Mother-in-law with Alzheimer's diagnosis refusing treatment/diagnosis

justtrying2help

Hi all, I am new to this forum. My mother-in-law was diagnosed with early stages of Alzheimer's about nine months ago. Since then, it has been an uphill (upmountain?) battle. She has refused to accept the diagnosis and will not return to see her neurologist despite MRI and cognitive confirmation of the disease. She has become quite mean and is paranoid that we will try to take away her freedom. She has said we wanted her committed to a mental institution, which was not the case however this is the reality she has created in her mind. We wanted her to continue to follow up with neurology as they had offered medication (FDA-approved and on potential trials) to help decrease the acceleration of memory loss. Unfortunately, none of this has happened. As a result of everything, she and I no longer speak as she blames me for what happened at her doctor's appointment when the diagnosis was given, as I was the one who had made the appointment for her. I believe she is driving without a driver's license and might be uninsured, but I do not have a way to confirm any of this as she will not be honest with any family members. Our goal was to develop a care plan with her so we could honor her wishes when she could not make decisions for herself. As she refuses to accept what the current reality is, I am concerned the only way we will be able to assist is when we get a call from APS or find out she has been in some accident. I had spoken with a social worker and they advised that there is nothing we can do as she is currently deemed as mentally competent and so we have to wait for an event to occur before we can get involved. How do you all navigate these challenges, particularly when you have someone with a diagnosis they refuse to address? At this point, I do not know what part of her personality hers is and what part is from Alzheimer's. I want to take her at face value but fear she will just decline so much more rapidly without proper medical support.

hogladyrider

Right there with you every step of the way. This is a wonderful place to come for comfort.

One thing I have learned is that denial is part of the disease. My partner early early on was the one that told me he was having short term memory difficulties and getting lost in a store etc but now he will not even discuss that he has any "issues" and he flatly refuses to see a doctor so we have no "official" diagnosis.

It has been a slow slide down the hill and difficult for me as well because some days he is the man I fell in love with 25+ years ago and others he is someone I don't know nor do I want to even be around but my commitment and learning about the disease is what keeps me going.

My own father was diagnosed at 65 and passed at 78 so my mom has been a big comfort to me but she is 96 so I have turned to this web site and You Tube videos for assistance.

I plan on telling his children this fall as I feel it is a discussion that needs to happen in person not on the phone and that is when we plan on seeing them I hope I can make it til then. I am not sure what the future holds days like today I have to take it one hour at a time this is TOUGH for the caregivers as well.

H1235

Welcome. Do you or another family member have durable power of attorney? If not this should be your number one priority. She needs to be kept her safe even if she is mad and angry about it. It’s not easy! Anger is another symptom. If she is living alone, still driving and you’re not sure about bills being paid then it’s time to step in. I would be more concerned with these things than treatment that may possibly slow progression. Even if she was prescribed this medication is she capable of taking it on her own? Safety first! What good is slowing progression if she is in a car accident. Tell her the car needs to go in for repairs and don’t bring it back. Get a little nosy and go through her bills(maybe while she is out to lunch with a sibling), I know it will feel wrong, it’s an invasion of her privacy, but it has to be done for her. If things are a mess do what needs to be done to get things in order. I have read heartbreaking stories here of loved ones loosing or giving away large quantities of money. Act now before it’s too late. Start making plans for her care moving forward. It sounds like it might be time to consider more care. You will probably never get her to agree to any of this and trying to convince her is only going to make things worse for you and her. Anosognosia is very common with dementia and is the inability of a person to recognize their own defects and symptoms. I have found this to be the most difficult symptom we face with my mom. As my moms durable power of attorney and the one that brings her to doctors appointments, I am also on the receiving end of much anger. We have started her an medication that seems to be helping, but again that’s going to be difficult for you. Some people here have created stories to convince their loved one to go to the doctor. Look into therapeutic fibs. I hope there is something here that helps.

justtrying2help

Hi Chug

https://alzconnected.org/discussion/comment/213101#Comment_213101

Thank you so much for your thoughtful reply. One of her son's in the DPOA, however we are not allowed to enact anything as she is still deemed to be competent in the eyes of the law. We aren't able to make sure she is paying her bills etc as we do not have any rights to do so. This is what I am finding to be so challenging is we cannot step in to intervene, it feels like watching a building burn.

M1

Welcome to the forum. Unfortunately what you are describing is very common. This is a good place to learn a lot. If you look to the right of this page under Quick links and Groups, there is one for new members with a lot of useful information and staging tools. If you read a lot here you can learn a lot as well as get emotional support.

It is common to have to do things for our loved one's safety against their will and without their consent. Your mother in law has anosognosia, in which she can't recognize her deficits and thinks she's fine. You should never remind her that she has dementia.

If there is any family member she trusts, that person might be able to convince her to sign papers for durable power of attorney for finances and healthcare. If she won't, you may have to sue for emergency guardianship, which is a more cumbersome process. Talk to a certified elder law attorney (look at nelf.org). These attorneys can also help you assess her finances and get her qualified for Medicaid if she might need it for long-term care.

additionally you need to disable her car. Slash the tires, unhook the battery cable, have it towed, whatever it takes. Other people's lives are at stake.

Emily 123

Hi—The attached helped me, and Teepa Snow videos on You Tube are excellent.

understanding-the-dementia-experience.pdf

Quilting brings calm

You mentioned someone has DPOA. Is it effective now or is there a clause saying it’s only in effect after a doctor has declared her incapacitated? The one I have for my mom gave me authirity immediately. I can act on her behalf. She can act on her own behalf too. So technically my mom could reverse any decision I made for her ( but she won’t). If the one your relative has gives them immediate authority, they can start talking to banks etc.

I wouldn’t worry about the lack of medications to slow the progress. They aren’t all that effective for many people and a lot of people can’t take them due to side affects. I think medications for anxiety and depression would be more important for your loved one at this point. It sounds like she is scared to death that all of you want to put her ‘in a home’. Which, truthfully, might come to pass as she progresses. Especially if she continues to behave in a reckless manner.

Welcome to the forums. There is a lot of good information and support to be found in most of the discussions

H1235

It’s my understanding that this type of DPOA requires the signature of two doctors to activate. I assume the doctors refuse to do this. I would still recommend taking a good long look around her house while she is not there. Gather evidence. Are bills unpaid. Is there any indication she is driving without insurance or on an expired license? Does the car have unexplained scratches. Does she have food to eat? Is the frig full of expired food? Send all this information to her family doctor. Include in there the fact that she is refusing to see the neurologist and details about the paranoia, anger and anosognosia. Request the signed letter to enact the DPOA. If the doctor needs to see her make up an excuse to get her in(check up…).
As far as driving goes, if siblings agree she should not be driving I would deactivate the car in some way. She doesn’t need to know you did it. There does not need to be a big nasty discussion about it not being safe for her to drive. I would do this even without an active DPOA. Following the letter of the law makes no sense to me if it puts her life in danger. I hope you can get this all figured out soon.

Emily 123

The attached checklists (presuming Alzheimer’s) might assist you. Stage to the worst behavior, as that’s what you’re going to base your decisions on. People can straddle stages, or occasionally be pushed to exhibit behaviors that are more advanced by stress or acute illness. I know the nurse in you wants to work with her and allow her autonomy, but the disease has progressed so that she’s beyond being able to compare/ contrast and make feasible decisions. She doesn’t have to face her diagnosis- she no longer has the tools to fully comprehend a terrifying and terminal diagnosis, or plot her own course. When information or reminders of tasks become a trigger for agitation, remove the trigger. That may mean you need to let the person she has the most trust in handle her.

In some ways the short term memory loss can work for you if you can get the person in the door for an assessment. That may require a fiblet, like the visit is required by Medicare, or someone’s worried about their own BP and ‘let’s just run into my doctor’s office to see what it is’, if you can get them out and about. Usually if there’s resistance you don’t discuss plans ahead of time. But it will feel counter-intuitive and disrespectful. However, the goal is getting her help, not getting her agreement. She can’t reason anymore.

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

hogladyrider

https://alzconnected.org/discussion/comment/213105#Comment_213105

Thank you for posting this I needed this for sure!

Iris L.

Please familiarize yourself with the characteristic of anosognosia. This is different from denial. If you or professionals believe that she is in denial, this will delay getting anything done. You must prepare yourself to use the work-arounds that the members have learned to use. Your PWD is not aware of her deficits and limitations. Do not discuss these with her, because she will resist vigorously.

Read all of the online reading material for newcomers, they will give you a foundation for understanding what you are dealing with. Be aware that many, if not most professionals are unaware of the realities of caring for a PWD. Many are unaware of anosognosia, which is a major characteristic of the dementias. Read a lot of threads, post a lot, and rely on the knowledgeable members.

Iris

jfkoc

There is no reason that your mother-in-law needs to accept her diagnosis. Just let that go.

Please do not worry about the meds. They only help some people and then not very much.

The person named as the agent in the DPOA needs to be the one to know exactly what is spelled out in the document and they will be the one to act. This does not mean that you can not be helpful but they hold the legal responsibility.

Driving…no license, no insurance? Please consider the enormous liability of an accident.

https://recordsfinder.com/driving/?campaign=recordsfindercom_license_plate&utm_source=bing&utm_medium=cpc&utm_term=valid%20driver%27s%20license%20check_e&msclkid=9383fe155da1113605f79864a7bfe26c