The New Facts of Life

I wonder where they were?

We took APR off his Alzheimer's meds  last week.  My mother has been saying how dull he looks, how he can barely make it through breakfast without falling asleep.  It's such a problem that it is difficult to do anything with him in the mornings.  Right after breakfast, he must nap.  Then he dresses, naps again.

I don't mind admitting I had a meltdown over the cost of the medication.  Our cost, for a 30 day supply of one of is medications was nearly $375!  No way I could afford it that day.  A few weeks earlier, my mother's cardiologist had a fit when he discovered that Walgreens was giving her the most expensive generic, the one he did not order, in order to make more money.  They were charging $75 for something that should be $18!   After that, you think I'm going to trust them?

That night, I started doing a little digging.  I discovered that the pharma company was big into meds for various psych disorders and ADHD.  And - the med he was taking for Alz. was being used to treat hyperactive kids.  I started researching and discovered it was primarily used for control, drugging, and basically containing the patient.

Forget that. 

Within three days his eyes were brighter.  Sure, he's a little hyper, but he's engaged with the world, in his own little orbit.  Once in awhile his orbit is the same as ours.  But - he doesn't have that vacant look about him. 

Just what were we doing to him, anyway?

All rights reserved, SJ Reidhead

Alzheimer's Disease and Family Finances

Rachel & APR

On Friday, when I went to pick up my father's monthly prescription of Namenda, for the first time, ever, I was unable to pay for his medication. A three month's supply, from Walgreens is nearly $600. For a 30 day supply of the medication, it was about $120. Since the parents only had $120 in cash to spend until the 5th of November, and they do need to eat, I was unable to pay for it. Oh, I could have used a credit card, but I wasn't sure about the balance, so I went into a panic. The bottom line is that he was without his Alzheimer's medication. One of the reasons we pay so much, as consumers, is so that the big companies can make big bucks, with their politicians getting big bucks for the process of destroying us, financially. If my parents were alone in this situation, I could just say, well, that's the breaks. But, they aren't. Their situation is being repeated, a million fold, all over this country. Frankly, I don't see how anyone but the wealthy can deal with this disease. When you realize how much medication, that isn't generic yet, is costing, it is a financial disaster. What does a family do? No, It was wasn't that much of a national emergency. BUT.... after being ripped off for several years, by Walgreens, over my mother's cardiac medication, I was in no mood to argue. They were going to give him a 3 month's supply - for nearly $600! No way, not after being scammed on one med. I wanted to find out if I could get a generic version of what he was taking, and how much other chains were charging. Walgreens, like most chains, can't be trusted all that much. I was reading, somewhere that they are doing about a 400% mark-up with their medications. The cardiac medication my mother was taking was being so grossly over-charged, her physician (with whom I don't get along - I think he's a you know what, but he saved her life, so ...) agreed with me. He called the pharm and told them off. The problem with medications for Alzheimer's is that we just don't know if it does any good, or not. From what I can tell, donepezil may be better. From what I can tell, Namenda may be more of a sedative than anything else. What Namenda does do is work with the Glutamate receptor in the brain, which is responsible for muscle tone. Anyone who works with Alzheimer's patients knows that muscle tone is a very big deal. The very first sign of someone on Alzheimer's is spacial. A person in the early stages has difficulty getting up from a table. It is the earliest visible sign. Then comes movement, doing stairs, and walking up and down stairs in a strange way. Those of us watching things knows there is a connection between lack of sugar in the system and impairment. No matter how much medical research is done, they are still learning about the disease.

"...We all know about the medications available – there are the FDA approved medication treatments basically in two groups: the so-called cholinesterase inhibitors, such as Donepezil (Aricept), Galantamine (Reminyl, Razadyne), and Rivastigmine (Exelon). And then there are the “NMDA receptor antagonists,” of which there is one medication currently approved and on the market, Memantine (e.g., Namenda).

Basically all of these medications can help, but they are only treatments. Generally a patient who is helped but Aricept or Namenda can expect maybe 6 months where the progression of their dementia (as Alzheimers is a disease of progressive cognitive decline) is effectively halted. In rare cases some improvement in cognitive functioning can occur. However, these drugs all treat the symptom of the disease (e.g., the cognitive dysfunction) and they do not treat the underlying issue – the underlying brain damage that causes the cognitive deficits in the first place. Also, these drugs (like all drugs) have side effects...."

I've been online, looking for a generic for the medication. There is none, not yet (at least not in the US). Don't worry, though, Forest Labs, which makes the product is doing very, very well, their profits way ahead of their projections with a 2nd quarter way ahead of projections. Not to worry, though, Namenda is not scheduled to go generic until 2015. By that time, my family will, unless a miracle happens, have lost everything to this damn disease. But, don't feel sorry for Forest labs, their earnings (profits) on Namenda were twice what they had projected. Isn't that special? In 2010, Namenda alone earned the company a $700 million profit. It's much higher today. Want to know what really makes me mad about this? Well, Forest Laboratories is one of the worst offenders in moving their profits off-shore, so they don't need to pay taxes. They get away with ripping off the American taxpayer, so we're basically giving them corporate welfare. Oh, but they're making a profit and profit is the name of the game, screw the little person. Nothing matters but big corporates getting their fair share of our life's blood. Never mind that, over the years, my parents have paid millions of dollars in taxes. But - they're just little people, watching companies like Forest literally break them into nothing, so they can make a billion here and a billion there. What is so fascinating is that, in the grand scheme of things, Forest Labs donates primarily to Democrats, and doesn't give that much, at all. They donate primarily to NY Dems. They're also in the cross-hairs for their offshore tax dodges. Do you know what it's like to be forced to tell your mother that we can't afford my father's medication - or rather I was so pissed with Walgreens that I wasn't going to get it? Never in my life did I think I would be in this position. We're at the point in life, thinks to the deprivations of Alzheimer's on the family finances, that we're now choosing between food, medication, utilities, and property taxes. Forget the little luxuries like gas, car repairs, or the parents' getting their furnace repaired. There's no money for that and their medications - thanks to being ripped-off. Walgreens has been violating cardiologist's orders and selling my mother their most expensive generic for medication she needs to stay alive. She could get the meds for about $15 for a 30 day supply, but they've been charging her $75 to $85, violating a few laws in the process. She would still be paying the higher price if I'd not started agitating. The cardiologist told off the pharmacy. So, now they're sticking it to us, the other way. That's at least $70 a month. Multiply that by 12 and you get the picture. The questions is, how much more are they overcharging us. One of the reasons this is such a problem is because of Alzheimer's Disease. Not only does it destroy a family, emotionally, Alzheimer's ruins a family, financially. As a rule of thumb, just basically figure, if you're keeping a person at home, the out of pocket expenses are going to be about $1000 a month for medical and additional up-keep. That's $12,000 a year. When a person is getting about $1000 a month in social security, you can see the problem. The disaster has already occurred. One of the ways you learn that the person in your family, usually a parent, has already passed go and the disaster has occurred is when they refuse to allow you to help with the finances, or get nasty about it. Then, there will be a big financial spree - spending money that is completely out of character. My father blew $250,000 in a three month period - and we did not catch it. When I would ask, he would get nasty. BINGO - that's when you demand they see someone about Alzheimer's. Combine the physical symptoms of not being able to get up from a table, properly, going up and down the stairs in a strange way, and the spending, nastiness about finances, and you have a 5 year head start on the real disease setting in - if you are lucky, and know what to look for. We did not. Ergo, life now is financial hell. Predators have a way of sensing the problem before the family has been devastated, emotionally and financially. And - so, we're stuck. Thanks to this obscenely selfish disease, my parents, who are in reduced circumstances with cash flow. They are no different from millions of other senior citizens who have had financial problems due, primarily to the financial crash of 2008. I know of so many other seniors, people who were once comfortable, their lives all planned, barely making it. Some, like my parents, have problems due to Alzheimer's. Others, like numerous friends, have lost due to brokers, stock failures, and not being able to keep up with all the changes in the markets, fast enough. These are good men and women who worked hard, paid by the rules, paid their taxes, and did everything the right way. They're now wondering where they are going to come up with the money to pay for heating oil, how to stay warm, and keep food on the table. Forget that they once had steak several times a week, now, they can't even afford chicken! It's sad, watching people who had it all, living hand to mouth, bravely putting up a front, not bothering to even say what is hurting them. They've been pushed aside because they are nothing but fodder for the ultra wealthy. They have been betrayed by Republican Congressmen and Senators they elected, knowing they would stand up for them, and for their issues. Instead, they only support the ultra wealthy. That's the real problem in this country. We have become a nation that worships the false god of wealth, gained at any cost. There is nothing wrong with wealth. I aspire to it on a daily basis. There is something wrong, though, when it is the worship of those who are wealthy, to the detriment of everyone else. There is nothing wrong with a pharmaceutical company making a 100% profit. What is immoral though, is hiding that money off shore so they can benefit from our largesse and grants. If these guys paid their regular taxes, fine by me. In the meantime, good people who have always done what is right, paid their taxes on time and been upstanding members of the community are at the brink of starvation. What's wrong with this picture? Fast forward three days. My father has not had the Namenda since Friday evening. On Sunday morning, he came out for breakfast, quite chipper. My mother wasn't feeling well, so she went back to bed for awhile. He cleaned the kitchen and put things up where they belonged! Last week she had told me he was so far gone, he couldn't even do this. Every morning, after taking his medication, he would sleep all morning. There was no nap, he was wide awake, reading a cowboy novel. He had a Sunday afternoon nap, took a bath, cleaned himself up, really well, and had a good day. He hasn't been doing this for months. We've made a family decision to keep him off the Namenda for awhile and see what happens. He was happier today. His eyes looked better. His attitude was better. We're now all upset because of what we may have been doing to him, all in the name of trying to help. I'm so glad I had that meltdown at Walgreens!

The Battle of Tortillia (Chip) Flats

Sarah Catherine Garland 11/16/2012

One of the truly annoying, and eventually terribly unhappy parts of Alzheimer's, when you get into late Stage 4, is the fact that the person who has it, regresses to the stage of a 4 year old - a very spoiled, annoying, willful 4 year old.   It's a very selfish disease.  The sufferer becomes, like a toddler, completely self centered. 

Case in point:  Yesterday we were having lunch at Comel, one of the best Mexican eateries I've ever found.  My father was double dipping his salsa.  My mother caught him.  She told him not to do it, that he new better.

He threw his chip down on the table, leaned back, arms folded across his chest.  "Well, I just won't eat another one, if that's the way you're going to treat me."

She was going to relent. I told her not to. He didn't have another chip, unless he thought we weren't watching, then he double dipped!

My friend Sharon was telling me about Nick, who is much farther along than APR.  She said he would drive her crazy doing things like that.  Her children never did these things, they were too well behaved. 

FYI:  He ate his entire meal.

All rights reserved, SJ Reidhead

Table for Six

At Least Sadie Is Happy - March 2013

We made an interesting discovery today.  The parents have been married 64 years today!  I can't imagine putting up with anyone that long, trust me.  Cathy and Juan are here.  We went to the Great Wall for dinner, with Nana entertaining the parents.  Our mother had been having a rough day.  I called Nana, who is such a wonderful friends.  She was there, the whole time.  Ryan made one of my mother's favorite dishes.  Glenn stopped by to visit.  They just made a rough day so much better. 

Milestones like this getting rough, bittersweet.  We know that next year, APR is not going to be all that much with us, mentally.  It is like now, we know that every holiday will either be the last, physically or mentally.  It's rough, but we're also fortunate in that we know the score, to enjoy and treasure every single minute.

APR has always sat at the head of the table.  So, that's where we put him tonight.  He couldn't cope, was out of it.  So, now we put him in the middle of things.  He does better.  We do, though need to keep an eye on our glasses, because he has a tendency to drink out of anything near, and we keep an eye on the chips and salsa. He's double dipping now, then denying it, knowing exactly what he's doing!

All rights reserved, SJ Reidhead

Lost in Space

It Is Shocking How Quickly He Has Changed

My mother called this evening.  APR managed to get lost in the house.  And, their house is so darn small.  I just realized the problems my mother would be having if they were still living in South Carolina.  It would be a nightmare.  If they had a larger house, it would be a nightmare, just trying to keep up with him.  Then he couldn't find the bathroom, was lost looking for it.

She was so sad.  I don't blame her.  The other day I realized that those of us dealing with Alzheimer's in the family handle things so much differently than people dealing with things like cancer.  We're completely fatalistic, knowing there is no hope, so why bother with false hope?  You do what you can do, and deal with it.  I'm noticing that people I know who have elderly parents with cancer seem to hold on to so many things - just hoping against hope.  It is starting to dawn on me that while it is long, drawn out, and heart-breaking, Alzheimer's in a way, is a kinder disease - to the family.

Once we realize what we are dealing with, and face it, oh, it's painful. It is miserable and tragic, but we know what the score is.  There's no 10% or 20% or 50-50%.  It is all slap in the face, deal with it.  Sure, you watch the person you love becoming a shell of what they once were, but, in our case, my father is not in pain.  He's really not suffering.  He's like an annoying four year old.  You see his mind going a little more, every day, but we know it is going to happen.  There's no let's try this and let's try that.  It's just, that's life with Alzheimer's.  I think I prefer it to false hope.

And - so you find reasons to seek the humor of the situation.  We are trying to find my father's 'stash'.  It is a common problem, especially with men who have the disease.  It is reaching the point where friends are now getting into the spirit of what is truly a scavenger hunt.  "Have you looked under the sofa where he sits and reads?" This sort of thing.

The shampoo still has not been found.

All rights reserved, SJ Reidhead

A Tear Jerker

Grandy, My Mother, Charlie, and APR

 

 

I don't think I've ever linked to a blog post, until now.  Mike Clelland wrote a piece about his mother, who recently lost her battle with Alzheimer's.  It was quite a beautiful and moving story, very unexpected.  He detailed something we are dealing with now, with APR.  His tale is about how his mother handled the loss of his father. 

"...My father, Alexander Clelland, died of a stroke just a little over a year ago, and my mother still thought he was alive. She did beautifully at his funeral, and in that moment she seemed to understand that he was gone. But after that it just felt cruel to ever bring it up. When she would ask, Where’s your father? We would just calmly tell her that he was out getting his hair cut. ..."

I know all about this, unfortunately.  APR is well into Stage 4, probably the late stages.  We're fortunate in that he's still doing quite well, physically.  To date, there is not as much of the problem with bathroom issues - yet.  His problems are more mental than physical.  He's with it maybe 40% of the time.  That is a huge drop since early in the summer.  I think things are harder on my mother, dealing the unending questions.  I realized that I don't have the patience I should have.  I never wanted children because I just don't like dealing with little kids. This is where we are now.  The questions are like a 4 or 5 year old, constant, repeated, incessant.  

APR spends a lot of time in Minnesota.  He's fighting World War II (in the Army for some strange reason).  He talks to his father, frequently.  And then there are times where it just don't make sense.  My mother has had to cut back on what he watches on television. No news, violence, or weather.  He thinks the weather reports are local. 

The worst part - for my mother - is dealing with the incessant demands to know why his parents aren't having dinner with us.  Where are they?  Have we talked to Ma today?  Will his father be spending the night.  Have we checked on my grandparents?  Where is my sister?  

And so forth and so on. 

After one time telling him that his brother was dead, and the pain I saw in his eyes, I just lie to him.  It's easier - on him.

All rights reserved, SJ Reidhead

A Bittersweet Birthday

My father turns 89 today. I don't even know if he realizes that he has reached an age that few men in his family achieve, other than his Uncle John and Uncle Dave. Most men in his family have a tendency to stroke out in their early 70s. We caught the strokes when they began occurring. If medical science had been what it was today, his father would not have died so young. He's heading into his 90s today. We wonder if he will ever become 90. My father has Alzheimer's Disease. All my life, he has been the Birthday Boy. His birthday was always followed by Father's Day, thus requiring a week long celebration of him. It was all in good clean fun. Every year there was a huge picnic, with no fewer than 50 guests. The menu was always the same: BBQ, corn, scalloped potatoes, baked beans, garlic bread, cole slaw, and the chocolate cake with white icing that my mother has always made. [caption id="attachment_35175" align="alignleft" width="148"] My Father & His Brother
(this is my favorite photo)[/caption] Always.... In May, of 2006, while my mother lay in ICU, hooked up to everything, after suffering from massive heart failure, my father sat there, wondering what we were going to do about his birthday party. I was a little annoyed at the time, but looking back, I should have realized something was wrong. That's the problem with our parents, the elderly and Alzheimer's Disease. We don't want to see the warning signs. We tell ourselves that uncharacteristic chattyness is normal. We fob off the memory lapses as old age. We ignore the lost keys or wallet by saying he always did it. Then you notice that something is terribly wrong with the family finances - and it is too late. What no one bothers to tell you about Alzheimer's Disease is that there are very specific physical markers, signs, that, when put into context with the little things, is a flashing stop light! It's all about physical coordination. The ability to stand up after sitting at a table is one of the earliest signs of the disease. The mind and body just can't put it together. My father has had difficulties standing up after sitting at a table for almost a decade. He also had a strange way of going up and down stairs, with the back of his heel rubbing the back of the step. It was weird. He couldn't explain it, and he was extremely lucid, with no other real symptoms other than becoming a little confused with directions, and constantly losing his wallet (while we were traveling). If I had known then, what I know now, things would be a heck of a lot different for our family. We could have caught the lying scumbag of a broker who cheated him out of over half a million bucks, cold cash. We could have caught the man's assistant when she appropriated a quarter of a million in cash for her own personal use. But, we didn't know to watch - I didn't know to watch out for the finances. That is the worst part of Alzheimer's Disease, not catching it in time. If you do, early enough, and start B-12 injections every three weeks, there is a 46% chance you can either slow the development of the disease or even stop it in its tracks. I swear we managed to slow the development of the disease by several years with the injections. He's just now going into early Stage 5. [caption id="attachment_35177" align="alignleft" width="300"] 2011[/caption] It's so simple. All that is needed is a special color imaging CT scan that literally layers the brain. It can catch the development of the disease a good 10 to 15 years before symptoms began showing. This is critical in stopping and slowing the onset of the disease. Having lived with this for three years, now, I swear the worst part of Alzheimer's Disease is the fear that someone you know has it, and then avoiding the diagnosis of it, until it is too late. There's going to be hope in the future. By the time we Baby Boomers are entering that phase of our lives, there are going to be exciting new treatments. We already know enough, that, if you have a genetic pre-disposition to the disease (and only about 6% of the population does), you have hope. You can't fight it if you remain ignorant. [caption id="attachment_35178" align="alignright" width="300"] 2010[/caption] My father's is the only case we can find in our family. I've been doing genealogy for nearly 25 years, and have his family literally back to Adam on all but his great-grandmother Miller's side. There is no sign of it, at all. My father had the first diagnosed case of Lyme Disease in South Carolina. That was the year before my oldest niece, Rachel, was born. There are now major indicators that those who have had Lyme Disease will most likely contract Alzheimer's. The indicators are so strong, I have a friend whose 23 year old daughter is already on the B-12 injections and the anti-Alzheimer's medications. There are such stupid assumptions out there about the causes of the disease. It is not caused by:

• Obesity
• Diabetes
• Blood pressure
• Heart disease
• Lack of exercise
• Poor diet

[caption id="attachment_35179" align="alignleft" width="300"] 1952[/caption] I think we're probably going to find that there is a chemical component to the disease, the same way there are now indicators that some cases of Parkinson's Disease may be caused by exposure to certain agricultural and petro chemical components. It is also caused by brain injuries. I hear people lament the fact that their loved one has the disease, how they hate it. I don't hate it. The real problem we have with Alzheimer's Disease is approaching it like it is some shameful condition to be hidden with the sufferer put away in an institution, to simply wait to fall, break a hip, and die. It's a disease, no different from cancer. People who have it should not be locked-up, unless they are violent. My father, when told that he had it, said he wanted to go out and do things until he started drooling. So, he goes out and does things. There is one specific restaurant here in town that he likes. The meal process now takes 2 hours. He would once wolf down his food. Now it is agony, sitting there, putting up with the slow pace. If a server takes our plates, he will stop eating. This has led for the most tense moments we've had with the disease. You keep your plate, and pretend to still be eating. [caption id="attachment_35180" align="alignright" width="300"] No, that's my sister, not Jan Brady![/caption] My sister, her 3 children, and the baby arrived on Monday. We will all be together this one last time. That's the best part of this. We know the end is coming. We know that this is the last year he can easily and readily participate in his birthday. We have the blessing of knowing that every moment counts. There will be lots and lots of photos. I'll be castigated for not downloading the last set of baby photos out of my camera. (I found a way to get around that one - saving them for Rachel to put in her lap-top). We're lucky. We know what is coming. You count your blessings, and know that it's not going to get any easier. My mother is the one who is having the difficult time of things. She's the one living with it, day in and day out. I think she's learning how to laugh - I hope. [caption id="attachment_35181" align="alignleft" width="232"] Heading to the South Pacific[/caption] It's not easy, but neither would be cancer. I swear I don't know what the difference is with this and any other debilitating disease. There is no reason for shame, or to hide my father from the world. He interacts so well with people. It stimulates his brain. He is happy. I'm not going to take that away from him. Funny, I'm writing this a few days ahead of time so I can do other things. I'm not even crying about it. The difference in his appearance is startling. The photo with him in the red shirt was taken on the parent's 60th, 2 years ago. He's now developing that look of what is going on here. It's sad. Then, he comes up with something hilarious, showing us that he's still there. We know what tomorrow brings. We know this will be his last real birthday. Very few families are blessed enough to know to treasure that last time. We are. All rights reserved, SJ Reidhead

Alzheimer's 101: Ignore This Disease At Your Own Peril

August 2012 @ White Sands

Like the vast majority of Americans, these past few years, The Pink Flamingo has been dealing with a major financial crises, the worst in my life.  No, I didn't cause it.  It was completely unanticipated and struck without warning - almost. Yes, there were warnings, but like so many other people in my position, I ignored those warnings. I am learning most of us do when we're dealing with Alzheimer's Disease and the ruin of and disaster it causes in a person's life. 

The ruin it causes, the disasters that the disease often causes does not come from the disease, but from ignoring the disease.  The disasters come from predators who are out there, preying on the elderly, the trusting, and those who have families who are choosing to ignore the symptoms of the disease and the societal problem of an entitled group of men and women who legally can get away with it.

Looking back on things, it is obvious that my father had symptoms of the disease nearly a decade ago - symptoms we ignored because he always lost thing.  He had a tendency to take a short-cut when traveling.  A ship's navigator in the South Pacific during WWII, he can barely read a map at times. Unfortunately, the financial predators have a profile, and go for the kill.  It has taken three years of detective work (on again and off again, of course) for his accountant to agree with me, that close to a million dollars has managed to disappear - without a trace.  No, my father did not do it.  we know who did.  I can't prove it because my trusting, honest father, who knew that a quarter of a million dollars had gone astray, sought out the very men and women who were scamming him, and asked for their help.  He left all of his financial records with them, ignoring my pleas that he let me keep them.

That's Alzheimer's Disease.

It is the reason we must be diligent about our parents, and the elderly, not to allow them to be scammed. There are things a person can do, but the problem is that parents, especially if they are staring to have some cognitive problems, don't want help.  That alone should be a flashing hot pink neon sign that things are not good.  There will be a time when you must take control.  No, it isn't fun.  It's traumatic, but if you don't, they could lose everything.




All rights reserved, SJ Reidhead

A Little Dab Will Do You

I think my mother looks better today than then.

My mother called:  Guess what your father used to brush his teeth?
Me:  I have no idea.
My mother:  Desitin

She called another day:  Guess what your father was going to use to shampoo his hair?
Me:  I have no idea.
My mother:  Lysol Toilet Bowl cleaner!

He puts his deodorant on his back.
The medicine cabinet in his bath has been emptied of all but toothbrush and toothpaste.

The razor is locked up. My nephew bought him an electric one for his birthday.  He put it up.  Took nearly a month to find it.  

Shampoo is now placed in certain places in the bath.
All cabinets in his bathroom have been locked.

My mother called:  Guess where your father put my new shampoo?
Me:  I have no idea.
My mother:  That's the problem, neither do I.
The shampoo has been missing for six weeks.

He has a stash, somewhere.  In it, if we ever find it, will be her diamond wedding band.  Yes - he took that.  He's not taking the remotes like some do.  He takes little things, putting them up.  She's missing 3 pair of his gray, dress, summer slacks.

He has shampooed his hair in Desitin.
I think he also used toothpaste one time.

Yes, it is heartbreaking.  But, if you don't laugh, you lose your mind.  It's rather like Aunt Eva and the chicken bone she tried to get my sister to eat.  Aunt Eva was in her eighties, living in Middletown, KY.  My sister was maybe 7. 

All rights reserved, SJ Reidhead

The Battle of Pancake Flats!

APR and Rums

We were having an early supper at Jorges. My mother wasn't all that hungry.  She decided to let APR order his favorite meal, the Big Jorge Breakfast"

• 2 pancakes
• 2 eggs
•  hashbrowns
• 2 link sausage
• 2 slices bacon
• large slice ham

She was going to eat the pancakes. 

APR loves their pancakes.  When she took the plate with the pancakes he was furious to the point where he refused to eat the rest of his meal.  She gave the pancakes back to him, but she's been eating on them.  She ordered more pancakes for him.  That didn't work!

The moral of the story, don't touch his pancakes!  It has become a standard joke at the little restaurant.  One of the servers will laugh.  "Don't you dare eat his pancakes!" when he orders that specific meal.

All rights reserved, SJ Reidhead

After the Crash

Christmas 2012 Mimosa Time!

One of the first things they tell you when dealing with Alzheimer's Disease is that the primary caregiver is the person most in danger of having a serious physical and emotional problem.  We've been trying to warn my mother about this  - for ages.  When dealing with my mother, forget it!  This has been an avoidable disaster waiting to happen, like model trains set to wreck.

She hovers over my father, who is still in early  Stage 4.  He has his moments, especially late in the afternoon.  Part of it is Alzheimer's and part of it is the fact that he is a very exhausted 89 years old.  When he gets tired, his condition gets worse.  She waits on him hand and foot.  Does everything for him, and it isn't necessary.  This morning, when I was working with her, he cleaned the entire kitchen, spotless. He was a little difficult at the hospital, but I'm learning how to handle it.  (Keep food in him).

My mother is worried.  She is grieving.  They will be married 63  years in August.  She is exhausted. She won't reach out to her friends, who would love to help.  She is so tired, she thinks if anyone comes to visit, she will be required to serve coffee, food, which isn't true.  It's impossible to get him to church on Sunday AM.

At least today, I think we finally managed to get her to say uncle about having someone come in every day, for just a few hours.  She needs the interaction.  So does he.  My father does so much better when he has people to visit with.  It makes all the difference in the world.

Her health isn't all that good.  We're going to get the results of breathing tests from her cardiologist tomorrow. (FYI, her pacemaker is doing great).  Her blood work-up was good, save for the blood sugar. That's getting ahead of myself.

She won't let anyone help her.  She is isolating herself from friends.  It's just classic.  She can do it all herself.  She can't.  So, now, she's not eating.  That's a problem anyway.  At night, now, she's too tired to cook, isn't eating, going to bed without eating, jumping out of bed in AM, and crashing.  This morning the crash was literal.  She fell, hit her hand on her nightstand.  Called me about 8:AM.  (FYI, I arrived home this PM at 7:30 - which tells you about my day).

The day after Christmas she passed out, hit the back of her head, went to the ER.  Did the same thing Wednesday morning.  We're finally piecing things together.  Her BP goes low.  She's not eating, has a blood sugar crash, has breathing problems and nearly passes out.

Today, they caught the blood sugar problem - finally!  She's to have 3 meals a day and keep track of everything, which she won't do.  I was told if she doesn't take care of herself, when it comes to eating, then she must have someone with her 24/7.

Her speech was garbled.  She had a TIA around 2002 or so.  This was a little different.  They did a CT scan, and think that she may have had one.  BUT  - it could have been the blood sugar crash.  We just don't know.

They let her out of the ER about 5PM or so, after a long day and many tests.  Everything points to a blood sugar problem, which is what I have been saying for 7 years, but does anyone listen to me?

I forced her to get a fried chicken thingie at Sonic.  She ate my father's ice cream whatever on the way home.  I left there a little after 7PM.  She called at 9PM, sounding great!

This food thingie is going to make me crazy!  I am going to force her to deal with friends and people who care about her.  It's a nasty thing to do, but it is for her own good - as well as mine!  I felt sorriest for my sister, who was in Memphis, following all of this by phone.

My next battle is getting her to allow her friends and people who care, back into her life.  We have so many good friends, people who care, that she makes me crazy isolating herself.


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Someone's Talking Dirty on the Phone

I Was On the Way!

My mother called.  She discovered my father's cell phone in the washing machine, quite clean.  She's not sure how it managed to show up there, but that's not the point.  She asked APR how it came to be in the washing machine.  "I don't know.  I guess someone was talking dirty on it and it needed to be washed!"

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Who's On First?

Don't Trust The Man With The Sled!

This is a post I've been working on for about a week.  Frankly, I don't know's on third!  That's about how it is this week.  Do you go chronologically or by subject matter?  It has been interesting, that's for sure.  Late Wednesday night, my mother finally broke down and began crying. We've been waiting for that. 

Ten days ago my father lost his wallet.  I went down that Wednesday afternoon to help my mother look for it, and deliver medication.  We looked in every single drawer in the house.  I specifically looked in the hutch drawer where her cocktail stirrers and gadgets are kept - twice.  My mother and Maggie have checked that drawer, repeatedly.  My mother has looked in it every day.  On Monday morning she found the wallet in it.

This morning she called.  He'd lost his wallet - again!  At least it is in the house, and I have copies of everything that is in it. My friend, Sharon, thinks he has a stash location.  He probably does.  I wouldn't be surprised to find my mothers' missing diamond there, also!

We're dealing with blood pressure that is going up and down.  It could be the meds.  He has an appointment in a few days.

His bridge broke.  Got that fixed.

His new hearing aides aren't working!

It's just one thing after another.  It's obvious we're into the early part of Stage 4.  The poor thing is now searching, constantly, for his brother.  He calls my cell, thinking that it belongs to my cousin, Sarah. I don't know what to tell him, so I try to let it go, changing the subject.  On the way back from Las Cruces on Friday, he kept trying to locate his brother.  He kept wondering where Nana and Grandy were.  Should we have left his mother in the hospital, alone.

He did great at lunch, but he ate eggplant parm, so that we didn't have the problems we do with complex carbs.  We tanked him up on a frap at Starbucks.  He did great okay, coming home, except for trying to call his brother.

He's also traveling.

We've taking him off several of his medications.  The problem we're discovering is that quite often medications don't work right with Alzheimer's.  Most doctors don't realize this, nor do pharmacists.  So, now, we need to check everything.



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That's Life

Nana & Grandy at Goldie & Jimmy's in Middletown

We have faced the fact that we're dealing with the onset of Stage IV Alzheimer's Disease.  We do have one problem and that's trying to figure out how much comprehension that is missing is due to the disease or the fact that the third set of hearing aids may not be working as good as the first ones, or the second ones.  This time we had to cough up about $250 a  year for insurance on the blasted things.

Right, now, the best way to describe the situation is like dealing with Grandy's dementia.  The short term memory is not firing on all thrusters.  Fortunately, he's stopped asking about his brother and parents. I don't know how long that is going to ask.  What he does ask, on a daily basis:

1.  Are all the taxes paid?
2.  Is there enough money in the bank?
3.  Did you go to the post office today?
4.  Was there any mail?
5.  Is there oil and anti-freeze in everything?
6.  Are we staying here tonight?
7.  I need to get  your mother something for Christmas.
8.  What about the taxes?

Today, when my mother said he wanted to talk, I told her to tell him, the taxes were paid, there was money in the bank, I hadn't gone to the post office, and John Vega had taken care of his old trucks.  He laughed.  I told her to ask if his refrigerator was running.  He thought that was funny when she told him to go catch it, that obviously I had no 'respect' for his questions.  It was all in good fun.

Funny thing, he can go to the store, and completely calculate price per ounce of something, telling MD what is the best buy on something.  He's still reading his cowboy books.  I told her about a Bible passage I wanted her to read.  She asked him to get the Bible for her.  "Which version?"  That was a question he would always ask.  He read the chapter to her twice, discussing it.

He is getting frail and tired.  He forgets where things go. She keeps telling him what to do.  Yesterday, when they discovered they had a busted pipe down by the well, he had a fit, wanting to go fix it.  She finally had to get quite specific, telling him no.  Then, he got over it.  The neighbor came over and visited with him.  That helped.



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Christmas in San Patricio

You Be the Judge!

Christmas afternoon, APR started up, again, asking about his brother, his mother, and his father.  I was not quite sure what to do.  I told him that his brother had been dead for many years, that his mother had been dead since 1978.  The look on his face broke my heart.  I decided right then and there that I would just lie about it.  I can't do that to him again.

The beauty of Alzheimer's is that he forgot about it, a little while later.  We opened presents, and that was that.  He was not near as with it this year as last.  It is quite obvious this will be the last year we really have him.  

The strange thing about this horrible disease is the fact that you grow accustomed to it.  You simply grow accustomed to the fact that it will never be better.  You learn to take each day as it is, and try to look for the humor in it.  And - there is a heck of a lot of humor - at times.

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Bring Up Baby!

Pretty Baby

When Cathy was visiting in August, for the parents' 61st anniversary, APR mentioned that the one thing he wished he could have was a great-grandchild.  My mother had made the decision not to tell him about the baby, until she arrived.  She was afraid he would fret.  When they told him, on August 29, you would think that he would forget about it.  Of all the short-term things he has latched on to, it is the fact that he is going to be a great-grandfather.  He would talk about it. Periodically, he would call Rachel, suggesting that he and her grandmother take the baby and raise her, that Rachel might want to come live with them.  It was so precious.

Thanksgiving has come and gone.  All he could talk about, through October and November was Thanksgiving.  What was the guest list?  Where would we be?  Were we going to be somewhere different or at that house? 

This went on for six weeks.

Thanksgiving day, he could have cared less!  Then again, everyone was on baby watch.  This morning, he became a great-grandfather.  Sarah Catherine Rowe Garland is a doll baby.  He keeps looking at her pictures, talking about how beautiful she is!

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Brother Where Are You

Gram, a Cute Merchant Marine, and PWR II

The saddest thing to deal with is the fact that there is a short-term loop that is missing.  APR doesn't remember deaths of people.  He has grasped the death of Nana and Grandy, but not Donna or his family.  He calls, me looking for his brother, thinking that he's calling my cousin, Sarah.  He asks about his brother. 

What's going on with the family? 
Why isn't anyone getting in touch with him?
Are they avoiding him?
What about his mother?  Is she still in Florida?  Is anyone taking care of her?

You don't really know what to do.  Do you go with reality or just let him think that he's being left out in the cold by his family?  I wish we knew what to do.

So far, I think this is the worst thing we've encountered.  He's hurting so badly, because he thinks his parents and brother don't care about him.  



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Who Shot J. R. Ewing?

APR (left) PWR(right)

We spent a long day at the opthamologist  in Alamo today. Left the condo at 9:30 for a 10:15 appointment.  We were a few minutes late.  The work-in lasted until nearly 1PM.  The good news is that my mother's vision has stabalized. When you're dealing with macular degeneration (dry), that's a very good thing.  She has dry eye.  I could have told her that, but does anyone listen to me?  Noooooo!

It was an exhausting day.  Finally, this evening, it dawned on me that the days of just sitting in an office, waiting for appointments is over.  APR did great, was right on track today, well with it, but it's still the responsibility that is stressful. 

Logistics are now different.  You can't leave him alone.  Today I discovered that he needs his cowboy books with him.  He has one of those, and we're great.  He didn't today.  He spent an hour leafing through an old People.  Saw an article in it about the new Dallas.  He read that, then asked if I recognized certain cast members!  This led to a discussion about the show.  So, he's keeping up, a little.

Recently, he had not been asking about taxes as much. Oh, he still does, but not every day, several times a day.  He's now trying to find his brother and his mother.  So, while were waiting for my mother, I pulled out my wonderful Samsung Galaxy Tab 7, and went to ancestry.com.  I pulled up the entry for Gram, complete with all the social security information.  That satisfied him, for today.

This upsets my poor mother.  He'll just keep asking about his mother and his brother, and not accept our answers.

How do you deal with that one?




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Hondo Kitty R. I. P.

Hondo Kitty 1999 - 2012

Cathy was here for the anniversary, which was a decidedly more muted affair than it was a year ago.  When I called to check on the parents this morning, APR told me that my mother was upset because the dogs killed Hondo.

I figured he was not firing on all thrusters. 
Why hadn't anyone called me?

He couldn't find her.  She was in the garage hanging up laundry.  Yes, a pair of neighbors' dogs had killed Hondo the night before.  Fortunately, Cathy and Juan were still there.  Juan dug a grave for Hondo, there with the other family members in the little cemetery. 

Hondo barged his way into their lives in the summer of 2000, when they bought the Gene Green House.  He was a full grown cat, then, so he had to be at least 13 or 14.  

Everyone, including Sadie and the other cats went through a serious mourning period for him.  The parents are so upset.

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Faith, Hope, & a Couple Cute Doggies

APR, Sadie, and Rumsfeld

I sent part of this to a friend tonight. 

The reason Paul had the thorn in his side was because it was to  keep him humble.  What if the trials and tribulations some of us go through as Christians is not "breaking" but that old thorn in the side?

What if the biggest hang-ups in our lives - via unanswered prayer - are those thorns?

I am reading the most incredible book on the role of women and the church.

Christ told the male that he was to protect and cherish his wife as Christ did the church - in other words, die for her, be tortured for her, give everything for her....

That works for me.

What is so wonderful about my father, he may not know if he is to go to church tomorrow, but he is still firing on all thrusters with his faith.  He looked at me....  "And you think that is a revelation...any man who is married knows that the wife comes first, no matter what..."  It was said a bit sarcastically, with just a bit of that humor he still has.

This week I have noticed that APR is quite with it when it comes to matters of faith. The other day I was talking to him on the phone.  MD asked if I would talk to him.  He was having a "bad" day.  She wanted to see if I noticed if he was comprehending as badly as she thought he was.  Got on the phone, had a fantastic visit about the Lord.  He came up with a line that surprised and shocked me.  I want to use it as a title for a book.  "You know, the Devil is deceptive." 

What a book title!

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UPDATED: Oh, The Weather Outside Is Frightful

Left to Right:  Paris, David, APR, Uncle P, Jim

Monday morning my mother called.  "Your father is getting dressed to go outside.  He has put on his coat and hat.  He swears it is very cold outside."

It was about 96 outside.  She talked him out of the coat and hat.  He went outside to feed the deer.  She made him come in, it was just too hot.  This was all in the same ten minute conversation that included her telling him that it was too hot to wear the coat!

She called last night.  We were talking.  I heard her tell him it was time to go put on his pajamas so he could go to bed.  "No, you have on your t-shirt and your pants."

"Those aren't my pajamas?"

"I've laid out your pajamas.  Go put them on."

She noticed the look he gave her.  "I swear he knows what he is doing and is just trying to antagonize me."

According to my sister, that may be exactly what he is doing, at times.  Seems he told her he likes to do things that will cause her to worry about him.  "She needs something to worry about!"

Little stinker!

That's the problem.  We aren't quite sure just what is the Alzheimer's, his hearing loss, and just being 88 years old.  My sister thinks it is a mixture of all three.  I'm inclined to agree with her.

FRIDAY MORNING UPDATE:

MD called this morning.  "I told your father to go out to the garage and bring in the electric griddle."  He did.  He washed it for her.  "Do you want me to wash the chord!"  She said she shrieked, told him no.  He looked her.  "Thought that would get you!"

So, some of this is for effect!  Now, we just need to know which is which.

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The Dog Ate My Hearing Aid

I'm the Cute One in Pink

My mother called Monday morning.  Sadie had snacked on APR's hearing aid the night before when he took them out and put them on the coffee table.

The following is from the letter I wrote, for my father to give to the hearing aid company to send in to get his hearing aids repaired.  What can you say?

 July 25, 2012

To Whom It May Concern:

 On the evening of July 22, I removed my hearing aids and put them on the coffee table.  The following morning I discovered that my Bichon Frise, Princess Sadie, had snacked on them during the night.

 My wife rescued them, hoping they can be repaired.
Sincerely;
A. P. Reidhead

With luck, this worked.  They think the hearing aids are repairable.

This illustrates the larger problem - he's just putting things down - doesn't matter where.  MD is required to go around, after him.

We also stopped at Verizon.  The fixed his phone.  He's happy about that.


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Foggy Day in Hondo Town

Birthday Boy, June 11, 2012

We need to face the fact that APR is failing.  This morning, he thought it was still evening.  He argued with MD over putting oil in his new lawn mower.  It is just one thing after another.  He must now be followed.  She can't let him out of her sight.  The responsibility is beginning to show, take its toll on her.

When we were in Tombstone, she rested.  I couldn't get over the difference in her appearance.  Now that we're back home, she's exhausted, again.

I feel so sorry for her.  You don't know what to do.

When he needs to go to the bathroom when he's out - she must make sure there is no other way out.  Big challenge.

He does better when he's slept, eaten well, and has some mental stimulation.  He doesn't follow television well.  There are times when he is in his own world.  Not having hearing aids makes it much worse.

All rights reserved, SJ Reidhead

Food Fight

Ricky Ricardo or APR?

Getting APR to eat is becoming a problem.  The morning of July 3, Cathy and I decided the problem was the fact that his taste buds have changed.  We've noticed that if he  eats something savory or spicy, he eats.  If not, he doesn't really do more than pick.

He also eats things that are sweet.

We've been "guiding" food selection, helping him decide to eat savory, spicy, or sweet and it is working!  He's beginning to gain back a little of the weight he lost.

Another small battle won, for now.

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On the Road Again - Part II

Cathy Has Never Changed

We went to Tombstone on July 2.  Instead of stopping overnight, my mother thought we would try APR in one long day in the car, see what happened.  This is contrary to the way you are to travel with Alzheimer's.

He did fantastic.

By the time we reached Wilcox he was tired, sundowning, and doing his usual directional thing.  I stopped and got him a couple maps, which he used, obsessively.  The following day, when we were driving back from Sierra Vista, he decided to fold the paper map.  It was hilarious.  He was loud, fussy, and obsessive.  After 10 minutes he had it folded, perfect!  Cathy reminded me that he was always that way about folding maps.

That night we had dinner with Marge and Steve.  I had to push the parents to get them to leave before a heavy rain set in.  Didn't work.  By the time we reached the Larian, he had to go to the bathroom.  After a battle, he just got out in what was a 2 inch rain, getting soaked, to go to the br.  Gordon helped him into the room.  MD and I sat in the car for nearly 15 minutes waiting for the rain to stop.

He had a blast!

The more stimulation the better.

On the 5th, we went to Tucson.  He went to Mimi's for chicken pot pie.  My mother and I went to Louis Vuitton.  She bought Baby Cate her first piece of LV.

We've decided not to tell him about Cate until she makes her way into the world in November.  He would fret too much.

We drove back in one day.  He did fine!

All rights reserved, SJ Reidhead