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My Wife Was Just Diagnosed
ABoyNamedJoe
Posted: Tuesday, December 18, 2018 6:41 PM
Joined: 12/16/2018
Posts: 8


Hello,

My name is Joe (age 53) and my wife (51) has just been diagnosed with posterior cortical atrophy. It's mild and in the early stages. What's your #1 advise for someone in my shoes?

Thanks in advance,

Joe 


John1965
Posted: Tuesday, December 18, 2018 8:48 PM
Joined: 8/19/2016
Posts: 357


Joe,

I'm very sorry to hear that. You may find solace here; you are not alone. My wife and I are both 53. She was diagnosed 3.5 years ago with AD.

Steps? 

If your wife was working for a company/organization, talk to HR and learn what your options are for disability. 

Your wife's condition will get worse, hopefully very gradually, but use these earliest days/weeks after diagnosis to get your financial and legal houses in order. It's not fun, in fact it really sucks, but now is the time to have those serious conversations about advanced directives, etc. 

There's more to say, and others will chime in, but I'll leave it at that for now. Again, you are not alone and folks on this forum will pull for you and be in your corner. 

John


John1965
Posted: Tuesday, December 18, 2018 8:50 PM
Joined: 8/19/2016
Posts: 357


One more thing ... You may get more responses if you post on the spouse/caregiver forum. This Early Onset board is meant for those who have the disease.
ABoyNamedJoe
Posted: Tuesday, December 18, 2018 9:37 PM
Joined: 12/16/2018
Posts: 8


John: Ahhh - thanks for the tip. I'll post there.
abercrop
Posted: Wednesday, December 19, 2018 6:51 PM
Joined: 9/5/2017
Posts: 36


Sorry to read about your wife. My husband has PCA. It took us a few years to narrow the diagnosis to PCA. He is now 60.  If you are on Facebook, there is a good group I recommend you join. First hand experiences shared. 

There is currently a thread inquiring about average age of onset/diagnosis. I am suprised to learn how early this dementia presents.

Posterior Cortical Atrophy awareness

Closed group

abercrop
Posted: Wednesday, December 19, 2018 7:06 PM
Joined: 9/5/2017
Posts: 36


Joe-expect the unexpected.

My husband was having depth perception issues which caused quite a few issues with stairs in our home. He was also getting lost in out home, he would end up sleeping in whichever bedroom he made it to. He was early-mid 50's at the time. I sold the house and we downsized to a smaller ranch style home. I hired a contractor to update the master bath with grab bars, etc. Everyone thought I was jumping the gun, but my instinct was spot on because within two years he would be unable to work.

His driving deteriorated quickly thereafter- both depth perception and remembering directions. Around the same time he was having difficulties at work which caused substantial anxiety. In the end he "retired" at 57. If I had known this was on our horizon, I would have saved every penny I could those last few years he was employed.

If you have children- I should have had him write a letter to each of our children to be distributed upon death. Sounds awful, but he is not the same man he was just a year ago. I can only imagine what is to come. It would have been nice to have something for each of the kids expressing his love, and wit and intelligence, etc. All of that is hidden now.


frustration&laughter
Posted: Wednesday, December 26, 2018 9:34 AM
Joined: 12/25/2018
Posts: 3


Hi Joe.  All very good advice.  I would add that foresight when you have time is invaluable - but don't lose sight of the happiness you have in each moment.  That said....look to the future and what changes you feel you will need to put in place.  If you think that you will need to put up signs/visual cues, bring in professional care support workers or to have her learn to use support bars, be without your presence, etc - then get that in place sooner rather than later.  Don't wait until you desperately need something.  If she can adjust to something while she has her fuller cognitive reasoning capacity then it will be easier for her to accept when she is more challenged.  

One of my strongest suggestions may be to start a schedule where any primary caregivers have free time (anyone she may really depend on).  Even if you/they don't need it now, make it time that you are apart from your wife.  If she expects and is in the habit of not having you at a certain time, then it will be easier when the challenges mount as it will be nothing new.

Fear is very difficult and can be overwhelming when one has dementia - a sense of control battles fear.  Predictability or a schedule gives a sense of control because there is no surprise.  I feel that many aspects of coping come back to having a sense of control - knowing how to do something, expecting something to happen and knowing you've handled it before, having choices - even if only given a series of 2 simple options (ie: now or in 10 minutes, a yellow towel or a blue towel when taking a bath, cup or tea or hot chocolate after the bath).

I hope this helps.  You will find a lot of great suggestions.  Follow your instinct to enact what suits your situation the best.  Big hug of support.