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Posted: Wednesday, August 3, 2016 5:09 PM
Joined: 7/14/2016
Posts: 20

Another trip to the memory clinic today. We met with a fantastic social worker there. Sadly no matter which doctor we ask or how we ask the question, the answer is always dementia. I'm not sure of all the emotions I have felt since the dx was first announced. As I have battled depression for many years, I can honestly say that was not an issue since the dx. My world has shrunk down to a very small circle. If denial was mixed in the other multitudes of emotions, it's gone now. They have also all but demanded that I do not drive. 

Our next stop is the Yale New Haven clinic where we hope to find a way to get a pet scan. 

Iris L.
Posted: Wednesday, August 3, 2016 6:14 PM
Joined: 12/15/2011
Posts: 16575

I'm sorry your world is shrinking, Jim.  It is still disturbing to get this diagnosis, even if you have been thinking about it for a while.

But know that your life is NOT over, even with a dementia diagnosis.  You still have time to have a fulfilling life!  It will take some work, but you can do it.

Did any doctor offer you a trial of Aricept or Exelon patch?  Ask about this, because they can help you function better.  I have done better with my medications.

I'm sorry about the driving.  What do you think about your driving?  What does your wife think?  Is there senior transportation in your area?  (Access)  Get an application, and you can will be eligible for door to door transportation.

You will have to make legal and financial arrangements.  Most people use an elder attorney to advise you on this. 

Some localities have an Early Stage Support Group.  You can call your local chapter and see if this is available to you.

What did the social worker have to say to you?  Were you able to come up with some questions?

One of our emeritus members, SnowyLynne, used to give us good advice after diagnosis.  She would always tell us, "Get your affairs in order, then go live your life!"  I think this is wise advice for us.

Iris L.

Mimi S.
Posted: Wednesday, August 3, 2016 7:45 PM
Joined: 11/29/2011
Posts: 7029

Blankety-blank  my whole response gone.

Oh well I'm not rewriting it.

Do go to a Certified Elder Law Attorney.  Get your medical and legal affairs in order.

Then begin the rest of your life.

Ask about Best Practices. Finally the top guns are saying, there is no cure, but something can be done!

Posted: Wednesday, August 3, 2016 8:37 PM
Joined: 7/14/2016
Posts: 20

As I mentioned I was able to spend a quite day out at the campground writing out my questions. Unfortuitly when my wife picked me up I forgot them there. Getting use to that. I really I'm living my life, just spent a couple of hours with three grandchildren. I watched "frozen" with my granddaughter.  She could watch it a million times.
Posted: Thursday, August 4, 2016 8:01 AM
Joined: 5/20/2014
Posts: 4405

Denial is not a river in Egypt and it is part of the natural process of coming to terms with new diagnosis. Denial is one of the stages of grief that we go through when a loved one dies. 

Jim, I think you're doing everything you can to deal with dementia diagnosis and looking into what type of dementia it is that you have. There is no right way or wrong way to deal with dementia diagnosis.

Posted: Thursday, August 4, 2016 10:41 AM
Joined: 7/24/2015
Posts: 3020

I think we all go through that for a time.  Dx can be a real shocker.  I don't think anyone is immune from being thrown for a real loop. 

First things's just dementia.  Try not to make dementia mean anything more than it does.  Try not to buy into the "propaganda" that it is "oh-so-bad/sad/horrible"...because there are definitely worse things that could happen to someone.  And, despite being fatal...there really ARE some perks to having dementia.  Since you have a history battling depression, then you are probably well equipped about the NEED to very purposefully look for the brighter side of things.  So, as you give you self some time heal...take in the dx...and get you bearings again...start looking for some of the silver linings. 

The best one I like, is that most people just up an die...with little to no notice.  They have no chance get right with their relationships, no chance say what they wanted say.  Dementia gives you one great, great gift that I do no think can be underscored gives you TIME. 

And since you have time, I do no think you need rush into getting you affairs in order or stopping driving (unless you making errors)...take TIME get you head around things first.  No one should be making end of life decisions before they know what this disease really about. 

As you start wrap you head around it, yeah it a doozy, but give you self the TIME.  It takes TIME get a grip on it.  No one expects you get dx'd and have you sh*t next day.  Be kind you self as you get through this next little bit. 

Know that one day you will have get you affairs in order an make plans you future...but for now just let that be on you radar. 

Many people are of one opinion or another re driving...and a great many people live in the seat of their FEARS about dementia rather than reality.  Dementia IS progressive and there WILL BE a day one day when you can no longer safely do so.  That might be today, if you are making errors...but that also might not be for a few years.  Again, dementia gives us time...some more than others...but generally gives us a lot of time.  So take stock, they suggest quiting do you feel you are doing at driving? 

For what it is worth, I still do many with young onset.  Many with young onset still work, are still the heads of households, and many are the single parents of young minor children.  So life not over day of dx. 

The other very interesting thing take note of...the more you demand of you brain, the more it will give you.  There is a saying in dementia, use it or lose it.  Soooo many people just give up tasks the moment they start getting the least bit challenging (after all, they have dementia right?)...but this just hastens the reclaiming of the brain's wiring.  Try to stay doing all you can for yourself for as long as you can.  When you have to give something up, then do...but don't give it up prematurely. 

Some people have had their dx 10, 20, or even 30 as I say, dementia grants you TIME.

I highly recommend the book, Dancing With Dementia by Christine Bryden...she has dementia (and is still going strong) was one of the first things I read, and it was very inspiring and helped me not give up hope. 

Hang in there.  I hope something I said helps. <3