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In crisis mode with Mom; nothing has been done; how to make the necessary happen?
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.
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.
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.
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
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.
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.
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.
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.
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.
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.
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.
I'm sorry you are going through this , it's like watching a house fire slowly smoldering and you're jumping up and down and pointing at the smoke seeping through the vents and window gaps and everyone else is going " isn't morning fog romantic?"
Your Mom - pointless to try to get her to understanding, accept or agree to a plan. Just try to keep her calm so she's easier to work with in terms of agreeing to the basics - showering, going to bed etc .
Your Dad is probably ego bound to not want to "air the family secrets" and being just utterly wiped out trying to get your Mom to do anything and keep up with the chores around him . He probably needs help sooner than her [excluding the UTI possibility] to avoid him getting ill [stroke, heart] or worse.
I'd ,as others suggested, write the Doctor of your concerns , understanding he'll probably tell your folks even if you say not to . But how else to handle it? And seeing their reactions may aid him/her in deciding their mental status.
If you can, try to spend a week in their house , see how/if they sleep, meals, take pills , all that stuff and then ask if a part time helper -- maybe housekeeping as a cover can be introduced. See if you can see an Elder Care Lawyer with your Dad while there.
It is a long bumpy rotten road, all you can hope for is some shock absorbers. But we're all here for you .
ADDED: WIFI works behind bathroom doors... just saying -- your Dad can use a phone or tablet in privacy that way . And you can use Discord or something for a silent chat .
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.
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.
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.
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.