RSS Feed Print
Have you been able to figure out why
Michael Ellenbogen
Posted: Saturday, July 11, 2015 7:35 AM
Joined: 11/30/2011
Posts: 4384


To my dementia friends, that if I have any

Before AD came along I always did everything with high priority. Today I don’t. If I saw it someone else I would say they are lazy but I know that is not why I am doing it. I have lost something and don’t even know how to explain what I have lost. Has this happened to you and have you figured it out. I can sure tell you none of my medical staff knows. Let me give you two examples.

First I let my nails grow so much longer by far than I ever did. I know they are a problem, I think about how they should be cut. I waste more time thinking about it yet I cannot just do it. It is like something is holding me back from do it and that is what I cannot explain. When they final get way past the point of cutting I do it and without any real issues.

The second is I may throw a box near the door that needs to be thrown out to the trash. It can sit there for days and even a week if my wife does not throw it out most of the time. I see it and think about it. I even know I should be taking it out in my mind. I just cannot seem to get myself to do it. In the old days I would have taken it out immediately or by the next day.

Do you deal with this and have you figured it out. I don’t believe I am depressed in any way but it is the strangest thing. Please give me all of your opinions as I really want to try to understand this so I can somehow explain this to others. To me this is mind boggling.


llee08032
Posted: Saturday, July 11, 2015 9:20 AM
Joined: 5/20/2014
Posts: 4408


Michael,

It's funny you mention this. I just threw a little petmed box that I've had sitting on my kitchen table for 2 weeks. I seem to let things go more than in the past and it takes me longer to get things done these day's. Especially, the mundane tasks for some reason. I feel like my focus is on trying to remember important things I need to get done i.e., getting bills paid, keeping appts, projects and deadlines at work. Also I work at keeping my spirits up and trying to connect with other PWD. I try to read positive articles everyday about PWD having meaningful and purposeful lives. I am just coming to the realization how oppressed and hopeless I've felt hearing about only the negatives about this disease! That little box didn't seem as important as it may have been in the past. Maybe were just not sweating the small stuff anymore because we are busy surviving and finding meaning and purpose in our lives? alz+ mentioned that we shouldn't question every change or something that we might associate as part of dementia or progression and that helps me to get less stressed over these types of things. She has been a blessing and Godsend! She, you and other like souls are saving my life and holding me up. Centering me in the sea of negativity surrounding PWD.

Michael Ellenbogen
Posted: Saturday, July 11, 2015 9:57 AM
Joined: 11/30/2011
Posts: 4384


Thanks of your feedback. I so wish I could say I was like you but I don’t do anything anymore.

You can not let all of this get to you as I know first hand how painful some of the things are. It is good to know what may be a head of us so we are not surprised. That does not mean that we need to focus on that. Today we need to live life to the fullest as best we can, not easy at time but we have no other choice. We did nothing wrong to get it and should not feel ashamed in any way for getting it. I share it with the world. It feels so good to just talk about it. They do if you have cancer why should we. That brings out many questions and we need to educate them as they do not know. Yes it is a horrible way to die but there is also a still lot of life left in us in the meantime and we will squeeze all we can out of what life is left to still have a good time. Not always easy. I hate people who try to put spins on it one what or the other. We need to learn to deal with it in our head because we cannot change the course and must except it.


alz+
Posted: Saturday, July 11, 2015 11:46 AM
Joined: 9/12/2013
Posts: 3608


Have never read anything that says WHY this happens.

Found this "Inability to perform familiar tasks. People with dementia often find it hard to complete everyday tasks that are so familiar we usually do not think about how to do them. In particular, people with dementia have great problems carrying out activities in the proper sequence. " That does not explain it.

Then this:

"Apathy/ lack of initiative: A person with dementia may become very passive, sitting in front of the television for hours, sleeping more than usual, or appear to lose interest in hobbies. "

but not WHY except for "disease progression / brain deterioration."

I can not make myself clean off bed side table. I look at the mess and want to clean it and can not do it. I panic less about it now but still get that sick surge of fear chemicals if I dwell too long on that. I do think if my dog was injured and cried out I would be right there.

Because I can still type and use computer (which to me are complicated tasks) it seems I OUGHT to be able to clean a table.

I can do laundry most days, hang clothes in sun to dry, walk dog, scrub out a bath tub. So we are talking about WHY SELECT things brain and body do not cooperate on.

maybe the answer is simply the unknown process of dementia.

To lessen my tension my husband has covered what is dangerous for me (cooking, cutting food with knives, driving of course, major cleaning) We are going to hire some one to clean once a week once we get inside repairs done. I can not get the builder to show up and start and he does not have dementia.

I find a sativa dominant cannabis gets me more operational, however enjoyable it is to then clean a drawer or car floor - the going is slower all the time. The end result is not perfect.

I decided to not stress about it.




alz+
Posted: Saturday, July 11, 2015 11:48 AM
Joined: 9/12/2013
Posts: 3608


There are weeds growing over walkway to steps to front porch. I intend to pull them. Since May. They just get bigger and bigger.

One thing that still hurts and gets me agitated is that I have 50 pages on a computer plus 5 handwritten notebooks towards a book on my experience with my Dad and his dementia and death and my own way of working with it. The inertia has focused on that too, I can not assemble a book like I used to, it was like solving a puzzle, loved writing and editing and making a completed book. I can not usually even turn on that computer anymore. I would like to do a blog - but again, it is not happening.

To post here I spend 30 - 45 minutes on post clean up and edit.

Love your questions.


Michael Ellenbogen
Posted: Saturday, July 11, 2015 1:39 PM
Joined: 11/30/2011
Posts: 4384


I believe this is so hard for our caregivers to understand. We cannot even explain it. This is such a challenge in getting them to believe.

I went from washing my car all the time and keeping it like new to absolutely not care at all. I some times wonder is it because were are facing this death spiral and nothing else is important any more. I keep searching for this answer. Not sure I will ever know. Maybe by the time I figure it out I will no longer even understand. It stinks to be like me as I always searched and wanted to know all the answers. I always had to know and felt there was always a logical explanation for everything. Trying to figure all those things out around this disease has made me realize some things have no answers. Very hard to except that.


Paul Hornback
Posted: Sunday, July 12, 2015 7:46 AM
Joined: 8/9/2013
Posts: 584


Michael, I also struggle with the same thing you are talking about. It is like the brain and body just don't connect. I may want to do something but for some reason this just doesn't happen.

If I am doing something, I must see it through to completion no matter how small the task or else it may not get finished that day or the next. I feel that I often flit from one thing to another, never completing anything. This is quite frustrating.

Like alz+, I've been working on a book for 3 years now. I've gotten it almost done but keep failing to finish the final touch ups and edits. This is quite frustrating but I know it is to be expected so I try not to let it stress me out.

I have found that exercise seems to help me when this condition manifests itself more fully in my day. Maybe forcing blood up into the brain helps. Not sure though.

thanks for starting this thread, it was good to talk with others about it.

God bless, Paul


llee08032
Posted: Sunday, July 12, 2015 10:23 AM
Joined: 5/20/2014
Posts: 4408


This summer I planted Hibiscus, Black Eyed Susan's, Day Lilly, Cone Flowers and wondered afterward if I would be able to keep up with watering. So far so good! There is a therapeutic effect with seeing the beautiful colors and nurturing the flowers with water and food. I can do some light cleaning and make the house look nice and tidy and have someone come in to do heavy cleaning once a month. However, those drawers, closets and now baskets are a mess!

And that book that I began writing with gusto has not been touched for quite some time! I just can't get going with it and tell myself I'll get back to it in time.

And then those house repairs! It's all just there waiting to be done and if I overthink it I'll get stressed as a consequence. I think we have to keep cutting ourselves slack and not be hard on our selves.

Agent 99
Posted: Sunday, July 12, 2015 10:53 AM
Joined: 6/7/2013
Posts: 2166


Last night I learned of a new condition (to me not the med community) called abulia on the spouse forum. What you write and what I have witnessed with my sweetie sounds very similar to this neuro condition that is believed to result from morphological changes in the frontal lobe area of the brain. It is a distinct diagnosis from depression and seems to present without depression. Apparently it is, in some case reports, manageable with a medication called bromocripten. My quick research showed a heavy reliance on case reports rather than studies in large groups of patients with different neurocognitive issues however there are many unsubstantiated generalizations in the various reports so read with skepticism any statements about prediction of disease progression, severity, etc.


I hesitated to post this and hope it doesn't cause any upset. I do hope that it may be helpful in some way.

I am posting the wikipedia page - not my favorite source on anything medical - but it seems thorough and the studies I have found seem only to be available as abstracts. I will continue to dig deeper.
oops forgot to paste when posted!

https://en.m.wikipedia.org/wiki/Abulia


Lisa Ramey
Posted: Sunday, July 12, 2015 11:36 AM
Joined: 6/20/2014
Posts: 160


Hey ya'll,
Great topic!!! I too have weeds and my once manicured lawn now is so sad.
I could even fight arthritis and get it done with a push mower. ( I dream of a John Deer)
But now I just look at it.
Agent 99 thank you for a word that is by far than Apathy. Now I don't feel like a total slacker.
I'm gonna tell my Dr. About this and oh yea Google Scholar it too.
Bless you heart, Thank you

Lisa Ramey

Agent 99
Posted: Sunday, July 12, 2015 4:02 PM
Joined: 6/7/2013
Posts: 2166


The constellation of motivational disorders include apathy, abulia and akinetic autism - from lowest to highest severity). I think it is important for patients and care concierges (aka caregivers) to avoid judging someone with dementia who experiences apathy (or more) because it is not a choice, not a sign of laziness - it's a neurological condition caused by a malfunction in the motivation circuitry in the brain.

This article is very thorough in discussing the motivational disorders even though it focusses on their manifestation from traumatic brain injury. There is a diagram of the brain circuitry that mediates motivation as well as a list of the meds prescribed to treat motivational disorders. Aricept and exelon are listed. The author states that the apathy presented in Alzheimer's relates to the prefrontal cortex, parietal cortex and the amygdala.

I hope this helps in the understanding of "why".

http://www.yaroslavvb.com/papers/marin-disorders.pdf

Michael Ellenbogen
Posted: Sunday, July 12, 2015 4:23 PM
Joined: 11/30/2011
Posts: 4384


Don’t even talk about the lawn. I had a lawn that all my neighbors would kill for. They all use to talk about it. Today it looks like crap and have no idea on what I need to even do. I am afraid of mixing the chemicals as I have already screwed that up and applied the wrong bag of fertilizer at the wrong time of season. I gave you cannot even cut the grass right. One would ask how hard is that. It kills me to see how my spouse can not even hire some one right to do a good job. That is part of my frustration to see it all crumble down around me and none stepping in to do what I was once capable of doing. I was a perfectionist. Not even sure I have a word for what I have
Michael Ellenbogen
Posted: Monday, July 13, 2015 6:41 AM
Joined: 11/30/2011
Posts: 4384


As per Agent99 comment.

Has anyone out here research this. From what I can tell the word abulia which I believe to be Spanish and having the same meaning as apathy. Not any new term in my opinion. Just the same we all know in a different language. It sound great in this email till I looked into it. Please help from AA on this issue.


alz+
Posted: Wednesday, July 22, 2015 6:45 AM
Joined: 9/12/2013
Posts: 3608


Insight - my personal experience with dementia is that Consciousness is different than brain control of body functions. I am well aware of what I want to verbally communicate or that I want to perform certain actions, and that it is the feeling of Inertia, Profound Fatigue, a couch lock physicality that is primarily frustrating for me.

I am ready and wanting to do what I used to do, but it is a sort of paralysis that prevents that from happening. Studying that paralysis might lead to other treatments that would allow us to carry on with life.


Understanding consciousness and physical actions as separate issues, we may be able to invent means of accomplishing the tasks of living. Lawn care is perfect. I can not clean up yard fringe with weed eater (not physically use a tool or bring myself to ask neighbor if he would do it) - have we lost the intelligence to do it? the know- how becomes NO-HOW.

I find this one of the most agitating qualities of dementia, the source of feeling helpless and useless. The extreme dread of letting things go.

(I have tired telling myself l am letting it go back to its natural state but it still drags me down when I see those weeds taking over gravel driveway)

There is an altruistic side of dementia. The new care giving model uses it to help us become motivated into movement and actions.

To say, "You would make your daughter so happy to know you brushed your teeth," triggers the altruism of dementia which initiates the action of brushing teeth. The burning desire to not be a burden which is so profoundly present in the hearts of people with dementia can overcome paralysis. We long to still be of help instead of a drain, once in large ways, now in small ways.

I use the example of tooth brushing because while I dream of creating an authentic model of dementia that opens the world for every one with dementia, I find myself stuck at a sink, wanting to care for my body myself and being frozen at the sink as to how to accomplish this.

give this time to percolate. If any one can put this into words it could relieve much suffering. If Michael can still drive a car, why can he not physically bring his lawn back to life and beauty?

If I can imagine a book why can I not write it? I think there is a short cut around the inertia. apathy is not caring. we care a lot which = frustration


llee08032
Posted: Wednesday, July 22, 2015 7:09 AM
Joined: 5/20/2014
Posts: 4408


I am percolating and marinating in the thought provoking questions you raise.

give this time to percolate. If any one can put this into words it could relieve much suffering. If Michael can still drive a car, why can he not physically bring his lawn back to life and beauty?

If I can imagine a book why can I not write it? I think there is a short cut around the inertia. apathy is not caring. we care a lot which = frustration


I agree if we care it is not apathy. I am relieved to know this and I couldn't figure this out before this post. There are times when I feel like a lazy slug and want to kick myself because I can't pull things together or figure out where to start. I don't want to not care but I don't want to be frustrated either.


Michael Ellenbogen
Posted: Wednesday, July 22, 2015 7:43 AM
Joined: 11/30/2011
Posts: 4384


I must tell you that writing books is by far from being easy. In fact writing it is the easer part. Actual creating it and then trying to get it to market is the bigger challenge. If I had not had a book already I would have never been able to do the second. In fact I got to a point where I need it others to step in as I could no longer remember to do what I was once capable. My advice is to do a web blog and share it that way. One story at a time once a week. If it looks good in the end take it and put it in a book.


You have made some good points to think about.


alz+
Posted: Wednesday, July 22, 2015 10:12 AM
Joined: 9/12/2013
Posts: 3608


MIchael - you are right, it is the editing and organizing that I can not do. I have written 5 novels and been part of anthology in my work life. Have been writing since a child. It is who I am as a person - up to now.

was starting another novel 4 years ago but could not get it going, pushing bolder up hill so put it aside. Thought it was tension.

My desire to write a book is old fashioned. No blog based on loathing of technology, computers, figuring out a blog. The loss of income drives me nuts. I love to make a living!

These boards are sort my substitute "blogging". Maybe an assistant will come into my life and we can self publish the stuff. want to give copies to nursing schools and a bunch of save - the - world big ideas! Ha.

Adjusting todementia is such a HUMBLING experience. I want to weed an acre yard, but stare at flower pots and can not bring myself to pull out a weed from one pot. Laundry I can still do most days. Self care is starting to get iffy. Bathed at 3am, 3 days after I knew I needed a shampoo and shower. thank goodness my husband does not wake up when I do stuff at night and tell me to go back to bed!


Paul Hornback
Posted: Wednesday, July 22, 2015 10:45 AM
Joined: 8/9/2013
Posts: 584


llee, Michael, and Alz+, this whole writing a book is such a huge effort for someone with EOAD. My first one took lots of time, imagination, creativity, and perseverance to complete. Then the whole publishing effort which was enormous. Now the publisher is out of business and I must start over with another one. Almost too much effort but am trying to move forward on that front as well.

The work on my second book is arduous. I thought I had it written, edited, and ready for publishing. Then I read it over again and determined it needs lots of work. At times I just think I should publish it with imperfections since that is how my life is now - filled with imperfections of action, thought, and consciousness.

I believe we all need to publish our thoughts so others can see what it is like to live with this disease and still try to contribute to society, family, church, and other venues. Even if our published work is not up to "proper publishing standards" it helps get the word out about our ideas, coping strategies, desires, and dreams of living fruitful lives in spite of our disease. Why isn't this good enough?

Oh well, we must persevere through our limiting thoughts and move ever forward so others can understand our lives. So I try to work on my book each day in hopes of polishing the finished product enough to publish soon.

I encourage all of you to do the same. Keep at it because it gives new purpose to your lives and that in it self helps I think.

God bless, Paul


Jo C.
Posted: Wednesday, July 22, 2015 2:45 PM
Joined: 12/9/2011
Posts: 13462


A question was asked about, "abulia," also known as, "aboulia." Evidently, it is of Greek origin.

Here is a link regarding abulia, but it is very long. One can just scroll downward to the parts that may be of interest.

https://en.wikipedia.org/wiki/Aboulia

J.


Unforgiven
Posted: Wednesday, July 22, 2015 4:27 PM
Joined: 1/28/2013
Posts: 2659


Forgive me for butting in, but is aboulia anthing like 'ennui', which is not exactly boredom, but rather that one doesn't want to do anything at all.

I don't have dementia, at least that I know of, but when I begin to feel this kind of paralysis of will reeping in, I know it'm my clinical depression getting the better of me. The conditions may be akin. We lack enough of the brain chemical necessary for such things as memory and enthusiasm.

Does the world end if the box doesn't make it out to the trash right away? The floor that ought to be swept will be there tomorrow. I figure my mind and body are telling me I need a little vacation, so I oblige them.

And the good news is that when I finally take the box to the trash it makes me feel happy, like there's a load off my shoulders.

Jo C.
Posted: Wednesday, July 22, 2015 10:20 PM
Joined: 12/9/2011
Posts: 13462


Ennui is not a clinical sort of condition; it is simply boredom, listlessness and lack of interest. Who in the world I often wonder, thinks up these names.

J.


alz+
Posted: Thursday, July 23, 2015 6:57 AM
Joined: 9/12/2013
Posts: 3608


another question about WHY we can't do things we are physically able to do.

I have found the steam to clean up my sleeping room when my daughter is coming to visit. I can not do it for me usually. Tried a few weeks ago and spent hours taking a book out of bookcase, touching it, putting in a pile, then putting it back. It was slow motion, finally changed sheets and gave up.

the closet is still blocked by a small trunk full of photographs. Intellectually I know I could move that trunk out of the way but I avoid it. Been there for months. it is odd.

wondering if - as in Michael's example about lawn care - if a disabled neighbor asked if Michael for help mow his lawn, if Michael would be able to do that for neighbor because of the altruism motivator in people with dementia?

The things we avoid or can not start much less complete, if they are FOR SOMEONE ELSE - can we do it then?

If appealing to us to do some thing because it will make some one we love happy or less worried, then can we help ourselves put the gear shift in drive by telling ourselves (brain) that it is for someone else's benefit?

note Paul's post about writing - he deeply wants this published BECAUSE it would help so many other people! I hear this all the time, a benevolence, a desire to spare others the burden of our care and so on.

I can be exhausted in bed and think I should go for a walk or clean up some thing but I do not move. The dog looks at me and peeps. In despair I ask what does she want? a walk? Oh Yes Oh yes a walk! and she wags and dances and there I am, out of bed walking the dog. For some one else.

do we have a block about doing things for OUR SELVES?



alz+
Posted: Thursday, July 23, 2015 7:23 AM
Joined: 9/12/2013
Posts: 3608


I was trained in belief system that held "our bodies are always working for our benefit, to continue life"... to keep us alive and moving.

On a cellular basis our bodies, with no need of us thinking, heal cut skin, colds, bruises, injured muscles, broken bones and so on.

In that sense, do our bodies reserve energy for some other use by refusing to give us the strength (combo of motivation and physical coordination and ???) to take care of daily chores? what factor does ambition play? Losing the "ability" to finish painting a room or repair a leak yet able to produce art?

The experience of not being able to start - is it different for all of us? is this "executive function" loss in the medical model of dementia?

I lie in bed with little tablet my son bought me last spring. I can write on boards - because it is for some one else? - but can not work on assembling chapters, editing (editing, editing) to craft a full length work one last time? The urgency is there...is it possible? It would be slow as heck but I do it here! Is it the idea of 150 pages instead of a looonnnngggg posting?

For people with younger onset - the loss of dream fulfillment is a huge factor in how we feel living with dementia. We did not get to ___________. Bigger than a bucket list, the raison d'être for our lives can gout the window.

Many of us have disabled children! We are needed and worry and grieve about not being there for others. We may live 20 years with dementia!

what keeps me from sorting papers now? I do still know where they go, but I touch them and put them down again. If I heard some one yell for help I'd be on my feet running.

does avoidance serve a purpose?


Michael Ellenbogen
Posted: Thursday, July 23, 2015 8:55 AM
Joined: 11/30/2011
Posts: 4384


Very interesting point you make. If my neighbor asked me to cut his lawn I would do it. It may not come out perfect but I would do it. One of the problems I have I keep hurting myself when doing it and don’t even know what I am doing wrong to do that. When I use the trimmer I am getting rocks shot at me. It’s like I cannot remember to keep it at the right location. Or I may chop off to much grass. When the trimmer get jammed I cannot even figure out what I need to do anymore. That is part of my problem. I just get so aggravated trying to do what should be easy and has become so complicated.


alz+
Posted: Thursday, July 23, 2015 5:52 PM
Joined: 9/12/2013
Posts: 3608


my posts - even after I edit and re-edit, are confused. Sucks.

and I repeat myself in writing, have had more events erased lately. I also joined a group online - did not know it was PUBLIC so unjoined. it was for middle stage dementia.

sure do love everyone here, I am going to try to write more concisely. thanks for not pointing it out!


llee08032
Posted: Friday, July 24, 2015 9:56 AM
Joined: 5/20/2014
Posts: 4408


Here I sit with my messed up fingernails...some broken, some old manicured! I took a whole page advertisement with an electrician and plumber to work this week so I'd remember to make an appointment to get the light fixed and toilet fixed in the downstairs bathroom! I thought I won't be able to miss this whole page advertisement and will make the appointment! I did not get to making the appointment. The lawn got mowed by the service hired by my 55+ community. The snow if it's over 4 inches get's shoveled. The perks of a 55+ community. I had my son paint my front door purple and thought there'd be a knock to change it back to white. I painted the flower pot bench to match the door. I had been thinking about the painting and thought it would look nice and cheerful and it does and I felt better afterward. So far so good. So another week of turning the toilet water off and on by hand and going to the bathroom in the dark! Hey, I watered the flowers and got to work, had the house cleaned and the roof is not collapsing over me! Now if my neighbor had asked me to make an appointment with a plumber or electrician would I have gotten it done? Most certainly I would have! What a strange and new interesting concept this altruism! Perhaps if we can find way's to frame things needing to be done to please or help others that will encourage us? We need both encouragement and support.

The alcoholics got it right with altruism. Bill Wilson and Dr. Bob helped other alcoholics to stay sober and that in turn helped them to stay sober. Basically they proposed that you could not stay sober on your own unless you were working with other alcoholics and teaching them and helping them to stay sober. They call this the 12th step in Alcoholics Anonymous. Of course all they're work was the springboard for support groups that revolutionized into all types of support groups around the world. Much of Bill Wilson and Dr Bob's spiritual principles and altruistic practices came from the Bible. Alcoholism is also an incurable, fatal, progressive disease. Consequently, we can't put down a drink or stop drinking to arrest our disease! We don't get to have a recovery in the sense that the alcoholic does.

I'm trying to hit on something but keep losing track. I think it has to do with recovery!

In a sense we are 12-stepping each other on this board. Supporting, encouraging, having unconditional positive regard and altruism for each other traveling this path.

re·cov·er·y
rəˈkəv(ə)rē/
noun
  1. 1.
    a return to a normal state of health, mind, or strength.
    "signs of recovery in the housing market"
  2. 2.
    the action or process of regaining possession or control of something stolen or lost.
    "a team of salvage experts to ensure the recovery of family possessions"
    synonyms:retrieval, regaining, repossession, getting back, reclamation,recouping, redemption, recuperation
    "the recovery of the stolen goods"

llee08032
Posted: Friday, July 24, 2015 10:16 AM
Joined: 5/20/2014
Posts: 4408


The concept of recovery and wellness and recovery is revolutionizing the mental health and psychology field. It is tailored to the individual with the disorder and what their perception is of recovery and not the professionals concept. What recovery means to the person the individual. The individual not being cured from their disorder but improving the quality of life with their disorder in meaningful ways and managing the symptomatology of the disorder.

What does any of what I've written have to do with this thread? I don't know I just can't get there today! But I like the word and concept of recovery


llee08032
Posted: Friday, July 24, 2015 10:27 AM
Joined: 5/20/2014
Posts: 4408


The concept of getting something back. Perhaps I'm trying to say that recovery for us means living well, making the most and best of this and how to get help in doing that. Forming a concept somehow of my own, our own personal recovery. I still want to hope that there is something I can recover, something I can do well. Make someone I love happy. Have joy!
bethNC
Posted: Friday, July 24, 2015 11:20 AM
Joined: 6/6/2015
Posts: 55


This thread is mind-boggling!! The ebb and flow of thoughts have given me so much to think about, and the beginning of some new perspectives.

As several of you have said, I also have a box of items to donate to the local rescue group that has been sitting next to the front door for MONTHS. Egads! Almost every time I walk by it I think, "I should take that to the car... but first I'll do xyz." And that's the end of thinking about the box until the next time I spot it on the way to do something else. The really weird part of this, I just realized, is that I can't recall ever think about taking the box to the car as I am going out the door. Is it invisible? Am I too busy thinking of the steps needed to open the door, walk to the garage. etc.?

The other thing that struck me are llee's thoughts on wellness, healing and altruism. It certainly seems to me that things are better all the way around when people make a conscious choice to try to bring happiness to their loved ones. Extending that choice to helping those not in our immediate circle -- can that effect/delay the course of dementia or cognitive impairment?

I think of long-time posters like Iris and Mimi and Miriam, who seem to have delayed their symptom progression for many years. They credit "best practices" to a great degree, but I wonder if their altruism -- their support and counseling to others on these boards -- has also had a role in their continued cognitive wellness. (Yes, I'm aware that Iris and Miriam haven't been on here for a while. I choose to believe they continue to do well and will return one day soon.)

Thank you all for helping me look toward a new and much more positive direction.

alz+
Posted: Friday, July 24, 2015 12:33 PM
Joined: 9/12/2013
Posts: 3608


the more we describe this "loss of executive function" ( is this inertia what that means?) the more we may find some way to use a different part of our brains, a different part of our thought process, to maybe finish the Big Things that matter so much to us, that help us find peace with ever progressing loss of capability.

In the words of one my long time women friends, "Living alone is a luxury."

Michael comes with these questions that set my hair on fire.

Today I blew a gasket and once I got really ANGRY I shot out of bed and pulled the garbage out of the car ("the car" = 1000 hours of manual labor to buy, and which if it were still "my car" and I could drive, I would take it to car wash myself and vacuum it while pissed off and clean the heck out of it. Then feel wonderfully satisfied I do not have to sit on dog fur in back seat with broken dog cookies. Satisfied the hard work and investment is being treated with respect. Happy and contented my husband is respecting what makes me comfortable, that he will take care of the things that allow us to live, the things that are sort of beyond me now.

So altruism helps me do things for others, and anger helps me get the connection ignited to do things for myself.

The 2 things that matter to me the MOST, is help organizing a rough outline of the book I have collected stories and thoughts for about living with dementia, and emailing 20 photos of 115 year old one of-a-kind Russian icons from our church (I took photos 3 months ago, we had a fight that day which enabled me to finish doing the photography, but ugly experience since it was a sacred project to me). Then I sit for 3 hours one day editing the photos, my back suffers for days after. I screw up sending the large file from my old computer.

Husband says he will email them. I wait, week after week for him to email them to my daughter who is producing the book for us. He still hasn't and gets outraged when I ask. "I told you I will do it!" well, telling me you will, some day, makes me feel like what matters to me most, time is of the essence here, what matters to me most is a low priority for you. Ok. I hear that.

Meanwhile, as everything slowly keeps getting harder to do, I teeter on the edge. Are the 2 things that matter most to me never going to be finished?

If I ask "did you send photos?" (translation: this means the world to me. Doing it would give me peace of mind and great joy. Not doing it makes me anxious and frustrated, which after weeks of waiting turns to anger. Help me.)

I get a lecture on how much he has to do every day and why he won't today now because this constant demanding is pissing him off so he better leave for the day so he can cool off.

Result: one coat of protectorant is on the exterior and interior rubber pieces and most of fur has been scraped off seats to floor. I did part of what I need to feel comfortable.

AA = anger and altruism.



alz+
Posted: Friday, July 24, 2015 12:43 PM
Joined: 9/12/2013
Posts: 3608


I thought I deleted what I wrote above, tried to recover it by UNDO click, panicked.

then find it is there when I come back 3 minutes later. Technology is difficult for me.

I learn so much from every one. Being able to write this mornings troubles here helped wash them away. I did take 2 puffs of cannabis to calm down and it worked within a minute.

Forgot what I meant to add.

TIME IS OF THE ESSENCE. That sense makes me anxious.

Please more thoughts. The box at the door! Yes! I am so jealous, envious of Llee for painting her front door and window boxes! My Clutter! The window to wash! on and on


TheSteven
Posted: Saturday, July 25, 2015 7:39 AM
Joined: 10/11/2014
Posts: 167


Paul,
Have you thought about self publishing? Google that and read up on wikipedia about it. I know my daughter has read many fan fiction books over 1000 pages that were very good. You don't have to do hard physical copy either. Just a thought if you want others to read your book. There may not necessarily be monetary rewards, depending upon how you choose to do it.

TheSteven
Posted: Saturday, July 25, 2015 7:39 AM
Joined: 10/11/2014
Posts: 167


Paul,
Have you thought about self publishing? Google that and read up on wikipedia about it. I know my daughter has read many fan fiction books over 1000 pages that were very good. You don't have to do hard physical copy either. Just a thought if you want others to read your book. There may not necessarily be monetary rewards, depending upon how you choose to do it.

llee08032
Posted: Saturday, July 25, 2015 8:16 AM
Joined: 5/20/2014
Posts: 4408


The book writing had been going well for me with the writing part. It was the formatting, organizing and such that got to me and made me feel overwhelmed! It is important to me and I hope the book will be helpful to others. I had a publisher recommended by a friend. She told me she was working on a project and wouldn't be available for several months. Then she got back to me months later and said she had too much work already and couldn't help publish my book! Paul had mentioned feeling purposeful or something similar and I did have that feeling when writing. I need to get back to it and just start with the writing again. It's on my bucket list as is teaching a psychology course ( I will make sure add dementia) which I am looking into. Need to encourage myself and get my son to help with encouragement. He would love to see me write the book and teach!
llee08032
Posted: Saturday, July 25, 2015 10:55 AM
Joined: 5/20/2014
Posts: 4408


Funny thing...after posting about my son and how he would love for me to finish the book I started back to writing! I have 208 pages so far! I'm just going with the writing flow for now. BTW I didn't even talk to my son yet today. He calls every Saturday or Sunday! I will tell him to encourage me when we talk tomorrow.