A Checklist For Your Parents or Loved Ones If You Suspect They May Have Dementia, Part I

Because it's the holidays, and I won't be able to conclude the week until tomorrow, with Mom, I've tossed in this piece, which will be the theme for this week.  Watch for the second part of this post on Thursday, and the usual Sunday post, tomorrow, Monday, 12/29/2014.  



For years we suspected that Mom wasn't quite right.  But, when you're a kid, you don't really know much about dementia - in fact we knew nothing  (Okay, a bad joke, but it was true).  Alzheimer's hadn't really come to the forefront, and if an elderly relative was "daughty", then that was attributed to aging and the aging process.

Today, more is known of Dementia and more than just Alzheimer's (AD).  Now, we have Vascular Dementia, Sundowner's, Alzheimer's, Parkinson's Disease Dementia (PDD), Lewy Body Dementia (LBD), and more.  They're all different, yet they all share the element of Dementia.

More and more of the aged and aging are developing symptoms, and we never know just who or when.

So, with that in mind, it seems practical to begin to put together a checklist for those of you who might want to begin arming yourself with resources.

1.  Durable Powers of Attorney.
      This is something that could very well be the most crucial document in your possession.  This allows you to manage any and all accounts for your patient, with the understanding it's all benign and you are working with their best interest at heart.

2.  Medical Powers of Attorney.
      This is something about which you should speak with your loved ones.  Do they want a DNR?  What are their wants medically?  What sort of End of Life procedures are they asking for?  Yes, a rather uncomfortable conversation, but crucial.
      Also, this allows you access to the physicians and to be present in procedures.   Doctors are able to converse with you and help you in determining the best courses of action, and they can also work with you as the disease progresses.
        With the HIPAA rules, this is also a must have!

3.  A Physician Who Understands and Acknowledges the Patient's Needs and Wants.
     Have a conversation with your loved one's physician about medications and dementias.  Find out what they actually know, understand, and determine whether or not they will be a vehicle to help move forward, or a hindrance.  A well-meaning doctor who knows nothing could do more damage than good, and this could decrease the quality of life for the loved one.

4.  A list of medications.
      Know what medications your patient is using, as well as the dosages.
      Research those medications using WebMD.com, or another that your physician or pharmacist refers to you.  You should be aware of the side effects, as well as the usages.  Do some cross-referencing, as well, to make sure that medication is the best one to be using.
     For example, many LBD patients are using Risperdal, and there is talk of a patch with Exelon.  Some see the benefits, and others are experiencing negative side effects.  Mom is on Quetiapine, and this is the best for her.  So, there are options.  Just be sure you know which will do the best, and which will not do damage.

5.  A list of Dementia Resources.
     Go online.  Visit the NIH.gov and roam around.  Visit the LBDA.org site.  Visit the Alzheimer's Association site.  Look at the Alzheimer's Reading Room, and other sites associated with the forms of dementia.  There are quite a number of good blogsites out there, as well, and people share quite a bit.

      

Being Prepared!

One thing none of us (well, there are those few) want to think about is an emergency where we are somehow incapacitated to deal with our immediate affairs.  How are YOU prepared for those?

Here are a few things you may wish to consider in the near future - just in case!

1.  Medical Stuff:
     Mobile Phones -   These can be a life-saver and a time saver!  Especially if you have an ICE app - IN Case Of Emergency - with information on who to phone, etc.
    There is also the Family Medical Information App on Googleplay store, Chromestore and iTunes app store.  This is a very handy application from Appentive.
      This app allows you to input your doctors, insurances, medications, allergies, conditions, etc., and it also interfaces with the ICE app from Appentive, so if your phone is locked, it adds another layer that allows the first responders to access the vital information in case you are unable to.  I have this on my phone for both my mother and myself.    I have found that I can actually email the information to the doctor/clinic, and they have the right scrip to decrypt it, and they have the information right there!
     Providence also has MyChart app, which they can walk you through to access your medical records, chat with your doctor, view and make appointments, see test results, etc.  This is also available on the web as well.
      These may seem to be a little annoying to deal with, at first, but believe me, it makes accessing Mom's information quick and easy for me, when I need it.  I can also keep it updated.

2.  Legal Stuff:
     Do you have your Powers-of-Attorney ready?  These include Durable and Medical.  These are, perhaps, the two most important documents you should have.  I don't care how young you are, or how immortal you believe you are; they are vital.  Without them, you could create a maelstrom of chaos for those around you, and decisions will be made, perhaps against your hopes.
       Mom had these done a few years ago, luckily.  She sent copies to the parties involved, and when they were necessary, they came out and were used (and still are!).  She also related her wishes to those on the medical, ensuring those parties communicated.  She chose me (Lord knows why), and her very close friend, Nadya (because I was 250 miles away, and if something immediate needed doing, then Nadya could easily determine action per Mom's earlier directives).
      Mom's Durable has more than one party mentioned in case any of those parties couldn't fulfill the duties for whatever reason.  This helps in paying her bills and being her advocate.
     Luckily (or not), the responsibility has fallen on my shoulders to advocate for her on nearly every level.   I am her caretaker outside of St. A's, as well as the contact for them in case something needs reporting or doing.   I do have another brother who lives out-of-town who is also on the Durable, but his ability to take the actions would be too difficult as he's too far away.

Have you also made your Living Will? or Living Trust?  These are also vital - just in case.  You don't want to have your family bickering about your end-of-life wishes.

Then, there is the matter of your will.  Be sure to have this done as soon as you are able, no matter what.  You don't want to see your 'peeps' begin to foam and froth at the mouth over your things - and those things you cherish being tossed out or broken in a custody fight!

AT this time, These are the Things I Believe Require the Most Immediate Attention.  Believe me when I tell you you never know what's coming up around that bend in your life!

Here are some sites that can assist you in making these decisions:

Advance Directives        Advance Directive Basics         Final Wishes - Directive

What is a Power of Attorney?    Legal Matters including Guardianship & Estate Planning

The above are links from the National Caregivers Library.  This should give you a good idea of some things you should be looking into.

You should also meet with an attorney who specializes in Estate Planning, and if you're dealing with an elderly parent or relative, you should also be sure your attorney is fluent in Elder Law, as well.  The attorney should be able to guide you and help you make the right determinations.  Of course, this may carry a cost, but it's a fraction of what it will cost in time, energy, relationships, and money - not to mention quality of care for the loved one.

I look forward to finding more sources for you, as well.