Just getting started down the diagnostic path for Mom

MandaG

Hello! I'm very new to this reality, and am looking for an understanding community. Apologies for the length here, it's my first time opening this up to a discussion board!
My mom has had symptoms for several years, and finally agreed to a memory test and initial visit with a neurology specialist (appt was yesterday) - she failed the memory testing and will need additional testing to confirm a final diagnosis/typing.
MRI - to confirm no tumors or other physical trauma causing her issues
EEG - to confirm if small seizures are occurring
Neuropsychology - to dive deeper into memory and mental health - we feel that this is very important because we suspect undiagnosed mental disorder in addition to neurodegeneration

Mom (67yo) has had memory issues for years, including confabulations, where her mind creates events and conversations that never took place to force things to make sense to her brain. Honestly, for years we just thought she was a bit of a fabulist and liked to stir up drama, and her actions have caused some significant emotional turmoil in our family. From her doctor we are learning that it can actually be a symptom of different types of neurodegenerative disease.
As recently as this morning she created a conversation with her doctor that never took place, which I know because I was with her the entire appointment, where he expressed being upset at us (brother and myself) for giving examples of her decline (which he had specifically asked us for). I know this is her brain's way of coping with her frustration at us disclosing "private" events, by putting that frustration on someone else and pointing it at us.
I have concerns about our ability to properly help her navigate life after a full diagnosis because of her resistance to accepting the changes happening to her, and the hurt that her previous dramatizations have caused over the years. On one hand, she accepts that her brain may be creating things, but when confronted with facts she shuts down and refuses to acknowledge that her understanding might be impaired.
As a biologist and from a logic perspective, I understand a decent amount of what is happening to her brain; as a daughter, it is really difficult to see her get frustrated by something and attack the people trying to help her. She has accused family members of stealing money from her, accused people of breaking into her home and moving things, had several falls resulting in hospital stays, and created whole human beings that she "got fired" due to bad customer service (when she got confused about something). She creates conversations that never took place, but she is totally convinced that they did. She asks for help with things like appointments and finances, but get angry and possessive when I try to help her manage. I think she is functional enough to still be living on her own, but I don't think that will last for much longer. I'm looking forward to full diagnoses so that I can build out a timeline and dive deeper into research.

In the meantime - Are there additional resources that we should look into to help us better understand her behavior? Any advice on how to separate the business side of caregiving from the emotional side?

SusanB-dil

Hi MandaG - welcome to 'here', but sorry for the reason.

It is difficult to see our LO on this path. Even though we 'understand' what is happening, it doesn't make it easier. What you've described is rather typical - the confabulations, the accusations, and the denial. She may experience anosognosia - it is not denial, but rather 'her reality that she's fine'. If she does realize what is happening, she may not want to, which is understandable, but may be why she 'shuts down'.

As far as business - is paperwork in order? - DPOA and HIPPA medical accesses important. If not, a CLEC (elder lawyer) can help with that.

Emotional - you've found the right place. You can check the ALZConnected Resources to the right of this page, as well as TamCummings videos and information.

Emily 123

Hi Manda,

A lot of what you describe may be caused by the disease. Short term memory and the ability to retain information fail fairly early in Alzheimer's, while some of the other dementias present somewhat differently. While short term memory loss may be the tip of the iceberg in terms of visible symptoms, other losses are occurring based on which lobe of the brain the disease is affecting. It will cause loss of executive ability, reasoning, judgement and insight.

It helps to realise that the disease creates an alternative reality for your loved one that is very real to them. They know what they know, and you will not be able to convince them otherwise. You may want to start avoiding discussing the disease with her, because she may lack the capacity to see it, and avoid any discussions that seem to trigger disagreements or agitation, because that may exacerbate her behaviors.

We're social creatures, and people with the disease will continue to try to keep up in conversations, trying to fill in the gaps of their memory by using assumptions and accessing what memories they can. For instance, if your mother took showers every day in the past she may be assuming she's taken one today, though you might see she clearly hasn't. She has no recall of her day, so assumes she's followed her routines. Unfortunately the disease not only prevents retention of current information, but it also starts to affect accessing older memories. Memory pathways are obstructed and alternative pathways eventually fail as well, leaving the person to pick up whatever they can access and tie it together without the capacity to sense that they're running into difficulties (anosognosia). The person with dementia very much needs routine to get through their day. Change will upset them, because they have a reduced ability to process and react to information.

A very hard part of this is to pivot from trying to make your mom understand that she has a disease and having her plan for her future (she can't, any longer) to creating an environment where decision making for her health, home, and finances are taken off her plate in a way that keeps her calm. Basically meeting her in her reality. Easy, right? LOL. The parent/child dynamic is a challenge. It's ok to agree with whatever she says and let her think she's still managing just fine, but in the background, provide support for her by working to keep her safe. You may need to deploy 'fiblets' to get things done. ( Just do a word search 🙂)

Most families get involved around stage 4 (on the Tam Cummings DBAT stage checklist). Your mom may not have Alzheimers, but if she does she will progress through the stages listed. She may not tick every box in a stage. Things to think about are if your mom's taking her meds correctly or does she need help, and if she's eating. In stage 4 you may see a loss of executive ability, apathy, and a change in perceiving hunger, so the person may be missing meals.

______________________________________________________________________________-

These were very helpful for me:

Understanding the Dementia Experience: 

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Tam Cummings-Stages: https://www.youtube.com/watch?v=tansVVDM0fE

Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY

Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE

Dementia/Driving: https://www.youtube.com/watch?v=B3x5nQ7oB98

Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI

Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww

Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ

Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient:  https://www.youtube.com/watch?v=EOCZInnLQd0

Teepa Bathing tips:  https://www.youtube.com/watch?v=iKT9YIVPREE

Vicky Bathing Tips: https://www.youtube.com/watch?v=iu-O2KtgMWY

OT discusses changes: https://www.youtube.com/watch?v=zkKi9_-tYbQ

MC or Nsg home: https://www.youtube.com/watch?v=Cetf0Q566Hc

Adv dir. https://www.youtube.com/watch?v=ii73c8k63Ag

Good luck!

JDancer

Has she had any bloodwork?

M1

Welcome to the forum. Educate yourself about anosognosia-she is unlikely to be able to appreciate her deficits, and trying to convince her will only create resentment and anger. Don't expect her to have insight (that was a very hard lesson for me). From the sound of it, i think you are right to prepare for her needing 24/7 supervision sooner rather than later, she may well already need it. You are definitely going to need power of attorney for finances and healthcare, and you need to be prepared to change her living situation without her consent. Safety needs to drive the decision making, just as it does with a toddler.

Antipsychotic medications can help with the delusions and paranoia,and may help with her anger at you as well to some extent.

You have come to a good place for practical advice and emotional support. None of this is easy.

MandaG

https://alzconnected.org/discussion/comment/190004#Comment_190004

Thank you so much! I will look into the Tam Cummings resources. I do have POA, both healthcare and financial, that we did a couple of years ago after my dad passed away. I'll be doing a deep dive into her financials in the next week or so, and am still thinking about going ahead with an attorney to support since she does have some paranoia and because I live two hours away.

MandaG

https://alzconnected.org/discussion/comment/190009#Comment_190009

Thank you for all of these resources!! The more I learn about her alternate reality the more I understand why she gets so combative about those things. We're connecting with county services and the VA to see about some regular support/aid and attendance to check on her. She is having major *unfounded paranoia about my brother (who lives 10 minutes away from her) being her main local resource.

*Unfounded to everyone outside of her reality. 🤷‍♀️

MandaG

https://alzconnected.org/discussion/comment/190017#Comment_190017

Yes, doc said bloodwork was fine, but I'd be curious to get a deeper dive into her B1 uptake based specifically what I've learned about Wernicke-Korsakoff syndrome - a lot of those symptoms line up and while she is not and never has been an alcoholic, she has had digestive issues and thyroid problems her whole life, as well as TBI when she was younger.

Perils of being a researcher when a LO is early diagnosis. 😅 I'll try to rein it in.

MandaG

https://alzconnected.org/discussion/comment/190022#Comment_190022

Yes, for sure I'll dive deeper on navigating anosognosia - she has moments of acceptance and then backtracks very quickly on things. I've got POA on healthcare and financials, and am doing research into full guardianship and an attorney for her when it becomes necessary. Right now she's vacillating between being paranoid about us "taking her house" and excited to talk about community living arrangements. (We have not threatened to move her, just light discussions about "when the time comes" -which I am stopping as of now to reduce her anxiety)

Interesting about the anti-psychotics - the paranoia is a very disturbing part of this progression. I NEED my brother to be able to pick her up for appointments (he lives 10 minutes from her, I am two hours away), but she keeps creating scenarios where he "would likely" wrong her in some way. I've told him to make sure to take his wife or his adult son with him as a buffer.

Emily 123

https://alzconnected.org/discussion/comment/190086#Comment_190086

Jumping in to say that my mom was filling her scripts online until she ran out, she hadn’t kept her doctor’s appointment, and had changed providers. We think she’d been off her levothyroxine for about 6 months. She had started thinking her daily multivitamin was her levothyroxine…poor Mom, she was an absolute live wire when we realised the wheels had come off the bus.

mommyandme (m&m)

Do you need guardianship if you have POAs? Maybe a lawyer can help navigate if that’s really necessary. We had my mothers POAs and never got a legal guardianship, all went well for her care.

MandaG

https://alzconnected.org/discussion/comment/190102#Comment_190102

Ugh, that is awful! Mom's thyroid has always been a nightmare for her to level out, and I recently pushed her Primary Care doc to check her prescriptions at the request of the pharmacist - she had multiple prescriptions from different hospital systems for synthroid, statins, and a couple of others - she was taking them all.

MandaG

https://alzconnected.org/discussion/comment/190114#Comment_190114

Good point - Probably not, these are the things I'm trying to learn 😅

JDancer

If she's resisting help guardianship might be needed.

Smilescountry

The researching stage is so hard! I finally decided to just learn the basics and let the doctors tell me the specifics. After all, that is what they are paid for. 😉 I had so many diagnoses researched before my dad went to the neurologist, and I found out that, yes, Dad had a form of dementia, but, no, it wasn't the kind that I thought. Both my parents are going through cognitive impairments at the same time, and that has been really hard. They appointed me POA/HCR long ago, but taking over was a bit of a struggle. I had to sneak a peak at their records to learn that I was, indeed, still POA because Mom had told me that they removed my name when I let her doctor know about a fall that she had in Florida before they came home. (This was in the early stages.) We got my mother's will updated to get my sisters added as POAs, too. (A good decision in our situation) However, Dad was not competent to agree to changes, so I have to make all legal and health care decisions for him. Selling the house and car, getting them both into a nice facility, taking over finances, has all been difficult, but a year later it is working out. I would not argue with your mother about anything. Keeping her safe and keeping things as pleasant as possible for her would be a good goal, in my opinion. Both my parents are in an assisted living facility that also has memory care. My sisters and I decided from the start that we would not bring them into our homes. Our parents can pay for the assisted living. Also, we call every day, see them several times a week, and take them to appointments. As wonderful as our parents are, there are some family dynamics that would make living with our parents 24/7 a bad situation. A trick that I have discovered when dealing with doctors' appointments is to open patient portals for as many doctors as possible that a parent has. Then, a few days before an appointment, send a brief list of concerns to be discussed at the appointment. I have found that it makes the appointments go smoother, and the doctors who have experience with geriatric patients love the organization that a note gives and will find a way to address problems without the patient becoming agitated. The family doctor, neurologist, and I know each other well enough that we can talk "in code" and give visual signals out of the range of vision of my parents. The "cheat sheet" that I prepare ahead of time helps greatly with this.