New here, no diagnosis

Michelle in WI

Hello, all,

My 79 year old mom has been showing signs of dementia for several years, but in the last year, things have gotten much worse. She lives on her own and refuses to get a diagnosis. She had a neurology referral in January, made the appointment under heavy encouragement from me, but then cancelled it the day before.

She absolutely will not reschedule. Any time I bring it up, however gently, she gets angry and says the doctors are idiots and don't know what they're doing. She is a retired nurse, and each time we are in the ER (every couple of months) she tells it to everyone she sees, almost like a compulsion. Her medical knowledge, however, is vanishing, and you'd never guess she'd been a nurse if she didn't tell you.

She blames "getting stupid" and "feeling fuzzy" on a vague condition of "being sick." She blames her atrial fibrilation and her blood pressure medication for her memory issues. 

A few weeks ago, she called me in tears because she got lost driving back from a friend's house, which she's been going to since the early 80s. I managed to get her calmed down and she got home. I rushed over, but by the time I got there (less than 15 minutes) she was already brushing it off like it was nothing.

She is incredibly hostile when talking about doctors and other medical staff. They're all idiots, and she says awful things I won't repeat here about the women she sees. Calling them stupid b-words, etc. I know she's scared, but she's getting so nasty, and hard to deal with. She isolates and refuses to participate in anything. There's an adult day service she could go to, but she HATES arts and crafts, and most activities, so there's no way she'd go.

She was born and raised in Canada, and every time she gets mad, she tells me she's moving back there.

I took her to see a heart specialist recently, (part of the same hospital system she already goes to) and she insisted on bringing along a bag filled with all her medications. After getting home, she called me, irritated because I still had her meds. When I explained I had brought them in her apartment for her, she told me I was wrong, and they were nowhere to be found. I went over and showed her she had already put them away. She was SO upset, but again refused my gentle suggestion that she make the neuro appointment.

My brother lives six hours away and has a lot of opinions on what "needs" to happen, which isn't helpful. I told him if he's so convinced of how things should be done, he can come up here and give it a try.

She has me set as her medical POA and my brother as financial, but nothing is activated.

So sorry for my long rant. This is just so difficult.

M1

Welcome to the forum Michelle, but sorry you need to be here.  Reading your post, I have several thoughts, though how to accomplish them will take some doing, obviously:

1) She doesn't need to be living alone;

2) She doesn't need to be driving, period.  This is critical.

3) You all need to activate the POA's now.  I would read the documents carefully, and if you and your brother have a good relationship, put your heads together:  The person with the legal POA is ultimately the one in charge.  I said on another thread recently, it typically falls to daughters to be the caregivers, and I personally would NOT take on that responsibility without also having the authority.  

4) She is further down the dementia road than you think.  This is common for all of us, we tend to underestimate how advanced the disease is.

One thing you will learn quickly here is not to try to reason with your LO or "ask their permission" or do anything to get them to go along with what needs to happen.  It won't work, and it will just cause arguments.  Safety needs to drive the decision making, and you will have to proceed just as you would with a toddler who is protesting and has no safety awareness.  Very hard to get past that when it's your parent your dealing with.  You may have to lie and dissemble to get things to happen.  To get her in for a medical appointment, you may have to say it's required by Medicare or some such, or tell her it's for her heart when it's really about the dementia.  You will have to write your concerns down for the doc before the appointment so that they don't have to be discussed in front of her.

I'm sure others will chime in, this is a very supportive place with lots of very experienced caregivers who have been down this same road.  Good luck.

Michelle in WI

Hi M1, thank you so much for your reply.

I wish it were easier, but unfortunately, there is no way we can activate the healthcare POA right now. She'd have to be declared incompetent by two doctors, and I've been told that simply won't happen at this point. Her apartment is immaculate, her cat is well cared for, she pays her bills, her clothes are clean and she does her own laundry, she eats (not well, but well enough to pass).

She hasn't given up driving, but is getting closer. The whole thing is so nerve-racking. She's so hostile about everything, yet completely reliant on me for support. She seems to have only a few moods: hostile and morose being most common. Her family is all in Canada, she's cut herself off from most of her friends, and she's a widow (my dad died 18 years ago). 

My brother is making more of an effort to be supportive and let me take the lead as the one who is here and most in the know. It does seem women carry the burden of caregiving at an exceedingly disproportional rate.

I am planning to call her doctor this week and express my concerns, and ask that they please consider assessing her cognitive state. I know they can't talk to me about her healthcare, but I hope they will at least listen.

I attended my first caregiver support group a few weeks ago, and was surprised to learn that if the healthcare POA is activated, we will not be able to put her in assisted living. She could only go to memory care or a nursing home. 

Thanks again for the support and suggestions.

Edited to add: She is still in charge of setting all her own medical appointments, and absolutely will not budge on letting me help with that, and won't let me access her info. I'm trying to find ways to get her to let me in. 

azoverwhelmed

Just chiming in to say I get you completely on the day programs--my LO HATES creative endeavors (except when they are making ME do them on their behalf), and always has. The only thing their entire life they were/are passionate about is the news on TV. They've never enjoyed a single fictional thing, either--so reading (unless it's books about politics), and non-news TV is right out. It's really put me at a loss, since it's so opposite to my life experience... (I hate TV, and the news/politics especially--SNORE.)

I agree with the others about doing your best to get her to stop driving. That's so dangerous for her, but it might help to talk to her about how dangerous it is for other people, instead. I bet it's a very hard independence for anyone to give up, but maybe a few casual mentions of how many more accidents there have been around town, and/or a little reminder (which is true, by the way) of how much more likely she is to strike a pedestrian if she's driving somewhere inappropriate. 

Definitely put your head together with your brother about that POA. It can help to talk to your mom w/ the whole family on board to reassure her that she took care of you for so long, now it's your turn to step up and do a few things for her. It will eventually be more than a few things, but everything goes in steps. 

May flowers

Michelle, welcome to the board but sorry for the reason you are here. Your mom sounds like she has anosognosia.

If the PoA requires 2 doctors to sign off, I suggest make a list of everything that is happening for when you talk to the doctor. Would she fall for a “fib” that insurance is requiring her to get a checkup? You could even coordinate this with her doctor so he knows why she is making the appointment. M1 is a doctor, he might chime in as to whether a doc would go along with it? 

As for the concerns that activating a POA will limit her to MC, I haven’t heard that but please know that there are some very high functioning PWDs in MC. My FIL was one. They tend to find each other and develop relationships. One lady there was so professional and well spoken we thought she was a member of the staff! From what you describe, I wonder if she wouldn’t be a flight risk in AL anyway. My FIL was probably right on the border between AL and MC but what tipped the scales is if he were in AL, was the flight risk and also he probably would have stayed in his room all day and not socialized. The MC had a lot of activities to keep them engaged and even though he was an introvert, he liked being around others and watching activities.

I knew someone who was so worried about their LO driving, and could not reason with them, so they disconnected the car battery. I don’t know if that is even legal, but I know that there is a lot more to driving than just getting places, there is judgment and reaction time and PWDs lack that, even in earlier stages.

Best wishes to you.

M1

fwiw yes, I think most docs would easily go along with any excuse you come up if they know ahead of time.  Most docs know that it's when the family complains that you have to take memory loss seriously.  You must be very explicit and thorough in writing down your observations--the getting lost, the not remembering putting away her meds, the anger, the anosognosia, all of it, every little thing you can think of.  

Doesn't matter so much if the medical POA is not activated, IF she has identified you to the docs as someone they can talk to by HIPPA rules, then they can discuss with you.  If she hasn't, then they can't respond to what you tell them, but they can for sure take it in.  

You may want to start with the cardiologist you mentioned if that's at least a place to start.  There are a number of things that need to be ruled out medically, so she does need to go--thyroid, vitamin deficiency, brain scans--she may have had some or all of these as part of other workups.  You mentioned frequent ER visits?  Bring it up there if you have to.

Quilting brings calm

The healthcare POAs for my parents has the checkbox marked that I can make decisions if they are  incapacitated. The other checkmark that says I make all the medical decisions from now on is left blank.  Guess what?  Every one of the  providers and hospitals have scanned it in and then talked to me as if I had all the authority in the  world.  I attend most of their doctor appointments.  Dad is usually asked what he wants for himself and and then I ask all the questions etc.  The doctors can immediately tell mom can’t make decisions so they all look to me.   There is no activation needed on it.  I have never had a provider act as if I don’t have authority.  I make sure when I take them to the doctor that my name is on the HIPPA form and then I hand it to my parents  to sign along with everything else.  They never  ask what they are signing. 

Make an appointment for your mom.  Tell her the day before that  YOU have this appointment and you need her to come  with you because a) you are worried and b) she will understand all the medical stuff.   Then type a note to be given to the receptionist on your way in explaining the ruse  to the doctor.  They will know what to do.  Have your mom sit down while you go up to the desk and check her in. 

As for the financial POA, my moms is the type that doesn’t need ‘ activated’.  It immediately allowed me to do whatever on her behalf and says it’s in effect until death.  It doesn’t stop her from making decisions for herself.  Incapacity would not change it other than I would need to get her own authority to do things stopped.  However she’s content for me to handle everything for her. 

Iris L.

Michelle in WI wrote:

. Her apartment is immaculate, her cat is well cared for, she pays her bills, her clothes are clean and she does her own laundry, she eats (not well, but well enough to pass).

 . She's so hostile about everything, yet completely reliant on me for support. 

Welcome, Michelle.  How can your mom be totally independent but be completely reliant on you for support?  What would happen if you withdrew your support for a few days or a week?  Often family don't see the forest for the trees.  Meaning that I believe she is not so functional.  Have you looked in the refrigerator for spoiled or outdated foods?  

Please read about anosognosia.  Also be aware that poor judgement is frequently the earliest sign of dementia, not memory loss.  In fact, for some dementias, memory may be retained for some time.  Also, personality changes are early signs of dementia.  Have the doctors check for dementia mimics, which are medical causes of dementia.  Have the doctors review medications that have memory loss as a side effect.

Don't try to convince her that she has dementia or anything else. Learn the work-arounds from the members.  Keep posting and keep reading.

Iris

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Mint

Michelle your mom and mine are similar in ways.

 My mom talks loud, refuses to go to doctor at all.  Constantly puts down doctors any chance she gets. Doesn’t talk about her very obvious physical problems.  She is very aggressive and uncooperative with me.  Her house is not bad, her refrigerator is immaculate.  She cannot can, but has no trouble freezing food I buy at farm stand for winter.  If I leave town in morning and come back in evening she gets anxious so know she depends on me even though she is very  uncooperative with me.   I have to buy her groceries etc., take care of her checkbook, pay her bills.

I have no answer but want you to know I’m in the canoe with you.

HollyBerry

Hi Michelle - not sure where you are in WI, but UW Health has a geriatrics department that's really outstanding.  They have lots of research connections with the ADRC (Alz. Dis. Research Center, and also the Aging and Disability Resource Center - who decided they should have the same acronym?).  You might try getting an appointment for her with geriatrics under the guise of "your primary wants you to have such and such checked out" or whatever else you can create.  Of all the providers I've seen with my mom or with my partner, geriatrics was absolutely among the best (the very best was opthamology at UW).

Re the HC POA - my mom was in AL here in WI when hers was activated during a hospital stay.  Her AL had no problem with that, maybe because she was already there and the unit she was in was still a good fit.  I've heard the same thing you have, though, so it's a good question to ask as you start to consider next steps.  There were a lot of forgetful ladies in AL with my mom, and also in IL at the same place.