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Suspected demensia in Mom, but gets mean/angry if discussed; Lyme disease connection?
ReallyScaredSon
Posted: Wednesday, December 4, 2019 10:57 AM
Joined: 12/4/2019
Posts: 2


Hi all.  Quick background: I'm 40, married with two young kids, and work full-time.  I live about three hours away from my parents, who are both 65 and retired.  Due to the distance and time constraints, I don't get to see my folks too often, and they have been visiting us less frequently as the years go by.  I was home for Thanksgiving, and saw some behaviors in my Mom that caused me concern.

In particular, it seems like she has no short-term memory.  She repeated herself several times, couldn't remember what desert she ordered when we went out to eat, etc.  I had noticed these things before, but either explained them away or didn't want to think about it.  But this time I finally realized I had to do something.  After we left their house, I was able to talk to my Dad briefly (about 30 minutes) on the phone.  He confirmed that indeed she's been having memory problems for at least a couple years now (maybe longer).  He said she also has some false memories and struggles to do things like balance her checkbook.  She's also increasingly retreating into herself: is afraid to be around friends and family, and basically just wants to watch TV all day.

Clearly we need to get her in front of a doctor.  But in my brief conversation with my Dad, he said he can't even talk to her about this: when it comes up, she gets so angry and depressed, he's afraid she might take her own life.  Obviously he wants to do something, but he feels like if he forced her into an appointment, he'd have to watch her 24/7 to make sure she didn't do anything.  That's not the Mom I know.

He said at one point he did have an appointment for her to see someone at a memory clinic; but the earliest available date was six months in the future.  And she eventually got mad about it and cancelled the appointment.

So the problem is, how can we get her in to see the right medical professional, given her behavior when the topic is simply discussed?  If indeed she has Alzheimer's or some other form of dementia, it looks like there are measures that can slow the disease's progress and possibly improve quality of life.  Even now, I have to communicate in private with my Dad; he even said she already suspects that he is going behind her back to discuss this with people and research it (which is true, but he's hiding it to avoid upsetting her).  I don't even know how to have a much-needed long, in-person conversation with my Dad about this.  At this point I don't think she knows that I know.

The other thing I feel is relevant: she contracted Lyme disease through a tick bite about eight years ago.  They caught it early and went through the standard antibiotics course.  But ever since then, it seems like she's had a series of peculiar physical health problems.  What I've read online suggests she may have post-treatment Lyme disease syndrome (PLDS), although I'm not sure if that can last eight years.  Though, what is clear is that our understanding of Lyme and tick-born illness is in its infancy.  I don't know if there is any relation here, but despite being "cured" of Lyme disease, her quality of life has gone down ever since it happened.  Though they were always physical ailments until the cognitive symptoms started (though I'm not sure how long ago that actually started).

Thank you so much for any thoughts or suggestions you might have.


Eric L
Posted: Wednesday, December 4, 2019 11:53 AM
Joined: 12/5/2014
Posts: 1227


So.. first things first.. there is really nothing you can do to slow the disease. In the early to middle stages, there is a possibility that the dementia drugs can treat some of the symptoms and make the middle stages a little bit better. At the same time, they don't really halt the disease. If your prognosis is 5 years (this is hypothetical of course), the dementia drugs won't change that. They'll just make the quality of life better doing those early to middle stages.

The thing is, your Dad might need to come up with some sort of elaborate fib to get her into the doctor. Don't discuss it ahead of time. He might need to contact their doctor to make it seem like the appointment is for him even if it is for her. You have to get sneaky with this kind of stuff.
MN Chickadee
Posted: Thursday, December 5, 2019 10:14 AM
Joined: 9/7/2014
Posts: 928


Dementia can affect reasoning, logic, emotions, and much more other than memory loss so sometimes our loved ones are not able to evaluate their needs and their brain is so compromised it doesn't recognize it's deficits, making it difficult to get to a doctor. Some people have to go to great lengths to get a diagnosis. Your dad will probably need to do some fibbing to accomplish this. Look at it as therapeutic fibs, in order to get her the care she needs. Set up the appointment himself, don't tell her ahead of time to worry about it. Write down symptoms and get it to the doctor ahead of time so he doesn't have to bring it all up in front of her. On the day of, use the fib that you think will fly with her. Maybe it's a check up for some other problem (bad hip, blood pressure etc.) Maybe it's a new rule from Medicare or their insurance that says you have to get a check up annually and they can go together. No big deal. Bribe with something after, like lunch at her favorite restaurant. Perhaps warn the doctor ahead of time of her depression and your worry that she will do something if she learns of her diagnosis so he or she can use language that won't frighten her or not mention the word Alzheimers etc. I would start with her PCP who can do initial blood work and cognitive tests and then refer to a neurologist. Many of our loved ones take something for anxiety and depression, so you might ask about trying a med for that. 

A diagnosis is important, but in the end it doesn't change a whole lot in the grand scheme of things assuming this is indeed dementia.  There are a couple drugs that can help slow symptoms, especially early on, that may buy her some time. But the most important stuff is to educate yourselves on dementia and techniques to communicate and give her the best quality of life possible. The 36 Hour Day is a good book to start with, as is "Understanding the Dementia Experience" which is a pdf that you can google. He will need to find workarounds for lots of things, similar to getting to the doctor. Logic and reasoning often do not work so you find what does.  Do the checkbook for her. Reduce her access to funds and needing to worry about finances. Find social situations she can handle (groups and normal communication may be too much for her to keep up now.) We found an adult day program (daycare) to be a great social outlet for my mom after she retreated from normal socialization. It was all on her level and she got out of the house and chatted with others and did activities. You and dad will need to steer the ship now, as it sounds like she can't. Focus on quality of life and comfort. Good luck and stay in touch. 


zauberflote
Posted: Thursday, December 5, 2019 11:43 AM
Joined: 10/24/2018
Posts: 548


This Lyme disease connection is something I've not run across before! Would she see a doctor for that?


OutsideLookingIn
Posted: Thursday, December 5, 2019 1:18 PM
Joined: 7/30/2018
Posts: 127


There is a link to Lyme disease and it had been in the news a few years ago.  

Here's link to one article: https://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/

It doesn't look like that went in as a hyperlink, but just copy and paste if it didn't.  

Hope she gets some help. That can't be easy on any of you.

OLI

 


ReallyScaredSon
Posted: Friday, December 6, 2019 3:13 PM
Joined: 12/4/2019
Posts: 2


Thank you all for your help and support!

Since posting, I've been in an almost one-way communication game with my Dad.  By that I mean, I've sent him a tremendous amount of my thoughts and ideas via his "private" email.  But he even for reading emails these emails, has to hide from my Mom, so replying is virtually a no-go.  He had to run an errand today, which he did by himself, so I was able to talk to him on the phone for about 40 minutes.

One of the things he said is that the cognitive issues ebb and flow.  On "good" days, the memory problems are minimal.  By "good" days, I don't mean good just in the cognitive capability sense, but overall she's happier and physical ailments are at a lull.  Likewise, he said the memory problems were worse when my family and I were visiting.  So what I saw were essentially the "bad" days.  He doesn't have an explanation for this, other than a suspicion it's due to the added stress of entertaining guests.  She's also suffering from really dry eyes (to the point where it hurts, and this has been going on for months now, maybe a year or more), and she also has bronchitis.

Based on the conversation today, it sounds like the Lyme disease angle may be our best bet.  Ignoring the cognitive stuff for now, my dad and I believe the litany of physical ailments she's had the last eight years are due to Lyme disease.  It either didn't get properly cured the first time, or she contracted it again (they do live in a rural area with countless deer, mice and ticks), or she has post-treatment Lyme disease syndrome (or all the above?).  But according to my dad, she is unwilling to believe her ongoing problems are in any way related to Lyme disease.

One of the problems she had was itchy palms, for which she saw (among other docs) a neurologist.  She asked the neuro if it could be related to Lyme in any way, and he said, emphatically, "No, you were cured of that years ago."  And apparently she has taken that as gospel truth since then, and now won't even consider the suggestion that Lyme disease could be a factor in her health.

What I'm getting at, is that my Dad made it sound like *any* conversation with her about her health is challenging.  Clearly the memory issues are a hot button, but he made it sound like pretty much all medical issues are hard to talk about.  He has to sneak around just to research Lyme disease.  He can't call or email to discuss with me any of her medial issues, unless she's not around (i.e. he has to hide it).  For example, one of her first post-Lyme issues was excruciating back pain that lasted for months.  There was no explanation for it, despite all kinds of tests.  Then it just sort of subsided, as if by magic.  That was so traumatic for her, that she won't even talk about it.  She wants to forget it, and I think is actively trying to forget about it.  My dad mentioned today that he believes that's actually when her memory issues first started.

 I am pushing him to try to document her medial history ever since Lyme: list all the ailments she's suffered, along with dates, doctors seen, and any meds or other treatments that were prescribed/taken.  I said this will be helpful regardless of who she sees next, be it a Lyme specialist or cognitive professional.  He pushed back, saying how hard that would be, given that he has to do it in secret.  But I tried to convince him that it can only help.  I said any future specialist will ultimately ask him for that information anyway, or will go about the diagnosis without the full story.

Thank you, OutsideLookingIn, for the Kris Kristofferson link.  I sent that to my Dad, and he seemed to think that might help convince her to re-visit the Lyme disease connection.  Daryl Hall (of Hall & Oats fame) is another famous person with Lyme disease.  Just do a web search for "daryl hall lyme disease" for lots of stories about him.

Thanks again everyone!


Joe C.
Posted: Friday, December 6, 2019 5:17 PM
Joined: 10/13/2019
Posts: 106


ReallyScaredSon, I had the same experience with my wife, she would get angry and withdrawn when I tried to get her to see a neurologist. At one point she did not speak with me for an entire month because I was trying to get her to get a diagnosis. An approach that work for me was getting her to get checked for sleep apnea with a neurologist, once there they did cognitive testing. Maybe reaching out to a neurologist and explaining the situation they would be willing to go along with ruse that some of the test were related to the Lyme diagnosis.
eli47
Posted: Saturday, December 7, 2019 8:54 PM
Joined: 3/25/2019
Posts: 31


You have basically just spewed out my life with my mom, except no Lyme disease.  Look into her geniology.  How many women on her side had some form of this?  I believe she is around 4 on the Alzheimers stage list.  Definitely not a Dr.  Just check it out.  It is this stage where loved ones notice changes.  My mother is defiant, too.  Always my very best friend, she told me to F Off the other day.  Im drowning here.  Don't have answers for you but your dad doesn't want to face the truth.  Shoot me your email if you would like to talk further.  I have no one who gets it exactly.  You seem pretty close.
CodyW
Posted: Sunday, December 8, 2019 6:16 AM
Joined: 4/5/2013
Posts: 853


ReallyScaredSon,

Your mother’s odd assortment of symptoms could be caused by Neurosyphilis.  It is rare but often misdiagnosed as FTD or NPH.  A lumbar puncture is needed to diagnose.  The eye problems could be linked to the bacterium as well.

CodyW


60 falcon
Posted: Sunday, December 8, 2019 2:06 PM
Joined: 11/16/2018
Posts: 29


Convincing my wife to see the doctors and going through all the tests was a challenge also.  I kept encouraging her to find a cause of her problems, do we could hopefully treat the problem. Her short term memory was bad enough for family, friends, and her supervisor to notice and comment.  I was able to convince her to mention it to her PCP, and I insisted on going with her.  I told her that we needed to know what was causing her problems because if it was treatable/curable, we needed to figure it out sooner than later.  But I believed it was Alzheimer's.  I didn't talk about that though.  I insisted the PCP test for all the tick bite illnesses, vitamin deficiencies, etc.  Everything came back normal or negative.  PCP believed DWs problems were because of depression.  I convinced DW to go see a neurologist and after all the testing, she also blamed her memory problems on depression.  Me and family knew it wasn't.  After another year's time gone by, I made an appointment with a neuropsychologist who repeated all the memory and psych testing.  I kept telling DW that if there was a cause that could be treated, we needed to know.  I kept trying to give her hope for a treatable condition.  By this time, DW was getting lost at times, couldn't find her way home, and she voluntarily quit driving.  I knew in my heart it was Alzheimer's, but kept encouraging her to keep seeking a diagnosis so we could maybe treat it.  When the neuropsychologist again blamed depression, I was pissed.  How could they not see the problem?  I went back to get PCP and got a referral to a specialist at Mayo.  DW finally got her EOAD diagnosis.  That was two years ago and she was 58.  She was very pissed, and truly depressed for a long time after that.  Even though I knew it was Alzheimer's, hearing the diagnosis was hard.  At least we got the diagnosis.

The key to getting my wife to go to the Dr was convincing her that maybe there was a treatable cause.  


 
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