Just a normal afternoon, staring at my computer, trying with all my might to remember what I was thinking just a second ago. Was I going to do a search? Maybe email a buddy? Check headlines? Nope, no luck, as usual. And I felt the deep anger, the kind that starts in your chest, welling up like lava through the neck then exploding in the brain. Y'know what I mean?

How many times a day does this happen, this losing what I was thinking? But then, how could I know? I think it happens a lot, that's my best guess. A lot.

Hey, reader - - I'd like to hear from you, tell me if this is going on with you/your loved one. I'd like to hear how you handle it. Please?

I keep lots of post-it notes and jot down my thoughts. But later, when I look at the post-its, I can't always figure out what I wrote.

Iris L.

Alan,

I wish I had some words of wisdom. I'm living just like you. I'm a volcano waiting to erupt! It's pretty frightening.
I can't do post it notes. They make me crazy!

I do keep a small journal with me most of the time. It has the day, date and some times in it. I write everything important in it ( at least everything I can remember). lol.

I've often wonder how many things I forget and how often. Many times I start to do something a draw a blank. It's maddening!

Please, let me know if you figure it out!

Adapted? I don't think so!

A lot of times I feel great, think I'm thinking at 100% capacity and then something happens to remind me that I'm not. Again and again and again and again and again and again etc.

I start to become cranky, then grumpy, then edgy, then angry, and then enraged. I don't remember how I went from cranky to enraged just that I am.

On a more generous note, I will tell myself, well of course you become enraged. The things you do and have done for so many years without even thinking have now become laborious. Every task, every thought and even words have come to be a struggle. So I try to cut myself some slack and give myself a pat on the back for what I what was able to do today. Even the simple things like making coffee, turning on the water, getting up, etc...

Cindy, you say it so well. About thinking you're at full capacity and then go splat, I totally understand that one. What worries me is that I probably, actually, was at full capacity, it just didn't take much to reveal my low wattage.

What I hope my massive Seroquel dosage will do is, at least, give me that little buffer zone, that brief interval between the blow-up starting, but before the rage comes out. Just a chance to control the monster, not let it get out.

I am so glad you all are out there. I don't hit the site very much anymore and was out of town the past two weeks. However, the conversation you are having is what happens to me all the time. I find myself heading for the computer to look up something and cannot remember what. I head to the kitchen to do something and cannot remember what. I make notes and later try to read them and I haven't written enough to give me a clue of what I was trying to document! I waste time trying to figure out my writing that used to be very clear. Sad thing is, when I'm writing the notes, they seem to be clearly written at the time! When we were out of town visiting my daughter, I went to the parking lot of their apartment to get something out of the car. After I figured out which car we had rented and after numerous attempts to open the door with the remote and remembering that it hadn't worked the entire trip, I was able to retrieve what I was looking for only to get back up to the apartment doors and realize I had no clue which door I needed to enter! I just stood there. Finally someone opened the door. Another thing I kept doing was head down the hallway THE WRONG DIRECTION when coming out of the hotel rooms. We stayed in about 4 hotels during our trip and I did it in all of them, I do believe. My husband would just stand there and let me walk! After a bit, I'd realize that I was heading the wrong direction... Oh well...

I do those things too.Very agravating to say the least,but life goes on..............

Dear Alan, Iris, Gyr, Cindy et al,

I do know what all of you mean. My daughter & I went to Washington, DC in the spring with the AD Assn. The hotel (can't remember the name) was apparently split into 2 towers. I go lost everytime. Went to the wrong tower. Went in the wrong direction. Wrong floor. It was very frustrating.

But, what does make us go from anger/aggravation to rage in a matter of seconds or in a split second??

I know I can go from feeling happy to enraged in a matter of seconds.

It does take me by surprise which seems to add to the enraged feeling.

It's like when lightening strikes your house and sends a power surge through the wiring blowing out appliances and electronics. About the only thing you can do in those cases is weather the storm and unplug your devices.

How that analogy applies to my life now...make it safe where and when I can and ride the storm as best as possible. Although I do feel like a surfer who has been hanging to their surfboard for dear life as they are being pounded by the waves. It's rather exhausting.

I am glad I'm not the only one who writes myself very clear notes that turn out to be baffling later. Post it notes don't work here...the cat likes to eat the sticky stuff on them.

What's a guy to do? If I get out and around, I wear down and have unpleasant symptoms. But my doctors all say that I have to make myself get out and socialize, that will keep me out of the nursing home longer.

But when is it too much, time to retreat to my car? Versus when should I just take it and be quiet?

Alan,

I think only you can decide that.

Each day sometimes each hour is different for me. Perhaps it is the same for you? I think it's the constant adapting will all have to do that wears us out! Perhaps deep inside us somewhere it registers as anger/rage?

What works one day doesn't necessarily work the next.

Alan, You are the master of your universe!

Cindy,
I know exactly what you mean!

Cindy, a metaphor that uses the ocean is a great idea. I've been in the water a couple of times in my younger days, when the surf was pounding right at my skill level for body surfing. There was a particularly huge wave that I tried to ride, and it wadded me into a ball and drove me face-first into the sand. If things had been different in the tiniest way, I could easily have snapped my neck.

OK, I don't think there's anything profound in there. I just got to thinking about the ocean.

Lisa, shall we call you, "Charge Nurse of the Universe"?

I don't know if I have the beginnings of AD or not. Can't get tested. But I do have a smaller version of what you all are going through. I can still control the anger, up to a point, then I explode. And I am getting more fuzzy and forgetful in my thoughts and actions.

A very close friend of mine suggested that I get one of those small tape or probably digital now, recorders, and leave myself messages or reminders of to do things.

I still haven't gotten myself one though, because I keep forgetting when I'm out shopping. I guess I need one to remind me to purchase one.

Hi guys: Been out and about so have not been keeping up with and chipping into the conversation. This thread prompts response and puts me back into the whirl.

Yes, Alan, and all of you others who have responded, "Me Too!" I spend so much time trying to remember what it was that I was just going to do. Gyr's comment:

quote:

I find myself heading for the computer to look up something and cannot remember what. I head to the kitchen to do something and cannot remember what. I make notes and later try to read them and I haven't written enough to give me a clue of what I was trying to document! I waste time trying to figure out my writing that used to be very clear. Sad thing is, when I'm writing the notes, they seem to be clearly written at the time!

could have been written by me Word for Word

I haven't experienced the rage as yet (and pray god never!) but have what is probably some variation. For the last month or two I have been developing a state I fall into all too often that I have come to call "the Jitters" I can actually feel a tremor on the inside although as yet it does not manifest itself on the outside. This is accompanied some of the time by a generalized anxiety which is not associated with any feeling or circumstance. I have finally resorted to taking Lorazepam to stem it which it does.

I just returned from a 12 day trip to CA, Santa Cruz for a Bar Mitzvah and Carmel for a wedding. It started out a delightful trip which I enjoyed no end. After 7 days the Jitters set in, bad, very bad. So bad I could no longer go out, I had to stay in and could stay settled only while doing that.

I am back now with the Jitters and they have not gone away. I know I have to simply stay home, in my nest, rest and let things settle and I will be OK. Nonetheless I made appointments with my Internist and Neurologist, just to check in on this.

I suspect I have reached another plateau in the digression, part of this disease we got!

Mike,

I'm so sorry to hear about your jitters. I'm glad you are going to check this out with your doctors.


Do you find if you increase your exercise the jitters decrease?

Please, keep us posted.

I get out & do things here at home & away from home.I don't like things I do or say but worrying about it would be worse......

Mike, we have to get out and socialize & stuff, or we decline faster. Every doctor has told me that. So, up and at 'em!!

The jittery stuff could be a lot of different things, it could be primary, or even secondary to another problem. This is why we need excellent doctors. I hope it isn't just one more bleepin' thing to get used to.

Hey Everyone

I can so relate to what each of you have psoted! I nolonger write notes. I forget to look at them. When I finally do look at them, they have no meaning to me. I've also notced in some of the notes that my leters are backwards??????

Dr's tell us to keep active, keep on interacting, etc. But what they can't seem to understand is that the above stated is exhausting, frustrating and then it just ticks you off, just because! So, the least I have to do the better. I'm tired of walking back n forth to the same rooms and have absolutely no idea why. I've tried to prepare meals. I turn circles in the kitchen becuz I can't remember where things are or what I was looking for to begin with! Once I finally do get all items on the counter to begin, I can't for the life of me remember how or why I'm trying to prepare something!

Anybody else go thru this?
M

I actually had to chuckle when I read this because it describes my actions perfectly. While all of this is so frustrating, it sure helps to know that we are not alone. While our family and friends may not understand, it helps to know that there are others that understand. Hang in there. I understand... I'm in the same boat and as crazy as it sounds, it is comforting to receive confirmation that I am not alone and I am not dreaming up this entire ordeal like some seem to think. Take care.

quote:

I've also notced in some of the notes that my leters are backwards??????

I haven't been having that one, so far. My odd one is, doing crossword puzzles online, I sometimes correctly get the first letter of a word, but then can't finish it.

And the kitchen! I've always cooked, going back to like 8 years old. I like improvising, seldom use recipes except for desserts, those guys seems to need precision. But the kitchen is slowly turning on me. I get confused as to what cabinet has what, have to look every time it seems. I forget about things on the stove top, but I'm good at setting the timer to go off at about the time I need to come back and check on something. I manage to boil things over sometimes.

Am definitely having similar problems and trouble with anger lately. Have had diagnosis and symptoms for about 3 years and dx. as EOAD last Nov. Have tried to talk to spouse for the last three years about finances, problems I have taking care of them (haven't balanced checkbook in over 2 years) hung in there and worked until almost two months ago. functioning is worsening and I know I am withdrawing. I quit asking for help and am about to the point that I don't care and my husband told me yesterday we need to talk about the money. I just looked at him and walked off.

quote:

Originally posted by Mike Donohue:
Rita: I can appreciate your reaction and your irritation. My Wife has been a willing and sensitive person in taking over handling our finances then taking over the checking accounts when I could no longer handle them competently. On the checking account I tried and tried until I finally gave in after I was five months behind.

I however have this conciliatory thought as fails to fit the hard boiled trial attorney I once was. How much of his not listening when you asked for help or how much apparent gall went into asking you if you needed help stems from good old fashioned denial? I think it is hardest for family to accept a parent or a spouse really has this disease. It is so difficult because the acceptance of it affirms the horrid consequences that do follow from having the disease.

I don't know how you overcome this. Perhaps tell him a lawyer told you it is a hell of lot cheaper to work out this failure to address your circumstances with a counselor as with a lawyer.

It would seem you might need one or the other to secure your financial wherewithal because of your having the disease. Financial and estate planning are essential to dealing with this disease

My situation with confusion and anger is close to identical. This computer seems to be my only way to communicate. My verbal communications cause arguement and hurt feelings. I'm used to being a good communicator and worked as a professional for 30 years. My wife would like me to be more active and walk the dog more. I get tired of doing that because I can't walk too far away since I have a prosterate problem that keeps me close by. The entire problem is exaserbated by the fact that I no longer have a drivers lisene(sp). It also kind of hurts when I realize I don't have feelings for things that I used to be pationate about.There is more but I need to quit winning for now!

Thank you all for sharing your feelings. You have given me great insite and understanding to what I thought was unexplained anger from my parents. You have made it so much easier for me to respond to them differently now when they blow up. Neither of them was able to express to me what the problem was. After reading all your stories I can look back now at each situation and see what happened and what I can do in the future to help afford some of these frustrations. Please know that you are all helping so many others by sharing. Thank you so much

Deana, I think the hard lesson is that people with degenerative brain diseases don't always get to choose our emotions. Newcomers to this arena often get frustrated, even angry, with us, thinking we could do better if we wanted to. While that might possibly be true of somebody, that isn't my experience with myself, and the others I know with dementia.

Another hard lesson is, how to be optimistic without being unrealistic. I don't think believing lies is good for us, e.g. don't try to tell me I'll be alright. My experience is that people in general don't want to consider that there are incurable, terminal illnesses standing right next to them.

Like Tom, I can type out much better than I can speak. Internet messages like this one let me review and revise as much as necessary. I don't always catch my inappropriate mood and comments, because sometimes I'm not aware that I'm being that way. Also like Tom, I'm a different person, different interests, different capabilities. And, I too feel like I'm whining, but I need to talk about what's happening to me.

Nothing about Alzheimer's & other dementias is easy.

Deana,

Thanks so much for sharing your feelings about our feelings and situations. We (people with EOAD/AD/dementia) are sometimes aware that we make things difficult (not always) for our loved ones/caregivers but we don't seem to have much control. We are on an emotional roller coaster most of the time. As our communication skills dwindle down, it becomes more difficult to handle and adjust!

Like Tom, Alan and many others on these boards, I tend to do better here because I can edit and re-write what I am trying to say. I have spell check on all the time now. Also, like the others, I was known to have pretty darn good communications skills both verbally and in writing. Now, I cringe at some of my postings but I do the best I can.

I hope we can help a lot of of people out there trying to figure out how to cope.

Welcome.

I know that my spouse and family are in denial, but I'm not out of it enough yet not to see the looks when I make mistakes, at least some of the time. Telling me I'm doing ok when I know I'm struggling is more frustrating than reassuring. I have had access to filing for POA, living will etc., but kept putting it off. I know I'll have to do it soon or my wishes may not be followed. You all are very helpful to me. I know I am not alone and it helps to sound out my feelings. And it is easier communicating with this technology. Am very tired today, but wanted to tell you all how much I appreciate being able to come here.

Lisa, Tom, Alan, and others

We all are soo fortunate to have each other. Riding the "roller coaster" with a "monster" who tries to play tricks on us. Funny thng is we all have basically the same perspective....support from and for each other.

No matter how "bad" the road gets, I truly believe in my soul, that we will all, in our own ways, remember each other.....always!
I just pray that our demise will be for a better future for our families as well as others.
M

Dear Rita,

I'm glad I can help. We all are. I've done all that legal stuff to make sure ALL my wishes are carried out!

Thanks for sharing.

Dearest Mary,

I do feel very blessed in knowing all of you and sharing this journey. I couldn't do it without all of you!

Mary, what do you mean about our demise? Are you feeling ok? Are you depressed? How are your meds doing? Perhaps you should call the helpline @ 800-272-3900??

Talk to me, please! Where are your brother ans SIL??

Lisa

As of right now, I'm doing fine. What I meant by "our demise" is simply this. Hopefully, in the very near future, there will be a cure for this monster....a "prince of drugs" (if you will) to slay the monster so that our families will be vaccinated against the monster!.
Sounds cheezy I know but, this is the easiest & lightest way I could affirm my meaning!

Thank you Lisa for your concern. At times, I wish I could speak w/you on the phone, privately.

M

Mary,

I'm glad to hear that's what you meant. I was a little concerned.

I do hope that this monster will be slain in the near future. Perhaps not in time for me, but for my daughter or others like her.

I'll e-mail you.

Mary,

I tried to e-mail you @ mpleta@live.com but it came back. Is that your e-mail address?

Hi Lisa

Yes, my email address is: mpletka@live.com

M

I'm new here and very happy to see I'm not the only one with these strange problems. I stopped writting notes for the same reason as everyone else, I stopped carrying a notebook with me everywhere because I couldn't figure out what to write in it. As for the kitchen I was another that has cooked since childhood and now the only thing I can make is what we call surprise. My grandson says it is terrible but my husband will still eat it. I start out to make something but either forget what I was making or forget how to make it.

Welcome to the group. I joined in December or around that time. I don't visit every day like I did at first but I do visit frequently. The site is definately a safe and welcoming place where we all share our thoughts, challenges, etc. I think the thing that I like most is that it is a place to communicate with people that understand what I'm going thru because they are going thru the same. Even though we all have challenging days, we know that we can reach out to each other and ask questions, vent, provide and receive support, etc. Sometimes it just feels good to be in an environment where people not only care but they also understand. Once again, welcome.

I have had a really hard time with friends and family that are in denial. They will see me on good days when I can actually sound like I know what I am talking about. They don't see the eating surpise everyday, not remembering to turn the shower off, not remembering to turn off the burner, not remembering that turning on the air conditioner will make it stop being hot or the heater will make it stop being cold. That is what has been the most frustrating for me getting others to understand or even see there is a problem.

Oops I forgot to say thank you for the welcome!

No problem at all. I understand where you are and what you are talking about. It is difficult for others to understand. I do know know where you are in the disease. Like I said, I was diagnosed in November of last year. It was difficult but it continues to be a struggle. I am 55 years old. Was 54 when diagnosed.

I will be 57 next month and was 55 I think when I was told.

I hope the site helps. I don't always have input and don't visit the site as often as I did, but it does help to know that we are not alone even as horrible as the "monster" is. Not very often do people on the site share their personal information but I'm going to give you my email address (gwenrichards@sbcglobal.net). That way if you need to talk, I can give you my number. I'll be stepping out of the house for a bit so I'll check back later.

Thank you very much...I do much better at regular email so I will send you an email.

Hello, Cheri and gyr,
It's good to meet you. Many are on this site with various forms of memory loss. The Alzheimer's Association is not just for people with Alzheimer's disease. Please tell us more about yourselves. Feel free to come back often for information and support.

I'm 59, I have lupus, and I have memory loss. I really don't know what is the reason for the memory loss. There's so much confusion. I'm on Exelon patch and Namenda.

Many people use the chat rooms, usually in the evenings. There is a chat room reserved for people with dementia. Drop in when you can.

If you need immediate advice, call the 24 hour Alzheimer's Association Helpline at 1-800-272-3900.

Iris L.

I wasn't discouraging the site... just noticed there was not much activity at the time and was trying to be supportive. I basically just have the postings pop up in my email and I read them and respond if I have input, etc. As far as my situation, I am EOAD and wear the exelon patch. My mother and brother, who have passed away, had the disease. Currently, my two older sisters and I have the disease. Ho Hum.....

Dear Cheri,

May I add my welcome to the others. Unfortunately, We do know exactly what you mean! I'm 55 diagnosed @ 53 with EOAD/YOAD. My friends are like yours (in denial) plus they don't see me on bad days!

Please, come here anytime. You're NOT alone. We're here.

Hi Everyone

Just wanted to check in, see how everyone is doing. Personally, I've been down a few days with "sundown". I feel tired and far from refreshed! How about you all?

I have finally made contact with Fredericksburg, VA Alz. Organization. I will be signing up for the "walk" on Tuesday. Finally, my brother and sis n law are going to attend a class on that same day.

My brother is "hurting" according to my sis n law. It's difficult for him to talk about it. But I keep telling him, it is what it is. Quit denying it! There are areas we need to discuss.

I thank god for all of you on these boards, I couldn't make it without any of you.....

M

It's interesting that at least some of us protect our friends/family from seeing us when we're lost in the weeds.

I do that too, mainly because of the few times I let a friend see me at low ebb. Our lowest ebb is magical - - it makes friends disappear!!

Maybe I still have a fantasy, that friends/family will see when I'm struggling, and they'll do what they can to help. That isn't what happens though. The few who don't avoid me in those circumstances, tend to just take over and direct me. Not helpful, as I can still think through some things, it just takes my brain a lot of work to get there.

Is this similar or dissimilar to what the rest of you experience?

Mary, Alan et al,

I had my garage sale yesterday. Thank goodness it's over. I'm exhausted.

I'm sorry you're sundowning, Mary, but I'm glad you hooked up with a local AD assn. Perhaps that will help your brother and SIL out of denial? The y'all can really talk.

Alan, similar. Many of my friends have disappeared. I think my anger/agitation makes them poof!! I'm like most of you trying to hide my disabilities. I don't want pity but sometimes I do need understanding and help.

Your first question about had anybody adapted has had me thinking. For me, I'm ALWAYS adapting, ever changing, and trying to figure things out. I think the mental part of this disease is the most difficult. My emotions seem to go haywire anytime they want to! I am constantly frustrated and discouraged! And tired!
That's really disgusting considering I'm only 55!

Lately, my seroquel seems to keep my rage at bay which is good. It doesn't do much for the low grade burn, though.

I, too, thank you all for being there for me. These message boards are my lifeline sometimes. I don't know what I'd do without all of you!

I've had many discussions with people with chonic pain who say other people treat them like there's nothing wrong, because they look so good. It's same with the dementias, esp AD. People can still look good, and even function well to the casual observer. I think people don't want to be around you when you fail to meet their own expectations of how you should be. For example, I was kicked out of a women's book club that had met for about 3-4 years. We'd read a book, mostly popular fiction, then meet at each others' homes for fellowship and potluck. After a few years I got so I could not remember the characters of the books, so I finally just stopped reading the books. But I continued the fellowship and buying food for the potluck. Nevertheless, I was accused of not participating by one younger member. Evidently, my friendship and company alone were not enough for her. Result: 1) a four year friendship was gone in a flash; 2) a pleasant weekend social event for women was broken up because of bad feelings because one member became angry that another member had a little trouble remembering.

Even now I feel sad when I think of the book club and my former friends. I never was in a bad mood, I was always pleasant, so I guess they thought I was just lazy. Or something like that. I felt stupid saying that the books were too complicated for me. They were just popular fiction, suitable for average readers. I didn't realize the extent of my cognitive problem at the time, so I could not defend myself well enough.

If my company alone is not enough for a friendship, too bad. I'm not going to beg for friendship.

Iris L.

quote:

I've had many discussions with people with chronic pain who say other people treat them like there's nothing wrong, because they look so good. It's same with the dementias, esp AD.

Iris, is it possible to comprehend how shallow so many people are? There's the beautiful woman I had as a client, who had rheumatoid arthritis, and sometimes her body hurt so bad she could hardly talk. But she was proud, and wanted to look her best. So, naturally, people looked at her and would literally say, "If I looked like you, I'd never complain about anything!"

I understand this to an extent. I have an aggressive peripheral neuropathy that keeps me in pain. I really hurt after exercise, but without exercise I'll supposedly get worse much faster. And I'm talking serious pain, the kind that makes you stop in appreciation every now and then.

As for people backing off, that's been especially tough this past year. Up till about a year ago, I could pass for normal for at least an hour in casual conversation. Alas, I've lost more reserve capacity or something, and often have trouble holding a thought, maybe going on a tangent and getting lost, or maybe just being mid-sentence I've frequently forgot what my point was.

I get angry about this! I think, good grief, it isn't that much harder to talk with me!! Just slow down, and let's go somewhere quiet next time. And what kind of idiot wants to kick somebody out of a book club???