I've had to realize that I don't take compliments well. Specifically, when somebody says something to me like, "Hey, that was clever! You must be doing better!"

Instead of graciously thanking the person, I quickly mire down in negative garbage. Like, hey I'm in the early stage, don't be shocked every time I show I'm not ready for the nursing home yet.

Later, I know that a person was just trying to be nice. Not trying to challenge the validity of my diagnosis.

Anybody else touchy about this, or something else?

I don't like those types of comments, because then every time I meet that person, I feel like I have to be "better", in order to meet their expectations, when how I feel fluctuates, sometimes moment to moment. That puts too much pressure on me and I cannot tolerate any degree of pressure.

Iris L.

Boy does that every sound familar. I usually just say your lucky you caught me on good day.

quote:

I usually just say your lucky you caught me on good day.

Yes! Handle things with humor, that's the way to do it. If I can keep my smart-aleck side on the low burner.

Iris, you got me to thinking about how the way I feel fluctuates. This morning I was reading something, and for a while I was keeping up with the story, several pages into it. I didn't even think about how that used to be normal, until I started losing track again.

You know what's awkward? Having a friend who knows about me, introduce me to someone. When I'm doing alright, I can't predict when my mind will bog down. Does the new person know I have dementia? Should the new person know?

I use the comment "You don't live with me 24/7".Every day is a bit different some good some not........

Alan et al,

I know what you mean about compliments. I tend to be defensive about comments. I used to accept comments gracefully, now they tend to anger me because other people say "you see, you're no that bad!" (I guess that equates to "If I get still receive compliments from others then they don't understand my turmoil, therefore, to them I'm not as sick as I think I am?")

Am I making any sense????

It makes sense to me, but I have EOAD (LOL) Sorry, I just couldn't resist. I don't know how many times I said in the last year "does that make sense". Everytime I talk on the phone or try to explain anything that always follows. Sometimes I think people say yes because they don't want me to confuse them more trying to explain it again.

How much of it is people associate Alzheimer's with an image of a person at least Stage 6? Those of us that converse on these forums are a lot more functional than that.

The compliments that really irritate me, are when somebody's really trying to be supportive. They think praising me like a puppy is the right thing to do, when I essentially behave normally for a moment.

And Lisa, I think I get what you're saying, that if we aren't that bad, then nothing is expected of the compliment giver. They want us to be ok, so they don't have to do anything different.

Alan, I think you hit it on the head!

quote:

if we aren't that bad, then nothing is expected of the compliment giver. They want us to be ok, so they don't have to do anything different.

This reaches to the bottom of the disservice done by the compliment. It isn't us, it is our cause that is hurt by it.

How often do we work hard trying to appear normal? How often are we embarrassed when one of our deficiencies shows, even to one who knows of our deficiency in that very thing?

It is natural to present as we do, as normal appearing as possible. It is also good. In hiding our deficiencies I believe we encourage our brain to develop new pathways to do the task the ability for which has been destroyed by our disease.

This however does not cure the problem that I see as a very serious one.

Somehow we have to educate people to the fact of Early Stage Functionality and teach them to embrace it. It is in their better interests to do so. They may not want to deal with us, touching such a sicko is well so ugh! But they all need to learn this will affect their pocket book when we dip more quickly into needing Costly Care.

If we are accepted more readily and given outlets to express ourselves in our altered AD state there is every reason to believe we stay in Early Stage longer saving them the high cost of caring for us!

Alan et al,

I think it's because I work so hard every day to keep up and appear normal that it angers me because most people don't/can't understand the struggle.

No, I'm not gorked out as people in later stages. But, I'm fighting EVERY day to keep what I have and not decline further.

While it would be nice for people to understand our struggles, I think that most people are dealing with struggles of their own. They may be financial in nature, medical, etc. Their struggles may be with a spouse or with their children. But everyone seems to be going through something that is weighing them down. With the world such as it is today, a lot of people that I know are just trying to make it even though they have lost their jobs, marriages are on edge, etc. All of these problems are real to them. In a lot of cases, they cannot see, therefore relate to ours.

gyr, why so logical? I was more in the mood for whining! But yes, every living one of us has a running narrative in our mind, the story of our lives & we're the star of the show.

Lisa, I still don't know if I've ever been gorked or not. Sounds . . . traumatic.

quote:

Originally posted by gyr:
While it would be nice for people to understand our struggles, I think that most people are dealing with struggles of their own. They may be financial in nature, medical, etc. Their struggles may be with a spouse or with their children. But everyone seems to be going through something that is weighing them down. With the world such as it is today, a lot of people that I know are just trying to make it even though they have lost their jobs, marriages are on edge, etc. All of these problems are real to them. In a lot of cases, they cannot see, therefore relate to ours.

This is very well said. Reading a dozen of the above missives it seems like a "Damned if you do and damned if you don't" situation. If no one says anything, then they don't care. If some one does make a comment, it can be taken as offensive. I read this to try to get a handle on what is to come for me. My brother has alz. I am diabetic and the probability is great for US types to get alz. So maybe I just need to go away until I have arrived at this glorious time in my life. But I won't.

quote:

I am diabetic and the probability is great for US types to get alz.

I've read that you could almost call Alzheimer's "Type 3 Diabetes," that it occurs from too little fuel getting to those parts of our brains.

Similarly, the line between AD and vascular dementia blurs, as dementia can be caused by insufficient blood flow to the brain. Damage is done, but not necessarily is there ever an outright stroke.

So John, what do you know that's cool about dementia? Is your brother's AD early onset? What about his Stage?

Our concern that people understand our struggles is far more than whining.

We are the proverbial canary in the mine shaft waiting to give warning of the economic toxicity that will accompany the escalation of our disease

I am currently writing a series of essays on my Blog, five in number to date, about the needs of AD. I am doing this as a member of the newly formed board charged by the State of Minnesota to determine the needs in our state for the care of AD. I am one of 20 on the board, two with AD, two caregivers and the rest professionals or members of the MN Board on Aging.

I am writing the series to give the members of the Board insight through the experience one with AD has with the care and treatment of the disease. In one of the segments I offered to following comment:

quote:

Those in need of care are everyone affected by this disease. The object of Care needs to address the Universe of Need. That Universe includes all of us affected or afflicted. It includes all of our needs from supportive help to in-home and institutional palliative and end of life care. AD produces trauma of many shades to those affected. All of them and all of it need to be provided in a positive, helpful, compassionate way addressing the heartfelt pain of dealing with it.

We need programs designed to provide Complete Compassionate Care to the Community in need by the Community positioned to provide it.

This is the spiritual and public duty we owe one another. My Blog and all of my writing speaking from the platform of the Early Stage of this Disease. It is my way of trying to do my part for others. I ask all of these who read this to join me in this endeavor.

If we don’t do it with our hearts and our souls lets do it through our financial self interest. The Cost of this Disease as it Escalates as more and more become in need will overwhelm us economically. Care is spotty now and needs so much improvement.

The direction of Gyr’s comments with all due respect are such as to temper the acuteness of the issue. I don’t think we can afford this. People do need to understand. If they do not it will cost them directly. We are in bad shape economically now. If we let the calamity of AD loose everyone is in the toilet!

If we don’t do it with our hearts and our souls let’s do it for our financial self interest.

Mike, I do believe we're at different intensity levels tonight. There is a time to be the canary in the mine shaft, and there are times for the caged bird to sing.

Whatever that was supposed to mean.

Be sure to let us all know if you give any testimony re: AD that is recorded & on the net. I'd like to hear you getting into the meat of the fight, and I'm sure lots of others would, too.

Alan
My brother is 73 and it has been at least 8 years and getting worse. He did not know my oldest brother this summer. There are times when the sugar level gets too high the brains fuzzes out. Thinking rather goes out the window. Rather frustrating but I know I can return to the level of thinking I am used to in about 30 minutes after injecting. Speech is slurred at times. There is nothing cool about dementia that I know of.

OK, so trying to be upbeat doesn't mesh with you right now, Idaho? That's fine, and understandable. Speaking of brain fuzzing out, I've known insulin-dependent diabetics get arrested for public drunkenness and DUI, because of what diabetes does to their cognition.

Idaho, are you saying you have dementia, possibly Alzheimer's, or are you just talking about blood sugar swings?

Just blood sugar swings. I take care of a 4 year old to keep me on my toes. He is always coming up with something that keeps me laughing.

quote:

I take care of a 4 year old to keep me on my toes.

Could there be a better thing, than keeping him company? I think not!

quote:

Originally posted by Alan in Colorado:
[QUOTE]I take care of a 4 year old to keep me on my toes.

My doctor even suggested that I volunteer in some capacity. She suggested with children or animals. Something that would give me purpose.

Lynn

I went for a walk with my 11 year old grandson a few days ago and he kept saying "grandma you need to look in all directions before crossing the road." I thought I had looked in all directions, but I guess not.

My wife and I have been taking care of our 4 year old since he was born. He is a great delight. A little story: I was tired this day and my grandson (4) talked me into sitting on the swing while he played in his dirt pile. Dirt is like gold to him. After a while he said, “Grandpa. Can we go to the park today?” I told him I would think about it. A few minutes later he asked, “Have you thought about it Grandpa?” I answered, “Not yet.” His reply was, “Let me do the thinking for you Grandpa.” At this time he put his hand on his face, got a little concerned look and muttered “think,,, think.” Then he said, “I have thought about it Grandpa and we are going to the park.” I got up from the swing and went in and told his Grandma what he said. Then we went to the park.

Sometimes it is nice to have someone do the thinking for you. Especially when it comes in small packages.
And it does give me a purpose to take the best care of myself that I can. He will need me another 12 to 14 years. Or is it I will need him another 12 to 14 years? Yes that is more like it.

John that was a great story. It made my day thank you.

Cheri B
You can find a few more stories at:

http://idahostevens.com/idscom/?cat=17

Writing is therapy for me these days. It also helps to remember moments in time that I REALLY don't want to forget.

I wrote a song for and to him that I performed a couple of times. This is why I want to hang around a little longer.

http://idahostevens.com/idscom/?page_id=8

It is a great privilege to make your day. Thanks.

John, I see that your grandson has perfected the Vulcan Mind Meld. Excellent . . .

My grandson is in Wash. state and I'm in Colorado. He has his own cell phone, but it is with Verizon. I'm not on Verizon so he told me I could only text him. I text him once in while, but he text back so fast I can't answer him so I told him he need to start checking his email.

Alan - Cheri
He comes up with some minute detail of things. Something that was there yesterday but is gone today... he does not miss the shift in time and space. Vulcan MM... humm Live long and Prosper my friends in Colorful Co.

John do you go to Jackpot very much. I know twin falls isn't very far from there.

John, give your little grandson a hug from me!

Iris L.

Cheri: Seldom go to Jackpot except maybe to eat. When my wife's mother would come to visit she liked to go there. All of our parents are gone now. Jackpot is 50 mile away.

Iris: Thanks for the hug. He gets many many hugs a day. We can "squeeze" another in there. I love it when he snuggles in beside me with my arms around him and he goes to sleep. It is always a very special time. Does not get old at all.

When I was married to a previous husband we would drive from Tacoma Wa to Jackpot every Thanksgiving to meet his parents. They loved it there and went quite often. They lived in Bozeman Mt.