The Last Day, Part II

This Is My Very Favorite Photo of My Father 

Finally, about 2:30 he fell asleep, with Maggie and Raymond heading home.  He slept, tossing and turning, most of the night.  He woke up about 4PM, going to the bathroom, no problem walking, then went back to sleep.

Around 7AM he was up, again, going to the bathroom, no problem. He went back to sleep, a little, then said he needed to go again.  My mother helped him to the bathroom.  It was now about 7:45. 
He began passing blood, hemorrhaging.  It was dark rusty blood, indicative of a long-term internal bleed.  Nearly 12 years earlier, he had nearly died with bleeding ulcers.  We had monitored his health since then.  It was that kind of bleed. 

While she called Maggie, I did my usual, I don't know what to do, hand wringing.  We called Cathy.  On weekends, due to her extremely busy restaurant, I try not to contact her, unless it is an emergency.  When she didn't answer, I called the main phone, and had one of her servers tell her it was an emergency.  She agreed we needed EMS.  We all knew, once he was transported it was the beginning of the end.  I felt so sorry for my mother...

First I quickly dressed, then called 911.  An ambulance needed to come from town, which was unusual.  By this time, he was up, sitting on the edge of the bed, down, up again, and his color was growing paler and paler.  We had noticed the past month or so, that his complexion was taking on a jaundiced tone.  We were also very well aware he was in the final stages of prostate cancer.  This happens in any late-stage cancer. 

By the time EMS arrived, I was outside, waiting.  The first thing I noticed was how young the guys were. They reminded me of my nephew, Dustin, who is now EMS.  So far, it has been the only part of the process where I've really shed a tear. 

They recognized it was a bleed out, and wanted to take him to Roswell for additional treatment.  We said no, take him to Ruidoso.  He had a medical directive.  My sister and I have medical POA for both parents.  Our mother made the call.  Just take him there and make him comfortable.

I followed the ambulance, working the phone the whole time.  By the time I was able to be admitted to the ER (where thankfully we knew the nursing team), he was extremely weak, his coloring even worse.  His condition had deteriorated, that much, in just 45 minutes or so.  The nursing team realized who he was, matching him up to my mother.  For the past 5 Saturdays, this was my 4th ER visit - the other three with my mother - so they knew me.  When she arrived, a half hour later, they were working on establishing a couple lines.  Since they were familiar with her condition, chairs, oxygen, and eyeballing of her status began. 

An hour later the attending physician called my mother and I over to talk. He helped her into a chair, telling her he was bleeding out.  If they were to stabilize him, it would take a good 3-4 pints of whole blood, then they would transport to either Roswell or Las Cruces for more tests.  That was not an option.  He agreed with us.  If it were his father, he would make him comfortable. 

I called Cathy, then made more calls, going outside to tell Maggie to just go home, and not wait for us.  She had driven my mother into town.  A half hour later, after making more calls, and I went back inside the ER, the attending told me the end was going to be much quicker than we thought it would be. 

More calls. 

By 2:30, the put him in a private room.  Fr. John Penn did last rites and a final communion for him.  Josie stayed with us until after 9PM.  She force-fed my mother a fried chicken sandwich from Sonic, then took me for a quick supper.    When friends began arriving, I skipped out, to change, do laundry, and brush my teeth.  Once I was back at the hospital, it was nearly 8PM.  They lock the front doors at 8.  Josie made a Sonic stop for me, getting me my usual iced tea, and some electrical tap to repair my MacBook Air cord.  When she left, my mother and I settled in for the long wait.  By this time Cathy and Rachel were nearly in Fort Smith, driving as quickly as possible.

His breathing became more difficult and labored around 10:45 or so.  I called Cathy to tell her it was reaching that point.  I went back into the room, to prop up my feet.  Neither my mother or I had slept - more than a few hours -  since the previous Thursday, with one night's exception.  I was so tired the bottom of my feet hurt! 

We were talking about what sort of service my mother wanted.  I watched his complexion become paler and paler. Finally, she checked his breathing.  Coward that I am, I fled the room. I called Danny and Terri Flores, asking them to help us get through it.  While he was being pronounced dead, I called Cathy.  I still can't imagine how hard this was for her, still 500 miles away, knowing he was dying.  I think she had the roughest time of any of us.

It was after 1AM before we could leave the hospital.  Danny and Terry stayed with us the whole time.  My mother cannot get over how well we were treated.  The attending checked on her, constantly.  Techs from various departments, who knew her, dropped in, constantly.  The nursing staff was incredible.  I can't get over the care and compassion. As we were leaving, the ER doc stopped me, telling me how sorry they were.  He said they had been praying for us - the entire evening.

The service will be late Wednesday afternoon.

His final hours were quiet and peaceful.  His final moments were at peace.  It was a time of peace. 
He had gone home.

All rights reserved, SJ Reidhead

The Last Day - Part I

The Last Photo - He Never Stopped Praying

This may be the final post I do.  I may go back and add a few others, back listing them, for the book I plan, but for all intents and purposes, this is the final post.

As a genealogies, there is something quite useful about someone whose life falls in nice, easily calculated decades.  As I started writing this, I realized this holds true with my father.  After 90 years of life, and 63  years of marriage he did what he told my mother he wanted to do, go home.  His final journey was short, peaceful, and he went out doing his very favorite thing in life, his favorite hobby, and favorite pass-time - sleeping.  I don't think a person could ask for more.  When he was in the second grade, his only theatrical role, ever, was playing the dwarf, Gumpy.  Of course we always told him it was typecasting.  If not Grumpy, he could have also played Sleepy.  There was nothing he enjoyed more than a good nap.   There was nothing we, as his family enjoyed more in life, than interrupting his naps, often in the most creative ways possible.  I suspect my favorite will always be the time my mother, thinking she was just tossing a couple ladyfingers in the fireplace in the house in the mountains, grabbed M-80s instead.  The object was to wake him up, out of a nice, long afternoon nape.  We were upstairs playing a board game, sitting in front of the open bedroom door.  He woke with a start, jumping so high he fell off the bed.  It was a glorious moment punctuated by the falling of a couple bricks out of the fireplace.  True to form, he never said a word.

His final day began much the same way.  A little after midnight, on Saturday morning, he sat up, in bed.  The past 10 days had been Alzheimer's hell for my mother in I.  Cathy was here, visiting with Catie, earlier in the previous week.  She had been here two weeks earlier,  and felt she needed to come back, primarily to check on our mother.  Catie, the most important person in the world, always cheers them up, giving them a taste of cute little kid happiness.  That week's visit was no different. While she was here, I met them at the Great Wall, our favorite restaurant, owned by very dear friends.  We did not realize that it would be our last visit as a family. 

When dealing with the elderly, it is a given that they have moments where they go downhill, fast, then plateau.  He had begun going downhill about the time of Cathy's first visit.  It was quite obvious this last visit, but again, we were more worried about our mother, who was in serious medical condition.  That Wednesday night, APR did not sleep.  Our mother stayed awake with him. 

If you are familiar with AD, it's called Sundowners.  People with AD usually reach a point where they have a total break from reality, usually pushing late Stage 5.  It is a major trait with Stage 6, where he was.  He had begun wandering around at night, all night, to the point where I was staying down at the house 3-4 nights a week.  We were told, that Wednesday, that our mother had become so weak (from refusing to eat) that we were told we could no longer leave her alone.    He started roaming, up and down like a little kid, sleeping about 45 minutes, then getting up, almost lost.  He could no longer find his bedroom or the bathroom.  He knew who we were, and knew the dogs, the animals.  In that way, his AD was interesting.  He never lost a sense of who he was, or his identity.  He lost directions, locations, and time.

Beginning in early July, when my mother's back started hurting her, so badly, I started buying junk food for him.  It is a survival technique you quickly learn, when dealing with the very elderly - they literally live on junk food, especially Cheetos.  During an 8 week period, he consumed 7 double packages of fig newtons.  He was eating a large bag of crunchy Cheetos every week.  He was also drinking milk and OJ so voraciously, I began making Countrytime lemonade for him.  To keep him out of my mother's OJ, I finally started making orange Kool-Aid for him.  He loved his desserts and sweets to the point where we learned the best way to tank up his brain was to sugar it up, like one would a little kid. 

He grazed, constantly.

His grazing  stopped last Saturday.  He never again touched his Cheetos.  He quit feeding Sadie.  He basically started picking at his food to the point where we began fussing at him.  He would eat meat and gravy, bananas, cream, sugar, and a sweet ice-box pickle I invented. He would eat that, and not much else of anything.  Familiar with his eating habits, and with AD, we assumed this was yet another stage of AD.  It was and it wasn't.

We were in AD hell, up every night.  Finally, on Tuesday, Maggie spent the night, letting me go home - for once, and my mother sleep.  She could do more with him than anyone else.  His eating and sleeping habits became more adversarial, for want of another way to describe it.  Thursday was nothing more than Alzheimer's Hell.  On Friday, he was constipated.  (That's another topic - his constipation - a comic topic).  My mother gave him a stool softener.  He didn't eat much, but hit her OJ.  For dinner, I made Greek stuffed peppers, one of his favorite meals.  He ate the refrig pickles and picked at the peppers.  I was trying to get the kitchen clean, so I could go watch the SF's opera's incredible production of Porgy and Bess.  I even wondered if he would want to listen to a little.  He loved Gershwin.

As I was rushing to clean the kitchen, he wanted to pray.  I did dishes while he and my mother prayed.  All he prayed was "I have decided to follow Jesus, no turning back."  That was it.  He went to bed.  My mother and I watched the opera.  To me, opera is food for the soul.  We both needed it, badly.  Not long after that, the end began.

My mother had taken to sleeping in a swivel chair, with a footstool, near the bedroom.  She could see him, and sleep where he back wouldn't hurt.  He had begun tossing and turning, badly, which he had done his whole life.  Only now, it was worse, to the point where he was losing his way, not knowing how to actually complete the process of getting into bed, reclining.  It had become a week long battle.  I admit, I had completely lost patience with the process.

I am not a care-giver.

A little after midnight, Saturday morning, he fell.  My mother was trying to get him to get up and go to the bathroom before he went back to bed.  He said he did not know how to stand - he didn't know how to use his feet.  (It's an AD thing).  As he was on the brink of falling, I grabbed the pet gate which was leaning against the wall, suggesting he hold on to that, like a walker.  He did not know how to use his feet.  His stomach was bothering him.  He needed to go to the bathroom.

He fell.

We couldn't get him up.  I called Maggie.  She couldn't get him up, and drove back home to get Raymond.  By this time, after he had cut his hand (he was on blood thinners), I was ready to barf.  I don't care-give.  Once Raymond managed to get him up, and back into bed, he had to go to the bathroom.  It was a mess.  He began passing blood, had diarrhea.  Maggie cleaned up everything.  I nearly passed out, during the process, having to go outside before I passed out, it was that bad.
Finally, about 2:30 he fell asleep, with Maggie and Raymond heading home.  He slept, tossing and turning, most of the night.  He woke up about 4PM, going to the bathroom, no problem walking, then went back to sleep.

Part II will continue, tomorrow.



All rights reserved, SJ Reidhead

Take Me Out to the ? Game?

APR, Rachel, Cutie Catie, 2013

This evening's dinner conversation was a bit interesting. For background, I've been talking to my mother about the incident of the NFL player who whipped his son, and is now suspended. It is my premise that what has been done to him is racist. That is NOT this tale of football, junk food, and the near impossibility of keeping Princess Sadie out of the dinner plate when my father left the table. FYI we were having marinara, ziti, and mozzarella. Because I'm tired and don't want to cook, I used sliced cucumbers and onions I made yesterday, and were marinating in rice vinegar, sugar, and a touch of pink Himalayan sea salt. One of the more interesting aspects of Alzheimer's Disease is that my father picks up on a conversation, something on the news, and blends it into his own little world. He's basically in a different orbit from the rest of us. I'm not adding more to inform. It is rather like a mystery, trying to figure out what he's talking about.

We're at the table.
 "Do you think I should go check on the team?"
"He said he was sick. I wonder if he was faking."
"Most people aren't when they say they're sick."
"You need to call Jimmy Southerland (cousin by marriage, dead for at least 25 years) and tell him that someone is sending him a bus ticket to come down and play for the team."
 "If someone said that to me, I'd hang up on them. That's an insult, sending a bus ticket."
 My mother just sits there, shaking her head. "You get someone a plane ticket."
 "You're going to call him for me. The team needs him."
"What team?"
"They're waiting for me to join them."
 "No they aren't. It's raining. It's been raining all day. They postponed the game."
He became quite angry. "Why didn't anyone tell me?"
Playing along with him. "It's been raining all day. I guess they thought that anyone who can look out the window has sense enough to know they can't play in the rain."
"I need to go meet the bus with the team. Someone needs to get the bus across the road to the field."
"There's no game, it's been canceled."
 "I need to go over to the high school."
"No you don't."
 "If I hire that guy, he can take your tests so you can pass."
By now he had left the table and was foraging for junk food. "That's why you can't go over to the school. You hired the guy to take your tests and was caught. You've been expelled."
"No one told me!"
 "That's why you aren't playing with the team."
"I need to meet the bus and make sure the guys have dinner."
"The game has been called off due to rain. Besides, you've been expelled."
"I need to go over to the school."
By this time my mother was just sitting there, shaking her head. "He'll wake up in the middle of the night and complain about being expelled."
"That's a smart guy. He makes good grades. Your grades aren't that good."
 My mother looked at him. "You can't hang out with them. You were expelled for letting all the air out of the teachers' tires." (This is true. He and his BFF, Herbie Johnstone let the air out of the right front and left rear tires of all the teacher's cars during a parent-teacher night. They then threw away the plug cap thingies. Today, they would have been sent to prison. Then, they became legends in their own time.)
"I can't believe you aren't interested in helping the team. This is all your idea."
 "I'm not interested in any team."
"You are the one pestering everyone about it."
"I don't care."
"You need to support the football team. I need to go play. They know I'm good. Jimmy Southerland is also good." (Neither man ever played a day of football. My father never even watched a football game, much to my knowledge).
"I don't like football. I hate football. I don't approve of high school sports."
 "But it was your idea."
"No, it's not."
 "I need to get to the team bus."
Finally...from my mother. "There is no team. There is no bus. You are not in high school. You are a 90 year old man. You don't even like football."
 "Then, where is my $90 social security. We need to get the government to pay me."
"You get $1200 a month."
"That's not enough. We need to make the government give us more."
"I agree."
"I need to check on the team."
 "It's raining. It's dark. No one in their right mind is outside." "No one told me." And so forth and so on....

 They say, when the person who has AD drifts into their fantasy world, to just go along with them, then gently try to reel them back to the real world, if possible. Eventually, within the next 6 months or so, it will no longer be possible for him to comprehend the difference.

He's happy.

All rights reserved, SJ Reidhead

Eat It, Just Eat It!

August, 2013

Years ago, when I was in college, my parents were horrified when my grandmother Froehlich (Nana) called my mother to tell her that my father's mother and her sister were literally starving to death, and had reached the point of no return with their health. My grandmother Reidhead (Gram) had become bedridden over it. Her sister, Mabel was valiantly trying to care for her, but Gram had become so malnourished she had passed go. If something was not done, quickly, she would not survive. My father and one of his employees drove one of his trucks (he had numerous delivery trucks at that time) left, almost immediately for the 600 mile drive to Lake Worth. Meanwhile, Nana was beyond shocked at the condition of the little house on C Street. It had become infested with roaches. Over two hundred years worth of family history, antiques, and memorabilia were at risk. My father's brother, Paris, flew down from Virginia. By the time my father arrived, Uncle P and Nana were already sorting through dozens upon dozens of packing boxes. Nana had simply packed Gram and Mibsey up and took them to her house, where Mae (her housekeeper and our surrogate grandmother) was force-feeding them - anything! It was one of those all-hands-on-deck family crises moments, with both sides of my family working together to do whatever was necessary to save Gram. (FYI: Nearly 40 years later we are still sorting through the mountain of family memorabilia - there was that much.)

Much the same way when a child reaches the point where they fail to thrive, senior citizens can do the same thing. If they don't get the proper nutrition something happens to them, emotionally, mentally, and physically. It literally destroys them. I'm terrified this has begun happening with my mother. She has problems with my father that no one should endure. Still, from now on, I gather the story of my life is going to be trying to get her to eat.

My day began around 8AM when my mother called. I was up working on a project and did not fall into bed until around 6:30AM. It adds perspective. She was being EMSed up to town - again. I met her at the ER around 10AM. In full a-fib, her heart rate was anywhere from 139 to 179. Once I saw it go up to 199. She was in bad shape there for awhile. There's a new young doc in the ER, who really has it together with cardiac. We finally left about 2:30. During that time they hit her with diuretics. They also gave her enough Valium to take out a T-Rex. She slept all afternoon. I had to go back into town and pick up a prescription, then the poodle, go to Wallyworld. It was 6PM by the time I was back at SP.

During the process, it was discovered she had a broken vertebra. You know, the one we've had problems with, an ER visit, X-rays, and a session set up to block a nerve - for something that was broken and this is the first time they found the break. Since the middle of July, we've been dealing with that - and not this other #$%@!

We have a very real problem with my mother. She has stopped eating. She has aged so much from the photo taken in August of 2013, I can't get over it. She's managed to let herself get old, feeble, and in some sort of a depression. She's basically quit eating, to the point where it's becoming a vicious cycle. If I say anything to her, I'm bullying her or harassing her. She's literally killing herself, and I can't get through to her. She's just too tired to eat, or doesn't like what there is to eat. She fights it, argues, starts almost crying, says I'm treating her badly.

I've spent most of my summer dealing with this $%#@ back and trying to get her to eat. I saw this behavior destroy my grandmother Reidhead. It's destroying her. I don't care how much your %$#@ back hurts, you don't stop eating. I disparately need your help and your prayers. If she doesn't start eating, and get an attitude adjustment, we're going to lose her. It's that critical and that simple.

 Today, in the ER, I was so frustrated I did my usual bitch thing. I am a wreck, emotionally and physically. I'm exhausted. I'm literally giving up my life to take care of her and she's throwing hers away. She loves cheesy fries. I bought the fries, bacon, cheese, made them for her. She ate about 6 or so fries, said she'd eaten a huge amount. Earlier, around 7PM or so, I forced her to eat a donut. She told me that, and to stop picking on her. She'd eaten so much. No, she had not. She was playing with her food the way someone with an eating disorder does.

There comes a point when you know there is a problem when the messenger is attacked. Right now, I'm so pissed about the back, I'm not quite sure what to do. I've spent hours cooking, and she just picks. It just makes her too tired to eat. She can't breath good. Her back hurts. Just leave her alone. She just doesn't want to eat. I need help.

 Not eating destroyed Gram. My next mission is to keep it from destroying my mother.   Of course, we don't have that problem with the Junk Food Junkie!       

All rights reserved, SJ Reidhead

Oh the Pain!

March, 2014

Even back in the mid-1970s, people who did not know my mother thought she was Joan Rivers. They had the same hair styles and color, wore the same things, basically. Like Rivers, my mother is perfect when she dresses. Unlike me, everything matches, basically New York Flash & Trash. My mother is not a celeb watcher. She never paid attention to the woman everyone said she resembled. The hair styles, over the years, became just plain uncanny. Going back through the past four years of photos, it is rough, how my mother has aged, primarily due to dealing with my father and the Alzheimer's.


My sister and I live in horror of medical proceedings. I think any normal human should, but, when you have a 90-year-old father with AD and an 84-year-old mother who has a serious cardiac condition, it is worse, trust me. My sister and I monitor everything going on with them. It is exhausting, annoying, and can make a person want to lose their temper on a regular basis, but it is necessary. I don't think I can stress how necessary this is. It is critical to anyone's survival, but when dealing with seniors, it is even more important. Now that the details about the incident leading to the death of Joan Rivers are finally becoming public, as the daughter of a woman her age, I am horrified.

I am also quite angry.  During the spring, when my mother began developing late stage signs of digoxin toxicity, and was placed in ICU, someone put a DNR bracelet on her. DNR = Do Not Resuscitate. They were also discussing the fact that she was in congestive heart failure. The ICU doctor said that she was having a heart attack. My mother was in a panic. When we discovered what was going on, I had to go total bitch on everyone to get the directive changed, including threatening legal action. That's the real problem, I think for anyone dealing with any medical crises, even when it isn't a crises. You must have someone with you who has emergency POA. (Power of Attorney). You need a medical directive. Depending on where someone is, you don't leave them.

We're dealing with a medical procedure on Oct 2. My mother has a serious back problem brought on by living, falling off a few horses, breaking a few things, and just life in general, along with osteoporosis and osteoarthritis. They will give her a local and inject something into a nerve on her spine, to deaden the pain. If it works, they go back in and do a more complicated procedure. It should not be a problem - if you don't have a pacemaker, or on blood thinners. Then, because of her age, and her medical history, we hold our breath.

I can't imagine allowing someone who was the age of Joan Rivers go into a medical procedure, where she is not being supervised by someone who has total control over where is going on. I can't imagine a physician taking it upon himself not to contact a family member to tell them what they are going to do. Sure, in a triage situation, we've been there and done that, but not for a biopsy. If I were Joan Rivers' daughter, I would be ready to destroy a few people. Knowing how angry I was after the home health care debacle on the Fourth of July, just compounding it by what she is going through, and I'd be highly litigious.

 I was reading about a physician who was sentenced to a major prison term, for scamming patients who were dealing with cancer. There are times when physicians are scamming, then there is incompetence. There are times when you wonder which is which. I'm still not sure if what we were dealing with this spring and early summer was incompetence or a scam. I am fairly certain we are looking at a Medicare scam. Home health care companies get something like $250 a pop when dealing with elderly patients - at home.

 The more visits they make, the more money they get. The more tests they give, the more money they get. They cannot do home health if a person is not confined to the home, as an invalid, so they were literally turning my mother into just that. We put a stop to it. Unfortunately, around here, we're dealing with an out of control corporation where the visiting nurse is ruining lives and families. I figured out what was going on and had my mother terminate them. When doing so, I discovered they were treating her for Congestive Heart Failure, only 1/2 of her heart working at all, and she was listed as terminal.

 One nurse wanted to have her to go bed, asked how she was going to "dispose" of my father, and would she allow the health care company to make end of life medical decisions for her. My mother was in a panic. Fortunately, she did a trip to her cardiologist a few days later. She has a-fib. She has a blood pressure problem and my mother, the ultimate food Nazi has high cholesterol.

She is NOT terminal. She is not in the final stages of congestive heart failure. When she has problems eliminating fluid, she can go into the early stages of CHF, but it is stopped by diuretics. The physician who assigned the home health care program lied about her condition. I think he did so in order to make more money.

 I know of a local family who is dealing with with what we are, a 90 year old man with AD. One daughter is the care giver, the other helps financially. Trust me, things get a little testy. I've screamed at my sister a few times. She's hung up on me. She's cried, I've had melt-downs. But - it's family. We do that. We also agree 90% of the time. It's that 10% which gets a little testy.

 This is what happened with the man's two daughters. The same home health care nurse who was turning my mother into an invalid, taking over her life, stepped in and sent social workers to the house, to take this man away from his daughters, who were being 'abusive'. They were horrified, and eventually kicked them out of the house. This is what is going on here. It is enough to make every family member beware and be terrified of home health care. The worst of it, is the fact that these people are paid by Medicare. BUT - those of us who have given up our lives, aren't allowed to get half of what these people get - we go broke. We lose our life savings. We put our lives and careers on hold. At least 65% of family care-givers in this country are women. I suspect if the numbers were the other way around, and 65% of the care givers were men, family care-givers would be eligible for a nice little stipend.

 That's my tale for today, and I'm sticking to it. On Tuesday, I was up until about 1AM doing a couple casseroles for the parents. I have a bad habit of cooking late in the evening. I didn't get to bed until around 4AM, and didn't fall asleep until around 6AM. The phone calls started Wednesday morning around 11AM, and continued until 2:30. I spent hours arguing with an idiot in a doctor's office, that basically took up about 4 hours of the day. By the time I finally reached the parents' home, it was nearly 8PM. We had dinner, then I watched Top Chef. It was after 11PM before I finally had the kitchen cleaned. I didn't even hit the blog until after midnight. I had an hour long nap around 7AM. Finally limped home about 1PM. Fell asleep at 3PM. Was up by 7PM.

I'm tired. I dare anyone to say I'm having a life. I'm not complaining, but, if the Feds are so willing to pay money grubbing, and cheating home health care professionals so darn much, why not give family members half of what the money grubbing corporations are paid, and let us truly care for the parents the way we know they need to be treated.

Anyone who thinks this is a poverty issue is wrong. If your parents are unable to afford a Medicare supplement and qualify for Medicaid,you can get a couple hundred dollars a week to care for them. If you have anything at all, and want to utilize a care facility, you cough up a fortune each month or must be declared destitute, losing everything to get into one.

If you are wealthy, no problem. This is a middle class problem - a middle America problem. You know - we're the ones who constantly get the shaft. It is so wrong that men and women who have worked hard, been the Greatest Generation, paid a fortune in taxes, and done what was right, must now suffer - because of the stupidity and draconian rules of the Feds. I don't expect it to change any time soon.

 All rights reserved, SJ Reidhead

Just a Glass Full of Sugar Water Makes....?

APR & Princess Sadie 

Last week my father wanted some orange juice.  Maggie was mixing sugar water for the humming birds.  You know the rest of the story.  Well...he didn't like Maggie's orange juice.  It was just too sweet.  He was more coherent that day than he had been, for ages.  Is there a connection?

I remember when eggs were evil, coconut oil was from hell, red meat was not to be touched, and carbs were perfect. Give it five years, and sugar will no longer be the evil one. The food police will have a new target.

if you are dealing with Alzheimer's, sugar - evil, white, filthy, perverted sugar is a gift from the gods. So is caffeine. Put them together and the person who is sundowning gets a spurt of energy that makes the mind work - just a little better. It takes about 20 minutes with my father. Last week, he consumed a glass of sugar water which he thought was orange juice. The sugar water was intended for the hummingbirds. It was the most lucid day we've had in months. Before the food police began condemning me, he's 90 years old. We will do just about anything to get his brain working for a time. The Alzheimer's brain disparately needs it.

Excess is a problem, with anything. Seriously, I do think the war on sugar, and extreme control of it with people who are 'pre-diabetic' are going to end up doing more harm than good for those who could be prone to AD. The brain literally needs sugar to function. It is energy. In the UK they are experimenting with caffeine in mice with AD. Caffeine injections are literally repairing damaged brain tissue. There are a number of families who are dealing with AD who are finding the disease needs to be fought on a nutritional level. We were very pro-active when we discovered my father's AD, to the point where we have been able to delay the onset of the worst of the disease for several years. We're in Stage 6, now so it is a mote point. We do, though experiment with sugar with him.

When my father was diagnosed as Type 2 diabetic 15 yrs ago, my mother became the food police. Everything he put in his mouth was monitored. We noticed a change in his blood sugar levels about 3 yrs ago, to the point where he can drink the 'orange juice' and his daily medication take care of it.

What if all the monitoring, and keeping a person off evil, white sugar might cause greater harm than good by not allowing the brain to have the energy it needed to survive?

All rights reserved, SJ Reidhead

The Rain in San Patricio Falls Mainly on the Sofa?

On the 'new' patio, just hours before the infamous rain storm! 

 

Two weeks ago, Sunday, we had one of those huge, rare rains.  Having been in drought conditions, we made up for much of it in about 24 hours.  That night we had about 5 inches.  Naturally, the porch leaked like a sieve.  The last time we had even more than that - 8 inches in a night, was about 7 years ago, when everything flooded.  The parents' had not closed in the porch at that time.  I was staying down with them that weekend.  My mother is dealing with a flare up of her Sciatic nerve, and is in agony.  (It's doing better).  So, Runs and I were down there, so she could take some pain meds and not worry about APR. 

The storm started about midnight.  Naturally Rums needed to bark at the thunder - all night long.  My mother had not believed me about the little monster and his barking at the thunder.  She does now.  I was tired.  The sofas on the porch are wonderful.  The lightening was a spectacular show that night.  I wanted to sleep one of the sofas and watch the lightening over the mountains. 

Forget that.

Drip

Drip

Drip

I put a pan where I was sitting, and went back to the other room and gave up, turned on reruns of I Love Lucy, then the early news.  I put few pans in other places, but missed on on the other sofa.  The rain continued well into the morning, turning everything into England green.  The previous day it had been New Mexico dead and dying.  It now looks like Jamaica!

Later in the morning, after Maggie arrived, I was in the kitchen with my mother.  So was Maggie.  APR, now dressed for the day, comes into the kitchen.  He's now wearing pull-on Depends.  Doesn't phase him in the least.  He just stands there, looking at my mother.

"My pants are wet and I didn't do it.  I sat on the sofa where it had leaked."

You know, you just gotta' laugh.  It was funny.



All rights reserved, SJ Reidhead

Dumping Them, Ignoring Them, Just Flush 'Em Away!

APR & Princess Sadie

It should be noted that not everyone who has Alzheimer's Disease is like my father, who is mild mannered, well behaved, and very much not violent.  He has his moments when he is terribly naughty, and can lose it when we're not home, and he's sundowning late in the afternoon, but it doesn't happen often. I have a friend whose father turned violent.  That's a completely different story.
I'm not a football fan.  This said, I'd never heard of Pat Bowlen, owner of the Denver Broncos until the other day, when news that he has been diagnosed with Alzheimer's Disease.  Like Ronald Reagan, Glen Campbell, and many other sufferers of the disease, he's going to be tossed aside.  He has kept his disease private - read his family is too ashamed of him to let the truth come out.

Nothing is worse for a person inflicted with the disease than to be tossed aside and not allowed to go about their day, as much as possible.  I heard one of the officials from the Broncos say how much he going to  miss seeing Bowlen come into the office.  That is what is so disturbing, and is the norm for high profile individuals who have the disease.  Lock 'em up and don't let them be seen, ever again, just like the Reagan family did with the former president.  What they did with him was deplorable, setting the pattern for everyone else.  The moment impairment begins, the person who has the disease is to be shunned, locked up in what is little more than a kennel, ignored and forgotten by their family and society.  They are to be degraded, treated with no respect, and generally have the medical community strip them of their dignity and their humanity.

I've seen it first hand with my father.  Every medical individual we encounter always asks what our plans are.  When are we going to do something 'with' him, like he is a rabid dog, to be locked up, then put our of our misery. No matter that aside from the fact that he's like a naughty three year old, most of the time, he's still a very viable human, who loves going out, dining in restaurants (where his manners are excellent). He likes company, visiting, and loves his dog and his cats.  He has a comfortable home with his cowboy books right at hand.  Sure, he steals everyone's glasses, and puts his dirty laundry in my mother's various drawers, but he still has his dignity.  He wants to get up and get dressed, in a suit and tie, every day - thereby driving my mother crazy.  So what if he doesn't make it to the toilet on time.  We've solved that problem with Depends.

The thought of putting him in some home, where he would be neglected, ignored, and allowed to fall, break a hip and die a few days later is disgusting, but that is what happens, more often than not.  The other day, we were heading to a doctor's appointment.  My father was having difficulty getting out of the car.  He said he was going to move his right foot first.  I mentioned if he were stuck in an old fart day care they'd have him singing the Hokey Pokey like they would in day care.  He was not amused.  Neither was I, at the thought of something like that.

I read somewhere that Glen Campbell's friends would visit, and find him in a group setting with other people with families who don't give a damn about then, singing nursery songs.  That is disgusting.  The man should be allowed to be in his home, with dignity.  The thought of doing something like that to my father makes me furious.

Sure, my mother was threatening to shoot him the other evening when she found his dirty laundry in her nightstand drawers, but she doesn't have any bullets for a gun that is hidden some where.  It's an idol threat to express her absolute annoyance.  But, that's life.  To put him away in some kennel, to die, because of things like that is disgusting.

I feel sorry for Pat Bowlen.  It's too bad his family doesn't love him enough to let him coast into the final stages of AD with dignity, doing what he loved most, or pretending that he does.  What they have done to him harms everyone who is suffering from the disease.  People who are seriously mentally ill are allowed to be in society.  People who have Downs are mainstreamed.  Why the heck can't those who have AD be treated with the same amount of humanity?

The photo of my father and Princess Sadie were taken a few weeks ago.  Why on earth would you lock him up and rob him of his dignity?

All rights reserved, SJ Reidhead

Dignity, Always Dignity

APR's 90th Fourth of July!

 Do you know what a person with Stage 6 Alzheimer's Disease looks like?  Maybe you don't.  By the time a person has reached Stage 6, they've probably been put in a kennel, and left to die.  This is how my 90 year old father, who is Stage 6, celebrated the 4th of July.  You'll note the lemonade, the watermelon, which he was allowed to eat on the counter, and then he had a hotdog chaser. 

My mother called around 12:30AM on Saturday, to tell me he was up, fixing himself a huge bowl of watermelon.  He took it back to the bedroom, and ate it in bed, watching an old movie.  (Oh, don't get me wrong, he's making me crazy.  I'm tired.  When I'm tired I have that disgusting grown-up child's tendency to bring up all past offenses done to me by my father.  The list can fill maybe 10 lines - FYI).

On the Fourth of July, my mother received a visit from a a substitute nurse from the local home health care. By the time the woman left, my mother's heart rate was up around 179.  She was in a panic, having a panic attack, and absolutely terrified.  The woman told her that she had congestive heart failure, and could drop dead at any moment from it. Never mind, a few months earlier, her cardiologist told her that he was not as concerned about congestive heart failure as he was the fact that she could go into a coma from a major blood sugar drop, and never wake up - because she doesn't eat or take care of herself.

None of that mattered.  She was in a total panic.  The the women grilled her about her end of life plans.  When she dies before my father, what then?  Did she have a directive allowing physicians to do what they thought best?  My mother's answer - do you think I'm a fool?  She said absolutely not, then told her that her two daughter had joint POA and joint medical directives for both she and my father.  What were her plans for the disposition of my father, if she can't care for him. Oh, and did she know that you don't leave someone with AD alone?  I can't believe she did ask the woman if she looked that stupid.

My mother ends up in bed, sucking oxygen, in a total panic attack.  My sister calls, a third time, telling her she's had the same heart condition since we were in high school, so why go into a panic?  After that, she settled down, got a grip, and the heart-rate slowed, back to normal.

People who are no longer young, no longer in perfect health and are no longer 'viable' to society, are increasingly treated like dirt.  If that person has AD, it is even worse.  For some strange reason, those suffering from AD are allowed even less dignity than other seniors.  I've spent some time with my father, this week.  Sure, he's dotty.  He's Stage 6.  But, if you take away the sundowning, the constant discussion about long-dead family, and some odd business rumblings, if you did not know he had AD, well, you'd just think he's a little senile. Why would we even think about putting him in some sort of institution where he is treated like a child?

Today, I screwed up one of my mother's yard chairs.  He fixed it.










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Peanuts and Prayer

Photo Taken Today

A friend once mentioned to me that his former minister had developed AD. He said the man's mouth was foul, spewing profanity, obscenities, and was basically a dirty old man out of control. He said something that another family friend, a physician, once told my mother. When a person becomes a certain age, they can no longer hid who and what they were. Their real personality comes shining through, no matter what that person once pretended to be.

 My grandfather Froehlich, who was a mover and a shaker, very much a self-made man and leader, was known in life to some times have a short temper - when dealing with a recalcitrant cow who did not want to either get into a truck or leave one. While he never uttered profanity, it was rather humorous "dang blasted screw ball cow" and his version of sh*t was papa cow excreta. As he approached 90, he had a series of TIA strokes that eventually lead to short-term memory loss and then dementia. He became a little cantankerous at times, but was always quite gentle. As he was presented with more and more great-grandchildren, he adored them. Every day of their married life, nearly 65 years, my grandfather always went out early in the morning to get a flower, usually a hibiscus, and put it beside my grandmother's plate. He continued to do this up until the very end.

My mother has been in ICU and the hospital for the past few days. I ended up 'baby-sitting' for my father, who is in Stage 6 with his AD yesterday. Last Friday, when I was down at the house, for a party, he was like living with Cliff Clavin from Cheers. He constantly chattered, to the point where my mother was almost insane. She begged him to stop for just five minutes. He stopped for five seconds. Because of that, I was dreading today.

But - interestingly enough, and this is something we are going to need to keep track of, he has been quite, just wonderfully behaved while she's been in the hospital. Aside from the possibility that he is doing his best to be naughty around her, something else was quite evident. We've noticed before, how he always wants to pray, to discuss going to church.

 This evening, he prayed before the meal I 'prepared'. Then, when Maggie came in (she's staying with him tonight), he wanted to pray, again. She said, the other day, she thought he had fallen. He was on his knees, praying. He's 90 now. I guess we know what the real person is. Oh, sure, I'm ticked with him over the usual daughter -father things, that we always hold against our parents, into infinity and beyond, but that's just part of life. It tells us who and what he really is.

While I was preparing this, I was looking through used images for a 'featured image'. Up came all these so-called godly men, you know the ones who have mega churches, cults, million dollar donors, and are the godly men who have been forced to step down from their organizations because of sexual abuse, pedophilia, or defending pedophiles. I look at my father and realize this is what a truly godly man looks like.

 FYI: The photo was taken on Tuesday. Princess Sadie is attempting to beg yet more peanuts from him. He keeps 'forgetting' that she's not to have them - yet he remembered she couldn't have chocolate. The peanut jar is barely seen in on the lower left. The lid, was closed at the time.

All rights reserved, SJ Reidhead

The Last Real Birthday

Rachel, SJFR, Cathy, Cutie Catie - 4 Generations

My father is 90 today.  As I start working on the blog, it's midnight.  Every year, until the past five or so, we would always call him at midnight.  We would wake him up, with fireworks, pots and pans being pounded, explosions, smoke bombs, music, anything to make him get up out of bed.  My father was infamous for taking his sleep and his naps quite serious.  We were infamous for doing everything possible to see that he didn't get a break.  Isn't that what the philosophers say, never give a sucker an even break?  One year, we even set the side of the house, by his bedroom, on fire.  We were shooting off a couple thousand lady-fingers.  A couple went up inside the hand-split ceder shake shingles and caught on fire.  Fortunately, it was on the side of the house where my mother and I had a huge rose garden, with a major sprinkler system.  Let's just say he did not get much sleep that year.

The year he turned 60, my mother put up a billboard going into town. She had a huge surprise party for he who was clueless, even when the caterer, including Greenville's famous Vince Parone - himself - arrived to fix the meal.  He's sitting on the porch, talking to my grandfather Froehlich, and a cousin who just happened to drop in for the day.  "What's Vince Parone doing here?"  My poor grandfather could only laugh at him.  It was about that time a large big band orchestra arrived, and the circus tent was being set up, with tables and chairs being put under it.  He was still clueless.

One year I found an indoor confetti bomb.  Another year, when I was out of town, I called him every ten minutes for two hours until he finally disconnected the phone.  If we did not do something to him, he was quite disappointed.

Not this year.  It really doesn't matter.  He won't even understand why we were doing it, nor probably remember all those years.  What he does remember is the fact that The Most Important Person in the World is visiting, and that, having seen him in March, the little squirt, who will be 2 in November, remembered him, going right to him.  He remembers Cutie Catie.  He knows us most of the time, until the evening when he is Sundowning.

I pick up a cake around noon, then take it down to the parents' house, where we will have the last of his big, annual birthday bashes - every year for 63 years the parents have been married.  My mother is having a difficult time.  I almost lost it the other day when I picked up a bunch of candles.  I realized it will be the last real time.  Oh, sure, he might be here next year.  But, his presence will be physical only.  We're fortunate enough to know this, and to compensate and plan accordingly.  Such is life with Alzheimer's Disease.

We're lucky.  He's not in pain.  He's not really suffering.  He's not in pain.  I don't know if you can ask for much more than that, not these days.  We've been able to put off this moment for several years, dealing with diet, caffeine, and B-12 injections.  If we had known of his condition, earlier, I think we might have been able to stave off Stage 6 (where we are now) for a couple more years.

That's the beauty of an early diagnosis of the disease.  Contrary to popular opinion, and what the medical community and the basically good for nothing, and useless Alzheimer's organizations promote, there is a heck of a lot that can be done with the disease.  If caught early enough, there are indications it can be literally stopped in its tracks.

We're so close to a cure!

So, we're having the usual BBQ, beans, potato salad, I'm getting ready to go make a macaroni salad, and my mother has baked her 63rd annual chocolate cake, with white icing.  As you can see, life goes on, as another generation explores the delights of a picky-cake.

The featured image is my favorite photo of my father and his brother. My father is the younger one.

 

All rights reserved, SJ Reidhead

Feeling Robbed

Friday morning, I saw a headline from The Hill. Bob Dole is pissed about the VA. Well, I'm pissed about life. He's a year older than my father, and his mind is as sharp as ever. So is former President, George H. W. Bush. . They are the same age as my father. Their bodies are frail, but their minds are good. Jimmy Carter's body and mind are doing great. Both he and GHWB are the same age as my father. My father's body is great, for someone 90 years old. He's proof that high blood pressure and Type 2 diabetes are not killers. But - his mind is in another orbit. We're pushing Stage 6.

 It's not fair. Then again life isn't fair. What also isn't fair is the disaster the disease makes of the lives around the person who has it, especially if you aren't quite wealthy, don't have the right insurance, and don't plan to put your loved one in a kennel where they are encouraged to die. My father still has his dignity. Sure, he's driving us crazy. My mother is exhausted from taking care of him. The problems is that we are in an in-between stage. He doesn't sleep that much. With her cardiac condition, she needs sleep. Like a two year old, he can't be left alone. You just don't know what he will get into, hide, or even worse, go outside. She keeps the house armed, which helps, lots. His mental comprehension is nearly shot. It's frustrating. Then, a light goes off, and he's fine. Contrary to what the so-called experts say, the more action around him, the better his mind is. The more caffeine and sugar he consumes, the better his mind works.

People have Alzheimer's Disease are treated like dirt, by society and especially by some representatives of the medical community. They have decided there is no human value in a person suffering from the horrid disease. They are worthless, a drain on valuable resources. They are allowed no basic human dignity. Why don't you take your father to a day out for AD? Right, you think we're going to drop him off, like a toddler with a back-pack, to go with a group of people who don't give a damn about him, to color and clap his hands to the wheels on the bus go round and round? Dignity? I think not.

 My father still has a tremendous amount of dignity. The biggest problem my mother has with him - or one of the most annoying (aside from hiding things, including her diamond wedding band) is the fact that he wants to put on his best clothes, every day. He always wants to get dressed up and go somewhere. Families of those suffering from the disease, especially men, are expected to be martyrs, especially the wives. For some weird reason, women end up being put in institutions to die, but wives have a tendency to kill themselves, caring for their husbands. That's the way the politics of the disease work. The worst thing is the precedent that the Reagan family set, basically hiding the former president from society. Now, anyone who is even in the early stages of the disease is to be hidden away like some flawed monster. People who have Alzheimer's need to have their brains stimulated.

 Contrary to popular myth, they need challenges, visitors, interesting meals, and enjoy going out in the world. Sure, when late afternoon approaches, and it's time to sundown, all hell breaks lose, but you learn how to deal with that. The reason you don't put you loved one in a kennel to die, is because that's just what happens. They are improperly supervised, fall, break something, and are dead in a couple weeks. It's legalized murder. Granted, my father makes me crazy. I'm not a patient person. It is the reason I never had children. I couldn't put up with it. But, that's my problem. He shouldn't suffer because I'm not good at care-giving. So, you hit the double espresso frap with extra sugar and hop him up on it. The sugar makes the brain work. When the brain works, his behavior is better. But - sugar is evil, right? We're learning the disease can be 'managed' by diet. People who have the disease need caffeine and they needs lots of processed white sugar. My rant is over, and I've managed to calm down a little. It does make me sad, watching men my father's age who have brains that are working. We are blessed. He's not in pain. He's not suffering, and we know, when he has this June 11 birthday, that it will be the last one he will ever be able to comprehend. That's a blessing.

Oh, a little FYI. Alzheimer's is not all that common. The worst thing is the 'facts' put out by various foundations. There are currently about 5.2 million Americans who are suffering from the disease. There are approximately 317 million Americans. In other words, there are 312 million Americans who do not have the disease. It is very rarely hereditary. One of the leading causes of the disease is Lyme Disease. If someone is pro-active and knows about the connection, it is possible, actually possible to ward off the disease, and even stop the symptoms - by vitamin therapy and diet. But - they aren't talking about this. They're also not talking about the fact that up to 300,000 people contract Lyme Disease each year. Each one of these people is susceptible to developing AD. We can track my father's AD back to Lyme Disease./>
All rights reserved, SJ Reidhead

A Little Wine

Easter Lunch At Our Favorite Spot

This morning, after my mother dressed, and went back into the kitchen, she noticed that my father was a little red in the face.  He had a difficult time standing, could barely walk.  She started to panic.  When she told me, I started to panic.  What on earth was going on with him.

Then she told me she called Cathy to tell her about it.  When you are dealing with Alzheimer's there's always something new to deal with.  Today was no exception. 

She thought, well, she'd get him something to drink.  We're having a battle getting him to drink water.  He consumes soda like water, and orange juice like soda, constantly.  He will drink anything - but water.  She's had to cut out even having soda in the house.  We've gone to Sonny Delight, because it's cheaper.  There's no reason for  him to literally chug freshly squeezed orange juice.

Then, my motherlooked in the kitchen sink.  He had a large glass, with ice in it.  She noticed the bottle of good sherry, on the counter.  She'd been cooking with it.  He had drained the last of her bottle of sherry!  There had been a good 2-3 inches of sherry left in it.

He drank at least two-thirds of a cup!  The most he's ever consumed in his life is a half glass of wine.  She fixed him some coffee, he chatted, very with it.  He wanted to know when the Braves were going to have some spring training games on.  He then had a little nap, woke up, and was very with it, though he was still staggering a little, even at 1PM.  She said he was great, all day.  She's thinking about  giving him sherry and port.  It made his head work - that much!  My mother said it was the best she's seen him in ages.  You never know.

Then, he started Sun-downing later in the afternoon.  She's going to try giving him a little later in the afternoon, and see what happens.  If nothing else, it will help his circulation! 

All rights reserved, SJ Reidhead

Alzheimer's, Food, Sugar, and Idiocy

Married 63 Years!

There is a heart-breaking article on Alternet about people who warehouse their family members in corporate run facilities.  With luck, we are going to be able to care for APR and not go this route.  Unless he becomes violent, I'm not seeing it.  So far, he's far from violent.  (More about this in another post).  I wrote a comment to a comment left by someone who volunteers.  She insists that the disease is another form of diabetes, which is what they're pushing in some alternative sources, I think, to push books and vitamins. The following is my reply:

Alzheimer's is NOT a diabetes issue. It is NOT as genetic as the fear mongers say it is. There is a huge connection to Lyme Disease, brain injury, and even PTSD. To say that it can be prevented from diet is just plain foolish. One can stave off the effects of the disease for years by regulating diet - and that includes giving the person with Alzheimer's quite a bit of sugar. Sugar & carbs are fuel that make the brain work. We kept my father's Alz. under control for 3 years after he was diagnosed - in stage 3 - by using oatmeal, sugar, B-12, heavy cream, coconut oil, strawberries, and blueberries - for breakfast every morning. He still gets B-12 shots. Caffeine is also very helpful.

We're creating a pending Alzheimer's disaster by concentrating on sugar and carbs as pure evil.   I remember when eggs were pure evil, as were any forms of fat.  It is foolish to state that because of a couple studies, certain food groups cause certain diseases, when so much of this is fringe hype.
APOE4 gene primarily involves early onset, which is hereditary, or appears to be.  Late-onset, which is what the majority of individuals who have the disease have, is not, they think, due to the APOE4 gene, but something else, entirely. They are apples and oranges, apparently. The gene is fairly rare.  Fear mongering is not going to help anyone.  There are a couple other genetic factors, but they account for less than 1000 cases, world-wide.

The Lyme Disease factor is terrifying.  According to one study, the pathogen involved in lyme is present in 97% of Alzheimer's patients.  My father had the first documented case of Lyme Disease in the south, 30 years ago.   I know individuals who are suffering from Lyme who are already taking experimental Alzheimer's drugs, to stave off the disease. There are even talks that the CDC is covering up how disastrous Lyme Disease actually is.

We're keeping my father at home. He is 90, into Stage 5. He tires easily and lives in his own little orbit. Once in awhile it coincides with ours. He is happy, had his little dog, and still reads cowboy books. My mother has learned that he needs to be snacking, in order to keep him going.  When someone reaches the age of 90, I don't care what they say about food and sugar, you let them eat what they want, in order to get food into them.  if it's chocolate chip cookies, then just make sure my father doesn't give chocolate to the dog.  If he wants to drink orange juice, then let him have it.  So what if you violate the food police?  A person is old, let them enjoy their lives, as best they can.  We are well aware within the next year or so, this might not even be possible.

The first thing we learned is that people don't quite know what they are talking about with the disease.  it is almost trial and error.  I feel sorry for people who are warehoused, put into homes, and groups.  With luck, we won't be forcing this.  So far, my father is annoying, and tiresome, like a naughty 3 year old, but he's not violent.

We've also taken him off many of his Alzheimer's meds.  They were drugging him, sucking the life out of him.  Sure, he's busy, and annoying, but at least he has the life back in his eyes.  He's happier, my mother is exhausted and I don't have the patience to deal with a small child, let alone him, but he isn't being treated like a non-person.  I can't imagine putting someone in a 'group' setting and taking their dignity away from them.  The thought of my father sitting around in a group, clapping his hands while some idiot plays therapeutic music is enough to break my heart.

Sure, I sound nasty, but it's just the effects of living with the disease on a daily basis.



All rights reserved, SJ Reidhead

A Very Good Christmas

Eggnog?

The one good thing about dealing with what we are, is that we know our time is limited.  Today is probably the last real Christmas we will have with APR.  We know that, and planned accordingly.  Funny, I was dreading it.  Instead, it turned out to be one of the best we've had.  Cathy drove in, with Juan and his two nephews, neither of whom spoke much in the way of English.  She brought BBQ with her from the BBQ Shop there in Memphis!  Who needs turkey when you have Memphis BBQ! APR devoured his ribs, trust me. 

The night before, Cathy picked up pizza.  He loves pizza.  What was so cute is the way he perks up when company arrives.  He chatted away with Juan's nephews, who knew the score, not that they understood a word he was saying.  He just had a great day. 

By 7PM, he was exhausted, heading to bed.  Then, like a little kid, he was up, wanting dessert.  Later, that night, while Cathy was watching a movie, he managed to get up and sneak out, into 20 degree weather, to try and close the gate.  That's the scary part. 


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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.

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