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Being a Dementia Pioneer in 2019
Iris L.
Posted: Sunday, February 3, 2019 7:06 PM
Joined: 12/15/2011
Posts: 16417

I created the term Dementia Pioneer for myself to give me motivation after I fell into a deep depression when my geriatrician told me that I had to accept that I had dementia.  I was motivated to take Best Practices more seriously so that I could function better and that I would be prolonged in the early stages.  

It worked.  For about ten years I was fairly okay.  I was able to do bucket list activities, which was mainly to travel overseas on tours.  Now, I seem to have come to another stage.  I feel that I am getting STUCK; I am having more trouble functioning.    At the same time, my co-morbidities are actually getting better.  I am no longer on pain medication for lupus nor on thyroid medication, and I have lost eighty pounds and my Hgb A1c is back in the normal range so I don't have diabetes.


I still have an issue with my blood pressure.  In my younger years, my bp was 110/60.  It had been as high as 160/100.  Now it is around 120/80 with medication.  Is this low enough not to be a problem for my brain?  My neurologist told me I have leucoairiosis, which is a description of my MRI findings (spots in the white matter).

This brings me to now, in a new stage.  My geriatrician, whom I trusted because he was so forthcoming, told me that the disease continues on beneath the surface even with medication and even while one appears stable.  I did not quite get what he meant at the time, but now I do.  Whatever I have appears to be still continuing.  

I know that I don't have Alzheimer's Disease based of the lack of amyloid on my Amyvid PET scan from the IDEAS study.  I fall into the "not otherwise specified" group, according to my neurologist.  This term is no longer in the DSM5, however.  So what now? 


Over the past month I have been helping out four friends and family members who are dealing with LOs with significant care needs.  Although all of the LOs had been very compromised for at least a year, what struck me is how unprepared all of them were for the next level of care, when their LO would no longer be safe alone or when their LO would become a two-person assist.  They are dealing with repeated falls and complete incapacity.  Now they are dealing with nursing homes or home caregivers.  All of my caregiving friends and family members are older and in declining health themselves.  I am warning them about the rigors of caregiving and their need to care for themselves too.


What does this have to do with me?  This is all a big wake-up call for me!  For, at my own stage, not early but middle, I am unprepared.  I am unprepared for the late stage as well as unprepared for this middle stage.  Being a Dementia Pioneer is to help me motivate myself to get prepared for my own future of less capacity, not just to do my bucket lists.


So this is what I will be focusing on now.  I learned from the members on these boards, one emeritus member in particular, SnowyLynne, that I must get my affairs in order.  From other members, including Alz+, I learned that I must get my household in order.  I do not have a natural care partner close by who would take over these projects for me.  

Performing these important projects is also what being a Dementia Pioneer neans to me, for I will have to take on these projects on my own.  I have already learned from my own earlier experiences that the vast majority of professionals who are available to help older adults in my position are clueless as to what I need .  Finding knowledgeable and trustworthy professionals will be the first challenge.  


I am posting this because I know there are others in my position who are traveling their dementia journey alone.  I know that most do not post.  But I hope that I can warn and encourage solo Dementia Pioneers to become proactive and do whatever is necessary for themselves.  Step-by-step we can care for ourselves as much as possible! 


Iris L.

Mimi S.
Posted: Sunday, February 3, 2019 8:50 PM
Joined: 11/29/2011
Posts: 7035

Dear iris,

Thank you for your thoughtful post.

Personally I hope that someday the definition of Alzheimer's will change, possibly two different names. The first will be for those with proven amyloid. The second type will be for those exhibiting signs, as show by neuro-psych tests and daily life, who do not have amaloid. Those folks know something is wrong with them.


What is your plan B?  Especially with no one to make those decisions, you are astute enough to make them.  You are incredibly independent right now, but what happens when  cooking meals, ordering and getting meds, groceries and other necessities becomes harder and harder?


You didn't say, but I assume the loss of weight was a good thing. The BP sounds fantastic!!


Seems to me I also have spots in the white matter. it's in the reports but  neurologist never discussed it with me.
Iris L.
Posted: Sunday, February 3, 2019 9:12 PM
Joined: 12/15/2011
Posts: 16417

Yes Mimi, I too believe there is classic, amyloid-type Alzheimer's Disease and there is the not otherwise specified type of dementia.  



I do know that I am like several members of my paternal family who never received an Alzheimer's Disease diagnosis and who had fairly good memories, but who had trouble with their instrumental ADLs and executive functions and eventually were not safe living alone. 



Yes, I need to proceed with plan B .  I have ideas in my head, but I need to get them on paper.  I like that you have always been proactive in your own care, Mimi.  In fact, you are my inspiration for a Dementia Pioneer!  I like that you encourage us with Best Practices and with searching for the right type of future care home.  Thank you so much, Mimi, for your wisdom and for being so willing to share!



Posted: Tuesday, February 5, 2019 8:22 PM
Joined: 7/28/2017
Posts: 176

You are a dementia pioneer, even in how you share your story. You are an inspiration as well as a flower. My mom's favorite flower, rest her soul.
Posted: Wednesday, February 6, 2019 12:42 AM
Joined: 1/11/2019
Posts: 70

Oh Iris:

You inspire me.  As I've shared, I have white matter disease and per my  MRI images my neurologist says I'm in the moderate stage as far as damage.  Per the Mayo, my BP is/was the culprit.  With that said I / we cannot afford ANY stress that causes BP elevation that may cause further silent strokes causing the progression of the disease.  My goal was set at stay under 130 and under 80.  With vascular dementia one stair steps down. 

I'm sorry to hear you feel STUCK.  Each change is so frightening and stressful.  Each new experience (disease related) tips us over.  Last week a dementia moment in the grocery store for me.  I cried and cried when I got home.  Grocery stores are just not my friend, to many decisions and choices.  TOO much can do!  So to eliminate that stressful adventure I'm going back to my home meal plan Blue Apron.  Hell my hub probably enjoys those meals as I've never been a cook.  LOL. 

I created a binder with everything anyone would ever need in it.  My living will, my financial stuff, my insurance stuff and on and on.  My peeps have all been shown the binder and where I keep it. 

Dementia Pioneer is VERY motivating.  As we've chatted before the depression that went hand and hand w a dementia diagnosis was overwhelming.  Mine came at 57 years old and by goodness I'm gonna Pioneer.  It's transparent co-posters' like yourself and others that give me hope, education, fellowship and camaraderie in this VERY isolating disease. 

Chin up!  Now stare at your feet and say "oh Lord, you pick them up and I'll put them down"





Iris L.
Posted: Wednesday, February 6, 2019 6:16 PM
Joined: 12/15/2011
Posts: 16417

Smiles, don't stress over the grocery store.  We must learn to accommodate our illness.  Do what you have to do to compensate and to make your life easier.  We don't have to feel guilty or bad about making changes to help ourselves.  Blue Apron sounds great!  


As I have posted many times, the outside world has little to nothing for us.  I have found that the BEST advice and guidance I have received has come from the members of these boards, both patients and caregivers.  I have received so much wisdom that I want to share with others and pass on what I have learned.  I am convinced that the only way we can proceed is to share with each other.


BTW, I had MRI white matter changes noted at least twenty-five years ago, along with complaints of significant memory loss.  None of my doctors, specialists or other professionals made the connection.  What good are they? 



Posted: Wednesday, February 13, 2019 8:26 PM
Joined: 1/11/2019
Posts: 70

Iris, Guess what?  I did husbands birthday is tomorrow and I'm having the kids over and cooking.  Oh I hope I wake up tomorrow having a great day.  Anyhow, I went to the grocery store today and got EVERYTHING I need to pull off a nice birthday dinner for him. 

Been feeling a little light headed lately......I'd like to use the word dizzy, but that is not the right description.  Is that all part of the gig?  So if I turn it seems my head takes longer to catch up with my body.  Does that make sense?  Typical symptom?  I've been spending a lot of time on You Tube watching mini documentaries on ALZ, dementia, etc.  Wow there is so many of us.  Some good information and sharing going on out there. 



Iris L.
Posted: Saturday, February 16, 2019 11:24 PM
Joined: 12/15/2011
Posts: 16417

Smiles, I hope you had a great combination birthday and Valentine's Day dinner for your husband!  I find it is not necessary to do everything from scratch; we can improvise and accommodate.  

I also find that I am more successful with tasks if I break down the steps, don't rush, and avoid distractions.  I also have to let go of negativities and doubts and anxieties--hard to do but very necessary.