Wondering about resources pre-Alzheimer's diagnosis

GothicGremlin

I'm sure you're all ahead of me here, and I have to ask -- what's out there for people who may be in the MCI stage but don't know it?

I ask because some of you know my (younger) sister was diagnosed with early onset Alzheimer's. This happened in 2018.  We were all shocked because as far as I know, AD doesn't run in our family. None of the relatives I've quizzed can remember any of our elders having it.

Once I started reading about AD, I realized there was an MCI stage, and I wondered how we could have missed my sister's MCI stage. I mistakenly thought maybe if she did have MCI at one point, it was very short.

I was so wrong.

We recently placed my sister in memory care, so I started letting her friends know so they could go visit her. One of her friends is her ex-boss. She told me that my sister started having problems at work as far back as 2010. Knock me over with a feather. She told me that my sister "struggled with making decisions and follow through." Sounds a lot like the things that I've read about MCI. She told me that she feels terrible that she didn't say anything, but it didn't occur to her that my sister might be at the MCI stage at age 51.  Of course I told her not to worry about it, all of us missed it too (which is true).

Which leads me to - what's out there for people? Are there any resources out there for people in the MCI stage? And what if AD just isn't on your radar, how do you discover it before you get a diagnosis?  Or is that just how it is? 

Iris L.

GothicGremlin wrote:

  She told me that my sister "struggled with making decisions and follow through." Sounds a lot like the things that I've read about MCI. 

This is exactly what I am trying to explain to Eaglemom on my other thread.  I have trouble making decisions!  This started years ago, while I was still working.  I believe it started before significant memory loss.  I know it caused me a LOT of problems and dismay!  My mind goes back and forth--black-white-black-white-black-white--like that.

She told me that she feels terrible that she didn't say anything, but it didn't occur to her that my sister might be at the MCI stage at age 51.  Of course I told her not to worry about it, all of us missed it too (which is true).

It is a shame that no one, and I do mean NO ONE, recognizes indecision as a sign of anything except being a flake.  Indecision is not something you can disclose to one's colleagues.  I certainly did not.  My personal doctor was not interested.  I was told to "go see a shrink."  My life was miserable in those early years.  I could barely function.  People thought badly about me.  I received complaints.  At that time, burnout in career women was a prominent topic, so I was initially diagnosed as having depression-anxiety possibly due to burnout.  But also at the same time, career burnout was considered a form of WEAKNESS.  "If you can't distant the heat, stay out of the kitchen."  Like that.

I always advise new members who are still working to review their annual or periodic employee reviews for evidence of complaints or warnings of poor job performance.  They may need to take short term medical leave of absence (sick leave) pending completion of their medical and neurologic evaluations.  That is what I did.  In my case, my short term leave of absence morphed into long-term disability since I never returned to a condition of being able to function in my career.

Which leads me to - what's out there for people? Are there any resources out there for people in the MCI stage? And what if AD just isn't on your radar, how do you discover it before you get a diagnosis?  Or is that just how it is? 

After many years on these boards, I don't see any improvement in diagnosis.  I hate to say, it's just how it is.  Only those with a high suspicion due to having family experience will have any thought about MCI.  I don't even think MCI was a diagnosis when I began to have problems in the mid 1980s.

Be aware that I do not have Alzheimer's Disease.  I think some people who do have EARLY Alzheimer's Disease have a chance of prolonging the early stages by practice of Best Practices.  But only time will tell.  Best Practices has helped me.  But for many PWDs, the progression is relentless and no intervention seems to help.  It is so hard to tell; we only know in hindsight.

I follow your posts because you are caring for your sister.  I have a brother but he is not interested in caregiving.  I have to take care of my own disability needs.  That is why I appreciate so much what you caregivers post about your experiences.  Thank you, and please keep posting, Gremlin.

Iris

GothicGremlin

Thank you for everything in your post, Iris. I do my best.

Some of what you say isn't necessarily what I want to hear, like, "that's the way it is", but it's something I suspected, and something I want to know. It's discouraging that we, as a society, haven't prioritized getting earlier diagnoses for people. In my sister's case, my cousin and I were able to make appointments for her and get her to them, as soon as we started seeing symptoms. But by the time we started seeing symptoms, she already had AD - not MCI.

It's interesting that others have trouble seeing the difficulty making decisions as a symptom. It was one of the first things we all noticed about my sister - but then again, everyone presents in different ways, so maybe that's part of it. And even though we all noticed her problems with decisions, we didn't recognize it for what it was.

Your experience matches up with what my sister's ex-boss told me about my sister. While at work when she was in the MCI stage, people thought my sister was simply screwing up - not following through on projects and not being able to make timely decisions. So, they started thinking badly of her, and it hurt her feelings. Burnout also came up as a topic. Makes me wonder how common this is... She ended up taking early retirement. Now I'm really glad she did because at least she retired with a pension and health insurance. If she'd been fired .... I don't even want to think about that.

There isn't anything I can do to change the past, but maybe something can be done to help change the future. When I talked to my sister's ex-boss, she suggested talking with someone who works for the city to connect with their "wellness program" people, and see what they offer (probably nothing), and then see where we go from there. I'm not holding my breath, but I guess you have to start somewhere.

At least I'm good at asking questions.

Iris L.

I am very disappointed that not much progress has been made in early diagnosis of the dementias.  There ARE specific clues to diagnosis, but family and professionals fail to put the clues together.  I don't have the energy to do more.  I try to alert new new members on t he validity of taking short term medical leave of absence during a possible dementia diagnosis.  Otherwise they can be fired and lose all benefits just when they need them the most. 

Your sister is very fortunate to have you looking out for her!  Forty percent of PWDs live alone and have to rely on adult children, ex-spouses, close friends who haven't abandoned them and sometimes even their aged parents. Or like me, rely on paid professionals, many of whom don't know much about caregiving for a PWD.  Best wishes to you and your sister, Gremlin.

Iris

French

Here, in France, I never heard of MCI, your are directly diagnosed AD or another disease, or nothing.

In fact, when my partner was diagnosed, he was already stage 4 (in 2019 and at 49 years old) and they did all the tests to diagnose AD : pet-scan, Lumbar puncture, MRI.

Before we were thinking it was burn out because his troubles seemed to have appeared very suddenly. But in fact he had troubles working about 2 years before, but nobody said it.