LEARNING TO SPEAK ALZHEIMERS

Keeping a sense of humor sometimes has to be kept to yourself until you get where you can laugh without hurting someone else's feelings. I don't ever want to be guilty of laughing AT someone instead of WITH them.

Twice a week I have to get up at 4:30 am, rush around, and get to town to pick up a friend. Because of a medical condition he's not allowed to drive right now and he's a professor at a college 38 miles from Eureka. We get him there by 7:00 am, rush to McDonald's for a bite and some more coffee. Then we head back to the college, find a parking place, put the seats back and catch up on our sleep in the car until time to pick up the professor at 10:30 am.

I try to get Alan to get his clothes ready the night before so he can just put them on when he hits the floor. Doesn't work, but I try.

When we got ready to walk out the door, I noticed he wasn't even wearing a coat. "Alan, get a coat. Its cold outside. And get something to wrap up in so you can stay warm in the car." If you're wrapped up good, you can sleep comfortably even if it's pretty cold outside.

Usually he grabs a warm throw. Thank goodness I checked before we got out the door. He had returned to his bedroom and was now wrapped up in his bathrobe.

One of those moments when I wanted to double over laughing.

When you're dealing with an alzheimer's patient, you have to learn to speak alzheimers. I don't speak it well so it leaves room for confusion on his part.

Most of the time we can share a laugh, whether the laugh's on him or on me. Those are good times. And because of them we have fewer bad times.

THE DISAPPEARING FOOD

It was nice this past week to have another "good" week. This one lasted for almost 5 days. The good news is I finally got him to change out of the dirty jeans.  The bad news is every time he has a few good days it seems like it's followed by a nose dive.

I was also able to convince him to get a badly needed haircut. The barber wanted to trim up his mustache and he refused. I stepped in and started insisting it be removed. Alan was pleased with the way he looked and so was I. He looked so much better and I think he's feeling better too.

One of the big problems has been with groceries. I can go to the grocery store, buy a loaf of bread, gallon of milk and a bag of oranges. Within 24 hours he has eaten the whole loaf of bread, making bread "wads". By the time I try to make me a sandwich or some toast, there's no bread left. The same thing happened last night with the disappearing bag of oranges. He had eaten the whole bag in one day. No milk left for cereal either. An 8-pack of coke, gone. I had bought us both snacks . Within 24 hours, he had consumed his and was working on mine that I had forgotten to hide.

There are many products I've discovered to help with this situation. I've had to lock the pantry to keep him from eating the macaroni, spaghetti and noodles right out of the package. I would go in to cook dinner and there would be nothing left to cook. I would have plenty of meat to make a dish, but nothing to add to it.

Brown sugar, canned goods would be eaten in the middle of the night when he wanders around. He would go through a 10 pound bag of potatoes in 2 days, eating them raw. Days and nights now have no meaning. I've tried keeping him on a schedule and not letting him go to bed before 9:00 p.m. Sometimes that works, but he spends too much time napping during the day.

I've found a place that has products just for situations like this. There are products you can use to lock your refrigerator, cabinets, even a way to fix stoves so they will turn off automatically if he turns the stove on and then leaves the kitchen.

But these products can be very expensive. I was grateful to find them though. You can buy them at CLICK HERE FOR The Alzheimers store   The website could be a little more user friendly.

Alan has always loved jigsaw puzzles, preferring the 2-3,000 piece ones. Lately he hasn't been able to do those, so I tried a 750 piece. No luck, he doesn't even seem to be able to get the outside frame done. So I'm going to try a 300 piece and see how that works.

I'm trying to remember to take care of myself too. It's hard sometimes because it just feels like there's no energy left. But I did manage to give myself a much need pedicure this week, along with the foot bath massage thing. And I did my fingernails too. Sometimes you just have to force yourself to take care of yourself, but it's worth it when you're through. You just feel so much better. I'm determined to fight caretaker burnout as long as possible.

My next project is to try to figure out how to get some time for myself. I haven't looked into getting some respite care but I can see I'm going to have to do that before long. Guess I need to start with some phone calls to agencies on Monday and see what's available that I can afford since his disability doesn't start until the first of June. Hopefully, by the next blog I'll have some information I can pass along.

YOUR OWN ATTITUDE CAN RUIN YOU HAVING A GOOD TIME!

A friend who lives out of state, contacted me and asked if I could meet her for lunch at a fabulous restaurant about a 45 minutes drive from my house. We hadn't seen each other for several years and I was excited.

I told my ex-husband to go get cleaned up, wash his hair and put on clean clothes. Not leaving anything to chance, I picked out the clothes the night before he was to wear. Off he went. When I was ready to go, I noticed he had on the clean shirt and his hair was done. Running late, we got in the car and headed out.

About 20 minutes from our destination I happened to look at the pants he was wearing. Oh good grief! He was wearing the same pants he had worn for the last 2 weeks.

At that point I had 3 choices. Call my friend and say something had come up and I couldn't make it. Come unglued, go ahead and go to lunch and let it ruin my whole day. I chose the third choice…go ahead, have fun, forget his dirty pants and enjoy my visit with my friend.

I remembered something I had read just that morning. One of the things people with alzheimer's do is become attached to a piece of clothing. They will wear it for days and days, sometimes for weeks until you can get it away from them so you can wash it. It seems to be kind of like a little kid with their security blanket.

Another friend had called my attention a couple weeks before that, that Alan had been wearing those same jeans when she had been there a couple of weeks before that.

So I continued on to the restaurant, content that my friend wouldn't be offended. She wasn't, Alan was on his good behavior and I had a wonderful time. It would have been so easy for me to have deprived myself of a wonderful time. Next time I will remember to check and make sure those jeans don't go with us.

You probably can't do anything about the attitude of a person with alzheimers, but you can sure do something about your attitude. Don't let yourself become upset over things that don't matter. Your job is going to be hard enough without YOU adding to your own stress level. Relax and enjoy yourself every chance you get.

PLEASE BE A FRIEND TO YOUR CARETAKER FRIEND!

I'm in a unique position as a caretaker. I'm taking care of an EX-husband. Sometimes I have to remind myself to "Do unto others as I would have them do unto me". And, even though we are not married anymore, I feel sure if the situation was reversed, he would take care of me. Strange situation to be in.

One of the things I'm trying to guard against is caretaker burnout. It's extremely easy to spend so much time having to care for him, that I forget about me.

Good case in point…I noticed my complexion was starting to look pretty rough. Holy cow, how long had it been since I'd taken time to give myself a facial? Probably several months. It was easier to just take a wet washcloth and quickly run it across my face. Not a good sign.  I looked in the mirror…my hair was about 3 inches too long. When had I stopped caring about my hair? I was running around looking like a wild woman.

It had been days since we had eaten anything except sandwiches because…when had I quit cooking?

It extremely important to recognize the signs and start taking action when you recognize you're not taking care of yourself. You know you feel better when you look good and you've gotten a good haircut.

I immediately ran to the bathroom, gave myself a facial. Haven't had time to get that haircut yet but I'm determined to make that phone call this morning.

I cooked a kick-ass dinner last night and will do the same tonight and tomorrow night.

I'm now making Alan stay up until 9 pm. He hates it but it seems to be giving him a full night's sleep. That way I'm not getting awakened at 3:30 am by lights going on because he has his days and nights mixed up.

And at this time I'm writing 8 different blogs because it amuses me and I'm hoping to build a readership. It's helping me keep my sanity.

And I have a good friend that will tell me the truth when she sees me slacking off on taking care of myself. She's helped me so much, doing things that I was too overwhelmed to tackle. At one point we attended a party. She told me she would take care of Alan, and that I was to go socialize and not worry about him. I did that and felt like a new person after a few hours of not having to worry what he was doing.

Remember how important it is to keep laughing, to take care of yourself too. And if you have a friend who is a caretaker for a family member, please take time to give her a little time off so she can go do something for herself. Your friend may not be able to afford to hire someone to give her time off. I can't until his disability starts in June. So be a real friend and give your friend a few hours out of the house to take are of herself. You have no idea how she'll appreciate you for it.

WE CAN GET THROUGH THIS IF WE REMEMBER TO KEEP LAUGHING

It's been two years since Alan lost that first job. He doesn't believe anything is wrong. Most of the time he can't remember anything for even a couple of minutes. I guess he doesn't remember that he's not remembering.  Most of the time I feel like I jumped down the rabbit hole and landed in wonderland.

One of the things that happened back before we knew anything was wrong: He was telling some wild story that had supposedly happened to him. I couldn't believe what I was hearing. This was one of the things that had happened to ME on one private investigation case I was working on. I thought he was just lying through his teeth and I called him on it in front of the people. I realize now he was already losing touch with reality.

If you are taking someone to be tested for any kind of dementia, WARNING….they'll get to the doctor and lie through their teeth to prove nothing is wrong or if they don't remember something, they'll just make up a story. Some of them are good enough to fool the doctor. You must let the doctor know what's happening so he/she can see through the smoke screen.


He was afraid of being diagnosed with either Parkinsons Disease or Alzheimers, since several in his family had died from both diseases. So before we went to the first doctor, he asked me a question he had already asked several times that day. What day is this? What year is this? He completely fooled that young doctor.

When we went to the free clinic, he tried the same thing. This time I ignored the questions. When we were waiting to go into the doctor, he picked up a Newsweek that had a huge picture of Michelle Obama on the front.

When the doctor asked him what day it was, he quickly tried to glance at his watch. The doctor and I both reacted at the same time to cover Alan's watch. He gave the wrong answer having no idea what day it was. What year is it? Uh…2009. Who is the president? Uh…Nixon…but I know who his wife is. It's Michelle Obama.

He couldn't repeat a list of things back to the doctor, couldn't name 5 wild animals, etc. But he could still play the piano like a pro. That was something he had started studying at age 5, so it was still in his memory.

This was the doctor who thought it was frontal lobe dementia but just wasn't sure.

When we got back out to the car, Alan was a happy camper. He hadn't heard Parkinson's or Alzheimers, the two things he feared. Frontal lobe dementia meant nothing to him so he was happy.

Sometimes he would have two or three good days where everything seemed normal. It concerned me…was he just making this whole thing up? Then it seemed he would take a nose dive. I didn't know, at that time, this was a sign of mid-critical alzheimers.

So it shouldn't have surprised me when the diagnosis came back frontaltemporal complicated alzheimers.

At the memory clinic, the doctor came in to give me the diagnosis while another doctor finished "testing" Alan to keep him busy. I was horrified at the diagnosis, didn't know what I was going to do, but didn't want to start crying and alarm Alan when we got in the car to go home. I felt like I had a lead ball laying in the bottom of my stomach. I remembered what the Bible says "Do unto others as YOU would have THEM do unto you."

Alan looked at me, with a smug smile, and said, "I passed the test!" I started rolling with laughter. Then it hit me, "Alan we can get through this just fine if we remember to keep laughing."

The Disability Merry-go-round

I need to share my experience trying to get a diagnosis and attempting to get Alan on disability.

The first doctor didn't have a clue. Even though Alan was way past early-onset, this doctor did some blood tests for everything else and assured us he was just fine. No signs of either parkinsons or alzheimers. Like I said, the man didn't have a clue.

I told a nurse in that clinic what had happened and what I was observing in Alan. She advised me to go to the local free clinic and speak to the doctor about what had happened (He was head of the clinic where the first diagnosis had happened).

This doctor took much time talking to Alan, getting responses then taking a walk with him. He said Alan didn't walk like he had alzheimers but he definitely was confused. His best guess was frontal lobe dementia but he just wasn't sure. He sent us to the memory center for testing and the hospital for an MRI.  The MRI showed there was shrinkage in the frontal lobe, certainly not a good sign.

Going home I hit the internet to research both alzheimers and frontal lobe dementia. I was confused by what I found. He fit most of the signs of being in the mid-critical alzheimers but not all of them. Then he also fit most of the signs of frontal lobe dementia. About the time I'd decide he had one, I'd change my mind and decide it must be the other one.

The MRI was in at the end of summer but it was the last of November before we could get into the memory center. Three different doctors…a behavioral specialist, a psychologist, and a neurologist.  The final dianosis: Frontaltemporal complicated alzheimers and essential tremor.  They said it was no longer safe to leave him alone.

This left me having to quit work because Alan had no money or insurance, and I only had my social security. If I left him alone and something happened, I could now be prosecuted for abandonment. Talk about a rock and a hard place.

I finally got him approved for food stamps (which have not started as I write this).

The doctors all told me it would take about 2 years to get him on disability. Now there was some good news that made me want to puke on my shoes….

I read in the news that a new law had been passed…if a person had frontal lobe dementia, disability could be expedited.. And until that happens they will get you on SSI until disability starts.

Yeah right. Another brick wall.."We don't show anything in his records about alzheimers." So I did the only thing left…I cried, and I snotted, and I cried and I couldn't stop and I told the woman the whole story between sobs. I apologized, then I cried some more and I snotted some more. I felt like I had just hit rock bottom.

She was very sweet. "I'm just going to go ahead and approve this before we hear from the doctor. And you just send your divorce papers as soon as you get the envelope I'm sending you. But I'm approving it right now."

I WAS GETTING CRAZY AS A BEDBUG

Alan was 30 when we got married and was so forgetful we called him the absent minded professor. One of the warning signs: When the person keeps consistently losing things. But Alan had always been that way. Every morning all the kids and I had to go on an all-out search for either Alan's belt, or his wallet, or his notebook. EVERY day. He was the most disorganized person I had ever met.

Another sign: Not being able to remember people's names. Alan always tried to call people by their name. I don't think I EVER saw him get one right.

Warning sign: Total lack of empathy. We started dating when he was 23. Thinking back I remember many times thinking he never had ANY empathy for anyone. He wasn't mean, he just didn't seem to have "feelings". He would get angry at his dad but never expressed any anger towards me. He seemed to be mostly lacking emotions, but then he had started using drugs when he was young.

He also started drinking in college and was a full blown alcoholic by the time I met him. I didn't know that. I knew he drank a lot. But at that time I knew nothing about alcoholism. It was only after we married that I realized he was having blackouts when he drank. We married in 1981 and Alan sobered up 13 months later.

We did have lots of fun, but because some of his quirks, and even though we lived in the same house, we became emotionally estranged around 2003. He had always shown a lack of respect for other people's possessions. If it was in his house, it was his.

Around 2008 I could tell he would have been in my things while I was gone. He'd always deny it but since he never closed a drawer it was pretty obvious. By 2010 he would constantly rummage through all of my things while I was at work. He was driving me crazy. That's when I divorced him.   I finally had enough of what I was calling the disrespect and the lying. His response whenever I asked him if he had done something, it was always the same. "I don't remember." Or he would just outright lie. At least that was MY interpretation.

He walked in one day smiling and announced he had just gotten fired. I asked the obvious question. "Why?"

"I don't know," he said calmly.
"Alan, they had to tell you why", I said.
Same response and I knew I had be lied to again. "I don't think they told me. I forgot what they said."

Two months later same scenario. Walking in he announced he had lost his other job. Second verse, same as the first. This time his response, "I don't know but they said I should have called a supervisor."

At this point Alan was home all the time. He was searching for a job. He had to keep a list of every place he applied. The first place he tried was the local market.

A week later he said he was going job hunting. I asked where he was going to apply. "The (local market)." I told him he had done that the week before. He went there anyway because he had no memory of already going.

Third week - "I think I'm going up to (local market) today and apply for a job."

All of a sudden, Alan started following me all over the house. Strange because he had always been a loner and so had I. I couldn't leave the room to go to the bathroom that he wasn't right behind me. He would follow me to the kitchen and stand right there while I cooked. Where ever I went, he went. It was driving me out of my mind. I had no clue this was a symptom called "shadowing".

I told him to just stay home and take care of things while I worked and that would be a great help to me. He would do dishes. The problem was every time I started to cook dinner, I had to go on a search for my pans, my utensils, etc. I might find one pan in the cabinet with the bowls. I might find a utensil in the pantry with the food. This was the routine EVERY SINGLE TIME I had to cook a meal. When I'd ask where he put something, same answer. "I don't know."

He would do things that would end up with me screaming at him. He would just stand and look at me with this dumb looking smile on his face like I was being extremely amusing. I didn't realize this was a reaction because he didn't even hear or understand what I was saying.

He was starting to get a look in his eyes like the lights were all on but nobody was home. That's when I started doing some research about alzheimers. Alan had no money and I couldn't afford to take him to a doctor. He claimed to have insurance, but he didn't. He just remembered getting some at the first job where he was fired.





Alan had never been much of an "eater", but all of a sudden he began to go through a loaf of bread a day by squeezing it tightly into wads and eating it. He'd sneak into the spaghetti, maccaroni and noodles and eat them uncooked right out of the package. I would go in to cook a meal and everything I needed would have been eaten. If I went to the market and bought enough groceries for a week, he would start eating. Everything would be gone by the next day. And he was not gaining weight.

He would load the dishwasher, then forget he had just loaded it. All the dishes, glasses, cups and silverware would be put put back in the cabinet still dirty.

At one point a friend of mine who is an R.N. came to spend the night. During that visit she said "Something is wrong with Alan." If you talked to him, he would seldom answer. He never initiated a conversation or took part in one.

Alan was still sweet to me. He would make coffee of a morning and bring me a steaming cup.  I always enjoyed it and never even knew the cup was dirty until I got to the bottom of that cup. By then it was too late to worry about it.

Her next visit was a month later. "You've got to get him to a doctor. I can tell a big difference since I saw him a month ago." She blew a hole in my boat that was still hoping it was just Alan being his normal eccentric self.

Another nurse told me to make him an appointment at a local free clinic.  Alan didn't think anything was wrong. Me? I was convinced I was getting crazy as a bedbug.

ALZHEIMERS: THE DIAGNOSIS

Lest anyone think I'm revealing family secrets in this blog, I can assure you I have ex-husband Alan's full permission to do this blog.

The day we got the diagnosis, we sat in the car outside the clinic. I told him what was wrong with him. I told him, "The only way we can get through this is to keep a sense of humor and laugh our way through it as much as we can." He agreed and that's exactly what we do. By the time he got diagnosed, he was way past early-onset. How did I miss what was happening!

One day I came home from work. During dinner I asked Alan what he had done that day. "I painted the garage door," he bragged. Oh crap, I thought. Jumping up I headed for the newly painted door and threw it open.

Now just imagine what a painted door would look like if a 4-year-old got hold of a can of paint and a dripping paint brush. Bright bordello pink!

"ARGHHHHHHH!", I screamed in a voice that probably rattled the neighbor's windows. "What the hell were you thinking!" I snarled. He just stood and grinned at me. "You paint that door back white by tomorrow." And he did. Well, to be more accurate he painted over the pink.

When I came home the next day the door was bright peach. I came unglued again. He just stood and grinned at me. The third day the door was turquoise. Finally the fourth day the door returned to white. Each time I blew a cork, he would just stand and grin. I didn't realize that was just a reflexive grin. He was not mocking me like I thought he was.

He was attempting to apply for a job but I finally realize he was going to the same places every day. When I told him this, he became angry, because he had no knowledge of applying there before. I couldn't convince him.

I told him he could be more help to me if he stayed home, took care of the house, and let me work. He would do the dishes and that was a huge  help. The big problem was I never could find anything when I cooked dinner. It was a frustrating exercise every night to find my pans, my spoons, etc. Utensils, pans, and bowls would disappear never to be seen again. Bowls would be found where the pans went, a pan would appear in the cabinet with bowls or in the food pantry. Alan had always been forgetful but this was over the top even for him. He had also always been passive aggressive so I thought he was doing this deliberately.

My blood pressure suffered. I had a lead ball in my stomach. Headaches became normal. The doctor doubled my anti-depressant. Then added another so I was now taking two different anti-depressants. This is what happens to caretakers. We lose our minds.

All the while, Alan thought I was lying to him and nothing was wrong. He just didn't believe anything was wrong. He felt normal.

At this point I took Alan to a doctor. A fairly new doctor I should add. He did some basic tests, asking questions. He then assured me Alan did NOT have alzheimer's. A month later I got a second opinion. That doctor sent us to the memory clinic. Lest you think this all happened a few years ago, oh no. We only received the diagnosis a little over 2 months ago. Frontal temporal lobe complicated alzheimers. Translation, our world, as we knew it, was getting ready to take a nose dive.

Being a private investigator, I spend a fair amount of time in court. I'm sitting outside the court a few months ago when the prosecuting attorney approached me. He bent down and quietly said in my ear, "I'm so sorry to hear about Alan."

I looked up at him. "What about Alan?, I asked. He said he had been told that Alan had early onset alzheimer's. "That's is bull," I told him.

Alan was still living in my house. We lived on different ends of the house, passing each other occasionally in the kitchen or him coming into my end to watch television since he didn't have cable.  At that time I began to watch.....

How had I missed it! He was getting crazy as a bedbug. Oh yeah. That's how it got by me. His thinking had always been that way. He'd always lost things and forgotten things. Sometimes I had called him the absentminded professor.

He had never been responsible where money was concerned but in the last year it had become much worse with me having to clean up his financial messes, just like his mama had always done. He was working two jobs and all of a sudden lost one of them. Then 2 months later lost the other one. Now THAT was different! He had always been a really hard worker, being hyperactive he could work hours that would kill the rest of us.


At that point, he was at the house ALL of the time where I could watch. He was rummaging through MY things. It was easy to spot because every drawer was left standing wide open. If I asked him about anything, his response was always the same. "I don't remember." He didn't know why he'd gotten fired.

By this time I was becoming frustrated, angry and sure he was lying when he denied doing any of the stuff he had done. I had enough and filed for divorce. That was not the end. It was only the beginning of me becoming a crazy caretaker.