Home Safety Checklist
RSS Feed Print
Where do I get information about the hereditary aspects of dementia?
Leah_JN
Posted: Saturday, May 3, 2014 8:55 PM
Joined: 11/27/2012
Posts: 12


I lost my mother to Vascular Dementia four years ago.  Unfortunately, it was left up to me to make that diagnosis.  Her PCP who knew her well enough to recognize she was having problems said nothing. He knew me well enough to be comfortable talking to me about such matters.  All I know about dementia, I learned here rather than her doctors.  I requested dementia medications by name for her as opposed to her doctor recommending them.  
Now, I have no living relatives.  I'm scared to death I will develop Vascular Dementia and I will have no one who CARES to care for me.  The minute doctors walk into the examining room door, they are entirely focused on walking out of that examining room door.  They don't listen and they don't care.  I don't know where to get information on my future prospects.  I also have Major Depressive Disorder.  I can't find a psychiatrist or a decent psychologist.  I get medication from the PCP who won't listen to me.  
I'm pretty much hopeless about my future unless I get run over by a very big truck.  I can't find help or any medical professional who cares and will take the time to listen and talk to me.
Any suggestions?

Iris L.
Posted: Sunday, May 4, 2014 3:31 AM
Joined: 12/15/2011
Posts: 18508


I was in the same boat, Leah.  I remember you from the earlier boards. 

Even the neurologist who has prescribed my Exelon patch and Namenda didn't believe me when I first came to his office.  His working diagnosis was "subjective memory complaints."  It was only after the results of the six hours of neurocognitive testing indicated the diagnosis of cognitive impairment not otherwise specified.

Even with that, he tried me on anti-depressants before suggesting the Exelon patch.  Another neurologist told me not to use the Exelon patch, because it would have no effect since my dx was not Alzheimer's disease.  HaHa, she was wrong!

If I remember correctly, you are an accountant.  One of the first serious changes I noted was difficulty in doing my taxes.  You will have to seek out markers for yourself as to when to seek medical attention for your cognition and memory.  Keep a copy of the 10 Warning Signs of AD from the main web page, alz.org, and check yourself every few months.  Write down your responses so you will have something concrete to compare.

When you notice significant signs, ask for the six hour neurocognitive testing.  This will point you in the right direction.  Of course, have all the "rule-out" diagnoses and conditions evaluated for.  Make sure you keep your cardiovascular system in good condition, with special regard to hypertension. 

Don't rely on genetic testing because the results are not specific.  People can have the APO e 4 gene, and have a somewhat increased risk of developing AD, but that risk is not 100%.

Look into Best Practices and follow them. 

Make your own legal and financial plans.  Read the caregiver boards and the alz.org site for suggestions. 
 

 

Look into alternative housing.  This is what I am doing.  I want to age in place where I live now or move to an independent senior place that offers housekeeping and meals and activities. 

I do have some distant relative (younger than me), but I don't want to burden anyone.  I've been through this before with two ailing older relatives as their distant and long distance relative.
 

 

Don't expect ANY help from professionals that deal with seniors along the way.  My experience is that the vast majority of them are CLUELESS as to what to do for solo older adults.  This is because I got absolutely no advice, and in fact, working with them only served to waste a lot of time (years) when I could have been making plans.

The ABSOLUTE BEST ADVICE is found on these message boards.  I read four boards regularly and have received quite an education.  I am just now (after 5 years on this board) getting to the point of getting things moving.

There's quite a great deal of overlap between dementia and depression symptoms.  The psychiatrists are CLUELESS in this area.  Don't expect much insight .  The advice from my psychiatrist was "Do the best you can."  The advice from the psychologist was "Push yourself."  I find better advice from Dear Abby.

You will have to basically learn manage your depression for yourself.  This is what I had to do.  This is what I am doing.  Learn to rely on the message board members for support and guidance and encouragement. 
 

 

Let's keep in touch, Leah. You and I seem to be the only ones on this board without spouse, children or close family members or close friends for the future.  I'm making plans.  My INDEPENDENCE is my PRIORITY!

Iris L.

 


Paul Hornback
Posted: Sunday, May 4, 2014 8:06 PM
Joined: 8/9/2013
Posts: 584


Leah, Iris provides some very sound advice. She is our go to guru and most of us would be lost without her. I'd listen to her advice and follow her counsel. She is one wise lady because she's been through so very much.

I hope you will keep coming back to the boards for support, comfort, and guidance. It has helped so many of us.

God Bless, Paul


marjie01
Posted: Thursday, July 10, 2014 9:07 AM
Joined: 4/2/2013
Posts: 1565


Leah, I agree that Iris is a wealth of good information. As part of the Best Practices she mentioned, I'd like to specifically point out the Mediterranean diet. Part of my husband's cognitive decline, I'm certain, is related to vascular issues and I try to keep us eating along the lines of these practices. Here's a good link: http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/mediterranean-diet/art-20047801 . (You may have to copy and paste if it doesn't come through as a link.)

Best wishes ~


Myriam
Posted: Thursday, July 10, 2014 12:23 PM
Joined: 12/6/2011
Posts: 3326


Leah, just checking in to see if you are alright.
Iris L.
Posted: Thursday, July 10, 2014 2:56 PM
Joined: 12/15/2011
Posts: 18508



This looks like a good reference site.  Thanks for sharing, Marjie.

Iris L.

 
× Close Menu