Hi to All,

Have been feeling more "detached" lately. Not only with Mom but with lots of people.
Are y'all going thru this to?

Some days are better that others but I do find myself pulling back, pulling away. Is this the disease or just me trying to cope?

Does anyone know?

Lisa, there are three kinds of people in this world: Those who can do math, and those who can't.

When you look at your problems, it sounds like you're wondering if it's THIS, or is it THAT? It's gotta be one or the other, right? Nope.

Everything happens for a lot of reasons. The medical super imagers have taken brain shots while different kinds of processing were happening. Pretty much every decision is bounced all over the place, before it gets to our conscious mind.

So, we know that a thought so serious as how close emotionally to get to people, that thought is shopped around for various inputs. One part of your brain says go ahead, another part remembers how you're having trouble containing strong negative emotions and you should be careful. Another part points out that your energy is limited, so hold some of yourself in reserve, just in case you need to focus later. And so on.

But really, what do you think?

Ya know, Alan,

I don't really know. Historically, I was a pretty "heady" person. I don't know if that makes sense or not?! I used to process things pretty damn well. Good thoughts processes, had been through a good bit of therapy (including Analysis) and could think and feel my way through a lot of turmoil. (have had my share in my life). Had a strong "inner child" which helped my adult self a lot!

I know things, feelings, ideas bounce around in our head. Thoughts, feelings etc. have a lot of traveling to do. It's just, now, I can't figure things out anymore. I don't know if it's that I don't reason well anymore, or it's emotional (depression, anger, anxiety), or all of the above. It just doesn't sit well with me anymore! It's UN-comfortable!

The doctors tell me I still function well because I have that reserve thing. All I know is each and every day is a struggle. Some days are harder than others (of course). I guess I'm getting tired of all this!

I want my OLD self back! I know that person. I don't know who I am now. I don't recognize me!!

quote:

I guess I'm getting tired of all this! I want my OLD self back! I know that person. I don't know who I am now. I don't recognize me!!

That brings up something sensitive. Caregivers talk about how they know that their loved one is still there, shining out from the tangles of our disease. Frankly, that isn't my experience. I'm aware that I'm losing my self, and I'm not open to that being rationalized. We are the total of our experiences, run through our filters. There is so much I've lost, in working memory, acquiring new long term memories, mood control, and scattered long term memories that are dissolving.

And speed! I was in high school, when I came to appreciate that I thought faster than everybody around me. Not tremendously so, but I could answer a question before anyone else. Now? I'm slow to get to a point, and I'm often wrong. Sometimes I'm irrational, and/or furious, and/or tearful, none of which I practiced much before AD.

As for figuring things out, that requires some adjustment. I used to be a "flash of insight" type, with most of the processing going on underneath the surface. I don't have that beneath the surface stuff so much anymore. If I try to think through something all at once, nope, ain't happening. But, if I do the old "one thing at a time, one step at a time," sometimes I can still get there. Just differently.

And soon, I won't be able to do it that way, either. Oh well, nobody said life was easy. Nobody who knew what he was talking about, anyway.

Alan,

Your thinking processes sound like mine. I was way ahead of almost everybody else until 8 years ago. It caused me to be very incompassionate.

Now as I have to struggle to focus to put the thoughts together, I have a better understanding of how many others have always thought.

My doctors and therapists are amazed at my high functioning. They almost deny that I have any struggles.

But, I know how often my awareness just is not there. I know how hard it is to focus to get thoughts together. I know how overwhelmed I get from too much stimulation.

That 'beneath the surface' skill is gone with me too. That is my biggest problem with driving. If I am not focusing on staying in my lane, my subconscious mind will not keep me in my lane.

My Occupational Therapist thinks I should be driving more, even though I had a major melt down while driving the drivers training car with her. She said that my decision to pull to the side of the road and stop showed that I had adequate skills to drive.

I don't want to be driving if I have to be at 100 percent to drive safely. I know how often I just spontaneously drop to 50 percent capability.

Just because I have so many work arounds to get tasks accomplished does not mean that they are easy to accomplish.

What does it take for others to realize that we are very aware of our problems even when those problems are not visible to others?

The therapist tell me to forget about how I used to function. Then they tell me to go on living as if I still have the same skills as I used to have.

So, I guess I still need to keep working to find a life that I can live in my current condition. I definitely can't live in my old life.

Alan,

Like Iris, I am my own caregiver (along with being Mom's caregiver). I used to be proud to be me. Like you, most of the time I was the first to answer. The top of my class and in the my Nursing profession. I was the DON or Administrator.
I don't know what I am now! I don't know who I am becoming? And what will the end be like? A burden, totally dependent? Imbecillic? Raging Lunatic??? Ravaged with anxiety and fear?

Oh Alan, I just don't know anymore.

I am MAD and SAD at the same time!

Make any sense?

quote:

What does it take for others to realize that we are very aware of our problems even when those problems are not visible to others? The therapist tell me to forget about how I used to function. Then they tell me to go on living as if I still have the same skills as I used to have.

Mark, no therapist is good at all problems. We have our strengths, and most of us want some clients in our weakness category, so we can keep growing. Then there are those who won't be named, the kinds that each of us must learn to recognize, and get them to someone who can help.

For instance, I might think it's good for us to know our deficits, and adjust our style to better handle things at our current level. Suggesting that we just fake it, a.k.a. go on living as if I still have the same skills . . . I don't see how growth comes out of that.

Lisa, some of us really get socked with the mood challenges. Knowing that you've been a director of nursing, compared to your capabilities now, well, no sane person could feel good about that.

As for on down the line in Stage 6 & Stage 7, I wonder about what I'll be like, too. But, there's no way I can accurately anticipate that. Whatever it is, it's something millions have already gone through. For me specifically, I always end up picturing the same circumstances: Heavily sedated, napping away the day and then back to sleep at night.

I just don't think we can know what it'll be like towards the end. I'm inclined to think we won't be conscious like we are now, not forming or retrieving memories, just a functioning brain stem.

So Lisa, what can you tell me about how you picture yourself towards the end?

Alan,

It is one thing for a psycho-therapist or behavioral therapist to say to go on living life like you did in the past. I know there are plenty of them.

It is quite another thing when the speech, occupational, and recreational therapists tell you to forget about how you used to be but then want you to go on as if you can still be who you used to be.

If it was a psycho/behavioral therapist, I would just tell him/her to buzz off.

My therapists are specialists serving the brain injury, stroke, dementia, and other groups needing help with cognitive issues.

Actually, they are not my therapists anymore. I canceled all future appointments yesterday morning when I came to this realization.

Gee Mark, do you still need to see those type specialists? Is the time to see them at an end, or is it just time for a new team?

When I got approved for SSDI, I went on Secure Horizons Medicare Advantage health care plan. My new doctor wanted me evaluated and to try therapy to see if it would help.

I probably wasted 10 $35 to $45 co-pays. I am still waiting for the co-pay bills.

They had me scheduled for another 7 co-pays and visits this week so I said, Enough.

First Doctor wants me to see another doctor for a medication review. Another $45 co-pay.

The worst part is they scheduled so many appointments that I missed the salmon fishing season. It ended early tonight. Anglers were averaging one fish every two hours of fishing. Nice King (Chinook) salmon too.

Hey Everybody

I've been reading the posts on this thread. I too can say that reading is gone, it takes way too much effort! Besides, it just frustrates & irritates me. It's not worth being in a fowl mood.

Lisa, I relate to what you are stating regarding "who I was" and "who I am." My personality (I believe) swings from one person to another. One minute I feel pretty normal, look at my "to do" list and then forget what I set out to do!

Alan, I think your right about us being a "fun ctioning stem,". I remember my grandfather lying in a bed, sometimes with a smile, but, most of the time, he would moan, loudly. I remember asking if he was in pain, the nurse told me that sometimes those with Alz will make undetermined noises, for what, they don't know. But medically speaking, he was perfectly fine.

I try to take each day as it comes. But, like you, I get very down and it's hard to dust off the britches, because of not knowing who I'm suppose to be today?

M

Mary, it's interesting that you see your personality as feeling like swinging from one person to the next. My stuff feels like there's just me, and a little more goes away every day. I'm pretty sure we're saying the same thing in different ways.

Another interesting difference is that since sometime last year, I've been gradually cutting back my tv & movies. Maybe not every show, but real often, I just lose track of what's been happening, and can't enjoy it any more. Haven't enjoyed a movie in about a year, unless I can rewind it.

But with reading, the words are there for me to go over as often as I need to. Another reading adjustment, I've come to enjoy just reading on the Internet, all sorts of stuff. I don't remember hardly anything, but it's still pleasurable.

Mark, I'm thinking 7 co-pays a week doesn't have my name on it, either! Good grief, what were they trying to do - run the bill up before you escaped?

Alan

I guess what I was trying to say is that there are days that I am pretty positive and upbeat! Then, at a drop of a dime, I can become very emotional, angry, upset and easy to cry.....not at all who I used to be. This is why it's hard for me to understand who I'm suppose to be on any given day! I'm still not quite sure who I am anymore!

And yes, I realize when I'm "swinging" from one person to the other! It's like being outside the box and looking over it from all angles. Strange I know

M

Mark, I was going to ask you what the occupational therapist did for you before you said you fired them. I had my first visit with an occupational therapist today. I discussed my memory problems. I'll see what she comes up with for my next visit. Anybody, what can OT do for the memory impaired?

Iris L.

The primary value an OT has is to help you learn new ways to do the things that you can no longer do the old way, Wwrk-arounds and other accommodations. She did some testing, practice work with a light board, observed me doing a variety of tasks including driving.

What she could not see was the level of effort I had to expend to get the high results.

One of my problems is coming up with options to a task or situation. If I need to have breakfast, unless I have verbal cues, I will struggle to come up with what the options are.

I end up staring into the refrigerator or pantry to see if something prompts me. If I am not prompted, I may just settle for a yogurt. If I see strawberries, I will be prompted to have strawberries on cereal. Without prompts, I will rarely realize that I can combine two or three items to create a meal.

Those creative thinking skills are absent.

The Speech therapist was more like a Occupational therapist. She never did any speech therapy evaluations or therapies.

Both agreed that my high intelligence has allowed me to have high functioning except for the times when I mentally crash or zone out. They had no memory techniques for me to try, only work-arounds like lists and timers/alarms.

A Recreational therapist took me to the store with a shopping list and observed me trying to find the things on the list. It took me a while to get oriented to the task and the store. I finally was able to make sense of the task.

Here we are in Idaho and the Rec Therapist went to the same high school in Connecticut that I went to. She was there with my younger (much) brothers.

I think there are definitely things an OT can do to help persons with memory or other cognitive problems. Just need to find a good OT who knows memory skills training techniques.

Thanks for the info about OT, Mark. I can see that a modicum of creativity will be necessary for the OT to be able to help me handle the degree of memory impairment and cogitive dysfunction that I have. Well, I need help and I'm going to get it, one way or another.

The psychiatrist has referred me to a brain injury rehabilitation program. I'm still waiting to hear from them. They won't be in the office until Monday (today's Friday).

The problem seems to be that no one really knows what to do with us. They're making things up as they go along. I have to figure out how to relay to them what my needs are. I have to think creatively when my creativity is shrinking.

Iris L.

Hi Iris,

If you can figure out the "needs" let the rest of us know too. I'm struggling too, in attempting to figure out "my needs."

I'm looking at something locally for those with memory loss and caregivers. One component of the program is "brain exercises." Although I must confess I do find it rather demeaning in some ways...like I have done something wrong.
It's a new program, costs are unknown, whether it would be covered by insurance or if it would be a good fit is unknown.

I try to keep my calendar, reminders and to-do's lists electronically. A lot of things in my physical world seem to be disappearing so I'm trying to keep the physical objects I do need to a minimum.

Sometimes I think hanging a "sign" in places where I have a tendency to stand and zone out would help. I'll have to think about that one some more....

Cindy

quote:

Originally posted by Iris L.:
Thanks for the info about OT, Mark. I can see that a modicum of creativity will be necessary for the OT to be able to help me handle the degree of memory impairment and cogitive dysfunction that I have. Well, I need help and I'm going to get it, one way or another.

The psychiatrist has referred me to a brain injury rehabilitation program. I'm still waiting to hear from them. They won't be in the office until Monday (today's Friday).

The problem seems to be that no one really knows what to do with us. They're making things up as they go along. I have to figure out how to relay to them what my needs are. I have to think creatively when my creativity is shrinking.

Iris L.

quote:

Sometimes I think hanging a "sign" in places where I have a tendency to stand and zone out would help. I'll have to think about that one some more....

Cindy, I'm trying to imagine what you mean? Could you give an example maybe?

Cindy,

I am confused about where you get the idea that exercises and such relate to doing something wrong.

Regardless of the cause, we need to go on and work with our symptoms. There is no room for blame. It does not change anything. If you are having problems, it is past any time to be concerned with cause.

The important point the therapists make is that cause and blame have no meaning. The past is just that. We must prepare for our future.

The idea of needs is rather simple. What can you not do now that you used to be able to do?

Let the therapists deal with how to overcome the lost skill.

Getting used to using signs, lists, calendars, and timers will be of the utmost importance. Some of these habits need to be trained into the patient before they lose the ability to learn new skills.

My father used lists, name tags, signs, a makeshift daytimer, and his watch to make it through the day. My mom had to learn to not be late. If she said she would be back at 2:00, she needed to be back by 1:50. Otherwise, he would see the time on his notes and start to fret.

He had learned to depend on lists and such long before he had lost his memory and other cognitive skills. These over-learned skills were some of the last skills he lost.

So, I hope you understand the need to learn these coping skills before it gets too late to learn them.