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MIL with anosagnosia and/or denial
adm1973
Posted: Thursday, July 11, 2019 9:48 PM
Joined: 7/11/2019
Posts: 2


I am new to this site and welcome any advice or thoughts. We have noticed decline with my mother-in-law for several years, and others are coming to us now with their concerns. My husband, his sister, her husband and I all agree with what we are seeing and have tried talking with her - to no avail. We recently learned about anosagnosia and think this might be the issue. She has not been diagnosed with dementia as she refuses to see there are issues and will not seek medical help. She is having difficulty tracking her schedule and finances, she has lost interest/ability in doing things she previously did (cleaning her house, planning/cooking meals, reading, etc.) and we've seen some personality changes. We currently feel she is safe.

I have two main questions:

1) I am feeling extremely stressed and frustrated with her symptoms - repeating things, not tracking her calendar, calling incessantly, forgetting obligations, overstaying her welcome, etc. I am a person who likes to take action and I am frustrated at the lack of action and persistence we are taking as a family. My husband and I have two young children and I'm feeling very angry at my MIL for not admitting the issues and getting help. Now that I believe she has anosagnosia, I am trying to have more empathy. I'm just so angry at the whole situation.

2) At what stage do we begin to insist on things? Moving out of her home (which she no longer maintains or even likes to stay at), going to see a neurologist, etc. My husband has health POA and financial POA.

I sincerely appreciate any advice, thoughts or resources you might be able to provide.


Iris L.
Posted: Friday, July 12, 2019 12:05 AM
Joined: 12/15/2011
Posts: 16092


adm1973 wrote:

 She is having difficulty tracking her schedule and finances, she has lost interest/ability in doing things she previously did (cleaning her house, planning/cooking meals, reading, etc.) and we've seen some personality changes. We currently feel she is safe.

Welcome adm.  I'm glad you already know about anosognosia.  It is a part of the disease.  A person with anosognosia is unaware of her limitations and unaware of safety issues.  So she is NOT safe.  She will put herself in unsafe situations, as you are describing, and she will be unable to react to situations in a safe manner.  Please read the safety section on alz.org.  

 

Due to anosognosia and impaired executive functions, your MIL will be unable to carry out what needs to be done.   YOU (the family) will have to learn what to do and learn work-arounds to get them done.  Learn from the members.  Best wishes.

 

Iris L.


Hatedementia
Posted: Friday, July 12, 2019 12:35 AM
Joined: 3/27/2017
Posts: 5


My goodness, I even hate to respond because I don't have much encouragement.  My mother started out much as you describe.   When things got bad enough that we had to do something... it was pretty tough.   She did not want to live with us because she saw no reason she could not take care of herself.   We then tried to move her to an assisted living that we thought was perfect for her.   She flipped out.  She wanted her car and her independence.   After a lot of heartache, we did move her into another assisted living that was much more care intense than the first which was more independent. That was a tough day.   In the meantime, we had her diagnosed ...  first time because she wouldn't go to doc beforehand.   It was pretty hard and he was the one who told us about anosognia.  Well, she argued and quarreled with us for the next 1 1/2 years basically.   Would do ok when we weren't around but bristled the moment she saw us, and it was pretty bad to be honest.   At about 18 months, we had a downturn and she had some outbursts of anger, aggression and hallucinations.  We ended up at a geriatric psych place that pretty much just medicated her into calm.    She has gone downhill with the Alzheimer's and it's just rough.   It's a rough, rough road.   Suggestions would be to get into a neurology consult asap, start working on a plan of where she is going to live and read, read everything you can get your hands on and in this blog.  Visit a support group and check out Alzheimer's Assn near you.   Every one of these individuals presents differently ...  and it is impossible to know what is coming next.   It is just tough.  A horrible disease.
harshedbuzz
Posted: Friday, July 12, 2019 7:52 AM
Joined: 3/6/2017
Posts: 1642


Hi and welcome. I am glad you found our little clubhouse, but sorry for the reason you have to be here.

You are in better shape than most newbies as your husband already has the necessary paperwork to act on his mom's behalf -and- your in-laws recognize that there is something going on. Is your DH sole POA or is that shared with his sister?

You are also ahead of the game in understanding the concept of anosogonosia; I was well into the diagnostic process with my dad, with whom I never had an easy relationship, before this symptom was explained to me. 

Two things helped me get past my anger. The first was understanding the dementia is not just a disease that robs a person of their short term memory- before that became evident there were changes in dad's personality (from bad to worse) and significant deficits in his executive function skills. He could not parse cause and effect, make a plan to do anything and actually execute it, follow a reasoned argument or learn new information or routines. The other thing that helped me be more empathetic and compassionate was reading this PDF-

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

There is no point being angry with your MIL for her current state; she is ill-equipped to take the steps to get a diagnosis which means the person she chose to act for her should she be unable to have an obligation to take the next steps in her care. That would be your husband. I can totally appreciate that it is hard to accept that mom might have dementia and take the steps that seem to rob her of her independence, but he needs to act. 

Since you have the POA in place, I would focus on getting a medical evaluation. There are a number of medical conditions that mimic dementia that are treatable and even reversible. My dad had mixed dementia; one of those was caused by a vitamin deficiency related to alcohol abuse. He was given IV supplementation and recovered a lot of cognition so long as he was abstinent before the Alzheimer's symptoms worsened. It would be a tragedy if your MIL (and the rest of her family) were suffering because a hormone or B12 level were low. 

Many families need to create a subterfuge to get their LO into a doctor's office. One scenario that works is to contact the doctor's office ahead of time with a list of your concerns and observed behaviors via email. Bring a copy to the appointment and hand it to the desk/med tech discretely before she sees the doctor. You might get her in by telling her the insurance requires an office visit or she needs to see the doctor in order to get a prescription refilled. A dear friend got her mom to the PCP for an evaluation by claiming she herself was sick and needed her mom to come with her. Other families have to wait for a shoe to drop in the form of a hospitalization for something else or even behavior that requires transport to an ER and then onto a geriatric psychiatric admission. 

Once you have a diagnosis and some idea of where she is in the disease progression, you can decide on next steps in terms of taking over finances and deciding on living arrangements. One of the best ways to get a sense of safety is to spend several days at her house 24/7 and observing her. The dear friend I mentioned previously thought she had a good sense of how her mom was doing: mom lived around the corner and spent most afternoons and evenings with my friend. But when she decided to sell both their houses and move into a larger one with an in-law suite, she moved mom over to her house while she staged mom's little townhouse for sale. She was not just horrified not just at the chaos and disorder in the cabinets, closets and entire second floor, she was gobsmacked by her mom's behavior overnight. 

It's really hard to get a sense of how safe an individual is at home alone as symptoms and IADLs are always heading lower. My mother was hospitalized a few months before dad was finally diagnosed. I flew down to Florida for a visit and was horrified at how unsafe the situation was. In the space of 20 minutes he crossed polarity attempting to jump a battery, put a fork in a toaster and cook bacon stove-top on a couple sheets of paper towel. 

Good luck.
Victoria2020
Posted: Friday, July 12, 2019 8:18 AM
Joined: 9/21/2017
Posts: 838


Hi adm1973

It is very hard to leave our rational world and go where they are. But the sooner you do the easier it will be on you.

They will sound the same, it isn’t like their intelligence or sentence structure leaves them (at first). You can have a great convo and then they ask if you say saw dead 25 years  now Uncle Fred lately . A happy look of expectation on their face.

You won’t be able to organize her, set up systems, write notes, leave recordings , try technology back ups — those steps require that they connect on the other end to a functioning brain. They aren’t a lazy teen or indifferent employee that needs shaping up.

You say you feel she is “safe” now but she can’t handle her finances. Has your husband taken that over? If she got a phone call could she fall for a scammer?

If there was a pipe leak would she just crawl into bed “warm and dry here “ and then the next morning complain her feet are cold and wet? And not get why?

 If a kitchen towel is used to put out a frying pan fire , would she leave the towel embers burning on the counter and sit and eat .

She can’t see an issue, think of the right response choices , follow through. Gone.

As you are learning, she won’t “get it.” You and your husband have to supply her rational thinking for the rest of her life. It isn’t laziness, it isn’t stupidity , it’s this disease.

Some say before a diagnosis try to buy long term care insurance, but you know , people have noticed her problems. Talk to her elder care lawyer about the legality of trying that, and what you need to trigger the documents in your husbands name etc.

Get her in to the doctor with a fib- summer flu booster, starting early this year whatever.

You have young children and your husband hasn’t grabbed the wheel yet, once he does get in place legally (documents triggered)- you can hire a prof case manager to handle her oversight — care at home or in a home.  That will save you nagging him to do stuff that he may not be cut out to do.

Again, from what you’ve said, she’s not safe now. Please see the lawyer and get a diagnosis.

This disease reminds of a few horrible nights in college where we had to walk a very drunk classmate to their dorm, they babbled, made no sense, had brilliantly stupid ideas, wouldn’t walk in the right direction , in danger of falling, no memory of what they said or  just committed to a second ago.  The weight of our responsibly for them was frustrating as they fought us every step.

But dawn and a hangover “cured” them.  Burden lifted. We have no cure. Permanent “burden.”

Hang around and use this as a place to vent.
 



MinutebyMinute
Posted: Friday, July 12, 2019 11:08 AM
Joined: 6/11/2019
Posts: 190


harshedbuzz wrote:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

I am reading this now! SO validating! Really breaks it down. Thank you for sharing!!!

Army_Vet60
Posted: Friday, July 12, 2019 11:16 AM
Joined: 6/21/2019
Posts: 367


Does your mother's health care insurance include emergency house calls if she needs it?

Medicare might even cover that....

If so, you might be able to have a doctor come to her and get you a formal diagnosis.

Several years after my wife was diagnosed, her insurance included House Calls.


adm1973
Posted: Friday, July 12, 2019 2:24 PM
Joined: 7/11/2019
Posts: 2


Thank you to each of you for taking time to respond with support and information. I will discuss safety with my husband and his sister. To answer a few questions, my SIL does also have POA as well. Thankfully, this was set up a few years ago. MIL lives several hours away and about halfway between our families. SIL has encouraged MIL to move closer to them but she isn't interested. MIL does have LTC - thankfully. I previously worked in the insurance industry and did some checking on this - she took it out in 2014 when more grandkids were born. Max benefit amount isn't very high, but it will at least provide a little relief when it's time.

SIL and her husband (both bright physicians - I only say this to indicate they are well versed with medical issues) took her to a geriatric physician 6 months ago. Some memory issues were discovered and some recommendations were made that really haven't been followed (ex. no Benadryl at night to sleep, less wine - she loses track. Prior to this appointment, she was extremely anxious, refused to make the trip to the doctor, etc. 

* How/when/how far do we push a neurology appointment? We do not feel comfortable "tricking" her into going. Again, anosagnosia - and this whole process - is new to us, so please advise of strategies and timing. Do we take her now? I have this feeling that something "very bad" is going to happen (maybe even have to happen) before we take action. 

Again, thank you. We are supposed to go to her place this weekend and she's called my husband and me five or six times in the past 24 hours to clarify the plans. It's just so exhausting, especially being the parent of two children under age 5.


CessnaDM
Posted: Friday, July 12, 2019 3:21 PM
Joined: 5/30/2016
Posts: 568


Welcome to this website. There are wonderful people and advice that you will have to refer to on this journey Because your husband has POA, he can contact the PCP and let him know what is going on with your MIL. He could decide a neurology visit is necessary. Please do not argue, debate or try to reason with her. Dementia causes the person with it not address or be aware of their impairment, which makes safety early on an BIG issue. Read Understanding the Dementia Experience. It will take you step by step through what is happening. Keep in mind that the PWD sees the world differently than how it really is. Patience, love and understanding is essential. Best wishes and good luck to you.
VKB
Posted: Friday, July 12, 2019 3:27 PM
Joined: 12/4/2011
Posts: 3465


Whenever she becomes confused so she "might not understand" the stove or other dangerous stuff, you and your husband will have to insist things change.  I would talk to her family doctor or lawyer to figure out what your medical and legal options are.  And have faith and pray!  God is faithful.  Peace always, Veronica
Victoria2020
Posted: Friday, July 12, 2019 9:08 PM
Joined: 9/21/2017
Posts: 838


adm1973 wrote:
I have this feeling that something "very bad" is going to happen (maybe even have to happen) before we take action. 

 

 

If you are waiting for your MIL to get it, she won't.

 If you want to minimize the financial and maybe physical injury *you* won't.

We call them "fibs" here but to get the right care treatment sometimes a "fib" like telling a gf her dotted swiss wedding dress idea is "rad retro" when she looks like Little Debbie without the cupcake empire is needed.

There is no point in arguing or debating a PWD. You work your way to the goals for their safety you (meaning your family) have to develop on your own.


lizziepooh
Posted: Friday, July 12, 2019 10:31 PM
Joined: 5/2/2019
Posts: 127



I want to first speak to your comment about not feeling comfortable tricking your MIL. I get it. I was the exact same way. I never thought I would be comfortable about something like that but now am I not only comfortable about it, I understand it is one of the best survival skills there is for this disease. 

 
If you can figure out a way to trick your loved one and have the end result be that they are not only safe but satisfied, you have just solved most of the issues and frustrations that come with this disease, especially with someone that cannot admit anything is wrong with their thinking.
 

 

And I would like to ask if your SIL has kids and if so, what age are they? I ask because if your SIL does not have kids, then she should probably be the lead. If she does have kids too, you guys will need to figure out what makes sense for you all.
 

 

Even though your husband and SIL are both doctors, do not assume they will make the most rational decisions. This is their mom after all and even when families are healthy, they come with a lot of complications...emotionally. Lol!
 

 

I kindly suggest you influence their decision that you guys are not the day to day decision makers for mom’s care. You have little ones under five; it is not fair to them if your focus is elsewhere and eventually the focus needed on MIL will just become forever all consuming.

 

Tell your husband and SIL that they need to make decisions on her worst day, not her best. Great piece of advice from this place. The other great piece of advice is that to truly assess the situation with mom, they should stay with her 24/7 for a length of time. I will add to that advice and suggest you make sure mail comes on those days and that there are bills to pay and reconcile. It is eye opening to see our loved ones struggle with the basic understanding of these things (junk mail, real mail, bills, information only) and scares the heck out of us (or at least me).

 

Sorry you have to deal with this. It just freaking sucks...for everyone.

 


harshedbuzz
Posted: Saturday, July 13, 2019 8:14 AM
Joined: 3/6/2017
Posts: 1642


This isn't easy for any of us at first. Nobody wants to lie to someone we love and who has put their trust in us. But over time, those who have gone before have learned, it's not about our comfort, it's about our LO's physical and emotional security.

It is up to the people who she trusted enough to name as POAs say whatever she needs to hear and do whatever needs to be done to allow the next steps to be taken.
Zurie
Posted: Saturday, July 13, 2019 10:30 AM
Joined: 7/12/2019
Posts: 1


Hi, I am also new to this wonderful world of dementia. Reading your reply to adm1973 has helped me find some resolve to do what I need to do ... I just hope I do the right thing. My LO is bi-polar and has FTD. It seems like a double whammy sometimes. I will probably be reading and re-reading some of these posts!
JAFdaughter
Posted: Tuesday, July 16, 2019 10:43 AM
Joined: 4/16/2019
Posts: 13



You won’t be able to organize her, set up systems, write notes, leave recordings , try technology back ups — those steps require that they connect on the other end to a functioning brain. They aren’t a lazy teen or indifferent employee that needs shaping up.
 
This is been a really difficult thing for me to accept. My mom is living on her own with some help. I think the problem solvers in all of us want these things to work and I'm finally realizing they don't. My mom is early stages and sounds deceptively capable. But with some things she's just not. 


 
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