning to accommodate, and the car leaves the garage less and less. He seems content to loiter around shuffling his feet waiting on his next meal or snack. Where he would once watch a hunting and fishing show for hours, there is less interest and this must be that he is no longer processing it. 

Sitting down in the basement garage in front of the fan is something he has always enjoyed and it just hit me recently when going through old family photos that it was something his mother and daddy did as well. Finding his new respite on the back porch, I realize he is wanting to venture out, but is  still staying even closer to the back door.

That said, we will work next week on making the back porch more accommodating for him.  Existing furniture moved out, and something more comfortable moved in, perhaps fans and a new umbrella. Whatever it takes. We have already moved the bird bath out back and the new bird feeder is ready to hang.

WB is now living the 36-hour day ~ so we are going to just settle in and live it with him for awhile.

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.

Follow Me There.....

Roughly 10 days since Susie and Meghan left on their trek back to Boston, but it seems to me like it has been at least a month. They were in town for nearly a week and their visits normally include more family coming by to hang out, visit, play games, watch movies, grill out or whatever strikes a fancy. All but one of her children spent time here that week (Dalt and Gracie came in from Georgia and Maddie stopped in a couple of times). 

Lately, I have worked myself into a different attitude about it. I no longer make plans or try to work around anybody's schedule. We are here, company is always welcome, there is always something to eat and drink. Ever reluctant to call for reinforcements with an opinion that if you don't recognize there is a big elephant in the room sitting on my chest, so be it. WHOA, that was a powerful statement. Isn't that really what it is? If an elephant is sitting on your chest, you may feel trapped, anxious, short of breath, tired from the struggle of getting loose, abandoned, helpless, fear of the outcome ~

Digressing, Susie's first day with WB was a trip to the barber shop and grocery store to stock up on Meghan's rubbish requirements and ice-cream for her Big Daddy. Not a full-on disaster, but enough to cause a crying jag for Susie in the hall bath upon their return. I was pretty sure all along Susie was connecting with me on the level of her dad's impairment, however, now I know she understands in just a few short hours what we go through 24 hours a day.

Additionally, she has offered to come in and stay with WB the week I had planned to travel to Costa Rica on vacation. A solo trip, with perhaps a girlfriend or two, I had great plans to lolly gag around not worrying about much of anything but have still been unable to pull the trigger on the ticket purchase. Not that it won't be grand, as I will be pampered by great friends. Its the fallout I fear.

Getting WB motivated to do much of anything is a trying proposition. He so needs the exercise but is essentially helpless. Just last week, I sent him outside to rake leaves from the flower beds. Walking out to check on him in less than an hour, he is sprawled out on the lawn, on his back, taking a nap. All the while, Michelle (less than two weeks post-surgery on her foot) was balancing herself with a crutch and a rake trying to complete the task for him. Classic.

And, as much as I try and monitor the phone activity, he always manages to sneak around and find his cell phone. Too much news from old buddies or his inability to communicate creates additional stress. So, when he called Spud on Monday afternoon, he learned that Peggy Brantley had passed away and within minutes he could not remember when relating the news to me who's funeral Spud was headed to.

Downhill from there, he woke this morning not knowing where he was. Everybody does this at some time and one may not find it unusual, except that this morning he was lost for about 15 minutes. Even after seeing me and me talking to him, he was unsteady. Even after admitting to me he knew where he was, I am confident he was only telling me that because he recognized the hysteria in my voice.

From there he cried. Sobbed, actually. Until about 11:00 am when by the grace of God, an old friend came by to visit. A few crying episodes during the visit, but nothing since. Fingers crossed that this was just a fluke and praying that this is not the beginning of what we have feared the most.

Why does he cry? Because he still has enough capacity to understand he is losing his abilities and  it is crushing him. He has little understanding at this point that it is going to get worse and no understanding whatsoever of where this disease it going to take him. Long gone are his abilities to understand its effect/affect on those of us on standby. Helpless.

I am his person and I have touted since the beginning that this is mine to navigate until he no longer knows who I am. For a short time this morning, he knew nothing. Thinking of saddling up for another appointment with Dr. Counce and simultaneously pondering ~ there is probably not much in her arsenal to remedy this.

If you subscribe to this diatribe from afar and have experience with this stage of Alzheimer's, we welcome your advise and comments. If you know WB and are a close friend, relative, son, daughter or member of his extended family, this is your smoke signal. Today, I have few regrets with the level of care I demand that he receive. Rattled, yes. But my conscious is clean.

As a side note, I am posting the theme song from Palin's Alaska. I am not a huge fan, but a fan of Third Day and their inspirational music. The link takes you to a YouTube URL to hear. You can mute my play list below to eliminate any conflict. Enjoy ~ JustBrantley

FOLLOW ME THERE 

Song Lyrics

You need a place where you can find some shelter
Follow me there, follow me there
You want a hand to hold, someone to help you
Follow me there, come on, follow me there

Where love, like a river, flows
Peace like you’ve never known
And joy never ending lives
A place where faith can find
Hope that will never die
Follow me there, come on, follow me there

You need a place to be your sanctuary
Follow me there, come on, follow me there
Where you can lay down all those burdens you carry
Follow me there, come on, follow me there

Where the lost can find salvation
And the lonely finds a friend
Where the sinner finds forgiveness
Won’t you follow me there
Won’t you follow me there.

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.

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

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

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

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

Things he can no longer manage:

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


Things he manages pretty well......

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

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

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

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

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

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

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

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

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

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

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

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

Stage 3:

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

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

Stage 4:

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

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

Stage 5:

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

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

Stage 6:

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

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

Stage 7:

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

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

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!