First Post, starting the journey

mainstreetmarshall

Hey everyone. Just joined. We're starting the journey officially now I guess. I had noticed behavior changes over the last 5 years or so and finally forced the issue to get her into the doctors office. My wife, who had a highly technical career in medical care, retired 4 years ago at 63, shortly after symptoms began. Here's a woman who is very intelligent and educated, now can't spell words or do simple math in her head. These tests were given in the PCPs office and he immediately ordered blood tests and an MRI. Wife is aware there is a memory issue but resisted the diagnosis. I've begun to limit her driving. Her driving skills have always been a terror for me and those who share the road with her.....and a source of many arguments over the years. Fortunately, we're both retired now so I have an excuse to drive her wherever she needs to go. My first real outside sign that there was an issue was a confidential call from one of her co-workers who felt compelled to let me know she was having issues at work with completing tasks...something totally out of character for her. Co-worker felt something was wrong. A retirement offer showed up shortly afterwards thank God! So we are beginning the journey down a new path. She's been accepted into a trial study in Cleveland for some new drug but I've put the brakes on that until we know more from the PCP. Sorry to ramble, just felt the need to share. All the kids live far away and we're contemplating a move to be close to them in the near future.

M1

Welcome Marshall, though sorry for what brings you here.  There are lots of kind, compassionate folks here and much good information to be had.  You'll learn a lot if you read a lot of threads, and we all support each other as best we can.

I am so sorry and completely identify; my partner was a highly successful custom contractor and now cannot remember what drawer the forks are in.  I am glad her doc is involved, let him/her be the one to tell her not to drive.  Don't expect her to agree; ask for a formal driving assessment (takes the monkey off your back).  Many of us resort to subterfuge to disable vehicles/get the keys away.  Learn about anosognosia--it's more than denial, it's true inability to recognize that there's a problem.

The other common first piece of advice is to get your legal and financial affairs in order ASAP.  A certified elder law attorney (CELA) can help do this, including helping you assess whether you need to plan for Medicaid in the future if long-term care funding is needed.  

Good luck.  The four big safety issues are money, guns, cars, and meds, IMHO.  

sandwichone123

Welcome to the place no one wants to be. This is a great community, and very supportive.

My dh was working at home (we both were), so I saw the decline in the ability to get work done before his coworkers did. His boss was really impatient and not very kind at the best of times, but when she retired and a new boss was coming on we started working on FMLA/retirement right away. I got him retired at the end of March, so now he's retired and I'm still working at home.

My dh's kids live very far and don't have a close relationship, but my kids are pretty helpful, which is so appreciated.

Diane

Ed1937

Hi Marshall. Sorry you have to be on this road with us. But if you have to be, this is a good place to land. Wherever you are in this journey, someone here has already been there, and they are willing to help.

I'll second the advice to see a CELA if you haven't already done so. You don't want to wait for this because if you wait too long, you will certainly be sorry.

ButterflyWings

Hi Marshall, 

Echoing everything M1 said. And lots of good advice and encouragement from the others as well. This is a good support and resource group, if we unfortunately must walk this path.

Here are a couple of links to articles I have found priceless to guide my understanding.

- Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

- This is an excellent article and good to share with interested family and friends:  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Good luck to you.

aod326

Hi Marshall. As others have said, glad you found this place because it's a wealth of knowledge and practical tips, as well as lots of support from people walking/having walked the same journey you are beginning.

How caring of your wife's coworker to call you. It sounds like your wife was able to retain complete dignity in leaving her profession when she did.

One thing to bear in mind with the clinical trial is that you often get more testing/imaging/support when you're a trial participant. Any trial procedures are paid as part of the study, so that can be a savings too. (Quite apart from the potential actual benefit of course!)

Come back often - very best of luck.

mainstreetmarshall

Thanks all! Yes the legal angles are next hurtle. I have to make sure her pension and investments are safe. There is a family history to the dementia...she denied it until I reminded her ( at the Doctors office) that her grandmother and mother both had dementia at time of death. That's when things took a serious turn in the office. Thanks for the links, exactly what I need to read right now as I prep for what's next.

mainstreetmarshall

Wow that "Understanding the dementia experience" article is excellent! I learned more in that one article than I have in weeks of reading! Thanks! When the time comes to let the kids know what's going on, I'll forward that article to them.

Quilting brings calm

I recommend the book The 36 Hour Day.  Read a chapter here,  there, or parts of a chapter as you need to.  Great index in the back to help  you quickly find something in particular.