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Insurance Company informed my Mom that I've been making medical decisions for her

jmack8
jmack8 Member Posts: 23
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Help. My mom was diagnosed with moderate to severe dementia in July. Since then, using the POA paperwork, I've been able to discuss her medication regimen with the geriatric pharmacists and have had long discussions with her geriatrician. Today when she called into Kaiser, (that is the name of the insurance company umbrella where she gets all of her medical care) apparently someone on the phone informed her of this process. This is fairly devastating. She's of course SO upset about this. At this point does it make sense to break the first rule of dealing with dementia and let her know that the reason I'm stepping in is because she's been deemed medically incapable of caring for herself?

This woman is rational enough (at her most rational) to be able to make endless amounts of phone calls to insurance companies, etc. but not rational enough to not realize that there are not TWO men that live in her house with the same name and appearance. She really needs our help making medical decisions. We've dealt with this mostly by using therapeutic fibs and even some misdirection and false representation! (She's taking Gabapentin but she doesn't realize that she is!)

Right now she is already extremely upset at me. Because I won't give her her keys! I want to reconcile and concoct some other scheme BUT at the same time I had been holding onto some of her desire to drive to try and help her get motivated enough to get her MRI. She refuses to do it. I was going to have someone pose as the doctors office 2 days prior to her (previously scheduled) MRI to tell her that without the MRI the doctor cannot clear her to get her drivers license back. In other words, I was going to use some of this (otherwise nonproductive) energy to help her finish her diagnosis. Now this is all in jeopardy.

The other thing I worry about is that she moderately trusted us enough to let us help her dole out her daily meds. Under that level of trust, we've been able to swap her probiotic for some gabapentin. The initial introduction of that drug was hugely beneficial and we're hoping to "swap out the probiotic for a different brand" of a higher dose of that same drug. That is also in jeopardy I'm afraid!

Am I working too hard for the MRI? Is it worth it? Should I just come up with some scheme to smooth this all over?

Would love the perspective of THIS board. Her friends are sometimes supportive of my efforts (they can tell we love her and that she's suffering) but sometimes they think we're too mean. I've been told I need to "be more honest" with her which is just not helpful advice, frankly. But now I'm actually considering honesty. I don't know if it could hurt at this point?

Also, has anyone else had this problem with their insurance company?

Thanks in advance!

Comments

  • M1
    M1 Member Posts: 6,788
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    you can’t control what the insurance company tells her. Can you control this on the front end by limiting her phone access? Hard I know, but that may be the more successful route. If it’s a cell phone, take it away for “repairs.” If it’s a landline, turn off the ringers and take it off the hook.

    I personally wouldn’t care so much about the MRI as it is unlikely to give definitive information.

    Whoever is telling you to “be honest “ with her doesn’t understand dementia and anosognosia.

    Have you considered AL or memory care? When she is having trouble functioning in the real world without driving everyone else to distraction it’s time to consider a controlled environment.

  • H1235
    H1235 Member Posts: 576
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    If you tell her the truth(that she can’t make decisions for herself), she will not believe you(even with it in writing)! Not only that it will probably make her very angry. I would try to move on from it the best you can. Brush it off in whatever way makes sense. “You were sleeping when they called.” I would tell her whatever she needs to hear (probably a big fib) to reassure her and calm her. I have changed all of the contact information for everything that is moms to my phone number. I would also take away anything that has the phone number for insurance, healthcare, bank etc. If she doesn’t have the phone number she can’t call. This will probably be difficult if she is still in her home, but I think it’s worth a try. Delete any numbers on her phone that could cause trouble. With access to banking she could do some damage financially. As far as the medication goes could you put the prescription right in the probiotic bottle? If she sees it coming out of that bottle maybe she would trust you. I hate having to lie and be sneaky. It just feels so wrong. But I know it’s what she really need. I think I’m telling myself this as much as I am you. I hope you can figure something out.

  • jmack8
    jmack8 Member Posts: 23
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    Thank you. This is really helpful. I think I can say that I am authorized to advise her on medical care but I choose not to…I think that's all the insurance company can really say? Like they wont' tell her who picked up the meds (plus that wasn't me!) so I think she's just mad that I CAN.

    We already have the meds in the probiotic bottle! We'll just keep on with that little deception. We're considering swapping out the Gabapentin for an anti-psychotic—that that can be the "new brand" we're trying since we ran out of the other! Off to chat with the pharmacist again.

  • psg712
    psg712 Member Posts: 384
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    My mom's biggest anger at me (before the move to a facility) happened when a clueless mail carrier asked if she was moving, because he saw a forwarding order for her address. I had forwarded her mail to my address, because she believed that the solicitations she received from political and charitable organizations were legit bills she had to pay. She also had signed up for several home and car warranties, providing her credit card info.

    When the postal worker told her where her mail was being forwarded, she asked a friend who was visiting to call me (she didn't remember my number or how to locate it) and she let me have it over the phone. All I could do was tell her I was trying to help with the stress she was under from these "bills" and that I was happy to answer any concerns that she had. She kept yelling "Did I give you permission to do that?" I answered no you didn't, but I think it's necessary. She flapped around about it for a few weeks then gave up the fight. I eventually also removed her credit cards from her wallet. She never noticed they were gone.

    Bottom line to all this is that you gotta do what you gotta do to keep her safe … whether it's forwarding the mail, taking the keys, or arranging a move to a facility. It's hard to decide when it's time for any of that. I like the advice that many experienced folks here have given ... when you are wondering if it's time, it's probably past time.

  • Lucy C
    Lucy C Member Posts: 54
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    A different perspective…. Since our religious beliefs prohibit lying under any circumstances, we've had to go the honesty route from the beginning. We are now in Stage 4 to early 5 on the DBAT scale. We're still being honest. That doesn't mean we give long complicated explanations, but we have told her the truth about her medical evaluations, and what we're doing for her. We let her know how we're using the POA. "We're taking care of your bills right now, and doing your business, so you don't have to worry about that. I talked to your doctor. You have an appointment on blah-blah-blah…" The lifelong high level of trust and loyalty that's always been there is still at work, and because of that level of trust, she's allowed us to handle medical and financial decisions, and is relieved to have us doing it.

    (I will admit, I was so very, very grateful when she developed dizzy spells—just about the time her driving was getting scary. Thus the explanation: "You can't drive anymore because you're having dizzy spells, and you wouldn't want to have an accident and kill somebody." It might not be the only reason she can't drive anymore, but it was an honest reason. Now she doesn't remember when she quit driving, and thinks it was years ago.)

    I know that her level of trust and acceptance may change further along as the disease progresses. We may use redirection and distraction, but lying is still off the table. Sometimes, she may just have to be upset with us. She may refuse medications, or other things that would be helpful to her. We may have to make decisions against her will, and get some unhappy feedback.

    I have to say, though, that none of those things ever happened when our grandmother died of AD. We could not mistake the presence of God still working in her life. She never became angry, aggressive, paranoid, or accusatory. She had symptoms of AD for over 14 years, and from the beginning to her death, she lived as she had been all her life, even when she could no longer speak or eat, or remember her family—she still showed Christ's Spirit and His love, and she was gentle to the end—a witness with Alzheimers.

    I don't say any of this to preach a sermon: merely, that we have chosen another way of doing things, and these are the reasons why.

  • jmack8
    jmack8 Member Posts: 23
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    Hmm. I think I share your religion (at least generally) based on your post but don't feel like what I'm doing in telling therapeutic fibs is contrary to what He would want me to do. I did learn that the more truth that I CAN tell helps me feel more authentic when I'm dealing with her and that was very revelatory. So often I confront what she's looking for not so much in a patent untruth but in distraction and redirection. But I do think it would be damaging for her to remind her of the extent that her brain is no longer functioning and I choose not to inflict that injury on her. My mother was a force of nature in life, so independent, so fearless, so relentless and she spent almost all of that energy and attention doing good. Unfortunately those same traits that served her so well in life are making it more difficult now in her later years but I can appreciate that that is what makes her such a unique and valuable person. I don't think she'll be judged by her actions now, by the merciful God that I serve, and I also think He approves of our way of dealing with her.

  • SusanB-dil
    SusanB-dil Member Posts: 1,149
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    There is a post in the forum about telling the absolute truth vs helpful fiblets… A spouse would ask where her parent was, and he absolutely refused to lie to her. He kept telling her the parent died. She would break down and grieve every time. That is just cruel. How much more compassionate to say the parent just isn't here at the moment, or has gone on a trip.

    We don't intentionally outright lie to MIL, but when certain subjects or situations come up, we will go with the compassionate fiblet. every time.

  • Lucy C
    Lucy C Member Posts: 54
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    edited September 24

    It is also possible to tell a compassionate truth. Unfortunately, the spouse you refer to doesn't seem to have recognized the particular way in which Jesus sometimes presented the truth. For instance, He once told the mourners for a dead child, "She is not dead, but sleeping." And that was true. By this world's standards, she was dead, but He knew that He would call her from death back to life, and so it was "only a sleep." He also said, "Our friend Lazarus is sleeping, and I am going to awaken him." Then, He called Lazarus from the dead.

    So there is certainly no need to break a person's heart by telling them that their loved one is dead. Christ Himself has said that death is a "sleep," and if we rest in Him, we can be certain of "waking up" in the Morning. ❤️

    So what can you say if your loved one asks, "Where is my (parent)?" The Gospel's truth: "She's asleep, and you'll see her in the Morning."

  • Ci2Ci
    Ci2Ci Member Posts: 111
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    edited September 26

    A few things that I did when my mother's dementia became apparent (progressed rather rapidly):

    1. Logged into her** online banking to set the spend maximum on her debit card to the lowest limit that she'd normally need, as a security measure. If she tried to exceed, card would be declined.
      Disabled ATM use altogether, as she never used that.
    2. Logged into her online banking and set email & text notices for any and all bank transactions.
    3. Submitted a form to the state DMV stating that she was not competent to drive. DMV must then require the driver to submit to a driver's test to prove competence. They sent postal mail about it, which of course my mother didn't understand; so her driver's license was suspended. I'd tell her that she can't drive until she gets it "unsuspended" but that I could order whatever groceries and such she needed for delivery to home. [This was done very shortly before I brought her to live with me.]
    4. Changed her contact address, email, and phone number to mine for all her accounts.
    5. Kept a duplicate copy of her state ID, insurance cards, and such in my wallet — because she'd constantly lose hers.
    6. Made up some of her empty prescription bottles as "fake" pills for when she got suspicious and decided that she should administer her own medication. This thought was usually forgotten after a nap or even minutes, and then I could give her her actual prescription meds. But, kept the fake pill bottles in purse that she use to use for them, so she could keep it in her possession, if she wanted.

    ** I was listed as co-owner on the bank account, so technically I had permission to access the online banking. But, let's just say: do immediately create an online banking account for all her accounts, even if you are not co-owner. Easy to help her manage her finances.

    NOTE: I also had DPOA when doing all of those things, except having her declared an unfit driver. Anyone can file that report.

    CLOSE CALL: When I set my mother's maximum spend limit on her debit card, the bank sent her a postal letter about this change. She freaked out ; immediately went to the bank and closed that joint account and moved the money to a new single-owner account. (Even though the joint-account had been her idea. And, even though I'd spoken with the bank about her condition, about which they were well familiar. She constantly withdrew largish amounts of cash, which she'd promptly lose in her house.) When I moved her in with me, and had explained the security measure, we had to re-add me as co-owner to that new account. But, it was a near disaster.

  • Ci2Ci
    Ci2Ci Member Posts: 111
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    Very similar with my mother. When she came to live with me, I talked about her dementia diagnosis with her, and she wanted to learn more about it. I was very open and honest. She wasn't troubled by the diagnosis; maybe it actually provided some comfort knowing why she couldn't remember things. (They don't seem to ever grasp that their judgment has also deteriorated.) But, as she advanced, that reorientation and use of a FAQ for her wasn't as effective. Fast forward 1.5 years, and she often says "My mind isn't as sharp" or "My memory doesn't work as well", and I'll say: 'You are right. Your memory is crap. But, I am your Mind Stunt Double. I am your backup for that. I can fill in the blanks for you, and I manage your affairs for you, so you no longer need to worry about that.' She always says "Thank you. Bless you." Whew!

  • SusanB-dil
    SusanB-dil Member Posts: 1,149
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    edited September 27

    @Lucy C Please stop. A PWD cannot reason.

  • H1235
    H1235 Member Posts: 576
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    edited September 27

    You said “The lifelong high level of trust and loyalty that's always been there is still at work, and because of that level of trust, she's allowed us to handle medical and financial decisions, and is relieved to have us doing it” I feel you are implying that a solid relationship of trust is why this has worked for you. In my opinion you are simply very lucky that the part of her brain that affects her trust has not been damaged. Not everyone here is that fortunate. Calmly explaining the truth to a LO whose brain has been damaged to cause anger, suspicion and aggression will not work. When you talk about your grandma you say “she still showed Christ's Spirit and His love, and she was gentle to the end” again you were very fortunate! Regardless of their faith not everyone with dementia is so lucky. To suggest it is so simple to just be honest is not realistic for everyone. Having a parent scream holler and swear (mom never swore before dementia) at you is an incredibly difficult situation that I’m guessing you have not experienced. Your comments are self righteous. You imply that if the rest of use had a better relationship with our parent they would accept our honest answers and that if our LO were a kind a spiritual person they would not become angry and aggressive. There is no question that it is wrong to lie, but in my option it is also wrong to cause someone suffering and in pain even more anguish by telling them the truth (to ease your moral conscience).

  • SusanB-dil
    SusanB-dil Member Posts: 1,149
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    edited September 27

    @H1235 thank you.

    So true. I wasn't quite sure how to put that after being scolded.

    and none of us want arguments, we just want to support one another. If MIL really knew what she was to become, she would be mortified.

  • JeanneG
    JeanneG Member Posts: 6
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    since you have POA change the phone number the insurance company has to yours. I’ve done this with all mom’s doctors and it helps.

  • sandwichone123
    sandwichone123 Member Posts: 767
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    One of the things I've done to avoid lying is responding to the emotion of a statement rather than to its factual content. Usually I feel that the emotional component is the important part my loved one is trying to communicate, and getting caught up in the factual details of Dolly Parton or whether he can go home is a distraction.

  • KROONEY505
    KROONEY505 Member Posts: 2
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    Thank you for that response. My sister and I are finding our mother to be highly suspicious of even US, as we help her with daily things, take her to her appointments, shop for her, control her medications, etc. We've ALWAYS had a loving, caring, trusting relationship with her and it's only as her disease has progressed that she has become suspicious and mistrustful. It's only by keeping in mind that it is simply a symptom of her disease that makes it less painful and easier to deal with.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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