In crisis mode with Mom; nothing has been done; how to make the necessary happen?

ReallyScaredSon

I posted a couple times prior: "Mom likely has dementia but in denial; Dad paralyzed into inaction" on Jan 27, 2021; and "Suspected demensia in Mom, but gets mean/angry if discussed; Lyme disease connection?" on Dec 4, 2019.

To try and keep this terse: for at least five years, my 67-year old Mom has been showing signs of cognitive decline.  I became aware of this in late 2019, and my Dad said it's been happening for many years prior.  Her short-term memory is all but gone, she has false memories, struggles to use any kind of technology (phone, TV remote, computer, etc).

I am 42, my parents' only child, married with young kids, and live about three hours from them.  I have spent the last two years trying to convince my Dad to form a plan, get a screening, discuss issues with a doctor - all the things need to be done.  Nothing has been done.  No doctor is aware of her cognitive issues; there are no POAs in place; I am not on any HIPAA forms.  No one, not even my Dad, dares to even remotely discuss the subject with her.  We are all tip-toeing on eggshells around the elephant in the room.

The situation has exploded in the last couple weeks; it feels like crisis mode to me.  She appears to have gotten dramatically worse. She has hallucinations or delusions (men in her house, men dancing in their yard, people hiding her stuff); she has locked herself out in the cold; she called her father (10+ years estranged) claiming she was scared of my Dad; she attempted to walk into town when she couldn't start her car (10+ miles, they live in the country), etc... My parents are fighting constantly, she keeps kicking him out of the house (they had an almost-fairytale marriage prior to this).  One of my Mom's sister lives fairly close, and on a few occasions, has helped talk my Mom down when she's having a particularly bad "episode".  My aunt has taken 4am phone calls when my Mom wakes up scared of my dad.  My aunt is one of the sweetest people the world has known, and would do anything for her sister; but she's still working and in a position that she can't just "call in" on a moment's notice.  Besides, I don't think it's fair to rely on her when we know there are steps that should be taken.

I talked to an elder care management professional today, who said that rapid changes in dementia are atypical, and there may be some underlying condition, in particular a UTI.  As a UTI is easily diagnosed and treated, I relayed this to my Dad.  He won't even discuss the potential for UTI with my Mom!

In short, I feel I have a good idea of what needs to be done:  Her primary care physician needs to evaluate her for "easy" things like UTI; he needs to be made aware of her overall cognitive decline, and either make a diagnosis or refer her to a specialist.  I feel the doctors will drive the overall care process.  Likewise, we need POAs in place; financial planning for various forms of care (in-home, long-term facility).  But as I said above, *none* of this has happened, and even with the current situation, it looks like the "wait and see" approach will continue.

So my question is: is there anything I can do?  Even if she goes to a doctor and has an honest conversation about all this (unlikely, given how things have gone thus far), and he refers her to a specialist, how can I make sure she actually goes to the specialist?  In other words, without POA/HIPAA to back me up, what can I actually do that is helpful and meaningful?  I feel terrible for the situation my Dad is in, but I feel it's really on him to get things moving.

jfkoc

What can you do? Hard to say but I suggest

1. Rule out the possible UTI.

2. Select ALZ.com at the top of this page ...read andunderstand the diagnosis protocol.

3. Get all the information you have to your mother's Dr. He can receive but can not share w/o the HIPAA

4. Make a last ditch effort for a DPOA before it is too late.

5. Listen to your father...acknowledge his position, fears etc.

6. Figure out the most successful approach...I think about the success rate is determined by the approach.

7. Think "calm".

Please keep us updated when you can.

jordansfca

Is there someone else that can speak to your father? Another relative or friend?

I would suggest calling your mother's doctor and telling them about your concerns. Maybe they can intervene. You are waiting for your father to do something - it doesn't sound like he is willing to. Maybe getting prompted by someone other than you will help.

loveskitties

I totally understand your situation, as mine though reversed (dad with dementia, mother caregiver).  My parents are in their 90's.

Fortunately we have DPOA and health POA's in effect, however my mother is first on all.  She refuses to put anyone else on HIPPA forms, so always in the dark on where things stand medically.

With my mother is it always "we are not there yet"...meaning it isn't that bad, or she will make a decision after the first of the year...how long after the first or of what year is the question.

I, my grown son and daughter have all tried to get her to understand the need for making a plan and executing it.  We have provided all sorts of info regarding in-home help and age-in facilities.  She has had a deposit at one for over 9 months, but refuses to pull the trigger.  It doesn't help that they have lived in their home over 60 years and have "stuff" which will have to be left behind.

Now to your question as to what you do about the situation.  If she has a PCP, contact them either in writing or email regarding your concerns about her and the situation.  Perhaps suggesting they call and say it is time for a wellness physical.  If your mother refuses and father will not see it done, your hands are tied.

Have a heart-to-heart conversation with your father.  Let him know that while there is no cure, there is help to be had from the right physician.  You don't mention how your father's health is.  Perhaps, telling him that if something happens to him...a hospitalization or such that there will be no one there or able to to care for your mother without the appropriate authorizations.  Maybe that will prompt him  to take some action.

As my son reminds me...there is nothing we can do except wait for the train wreck that is coming.

If you find a solution, please share it here.  

Tfreedz

So sorry you are dealing with this very stressful situation! I’m not sure why your Dad is not doing more, if he is in denial or trying to avoid her wrath? 

My mom was in serious denial, I found out later it was anosognosia, about her cognitive decline. She refused all medical appointments and even avoided family. It wasn’t until she was near death with pneumonia that I could intervene. She was almost incoherent but still refused to go to the doctor/hospital. Fortunately, I was able to explain this to her doctor over the phone and her doctor ordered a mental hygiene arrest on the basis that my mother wasn’t making sound medical decisions at the time. I was told to call 911, explain she was ill and needed to go to the hospital and that her doctor ordered a MHA. The MHA means she will be taken to the hospital against her will, not that she is arrested. Once she was there they were able to rule out UTI, determine pneumonia and did finally diagnose dementia. Social worker worked with us to get POA, HIPPA waivers, medical proxy. This took 19 days, my mom was so against anything the doctors and social workers tried. They would not release her back home and recommend her into a memory care facility. Unfortunately, I brought her home with me thinking I could care for her. Looking back, I wish I would’ve placed her but we are working on that now 5 months later. 

I suggest you try to get her to the doctor, if not call the doctor and describe all that you have here and ask for a mental hygiene arrest so she can get to a hospital and get tested for UTI among other things. Hopefully your father will go along with it and she can get some treatment.

Keep us posted please.

Iris L.

ReallyScaredSon wrote:

I posted a couple times prior: "Mom likely has dementia but in denial; Dad paralyzed into inaction" on Jan 27, 2021; 

Your mom has anosognosia which is distinct from denial.  She is unaware of her limitations.  If you confront her with reality, she will become upset.  You have to learn work-arounds.

  No one, not even my Dad, dares to even remotely discuss the subject with her.  We are all tip-toeing on eggshells around the elephant in the room.

Avoid discussing dementia or what to do with her.  Learn the work-arounds.  Dad has to understand that this is not a failing on his part, but a new reality.

The situation has exploded in the last couple weeks; it feels like crisis mode to me.  She appears to have gotten dramatically worse. She has hallucinations or delusions (men in her house, men dancing in their yard, people hiding her stuff); she has locked herself out in the cold; she called her father (10+ years estranged) claiming she was scared of my Dad; she attempted to walk into town when she couldn't start her car (10+ miles, they live in the country), etc... My parents are fighting constantly, she keeps kicking him out of the house (they had an almost-fairytale marriage prior to this).  One of my Mom's sister lives fairly close, and on a few occasions, has helped talk my Mom down when she's having a particularly bad "episode".  My aunt has taken 4am phone calls when my Mom wakes up scared of my dad.  My aunt is one of the sweetest people the world has known, and would do anything for her sister; but she's still working and in a position that she can't just "call in" on a moment's notice.  Besides, I don't think it's fair to rely on her when we know there are steps that should be taken.

There are steps to take for hallucinations and delusions.  She doesn't appear to recognize your dad as her husband--a strange man is in the house with her and she is scared.  This could be due to a UTI or normal progression.  Limit or avoid TV shows and the news.

He won't even discuss the potential for UTI with my Mom!

Do not discuss with her.

In 

So my question is: is there anything I can do?  Even if she goes to a doctor and has an honest conversation about all this (unlikely, given how things have gone thus far),

Iris L.

ReallyScaredSon wrote:

I posted a couple times prior: "Mom likely has dementia but in denial; Dad paralyzed into inaction" on Jan 27, 2021; 

  No one, not even my Dad, dares to even remotely discuss the subject with her.  We are all tip-toeing on eggshells around the elephant in the room.

Your mom has anosognosia which is distinct from denial. If you confront her with reality, she will resist and get upset.  I get the impression you and dad are waiting for Mom to agree, she will not.  You and dad will have to learn the work-arounds from the members and go forth.  Do not discuss dementia or what you are going to do.  She will not have an "honest conversation" about dementia.

Does dad have some decline himself, or is he in poor health?  What needs to be done may be too much for him.  Maybe they need to move into town into a senior facility.

Iris L.

Emily 123

As always, there's excellent advice from the other posters.

She's beyond the point of being able to use logic and reasoning or have insight into what's happening.  Her actions make sense to her, however.  Nothing about her condition, or what you see, or plans for doctor's visits, should be discussed with her--she won't believe you or your dad, and you'll only precipitate a negative emotional response from her. 

 Would he be open to looking around here on the caregiver & spouse forum, or and at some of the resources, at least to see he isn't alone?  There are others who have kept their loved one at home throughout and their experiences might have some value for him.   My thoughts are that either 1). Your dad feels like acknowledging the issue will be disloyal to your mom and/or end up with her being placed, and he doesn't want that for her, or 2) He's so overwhelmed by the 24/7 caregiving that he can't initiate anything.  What does your aunt think? 

I imagine you've read this, has your dad or your aunt?  Maybe it would help...http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

harshedbuzz

RSS-

Your story sounds freakishly like what I went through with my own parents. I noted mood and personality changes in dad as early as 2005 and significant lapses/confabulations in memory by 2008. Dad wasn't diagnosed until 2016.

Initially, I think dad knew on some level he was experiencing a cognitive shift and purposely avoided the very person (me) who would not only recognize that but be able to take the steps to rob him of his autonomy. I ignored his shenanigans because I needed to make sure mom was OK and also to convince her to get him evaluated. This took many years and nearly cost mom her own life as he was unable to advocate for her when she became dangerously ill- mom was in liver failure- she was the color of a school bus and dad was blathering nonsense about divorce since she was lazy and wouldn't cook. I had no idea what was going on until the hospital treating her called me as an emergency contact when they figured out dad wasn't all there. 

In the days when mom was blowing me off, I crafted a Plan B for that day when the feces hit the fan. When they did, I had a shovel-ready list of resources near me to use to get the diagnosis done and the legal paperwork in order. Dad got worse, he slipped into a psychotic episode, trashed the house and was injured when mom left him alone a couple of days to attend her sister's funeral. I activated the plan having mom drive dad 3 hours to the ER affiliated with the memory center that is best regarded in my metro area and took her to the CELA I'd already vetted to complete the paperwork needed. The first thing I did was to create a medical health directive/POA for mom that named me as her agent- we did that with dad already in the hospital- we saw the CELA a week later while dad was in rehab.

I would encourage you to do 2 things.

The first would be a last ditch CTJ with your dad. Share your concerns about mom needing to be evaluated at least to rule out conditions that mimic dementia but that are treatable. (Spoiler alert, dad had mixed dementia and one of those was an eminently treatable vitamin deficiency. Had that been identified and treated they both would likely have had a better quality of life for quite some time before his Alzheimer's progressed). Ask him what his preferences would be should he be unable to care for her because of illness, disability or his own death. I bullied my mom into compliance by sharing that I would put dad in the first place that would accept him before her body reached room temperature. 

I would also share concerns with the PCP. 

I would draft a robust Plan B. 

I would nail down a CELA to talk about legal paperwork necessary to act of his and her behalf as well as Medicaid planning unless they are independently wealthy that would allow dad to be a community spouse in his home. In some states Medicaid will only pay for a SNF, so that might have some bearing on next steps for dad. So often money/spouse lifestyle informs choices made by the caregiver spouse. Understanding Medicaid won't take his house might help. I would also explore guardianship if you have to act fast because this trends into neglect or dad can't provide care.

I would find a neurologist or memory center for a full workup. Ideally, you will want access to a geriatric psychiatrist to manage psychoactive meds that might help relieve your mom of the hallucinations that are upsetting her. 

I would tour MCF (if they are an option for your family) as well as SNFs needed after a hospitalization or if mom needs a Medicaid bed. I would do the search near you unless your community is underserved. By the point a LO needs care, being near you is critical. I moved my parents near me for that reason. I can't be the only person on the flight to Orlando in a black dress. 

I don't know that the care manager is correct about fast progression. Dad progressed very quickly with psychosis. My aunt who had VD progressed glacially over all, but the process was definitely steps and plateaus rather than a steady decline. UTIs can cause dramatic- and typically reversible- symptoms. They can also transition to sepsis and kill people.

Good luck as you move forward.

HB

ReallyScaredSon

Thank you everyone for your help and suggestions!  I truly appreciate it.  I have skimmed over them, I will go back and close-read.  I wanted to add a little more color to the situation, as I didn't want to make my initial post too long.

A fundamental problem is that there is no consistent and reliable communication between my dad and I.  He won't discuss anything remotely related to medical issues on the phone when he's at home with Mom.  He has a "private" email my Mom does not know about, but says my Mom regularly sneaks up on him to see what he's doing.  So, if he reads an email, it can't be more than a couple paragraphs, or he simply won't read it.  And his replies are a sentence or two at best, which usually create more questions and confusion.

So it goes with sending him links and other info: he simply won't read it when he's at home.  He's now afraid to leave home except for necessities (e.g. groceries, household goods).  So, if I'm lucky, I get one 30-40 minute call per week, where we can try to discuss these things.  I think it's self-evident that reliable and effective communication is absolutely critical to managing a situation like this.  And I just don't know how to make that happen.

His health is reasonable, though he's had a bad head cold the last couple weeks.  I truly believe he is unable to recover effectively, because of inconsistent sleep and overwhelming stress.  I've always known and admired my Dad as an incredibly rational, thoughtful, logical person.  But in this situation, I believe he is depressed, and it's taking all his mental bandwidth just to keep his head above water.

I tried to talk to him about the UTI.  He said, his mom, who lives in an assisted living community, and does have dementia, once had a UTI and it didn't affect her dementia at all.  So therefore, a UTI would have the same effect on my mom.  He did get a chance to call the Alz Assn hotline, and the person with whom he spoke said it sounds like my Mom's recent behavior is part of the natural progression.  So more "evidence" that a UTI isn't a concern.  Clearly this is not rational thinking; nothing against the AA person, but they are not a doctor, have not seen my Mom, and my Mom doesn't even have a diagnosis for her condition.  Likewise, my Grandma's condition may be completely different from my Mom's, so her experience isn't necessarily applicable.

So I came at it from this angle: fine, maybe the UTI isn't a factor, but it's such a trivial test, so why not do it?  What's the harm?  He said there was a previous doctor visit (years ago), where the doc suggested a UTI test, and my mom fought it tooth and nail.  She had a 35-year career as a medical technician, so she feels incredibly insulted that someone would even suggest she might have a UTI that she doesn't know about.

My mom does have an appointment with her PCP next Friday, and my Dad assured me that he will do everything to make the doctor aware of these important issues.  He said that there is a huge chance she might not even want to go to the doctor.  He asks me, what can he do in that case?  He feels in situations like this, he's tried every possible approach to do convince her to do something, and it just won't happen.  He feels his only option is to physically subdue/restrain her and force her into the doctor.  That's a line he's not willing to cross (thankfully!).

With our woeful lack of communication, I can't be sure, but if I give my dad the benefit of the doubt that he's tried every conceivable form of contrived/convoluted story to get her to do something, and she won't budge (and in fact will turn into a major fight), what choice do we have left?

I feel what we need is help from a third party.  But, all of this is to say, if we can't get her to agree to something as trivial as a urine sample, how can we convince her to accept regular visits from family, let alone a professional caregiver or companion?  I feel this is really what we need the most right now, so my dad can get a break, and have time for all the communication and planning that needs to occur.

jfkoc

Please send your information to the Dr.

Your father could try telling your mother that the appointment is for him and that they can do "something enjoyable" after...like getting some ice cream.

Sometimes one simply must wait for the shoe to drop....very hard.

harshedbuzz

A couple of thoughts-

1. I would overnight the PCP a bulleted list of your concerns about both parents. List symptoms for mom along with date of onset plus dad's inaction around diagnosis and inability to effectively manage behaviors. 

2. If dad doesn't keep the appointment for any reason, I would engage the aunt whose evenings they've been interrupting to come stay with mom while you physically remove dad for the CTJ I outlined earlier. If he won't play ball, you have an option to create the Plan B for implementation when dad can no longer manage because of death or disability. Or, if you feel she's being neglected, you could pull the nuclear option of calling APS. 

HB

JILLGG

Good advice. Straight forward and simple.

Iris L.

ReallyScaredSon wrote:

 

A fundamental problem is that there is no consistent and reliable communication between my dad and I.  

I realize you have children and live three hours away, but if you can take a day or weekend to spend time in person, you will get the picture.

His health is reasonable, though he's had a bad head cold the last couple weeks.  I truly believe he is unable to recover effectively, because of inconsistent sleep and overwhelming stress.  I've always known and admired my Dad as an incredibly rational, thoughtful, logical person.  But in this situation, I believe he is depressed, and it's taking all his mental bandwidth just to keep his head above water.

Yes.  Sleep deprivation and depression can both impair cognition and executive functioning to a great degree.  Also, all the steps needed in dementia caregiving are basically new, unless one has been through this before with another family member.  In other words, he most likely wouldn't know where to start even if he wanted to.

I tried to talk to him about the UTI.  He said, his mom, who lives in an assisted living community, and does have dementia, once had a UTI and it didn't affect her dementia at all.  

These are called "silent UTIs" because they do not exhibit the usual symptoms.

So I came at it from this angle: fine, maybe the UTI isn't a factor, but it's such a trivial test, so why not do it?  What's the harm?  He said there was a previous doctor visit (years ago), where the doc suggested a UTI test, and my mom fought it tooth and nail.  She had a 35-year career as a medical technician, so she feels incredibly insulted that someone would even suggest she might have a UTI that she doesn't know about.

My mom does have an appointment with her PCP next Friday, and my Dad assured me that he will do everything to make the doctor aware of these important issues.  He said that there is a huge chance she might not even want to go to the doctor.  He asks me, what can he do in that case?  He feels in situations like this, he's tried every possible approach to do convince her to do something, and it just won't happen.  He feels his only option is to physically subdue/restrain her and force her into the doctor.  That's a line he's not willing to cross (thankfully!).

This is where therapeutic fibbing comes in.  He could tell here that this is a new year and that Medicare rules have changed (which they have) and she needs to check in in order to continue benefits, for example.

With our woeful lack of communication, I can't be sure, but if I give my dad the benefit of the doubt that he's tried every conceivable form of contrived/convoluted story to get her to do something, and she won't budge (and in fact will turn into a major fight), what choice do we have left?

Prepare plan B as discussed above and wait for the inevitable crisis.  You might also look into Family Medical Leave for yourself because everything will take up a lot of your time.

I feel what we need is help from a third party.  But, all of this is to say, if we can't get her to agree to something as trivial as a urine sample, how can we convince her to accept regular visits from family, let alone a professional caregiver or companion?  I feel this is really what we need the most right now, so my dad can get a break, and have time for all the communication and planning that needs to occur.

She is not going to agree.  This is your sticking point.

Iris

MN Chickadee

My father, who was also the primary caretaker of my mom with dementia when she was still at home, was similarly inactive about things. It wasn't until we had a "coming to jesus" as HB said that things moved, and it turned out he just didn't have any gas in the tank left to deal with this stuff. And a healthy dose of denial about what was happening to his wife of 50 years. All his energy was going to day to day survival. After we had the honest heart to heart I got more hands on. I said I would make the appointments and go with. You may need to take some time off work to actually go stay with them. Stay a few days, have the sister hang out with mom for an hour so you can really talk to dad. Set up appointments with the doctors, with a lawyer to draw up POA and other legalities. You may find he will let you drive the ship once it's clear it will actually help and you are on the same team. And remind him that what you do now will help her stay as healthy and independent as possible in the long run. It really is in her best interest to be under medical care, to have a diagnosis (some medications can make certain dementias worse so you really do want to have a full work up.) Doing this in the dark by the seat of your pants will almost inevitably insure a crisis and options and decision making during a crisis are not good - often don't end how we would like. Being proactive is the best way to protect her and her independence. Once she has a full work up there may be a low dose of medication to control the delusions and suspicion that will make their day to day lives much more manageable and give her a better quality of life. Isn't that really what anyone would want in their right mind? 

You also both need to stop being in the mindset of convincing mom of anything, reasoning with her, getting her to agree to things. That time has passed. Never going to happen. With dementia the art of therapeutic fibbing is very much an approach that becomes necessary. Fibs and finding the right work arounds are really the only things that will help you all succeed. We find the rights fibs and the right buttons to push to get the person with dementia to do what has to be done for their health and safety. Maybe the doctor appointment is for dad and she's along for the ride before they go to lunch. Maybe it's a quick blood pressure check for "both of them" because they will get a discount on their insurance premium if they do it. I would definitely send a letter to all physicians ahead of the appointments with a list of symptoms and a summary of what is going on at home, as well as how difficult it is to get her to go in and explain what ruse you are using to coax her to the clinic. Setting up an online medical account (patient portal or whatever their health system uses) for her with your own email would be a way to communicate with physicians, usually there is a way to message them and see test results and things like that. Maybe signing some paperwork with the attorney is just to "protect their assets" or you are doing it for yourself and the attorney is offering a discount so they can do it at the same time. Some elder law attorneys are very good at cajoling people into what needs to be signed to protect their own interests. She need not be part of the decision making, the financial planning, the ins and outs, the costs. Just get that signature down. This would involve someone taking mom on an outing or finding a reason to hang out with her while dad takes care of business with the attorney. Again, find the work arounds. Work behind the scenes - this is very important when dealing with a PWD who has a lot of suspicion. 

ReallyScaredSon

Update: I just spoke with my mom's PCP's nurse.  I asked her if it was possible for her and/or the doctor to discuss these issues in private with my dad.  She gave a hard "no" to that.  She said these issues need to be brought up with her present, literally: "it needs to be an open and honest conversation with both parents present."

I asked, "What if these things do not get mentioned in Friday's appointment?"

To that she said, "Then the doctor will be in the dark on the full story.  I will tell him what you've told me, but he can only act what is presented with her there.  We need to get her side of the story."

I am honestly concerned that my dad may not have the courage to broach this subject with the doctor while she is there.  See my above comments: he's terrified of her simply catching him reading a site like this.  He has avoided, as though his and her lives depend on it, even mentioning the slightest hint of her mental state around her.

There's that, and there is also the potential that she will be having a "good day" when she visits the doctor.  There are times when she can convincingly appear quite normal.

M1

RSS, I would suggest you put all your concerns in writing and make sure the doctor--not the nurse--has it.   Your written record can become part of her medical record.  TBH, it sounds to me like the nurse is on a power trip and has no idea what she's talking about.  That is patently absurd (and I say that having been in private internal medicine practice for 30 years).

ReallyScaredSon

I am slightly relieved that I'm not the only one who thinks the feedback I got from the nurse is absurd!

That said, what is the best way to ensure anything I put in writing makes it to the doctor?  I do have a letter prepared.  But I feel any fax or snail-mail could easily be intercepted by the nurse.

Emily 123

Honestly, and this is just me, but if things were starting to spin out of control and someone needed to get things started  I'd drive up there and see it through. Maybe make up some reason you'll be around.   Then when you ''find out '' about the doctor's visit tell her you'll swing by the doctor's after  to take them to lunch or dinner or whatever. Then that's extra push for mom to go to the appointment.  If you can't then I'd ask your aunt to help coax her if needed.  

You might want to consider getting your dad a tablet or iPad that he can passcode protect so that he can communicate more easily.  It would make his being able to read emails easier and would give him some privacy. 

ReallyScaredSon

Update: I called the "case management office" of my mom's doctor's medical group, hoping to speak with a social worker who might be able to offer some more direction.  The person I spoke with did put another message in with the nurse, but ultimately kinda gave me the run-around.  Essentially, they are saying, for all they know, my mom is of sound mind and can make her own decisions.  It's up for the doctor to determine if that's not the case, and until then, it's on my mom or dad to bring up the issue with the doctor.

As for Emily 123's suggestion: I don't know if that would do any good.  I know for a fact I am not on the HIPAA forms.  So even if I showed up at the doctor's office, there is no way they will let me in to the appointment with her, unless she agrees.  And I can assure you, she will absolutely not agree to that.  (In fact, I cannot conceive of any situation where she even agrees to casually meet me at the doc office.)

Also, FWIW, my dad does have "private" technology.  But he won't use it around her.  He says she's constantly sneaking up on him, trying to see what he's doing.  And if he gets caught looking at alz.org or similar, it's going to explode.

I keep trying to impress on the people I talk to (nurse, case management staff) that I'm just trying to get her the proper medical attention she needs, and that I'm trying to avoid a situation where we have to call 911 because it's completely out of hand.  But at the same time, she definitely won't bring it up on her own, and my dad is terrified to bring it up.  That's why it's gone on as long as it has, and we're now dangerously close to making the 911 call.

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loveskitties

Can your father request an appointment with her PCP under his own name?  Thereby getting around the "she needs to be present" issue.

Certainly he probably needs one to help with the trials he is facing.  As he relates the situation at home, it may become apparent that the PCP needs to take a closer look at your mother.

How to get her to the appointment for her, is a puzzle.  Would she think it odd if she were told it was required by the medical insurance carrier in order continue coverage?

Wishing you the best as you try to support your dad and get your mother the help it sounds like she needs.

ReallyScaredSon

Update: my mom made the PCP appointment on Friday.  I haven't talked to my dad directly yet in any meaningful capacity, so what follows is based on a patchwork of feedback from my dad and aunt.

She started Friday in a great mood, didn't have any objection to going to the doctor.  She was adamant my aunt not go in with her, so my aunt waited in the clinic parking lot.

In the doctor's office, she was apparently given a basic cognitive test, and "failed miserably".  She didn't know what day or time it was, couldn't draw a box, etc.  So the doc started talking about doing a urinalysis and MRI to rule out physical issues, and my mom got mad and stormed out.

She paced around the clinic parking lot for a while, fuming mad.  Eventually she got cold and sat in the car, my aunt joining them in the back seat.  She said something to the effect of, "If I have dementia, I might as well kill myself.  I know where a gun is."

My aunt said her saying "I know where a gun is" means premeditated thinking, and dad should call 911, which he did.  So the police and ambulance came to the clinic parking lot, and took her to the ER.

At the ER, they did the urinalysis, and she does in fact have a UTI, and prescribed antibiotics.  Originally, since she was in for suicide risk, the plan was to keep her under observation for two days.  But I guess the ER nurse practitioner talked to Mom's PCP, and learned of the result of the cognitive test my mom had recently taken.  So, according to my aunt, their attitude changed to "Dementia plus UTI, this isn't an ER/hospital matter, we are dismissing her."

At some point during her stay in the ER, she did talk with the suicide specialist, who determined she was not a suicide risk.

They also sent her home with a Seroquel (Quetiapine) prescription.  I am not sure of the dose.  My parents keep referring to this as the "sleeping pill".  I'm not sure if that's what they told my mom, or what registered in her impaired brain.  My aunt is very familiar with that med, as she's worked with schizophrenics during her career, and told my dad all about it.

I spoke with my mom Friday evening and yesterday (Saturday) around noon.  Her tone was very pleasant and chipper.  But she made a point to constantly talk about how mad she is at her sister.  "Can you believe what my sister said?  She said I have dementia!  I'd be in a nursing home if I had dementia!  I don't know if I can ever forgive her for that.  She's always running her mouth, doesn't know when to shut it..."  She must have repeated that a couple dozen times during Friday's conversation.  I  don't know if it's anosognosia or denial, but she finds the suggestion that she has dementia absolutely ludicrous.

Talking to my parents yesterday, at the very end of the call, I was speaking to my dad (with her in earshot) and he mentioned that he had to call on Monday to confirm the MRI appointment.  This was a hot button for my mom, because she forgot that I knew about the MRI, and got upset that my dad told me about it.  She is fiercely concerned about her privacy (yet another reason why communication with my dad is near impossible).

When I woke this morning, there was a text from my dad from about 1:30am, saying he was sleeping in his car in the driveway, because she had another episode and kicked him out.  She actually called my aunt (the one she's mad at!) at 3:30am.  Via text, my dad said he's waiting for an opportunity to count her seroquel pills, as he thinks she's taking it, but can't be 100% sure.

So, we are still apparently in crisis mode.  But at least now her PCP has seen her lack of cognition, and there is a formal record of the suicide risk.  I was hoping the antibotics and/or seroquel would prevent these episodes, but maybe it's too soon.

M1

RSS, I think the Seroquel/quetiapine script was very appropriate and it should help a lot with sleep and anger--my partner takes 25 mg at bedtime.  Every now and then though there's a paradoxical reaction.  

Sounds to me like your mom should not be in control of her own medications.  Your dad should probably be supervising and giving them to her.  

If that's not possible and she continues to be violent towards him, I'd have her taken back to the ER for psych admission.  Make sure wherever you take her has access to psych, and unfortuantely, the covid surge is going to make all of that pretty hard. 

Seroquel dosing usuully starts low--12.5 or 25 mg per dose--but if tolerated can be increased by 12.5-25 mg increments pretty quickly.  You aunt will know this.  Doses for dementia are usually much lower that doses used for schizophrenia though.

Keep up posted.  I wouldn't sweat it too much if you can't get her to the MRI.  More helpful for ruling out other causes than ruling in, though occasionally there are changes that are definitive for Lewy Body dementia, and that can make a difference in what drugs are tried.  Hallucinations are common with Lewy Body.

MN Chickadee

She cannot have control of medications. Between her hallucinations, suspicion, lack of short term memory to know how may she took, and suicidal comments this is dangerous. Dad needs to have the medications locked up. Stop talking about dementia, doctors, medications, and diagnosis with her. It's probably feeding her suspicion and anxiety and it serves no purpose, let her forget and move on while the family finds workarounds. When she is mad sister said it just say yes I'm sorry I will speak to her about that. Agree. Say whatever settles her down. Fib. 

Maybe dad lays out both of their medications at night, says now it's time to take our meds and supplements or whatever. Maybe it's vitamins. Maybe it's to help us sleep. Maybe it's an aspirin. Find what will work. Ask the pharmacist which can be crushed and hidden in nightly pudding or similar. 

If she continues with the aggression and throwing dad out of the house she may need inpatient for a while. Research geriatric psych units in her area. Geriatric specific units are staffed by doctors and nurses who are highly specialized in dementia. Usually a person stays a few weeks to find the rights meds and get stable enough to go back home or to a facility or whatever the family wants. The one closest to me is a few hours away but totally worth the hassle for the families I know who have needed it. Sometimes a 911 call, trip to the ER on a psych hold and then being transferred to geriatric psych unit is what starts it off. It is good you have the ball rolling on the PCP but yeah still in crisis mode. Hang in there. 

ReallyScaredSon

Update: yesterday the lab called my dad, there is no UTI.  Apparently the initial dip test was inaccurate.  They advised to stop taking the antibiotic.  Confirmed MRI is scheduled for Thursday.

I received an email from my dad this morning, also sent to random members of our family.  The content was basically, "I forced my wife to take some medication that is bad for her health.  She called you under the influence of this medication.  I apologize for doing this to her."

Basically, she now believes that, under the influence of the Seroquel, she made some embarrassing calls to our family (not true).  In an attempt to clam her and keep the peace, he composed and sent that email while she watched.

So essentially, the chances of her taking this med are basically zero.  I agree, my dad needs to administer it.  But what if she outright refuses?  And grinding it up and putting it in her food is basically impossible.  He will get caught (since she's constantly watching him).

He is unsure if the MRI will happen or not.  He and I agree that further evaluation is needed (e.g. psych eval), but getting her to do these things is becoming impossible.  She has not completely lost all her faculties.  I suggested that, for appointments, he could just say, "Let's go get groceries together," and not even mention anything about the doctor.  But she's smart enough to know that, for example, they are going "grocery shopping" at an unusual time.  And even if he could pull that off, as soon as they got into the parking lot of the medical facility, she'd figure out what's going on, and completely lose it.

I can't prove this, but I have this feeling that she has a long-held belief, formed well before her cognitive issues, that if she were to develop dementia, she would not want to live.  And if indeed I'm correct, then she remembers this notion, because she formed it long ago and presumably spent some time considering it.  So now, when there is any hint or suggestion that she may have dementia (by anyone, my dad or a medical professional, even indirectly), it's a "hot button" that rallies her remaining faculties, and enables her to fight the situation.

I feel the crucial thing we need now is a way for my dad to get some help.  He can't sustain this by himself.  But she is adamantly opposed to regular visits by family.  (She remembers when my aunt and her family came over during one of her episodes, and complains that "they stay here all day and eat all my food"; of course she doesn't remember *why* they came.)  My dad basically says there is no way she'll allow a stranger (e.g. paid professional) to come to the house even once, let alone on a regular basis.

It's strange and frustrating, but she does have some memory, and some rational capability, just enough to be hard to "trick" into taking meds, accepting visitors, going to the doctor.  But I don't know what to do, it's too much for my dad at this point.  No UTI means antibiotics won't help; Seroquel might have helped, but it sounds like that's not going to happen either.

mommyandme (m&m)

ReallyScaredSon,

I can’t imagine the stress this situation is causing. I don’t have wisdom for you but I’ll offer my sympathies. You and yours are not alone. I’m so sorry.

LL689

New to the forum. Your post was the first I read. You could have been writing my story. Exactly the same scenario. I am in PA, mom was in FL. Dad just as you described. It took too many years to get to action. The breaking point was wandering - mom got out of their gated community several times which meant my dad lost his autonomy. That made him more angry and depressed but willing to listen to reason. 

I took over things at that point. I told dad I would look for places near me and move her up here if he wanted. It was as if he had been waiting for me to ask but wouldn't say anything himself. Things moved "quickly" after that but we did have a few hiccups. He changed his mind a few times on moving her to a home and if she should stay near him in FL. Unfortunately, those hesitations were not for the "right" reasons. 

She had not been formally diagnosed despite being seen by her primary doctor and a neurologist because dad refused to go back for follow up and never asked about it at appointments. Thankfully the primary care doctor made easy work of the cognitive and memory assessments and filled in the DME form that memory care needed. It wasn't easy to get much of what was needed done and it did involve lying but for a good cause. 

I'd be happy to provide any more specific advice but I am not expert. I have only done this once but in the last 6 months so it is fresh.

Few specific points 

-my mom is in a similar stage as yours. Too late to try to get into explaining the dx. Just starts fights. 

-same with meds. thankfully mom is physically healthy so doctor said don't bother fighting over meds that won't help her (cholesterol meds, even alz meds at this point)

-one minute she would pitch a fit about going to the doctor saying it was a conspiracy. The next she went willingly. Flexibility is key. 

-repeatedly had to explain to my dad that he can't reason with her and stop trying to prove her wrong!

I wish you and family the best. 

caregiver57

New to this group.  Caregiver to 96 yr old mother  Up until now we have manage her caregiving pretty well.  Since november we have seen a significant decline.  She sees people.  Wants us to feed and clothe them.  Gets upset when we dont.  Doesnt remember to eat.  Is starting to have taking care if herself in bathroom.  Instead if putting diaper on she puts in between legs. Talks to people for long hours.  Wears herself out looking for these people.  Then she sleeps alot to catch up.