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Author Archives: SmartLady

The present …

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Preparing to return home after ‘house-sitting’ a relative’s house about 100 miles away. The reason for the getaway was to be able to concentrate on a strict (but very healthy) change of diet to induce weight loss in preparation for serious heart surgery to be done either late summer, early fall. No distractions here. The only food in the house was healthy and there have been no temptations for the impulsivity that seems to be a big part of his life. I place a plate of food in front of him three times a day, and health snacks between meals and at bedtime. All and stay at about 1200 calories. In the two months we’ve been here, he has dropped almost 15 pounds. It’s been a huge success in several ways. One is that he now tells me I am giving him too much food, that he can’t eat it all. Hooray! Before he would eat seconds and thirds and still be standing in front of the frig grazing for more. The main ingredient to this new way of eating really has been based on portion size — smaller unhealthy portions, and larger healthy. I.e., lots of vegetables and grains and good carbs, and 3-4 oz meat at a single sitting instead of the 1/2 pound burgers and steaks he had been used to.

I hadn’t meant to get off on the eating. I started this out of frustration because we’re preparing to leave, and I asked him yesterday and again this morning to be sure that the back of his SUV was completely cleared out so we can begin loading it up this afternoon without interference from the myriad of clutter that has accumulated during our stay. A few minutes ago I handed him his (large) suitcase, which I packed (he has lost the ability to organize) for him, and suggested he take it with him since he was headed to town for something. His response? “Well, I can’t do that right now because the back end is a mess.” AAAARRRGGGH. It’s hard to bite my tongue. And I didn’t. And he went off in a huff. I said, “Why do you think I’ve been reminding you to clean out the back?” He said, “Well, everything is clean. I thought you meant get rid of anything that was dirty.” Siiiiiiiiiiiigh. And this is going to get worse. Where, oh, dear God, will I find the strength to get through this?

I had to vent. This is only one example of what goes on on a daily basis. Eventually it’s my desire to log those things. Maybe someone out there will relate.


2007 … the beginning

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About two months after the devasting experience of losing his wife to another man after nearly 45 years of marriage, he was into a new relationship. I remember he called me to tell me how wonderful the single life was, how “in love” he was, then told me how his pharmacist had to warn him about mixing Viagra with some medication he was taking. Looking back, the conversation was a bit inappropriate, but at the time I didn’t catch it. In fact I remember thinking he was acting like a teenager in love for the first time. He shared a few more rather personal comments, and I remember smiling and thinking I was glad he was dealing so well with the breakup of his marriage.

It wasn’t more than two months later that I ran into him, asked how he was doing, and he said he had just gotten a “Dear John” phone call that very morning. The woman he was so enamored with had called and broken off their relationship because she felt he was too controlling. He laughed, said he’d get over it by driving to Texas to check on his RV which he parked there during the summer months. I suggested we get together for lunch sometime. Thoughts went through my mind feeling there could be irony in the possibility that the two of us could find some common ground and that just maybe we could be the answer to one another’s loneliness. After all, I knew his background, knew his family. I was even his daughter’s godmother! And he was my children’s uncle! What could be a safer way to start a relationship?

A few days later I called and left a message that I’d be willing to be a travel companion if he wanted one. He had just had some heart issues, and it occurred to me that if something happened to him while alone it could be a serious situation. So, ever the caregiver, I offered to go with him.

So down to Texas we went. Because of the family connection, we had lots of catching up to do. I had loved his mother like my own, and his father, and so we talked all the way through state after state on the trip to the southern tip of Texas. By the time we arrived, we felt we were in love. I was as surprised as anyone, but told myselt it certainly was possible because after all I’d known him over 50 years, and oh-by-the-way I’d had a crush on him while dating his brother. And at our age you didn’t have long courtships … especially when you already knew one another. It really felt possible and probable. And exciting!

Bored yet? I’m just setting the groundwork. I want you to see how nice things were for the first month … nothing out of sync that I can recall at all. Talk – catching up – feeling a physical connection as well as emotional connection: beautiful. But it wouldn’t last for long. Stay tuned.

Hello …

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‎”If Alzheimer’s were a country, it would be the 18th largest economy based on GDP,” said Daisy Acosta, the chair of ADI, describing Alzheimer’s as “the single most important health and social crisis of the 21st century.”

In April 2011, new criteria was announced for diagnosing Alzheimers:

The first stage is pre-symptomatic – only biomarkers or changes in the brain indicate the mind-robbing disease is at work. The second stage would involve mild cognitive impairment – but short of third stage: Full-blown Alzheimer’s.

This is my first post about a journey I never dreamed I would be on.  It has been four years since it started.   It feels like a lifetime since I jumped on board.  Two years ago he received his first diagnosis of Early Stage Dementia, probably Alzheimers.   Six months later in follow-up he received a second diagnosis which simply added Alzheimer’s vs Vascular type.   A few months later we decided to go to the Mayo Clinic for a second opinion.  Denial is so great.  At that time he was diagnosed with Mild Cognitive Impairment, a condition that usually progresses into Alzheimers.  And then, more recently his primary care physician did the mini mental status exam in his office and concurred with Mayo that he has Mild Cognitive Impairment.  (I ask myself why this was so necessary … did he not believe the “experts?”)

I hope that by sharing my experience, it will help others on their respective  journeys.  Perhaps you will listen more to your instincts, be more proactive, realize the doctors do NOT know it all — unless they personally live with a loved one with Dementia. Hopefully it will be part of your “education” which will arm you with questions for your doctors … a way of filtering out those who know what they are talking about and those that pretend they know.

One thing is for sure, and that is you have to start somewhere with a doctor.  My loved one’s doctor would say to him, “Oh, I forget where I park my car, too.”  Or, “Well, you’re getting older, you know, so lapses in memory go with the territory.”   Ditto friends and family. Everyone wanted to discount the fact that something was terribly wrong. Since I’d already been researching and reading and educating myself, I knew this doctor was NOT the right doctor to be seeing for what I was suspecting was happening. As long as he heard others discounting it, he also discounted it, and when I would point something out, he would get upset with me, tell me I was lying, tricking him, trying to make him look bad.

People in their 30s and even younger have been diagnosed with Early Onset Alzheimer Disease. Old age increases the probability for Dementia, but sadly there are more and more people who are young who are being diagnosed. Imagine how long they go before finding the right doctor … who can give them the proper diagnosis.

If I’ve learned one thing it is that all doctors are not created equal. Some graduate at the top of their class, others skim by at the bottom. Some are very good in one area and not knowledgeable in another. The doctors do NOT know it all.  More, they can say the wrong thing, giving hope to the patient when there is none.  That’s disastrous when you are dealing with a patient who doesn’t see anything wrong with his behavior, whose area of the brain affecting cognitive ability is damaged.  They can say things that make you, the caregiver, feel like you’ve blown things way out of proportion.  The patient clings to that and says, “See? I told you there was nothing wrong.  You are the crazy one.  YOU should see a doctor.  There’s nothing wrong with me.” I know. I have heard that statement many times.

Even the best of doctors don’t live with my loved one 24/7.  They only see him when he’s able to put up a good front, puts on his charming act, tells jokes, and acts like he is understanding what is going on. For that moment he probably does. But they don’t see him the following day when he doesn’t remember the visit at all.  The doctor isn’t around when my loved one asks me a dozen times a day what day it is.  Or when daily he misplaces his car keys. And how he manages to lose the guest ticket when we’ve been out to eat between the time the server places it on the table and he gets to the cashier.  The doctor doesn’t see the subtle changes.  How his startle reflex is so strong that on occasion when I’ve reached out gently to get his attention I’ve ended up with a fist in my face. He doesn’t see the anger outbursts tainted with obscenities and hurtful words and actions. And more.

If I had been smarter, I would have joined a support group much sooner than I did.  (Denial.)There are many groups online — and I will list those that I’ve had experience with on the right side of this page.  I plan to continue to add links which I find educational and informative, as well.   So check the right side frequently for newly added material. There is also a companion page to this one which will have almost entirely links related to all stages and forms of Dementia. Just click on “Links Galore.”

I tried a community support group, but it wasn’t a good fit for me.  There was only one other person, and her loved one was into an advanced stage, and … it met only once-a-month. With online support I have access 24/7 with people who have loved ones in all stages, who’ve had myriad experiences and who live all over the world.  A support group literally saved my life.  

If you are having ANY suspicions right now that your loved one may have symptoms of dementia, join a group!!!!!!

I’ve so much to share I don’t know where to start — except from the beginning, so my next post will start a chronology of events which lead to this blog.

June 2011 – four years into this journey

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My journey began four years ago.  There were red flags, but as is typical with denial, I ignored them. I honestly thought I’d gotten into a relationship with a verbally abusive and controlling man. The fact that I’d known him for over fifty years kept me from getting out right away. It didn’t occur to me there was anything neurologically amiss. He was going through a messy divorce, and very stressed. And so was I. I’d been alone for the previous 16 years, so I figured the angry outbursts, the verbal abuse, the controlling, was a result of MY adjusting to someone in my life 24/7. I definitely blamed myself for a lot of what happened, telling myself I should be more compassionate, more patient, less selfish. But hindsight being 20/20 tells me that not only were those symptoms of his “journey” but that he’d been on that journey for some time. Very likely that explains the breakdown of his marriage that had lasted almost fifty years. I know one thing, and that is he is not the man I knew fifty years ago — when my exhusband and I stood beside him and his wife on their wedding day. I wrote it off as stress. But there were many more signs.

Once I sent him to the store for a carton of sour cream. He returned with Promise Margarine. And argued with me that that is what I’d said. Since I NEVER use margarine, wasn’t at all familiar with the brands out there, I knew that I had not misspoken. And then there was the daily and sometimes several times a day “misplacing” of car keys. Once we got up in the morning to find the car half in, half out of the garage. And the keys still in the car. He didn’t remember doing that … accused me of blaming him for something I’d done. Except for one thing: I didn’t drive his car. I had my own. (**Recently, we stopped at a flea market and wandered around for about an hour, returned to the car, and it was still running. Earlier he had put the car in reverse, got out of the car without engaging it in park position — leaving it running. Something very serious could have happened with that. The only reason it didn’t is that he was parked on a decline.)

He was fastidious when we “reconnected” four years ago. House immaculate. He was a fussy dresser, often asking me to please put some elbow grease to getting out “collar stains” on his shirts. Once he got very upset with me because I left a lone pair of my earrings on the bathroom vanity. He yelled at me saying he hated clutter and that I should have known better than to do that. (**Today he is the epitome of clutter. His car is a constant mess, and around the house he drops things, throws things, leaves things lying everywhere. It’s like he is blind to it all. And gets upset if I ask him to pick up after himself. “You nag at me too much.”)

If you are reading this, you are perhaps in the midst of denial.  If you are further along, then you will no doubt admit that you have already gone through the denial period.  It goes without saying that denial is a given at the beginning of this journey.

And no wonder.  Dementia is insidious.  It is slow but steady. Experts today are suggesting that the symptoms start at least 12 years before diagnosis.  I read one article that suggested as many as 20 years.  Once brain damage has occurred, it cannot be fixed.  Our loved ones can’t be fixed.  Maybe in the future there will be a way of diagnosing prior to symptomatology and thus prevent brain damage from occurring.  In other words: a cure.  But right now that’s not the case.  And that is why you are reading this, and why I feel the need to share my experience …