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How we can maintain our independence
Iris L.
Posted: Saturday, July 9, 2016 7:22 PM
Joined: 12/15/2011
Posts: 18509


Since I live alone, maintaining my independence is an important goal for me.  Gerontologists use the Instrumental Activities of Daily Living list to assess our abilities to live independently.  I looked at this list and assessed myself.  Finding accommodations and work-arounds will enable my continued independence.


INSTRUMENTAL ACTIVITIES OF DAILY LIVING SCALE (IADL)


 https://www.abramsoncenter.org/media/1197/instrumental-activities-of-daily-living.pdf 

 

 

 



Patients who live alone can use this scale to discern where they may need accommodations.  Even patients who don't live alone can use this scale with their care partner to determine assess their need for accommodations.


Iris L.


Michael Ellenbogen
Posted: Sunday, July 10, 2016 7:48 AM
Joined: 11/30/2011
Posts: 4460


My only question is how do you know you are making a accurate assessment. As you know some of us don’t always know what is going on. That is something to think about. No saying this is happening to you but one does not know for sure which is scary.

 


Iris L.
Posted: Sunday, July 10, 2016 1:18 PM
Joined: 12/15/2011
Posts: 18509


Michael, I came across a note that I had written that said that once a diagnosis of dementia has been made, the PWD should be evaluated by an occupational therapist to assess safety and capability in the home environment.  I believe this is a great idea.  Unfortunately, no one is doing this for us.  All of the talk is about taking away our independence.  


I posted this information so that patients can do their own assessment of their safety and capability of living independently.  The idea is to find accommodations for areas where we have difficulty.  If you have a trusted person to help in the assessment, by all means, do so. 


According to the Alzheimer's Association, forty percent of PWDs live alone.  I posted to help those like me.  Nevertheless, it might be an interesting project for the PWD and a trusted person to do the assessment separately, and then compare findings.  


The whole point of early diagnosis is to get treatment and to make plans. Knowing objectively how we are functioning in the home enables us to make plans based on facts, and not on fears and guessing.


Some PWDs may have anosognosia and are unaware of their capabilities, but I doubt that these patients are the ones who post here.  This information is for us who post here, to help ourselves better.  These are the Instrumental Activities of Daily Living. Professionals are familiar with these, even if they don't use them.


Iris L.


The_Sun_Still_Rises
Posted: Sunday, July 10, 2016 1:29 PM
Joined: 7/24/2015
Posts: 3020


It is likewise my goal stay independent, an I appreciate you passing around a scale by with rate ourselves.  Thanks.

I would like add the conversation...that, we are where we are at...irregardless of what some test says, an irregardless what others think we should be able do or no do.  In the end, WE are the best judge ourselves.  

I think Michael's warning also a fair point consider...as independent as we want be...there will come a day.  Whether we plan go a nursing home, or plan have family come care us, or, like me, plan end things when it gets there...we ALL are forced into having consider WHEN this point is...it seems.  We have watch ourselves, assess, reflect...an consider what we know the disease. 

I also think a lot (a lot a lot) more goes into whether we can safely be at home by selves...than simply our ADL's.  An I think personality has play into it as well.  Like, for instance, just how fiercely independent are we...or how willing are we give in an let someone else come do for us?  I think that determines more how we will meet our disease.  Also, are we trying prove others (like applying disability or get services), or are we no longer caring what others think?  That also plays into how individual peop meet the disease. 

I know SOME peop dementia feel like helpless victims, perpetually sad about whole thing...and whining what they can no do an more...an actively trying get others help them with anything they will help them with.  They will meet the challenges this disease process presents them very differently that say someone like me who is bound an determined meet this thing head on an do all I can slow it the f down. 

In the end, an this is just MY two bits...IF you want maintain you independence...do no test you self on how no-independent you are.  The test is design know when provide you services...no be help you stay doing you self.  Just a thought.  But I do appreciate the share nonetheless...it real helps know what is on these things for those no familiar with them. 

<3


Unforgiven
Posted: Sunday, July 10, 2016 2:29 PM
Joined: 1/28/2013
Posts: 2659


Very interesting thread.  From the outsider point of view, based on my own experience,  my own PWD consistently overestimated her own abilities by one or two years worth of progression.  She most likely should have stopped driving when she became dependent on opiate painkillers, yet it was three years, several minor, (thank goodness) accidents, and non-compliance with explicit doctor's orders before that happened.  She had increasing trouble with her financez from the time my father died, even though I helped her set up a budget and set up a financial application on her computer for her.  I would only get called in to unravel a huge mess at tax time or when her account got overdrawn.  Her house was cluttered to the point of hoarding, even ghough I would work to decluuter and organize with her.  I suggested new habit pattern like having a single place for the car keys, coming and going, opening the mail in her office rather than up beside her bed, and always returning her credit card to her wallet after making a purchase rather than sticking it in a random pocket.  I knew she needed help cleaning her house, but I finally had to insist that she declutter her surfaces, which always recluttered, before I could possibly dust vacuum or wash.  All the problems followed her to her independent living senior apartment.

At this time, I was being told that there was nothing wrong with her cognition.  I saw problems, but her doctors did not see her living conditions or her financial ones.  If they had, we might have been spared a decade of increasing frustration and antagonism.

So, I have to conclude that self-awareness is going to differ between individuals, and so is an accurate understanding of your own limitations.   Some know, others don't, and they fight like hell.  And none of us can predict how it will go with ourselves when or if the time comes.

The only thing I can do is learn from my own experience -- set the right habit patterns while I still can, and listenbto those who are called in to help me when I vget my tail in a crack.  There may be some tasks and responsibilities I have to turn over, especially if the illusion of independence is causing an undue amout of extra work for my family members.

I can be pretty stubborn too.  I'm adamant that I want to die here in this house, and I am willing to make concessions to family members like giving son and wife the master bedroom and the house itself if they move in to keep an eye on me.  Or grandsons, for taking care of PeePaw and MeeMaw when they are old and need it.  I make sure to express my love for them now to earn the devotion that will carry me through the future, whatever it may be.

So, good habits, best practices, and fingers crossed I'll be able to remember what I wanted at this stage of my life.  Perhaps, I''ll write it down.  Writing it down is usually good.


Iris L.
Posted: Sunday, July 10, 2016 3:52 PM
Joined: 12/15/2011
Posts: 18509


I must repeat that I wrote this thread for people who do NOT have anosognosia--

for people who are aware of what they are going through, and 

who want guidance as to how to proceed. 

 

 I wrote it for people like myself--

people who live alone and who may need to make 

accommodations.  


Iris L.


llee08032
Posted: Monday, July 11, 2016 7:36 AM
Joined: 5/20/2014
Posts: 4408


My neurologist asked me "how are you doing with daily activities?" awhile back and I was stumped. At the time I couldn't think of what daily activities were or how I was doing. 

Whether we like it or not ADL's are used like a yardstick in the medical, psychology, social service and social science professions and play a major role in measuring and determining levels of functioning. Changes in levels of functioning in activities of daily living and instrumental activities of daily living can be the tipping point for major determinations that can impact a persons life. Determinations for Levels of Care (LOC), medicaid, disability benefits, policy decisions, personal care needs, hospitalization, skilled nursing care and even diagnosis and/or the severity or progression of the diagnosis involve the assessment of one's functioning with ADL's or IADL's. 


Activities of daily living include are the tasks that are required to get going in the morning, get from place to place using one’s body, and then close out the day in the evening. They involve caring for and moving the body.

  • walking
  • bathing
  • dressing
  • toileting
  • brushing teeth
  • eating

Instrumental activities of daily living are the activities that people do once they are up, dressed, put together. These tasks support an independent life style. Many people can still live independently even though they need help with one or two of these IADL’s.  They include:

    • cooking
    • driving
    • using the telephone or computer
    • shopping
    • keeping track of finances
    • managing medication

The_Sun_Still_Rises
Posted: Monday, July 11, 2016 9:23 AM
Joined: 7/24/2015
Posts: 3020


Iris, Sometimes I think that the caregivers who INSIST on taking over our little area of the world here, are really oblivious how they come off us.  while I think they care, I don't think they care ENOUGH try put themselves in our shoes enough get it.  Try be patient them, Iris...I think we each find their narrow mindedness irritating, so you no alone in that. 

Unforgiven, you mom had you.  This gave her room fail.  Each person is different how they deal with life.  When you have a ton of money, you have the luxury of making financial mistakes.  When you have barely enough get by, you do no have that luxury.  Caregivers RARELY consider or realize just how much they enable the behavior they get from their loved ones. 

Same holds true, those with partners that are willing help out will more likely give up tasks at the first few signs of struggle...an thus LOSE abilities far quicker...than those who are supported an encouraged keep doing these tasks.  My biggest surprise is, just how many more tasks I am able still do...that my married counter parts are no able do...I completely credit that with the fact that I don't have someone help me, so I have keep doing...that luxury of having someone help...is both a blessing an a curse in my opinion.  In any event, it comes at a cost. 

I always feel as though I am in a weird triangle here.  Iris, Llee, an Alz+ are trying so hard live best they can...while they are (at least I think they are) unaware of that there is a whole huge dementia community out there of likeminded people with dementia fighting for our rights do just that that I am a part of.  All while in THIS space, where the consensual agreement is that those us with dementia are horrible burdens, already gone, and the whole thing is oh so sad.  The fact is...pretty much every person who gets dementia, has been living well into the disease LONG before their children really started groking that there was a problem.  Indeed, the biggest barrier our care, is our families denial that there is a problem...in my opinion.  Indeed, the whole fact that children have such a hard time seeing it creates an perpetuates the situation of their parents dismissing their concerns.  It is CO-CREATED...an these parties need take ownership an responsibility how they do this, before it will ever change.

At the same time...NO ONE, an I mean NO ONE, this day seems know how address or adequately cope with those of us with YOUNG ONSET.  We are a completely different breed.  And dare I say, there is even a radical difference between those us over 55 an those us under 55.  NO ONE has squat say about what do with those us under 55...so dare I say, WE get write the book on it. 

Those developing dementia under age 55, are often still the heads (or only head) of household...they are generally in the sandwich generation, caring for elderly parents as well as minor children...an we are still working an paying mortgages.  So what might be true of aging parents, aged spouses, or those long past their working days...no so true us.  We are also generally, avid internet users. 

If the person who develops dementia, is a 45year old single mom of grade school aged children....there is FAR more consider than what nursing home she wants go in (especially since she cannot get in a memory care nursing home for 10 more years).  Who will drive her kids school?  Who will drive her grocery store??  Who will pay the mortgage?  Where will they live??? 

So, what concerns US, those us being diagnosed it, DIFFER...we are concerned with, how will I keep being able drive my kids school as long as possible...how can I manage this??? 

We are also a much more self aware bunch.  We know we have this.  We know what it will do us, we no idiots...an we are used planning our futures...so planning for how ride this out is no different than anything else we have been doing life. 

And...I would STILL like think, that HAD we HAD better education people what this disease is an does...we willing BE HONEST with the person diagnosed, WILLING have those hard conversations them, an ourselves...we COULD have a very different out come than you an you mom. 

Like, take me an my daughter, for instance.  I know I have this...she knows I have this.  We do no mince words, or skirt issues...we both know exactly what this disease does...an what is coming my future.  Our work, is the internal personal work we do prepare for that...try meet that with grace.  We ensure safety, but no from a fear stand point...but simply from a practical stand point.  I have actively manage my agitation as I am a wander risk.  We have take precautions.  I need her know as much as me, if I am pacing around WHY I might be doing that...an what could come of that.  But overall, our focus is on having the very best years we can...having the times of our lives.  Of course she will miss me when I am gone, but I am no gone yet - I am still very much here, an life short way more short than waste any of it grieving something that has no happened. But we very honest each other.  She will no be lie me, bribe me, offer me dog treats.  I am blessed that she thinks what others do is as sick an disgusting as I do...she must take after her mother or something.

And I care for my mother, which has been a interesting journey...as my mother an I are no as close as I am with my daughter.  But at all times, I consider, how my mom reacts has everything do with how I present things.  I have create the situation for my mom thrive in...same way I have create the situations my young children thrive in.  And although it takes a bending on our parts, we do it without hesitation or second thought for our children, or our animals...I see no difference when it comes parents.  My siblings are famous for reminding me how they have lives.  A while back, I retorted, I have a life also...mine just includes mom as part of it.   

I am completely ok an comfortable with NOT fitting the norm of THIS forum's consensual agreement how things "supposed be"...an I am also completely at ease being the face of this for all my providers that work with me, giving them a NEW image how this disease CAN BE. 

I firmly believe that we can live LONG into this disease...longer than we have been...with proper supports, remain at the helm our life, directing our care...until the point we can no.  For some, that will be be completely in care of spouses...for others, that will be nursing home, an for others like me...that will mean time exit the world, with grace an dignity.  I am going live independently (also because I have no choice) with this disease until my death.  So while I am sorry about you mom, an everyone else, I am yet one more voice of IT CAN BE DONE...an I will keep singing that song until my final hours.

Iris would also like be a voice of that...an I am very grateful that.  Each one us here, although treated terribly from time time, remain here BEING that voice...I personally, think that worthy of supporting.  Just my opinion.

<3


Iris L.
Posted: Monday, July 11, 2016 12:43 PM
Joined: 12/15/2011
Posts: 18509


Sun, I became ill at the age of 37 years when I had to stop working abruptly.  At that time I was diagnosed as having depression/anxiety, which is not a good diagnosis for a practicing physician.  I also had physical limitations.  I am well aware of the difficulties of certain diagnoses in a person who is still in the working and child-raising age.  


Fortunately for me, I had no children to take care of.  My mother came out to help me. She had to care for me like I was a small child, because I was so limited in what I could do. For a long time, I considered returning to the East Coast and moving in with my mother, but I held on, and I am still here, living independently.  


Sun, I think you may be onto something here.  We who are more independent, may be independent because we have to be independent, and because we don't have anyone binding us.  Being independent doesn't mean we have to do everything ourselves, such as doing heavy cleaning or doing all the shopping and marketing.  


But being independent means being in charge, and making decisions.  It means making the changes we want to make for ourselves.  I want other patients to realize that they don't have to be so fearful, once they have a diagnosis.  

 


 I wouldn't call them narrow minded, but family members are only aware of the scary stories about dementia they have heard or remembered from their childhoods.  They need to be educated too, but on this thread, I am addressing patients.


Ilee, I agree that some professionals use the ADLs and IADLs in their work.  But usually, we patients get asked questions such as, who is the president, or subtract serial 7s.  These answers do not have anything do to with determining how we manage our day-to-day lives.  We could be drowning is a sea of paper, as I was and still am, but able to answer those questions promptly and accurately.  This is the type of situation that makes me fearful that the professionals who are supposed to be in charge of my care, know absolutely NOTHING about what I am dealing with, nor how to solve the routine problems that I might come up with, and thus I cannot trust them at all.  


Over the years, I have learned so much from reading the boards.  I learned what to do and what not to do.  We have to learn here, because we can't rely on learning from the outside world.  There is a reason why I call us Dementia Pioneers.  We are the first generation of patients who are proactive in our own care.  We can remain independent for a long time, if we prepare ourselves!


We have many patient members registered.  I would like to read more from them.  Helloo!  Are any more Dementia Pioneers out there?


Iris L.

 


BillBRNC
Posted: Monday, July 11, 2016 2:07 PM
Joined: 12/2/2015
Posts: 1018


Iris and others, I think you are right as rain about people who have no choice but to be independent being able to stay independent for longer. I already defer a lot of decisions and thinking to my wife. If I get confused, I just dump it on her, because I get more agitated if I try to work through it myself. Frequently, I have to work through the problem because she is not around, and I almost always can do it, but I just don't like it. I think being forced or having no choice certainly helps us Alz folks stay independent for a longer time. I'm going to work harder on not passing things off onto my wife and trying to do them myself. Don't get me wrong, I still do tons of things myself, but I can see myself slipping into relying more on my wife. I don't know whether she likes it or not, as I always try not to be burdensome. Those of us with Alz or something else need to do all we can do to keep our brain in the game for as long as possible. Thanks to you and Sun and others for bringing this up.
llee08032
Posted: Tuesday, July 12, 2016 7:52 AM
Joined: 5/20/2014
Posts: 4408


Maintaining independence is a process of trial and error and successes. I'm am still holding on to my sticky note system because it works for me. I tried other ways and it didn't work. I like the feeling I get when the task is accomplished and I can throw away the sticky notes. This may sound silly to outsiders or persons who do not understand. Basically, I feel I run my life and remember to get things done because of a little piece of paper with adhesive! I've written things down for many years for everything I need to do from remembering to put out the trash to board presentations. 



BlueSkies
Posted: Tuesday, July 12, 2016 10:29 AM
Joined: 2/24/2016
Posts: 1096


Yes, I so agree with this topic.  I also am striving to stay as independent as possible.  I like Bill have caught myself relying on my DH more and more lately.  It is just easier, but I think I will try less as I know this will not be helpful to me.  I'm glad this was brought up on here as it was something I needed to be aware of.  It's so easy to let go of things and give to someone else when you are struggling and frustrated, but so much better for you to struggle through and do yourself.  Thanks Sun for bringing this up and everyone else for your enlightening comments.
Iris L.
Posted: Tuesday, July 12, 2016 1:10 PM
Joined: 12/15/2011
Posts: 18509


So what if we use sticky notes?  We should be glad they were invented.  They are like eyeglasses for us!  


My point in writing this thread is to help us get over the FEAR of being diagnosed with dementia.  We don't become helpless babes.  We can still take care of ourselves.  We can do it!


Iris L.


BillBRNC
Posted: Tuesday, July 12, 2016 3:25 PM
Joined: 12/2/2015
Posts: 1018


Iris, you get another gold star. Thanks. Bill.
The_Sun_Still_Rises
Posted: Wednesday, July 13, 2016 5:08 PM
Joined: 7/24/2015
Posts: 3020


Beyond the use it or lose it...there is the concept of neuroplacity.  Nearer when I was first on here, when I was more active here...I posted lot about things that can help brain an particularly about neuroplasticity.  I used be sort of a brain geek (or dork) in the day...I figured my storehouse knowledge could help me my dementia journey, so I started digging back in there...and shared what I knew on rewiring the brain, make it do what you want it do.   

The brain (and indeed the body) work, essentially, on demand.  Meaning, without the demand...things are lost, reclaimed, an repurposed elsewhere.  Think you muscles.  The more and more you demand you muscles...the more they increase an give you.  Don't use you muscles...an the body eats them...an they are lost. 

Indeed, when babies...are brains are evenly wired...but as certain things demanded of us...walking, particularly talking, reading...language...wiring in unused areas was lost...rewired into areas we were using more.  This is why we talk so well.  You can particularly see this in people who go blind later in life...as brain reclaims some those wires.  Or in the different wiring in people who have been blind whole life.

The brain may be becoming damaged, dying in dementia...ok...this neuron that used flip the switch on the light being lost...but that does no mean a different neuron, in a different place can no flip the switch just as easily as the old one used do.  And, it WILL...if we make it.  This is neuroplasticity in a nutshell.

Jokes - some brains might be more lazy an less motivated than others. 

So I put, evoking and making concerted use of neuroplasticity into the Best Practices list...dare I say, it did no go over well back then...I guess the idea so foreign an idea them...but I ignored them and went ahead anyways, doing the best I can with what I have. 

I also cite Christine Bryden, who wrote Dancing With Dementia.  She was one of the first dementia rights advocates...who (I believe) was the first get in print with the message that life no over upon diagnosis.  She has continually astounded her neurologists for 20(?) years...her MRIs show that she should no be able walk and talk...yet, she still travels the conferences and still talks bout inspiring us do more than we think we can.  And I have since met a great many likewise advocates that swear their advocating work has slowed their dementia.  I've seen it, so I am inclined be motivated by the possibility.

Advocacy work (some of it anyway) is different that just doing a hobby, or playing an instrument (which is also helpful)...there a real urgency these people feel...a "need" that they are driven by...that drives and pushes them keep exceeding their BELIEVED limits.  That constantly walking towards more than you think you can do, seems appear, create the road meet their feet so say.  I have written, that I think those the keys unlocking neuroplasticity for you self.

I gave up try say it here, since this place embroiled in the "oh-so-sad"-ness of it all, and woo is me...that it real suck the wind out ones sails.   I figured, just because they so willing give up on their lives...did no mean I had be willing give up on mine.  I guess it shouldn't have surprised me that I would be cutting a new trail in this field as well...but whatever.  I didn't want upset people anymore, so I stopped talking about it here.  I prolly can no explain it as well now...but it should be still on this site in my older posts for anyone caring search it. 

Hope that helps.  <3


Iris L.
Posted: Thursday, July 14, 2016 12:22 AM
Joined: 12/15/2011
Posts: 18509


No one on this patient board is giving up.  We are Dementia Pioneers!  That is why I wrote this thread.  


I would like this thread to remain in the spirit I posted it, as a thread of positivity and not negativity.


Iris L.




The_Sun_Still_Rises
Posted: Thursday, July 14, 2016 7:43 AM
Joined: 7/24/2015
Posts: 3020


I don't read anyone as being negative this thread...so I am no exactly sure what you reading into things.
alz+
Posted: Thursday, July 14, 2016 10:45 AM
Joined: 9/12/2013
Posts: 3608


 

 


Iris L.
Posted: Thursday, July 14, 2016 12:05 PM
Joined: 12/15/2011
Posts: 18509


I never heard of Hunter S. Thompson, but he sounds like he was an interesting guy.


Yes, we want safety and security.  We want to live fulfilling lives too.  Can't we have both?  I'm working on that every day.  Getting there is a process, because of the lack of guidance.  I had guidance only from one social worker, the APS worker who came to visit me.


I find that focusing on my daily activities keeps me sharp and functional.  I make accommodations.  Knowing what accommodations to make is a challenge, and often an adventure.  Adventure is good, because I am learning and growing at the same time.


Iris l.

 


Paul Hornback
Posted: Thursday, July 14, 2016 4:19 PM
Joined: 8/9/2013
Posts: 584


I'm all for independence as well! I use a daily schedule that has activities for morning, afternoon, and evening. I check them off as I complete them. It helps keep me focused and enables me to complete the important things I need to do each day.

Oh yes, I also use post-it notes out the ying-yang! I'd be lost without them.

God bless, Paul

 


llee08032
Posted: Thursday, July 14, 2016 8:57 PM
Joined: 5/20/2014
Posts: 4408


Hi Paul,

That's right they are called post it notes


llee08032
Posted: Sunday, July 17, 2016 11:10 AM
Joined: 5/20/2014
Posts: 4408


Maintaining independence is key to our existence. I see everyone on this board as doing their ALL and doing a wonderful job of maintaining their independence. I see no one here balled up in a corner and certainly no one who has given up completely. Maintaining independence is having the courage to fail at times and then realizing your limitations. It's a matter of personal perspective and what is important to and unique to each person. There is no contest nor should there be any judgement about who is more evolved in their viewpoints or their own personal journey of trying to maintain independence. 

Independence is about meaningfulness and maintaining abilities to the best of our CAPACITY (also unique and variable to each person) to do that which enriches our lives. 

IMO any PWD who is not rolled up in a ball and given up completely is fierce and courageous and a dementia pioneer in their own right. Justice to all!



BlueSkies
Posted: Sunday, July 17, 2016 10:17 PM
Joined: 2/24/2016
Posts: 1096


Amen llee!  
sandyjm
Posted: Monday, July 18, 2016 9:02 AM
Joined: 4/25/2015
Posts: 406


Hi, All,

I know I am peering "over the wall" and this post was not asking for CG input. But please allow me to say Thank You for it and for all the sharing you do. I read to learn..sometimes it helps me with my Mom...and often it helps me be prepared for a future I may have. 

So, Thank You!

Sandy

p.s. apologies if this gets duplicated as my first try didn't seem to go through.


llee08032
Posted: Wednesday, July 20, 2016 7:20 AM
Joined: 5/20/2014
Posts: 4408


Alz+,

It seems you maintain your independence for the really important things. I admire how you are always searching and finding "meaningful activities for daily living." I think if one lets go of some things they have more room and flexibility to do what matters. I thought of you last weekend when I let the house cleaning go and enjoyed working in the garden instead. Love that guilt free feeling of letting go!

I heard someone say if you think you're in control take a box of exlax and then see how much you're in control. It was funny at the time! 

I do best when I surrender and accept that God is in control!