Mom likely has dementia but in denial; Dad paralyzed into inaction

ReallyScaredSon

I posted here just over a year ago, topic "Suspected demensia in Mom, but gets mean/angry if discussed; Lyme disease connection?".  (Sorry, not sure how to do links in this forum.)

The short version is: I'm 41, an only child, living about three hours from my parents.  They are both 66 and retired.  There is definitely something wrong with my Mom, it looks like some kind of dementia.  Her memory is noticeably bad, she's increasingly struggling with things like using a computer or TV remotes, she appears to have bogus memories (tells false stories), and she's increasingly at odds with my Dad.  I only really noticed about a year ago - I don't see them very often, and previously I always explained-away her quirks.  But, according to my Dad, this has been on-going for about six years now.

If that wasn't enough, she's either unaware of her mental decline, or, as I suspect, in complete and utter denial.  She will not see a doctor.  In fact, my Dad can't even suggest she has memory problems without a complete emotional blow-up.  It's the hot-button he avoids.  It's to the point that he's actually scared she might take her own life if he (or anyone else) confronted her about it.

I tried calling her PCP, and explaining the situation, but nothing ever came of that.  I'm not on Mom's HIPPA paperwork, so the doc can't tell me anything.  Before the pandemic, my Mom didn't even want my Dad to go into the doctor's office with her; and now the COVID rules explicitly disallow anyone but the actual patient in with the doc.  So I don't know if the doctor is simply ignoring my information, or that my Mom is refusing to discuss it.

My Dad and I are completely stuck as to what we should do.  He is barely able to talk to me about it, his only chance to call is when he's running errands.  They live in a rural area with lousy cell reception (reliable cell phone service is not within walking distance).  He's afraid to leave her alone for more than a few hours.

He called me in tears last night.  She got so mad at him that she told him to leave and never come back.  So he left for a while, and called me.  He said she's gotten noticeably worse in the last few weeks.

His previous plan had been to just wait it out until it got so bad she had to basically be committed.  Prior to last night's call, he said life wasn't too bad:  maybe one fight a week, but most days were neutral, with an occasional peppering of good times.  But I think there will be a long period before she needs to be institutionalized, but not manageable by my Dad alone.  If life continues like he described last night, he will wear himself ragged.

I feel so badly for the both of them, but I just don't know what to do.  Clearly my Dad is suffering, and I suspect my Mom is too.

Thanks for any thoughts or suggestions!

terei

I recommend that he get an appointment with a certified elder law attorney to explore his options.  If she refuses to see a doctor, you may have to wait for a crisis to move into action to necessitate a doctor seeing her.

This might happen if your mother becomes threatening or violent toward your father.  If that happens, he should call 911 + have her taken to an ER where your father should insist that she be transferred to a geriatric psych ward to be evaluated + probably medicated to address her behaviors.   She would probably be in a ward for about 2+ weeks til they can balance out her meds.

Your mom probably has early onset Alzheimer’s or other early onset dementia + this can advance quite quickly.  You + your father should discuss this + come up with a plan to care for her.  If she is uncooperative with him, (which is not uncommon) she may have to be placed where displays less animosity toward the people around her.

I sounds as if you understand that your father needs attention also.   If  finances are not an issue, keep in mind that both your parents have the right to have a calm, comfortable environment.  If that means she is in a facility, so be it.

BTW her inability to recognize her own deficits/illness is usually a part of the disease + not denial per se.   It is called anosognosia.  Your father may be help by reading The 36 Hour Day and other books readily available about dementia/Alzheimer’s.

jfkoc

You are already doing something terribly important...listening.

It might be helpful to look at potential action to take. 

1. Lab work. I would make certain the Dr knows your and your father's concerns. Lab work will rule out treatable causes of dementia that can be treated.

2. See what local resources are available. If you can't get cell phone there will probably not be many. Placement facilities, people to come to the house, day care.

3. Check to see if there is another carrier for the cell phone. ATT id not work at our home but Verizon did.

4. Formulate plan B so that if an emergency happens you know what you are going to do.

5. Learn how to communicate with a person who has dementia. Step one, stop having the memory conversation.

6. Learn how to create an environment that will help your mother.....calm, safe, routine, low stimulation etc.

We will be able to help by sharing what we have learned. Additionally there are online sites and books.

These things can be done simultaneously and you can do this...its not easy but you have a lot of people here to help.

Quilting brings calm

Your Dad needs to call her doctor and report her as being a danger to herself ( the fact that she may take her life if someone tries to discuss the memory issue). He needs to tell the nurse the same things he is telling you. As her spouse, his word carries more weight than yours at this point since the doctors office is stonewalling you.  If that doesn’t work, one of you needs to drive her to an ER or call 911 and report her as a danger to herself.   You have to be firm when you discuss your thoughts on this with the authorities.  No wishy-washy downplaying of the situation to where she can deny it and they let it slide.

A friends’ ex husband ( early stage dementia) keeps saying he wishes he could just die, etc.  a friend reported it via 911 and he was taken to the hospital by the police.  He was only held overnight but at least he was checked out.  

I also think that he can get around the patient only rule by telling them that he thinks she has dementia and needs a support person.   I have not been denied the ability to be in the room with my Mom during this Covid period precisely because she is cognitively impaired. 

ReallyScaredSon

Thank you everyone for the very helpful thoughts and suggestions!  I really appreciate it.

One big question I realized I have: is there ever a good time for anyone (me, my Dad, doctor) to confront my Mom about her mental decline?  As I mentioned above, my Dad learned long ago that topic is a hot button, and he avoids it completely.  That means, my Dad and everyone else, when around her, pretend like everything is fine.

If the answer is yes, she should be confronted: how do we know when the time is right?  And who should be the one to tell her?

Likewise, if the answer is no, then indeed (as some of you suggested), it feels like we basically have to wait for some major crisis to occur before anything meaningful can be done.  (I recognize there is some behind-the-scenes planning and work to be done.  But as for direct involvement with my Mom, it feels like that might have to wait.)

Thanks again!

harshedbuzz

ReallyScaredSon wrote:

One big question I realized I have: is there ever a good time for anyone (me, my Dad, doctor) to confront my Mom about her mental decline?  As I mentioned above, my Dad learned long ago that topic is a hot button, and he avoids it completely.  That means, my Dad and everyone else, when around her, pretend like everything is fine.

If the answer is yes, she should be confronted: how do we know when the time is right?  And who should be the one to tell her?

I can't imagine any scenario in which is would bring anything to the party. 

It is very likely your mom has anosognosia along with her dementia. 

Anosognosia: When Dementia Patients Can’t Recognize Their Impairment - AgingCare.com

Since you know this is a hot button topic for her, it needn't be mentioned.

Likewise, if the answer is no, then indeed (as some of you suggested), it feels like we basically have to wait for some major crisis to occur before anything meaningful can be done.  (I recognize there is some behind-the-scenes planning and work to be done.  But as for direct involvement with my Mom, it feels like that might have to wait.)

You and your dad need to reach out to her PCP and get her in for a screening. When I got a sense dad's doctor didn't believe the behavior I was reporting because dad was the consummate gentleman during office appointments, I sent the man a video I'd recorded of dad threatening me. It led to a change in medication to deal with his anxiety and the aggression it caused.

Without HIPAA signatures, the doctor can not communicate with you, but s/he should take your reports under advisement and do the screening.  At the very least, bloodwork to rule out treatable causes of dementia-like symptoms and perhaps imaging to rule out lesions should be done. My dad had mixed dementia- one of those was eminently treatable with vitamin therapy and lifestyle changes. When I was finally able to get him diagnosed because of a trip to the ER during a psychotic episode, treatment helped for a time until he started drinking/his Alzheimer's progressed. 

Dad's neurologist did share his diagnosis with him, but dad didn't believe it and later forgot all about it. Even though dad "knew", any time we needed to talk about behaviors or progression, we did so while dad was doing a paper test in another room or via the patient portal. 

If s/he won't play ball, as it were, you may need to come at this from another angle. While my parents blew off my concerns, I drafted a Plan B that could be put into play on the fly. Being rural, I would encourage you to look for resources for a diagnosis. I had my mom drive him to where I live during his breakdown because I wanted him seen at a world class memory center- it was a 3 hour drive for her but there was only one neurologist near them and that doc was more of a generalist. 

Thanks again!

M1

RSS, I'm just going to chime in to say that conversation with your mom about her deficits will probably never happen.  Several years ago when I realized my partner was declining, I thought the same thing you are, and thought that having her hear from our doctor that she had dementia would lead to some breakthrough moment.  Fortunately, our doc realized that was not the case and declined to have that conversation with her; rather, he talked to ME about how to cope with it.  He does ask her about her "memory" and has told her not to drive, and at one point we tried low doses of Aricept and Namenda, but she didn't tolerate either one.  Have not seen a neurologist, had neurocognitive testing, or any of it.  She's nearly 80, and she has multiple other medical problems, so we just didn't see the point, and there haven't been behavioral issues (at least yet) that have forced the issue.  She benefits from low-dose Seroquel at night which has helped with sleep fragmentation.

Your mom is obviously having behavioral issues that are quite different.  But I would just encourage you to get past the point of expecting that "you have dementia" conversation to happen.

I wish you well and I hope you can help your father too.  He may be having his own issues, and that's not uncommon also.  Remember, you can always GIVE her doctor information, even though he may not be able to respond back to you because of HIPPA--and I would encourage you do to that.

Cynbar

Even if you do try the "you have dementia " conversation, it is unlikely to go well or be productive. Most people with mid to late stage dementia (which is sounds like you mother has) think they are fine, and trying to convince them otherwise goes nowhere. In fact, it usually makes things worse, they get angry and agitated and will put up more walls. Her brain is broken, and the rules have changed --- you can't expect to reason with her anymore, or wait for her to process the situation. It is simply not going to happen.

What you and your dad need to do is change your approach with her. The roles have changed, you two need to do what you need to that will keep her safe and preserve your dad's sanity. The first thing I would do is see a certified elder law attorney, and don't take her with you . Get their legal planning done, if it isn't already. The lawyer will also help you with financial planning ----you need to figure out how much money is available for her care while protecting your dad, and consider a Medicaid application if this will be needed. These steps can take time, so get started soon. Second, I would look into getting a little help for your dad in the home, starting at just a few hours a week so it's not too overwhelming. Usually a "fiblet"  is needed to convince her, you will get advice here on what might work. And third, start researching facilities such as memory care, because this will be a lot for your dad to manage long term (probably impossible as she declines further." Finding the right facility where she will be well cared for is a gift of love, it's not having her committed but making sure she is safe. All of this is a process and doesn't happen overnight, but you need to do your homework and have a plan in place before a crisis hits. Good luck, and come here often for support and advice.

jfkoc

I say no to is there ever a good time. What possible good would it do. How can she handle having a fatal disease and even if you get through to her today she will not remember tomorrow.

When my husband seemed to have an inkeling (sp) that something was off I off handedly said that the "snapies" in out brains misfire or even forget to fire....said calmly and I waited to see if there was going to be a conversation. Never was.

You have a lot of company regarding getting your mother to the Dr. Make up something she will accept. Medicare/Social Security/Insurance requirement.

You are now in the land of Oz. Your mother is not coming back but you can join her and truthfully once I let go and got on my husband's page life was much nicer. I stopped worrying about a lot of stuff and instead became a companion. I watched more TV than you can imagine. I cooked with leftovers in mind and bought every kind of Swifter available. 

I will never regret the down time with my husband but it was a challenge to let go.

windyshores

I have never told my mother she has dementia and actively avoid telling her. There is no point , it is upsetting,  they cannot realize it, and they won't remember the conversation anyway.

Is there a local support group for you and/or your Dad, perhaps run by a council on aging?

Your mom needs to have two medical proxies, a primary and secondary. Has she done that?

If the doctor recognizes the dementia, he or she can invoke the proxy so that the proxy makes decisions.  (Also, you can write the doctor before appointments, they just cannot answer you.)

Someone also needs to have power of attorney and there should be another person on any bank accounts she might have.  If you need a lawyer for the P of A, get one.

Don't try to reason with her about the reasons for these documents. Try and come up with a fiblet of some sort, like this is just backup and that you have done them for yourself.

Has she had a Lyme test or been seen by a Lyme specialist? You mentioned that before. Since she is young, that could be an explanation- or not.

Is she still driving? Someone can tell her that over 65,she needs to do an evaluation (rehabs offer them) and they will take her license if she doesn't pass. They also do cognitive testing as part of the eval.

Geriatric psych. hospitals have their pros and cons. At any rate,  you don't need to use terms like "institutionalize."  There are assisted livings and memory care places that are set up to really benefit residents (but many cost a lot!).

For sure your father needs help.  Again a support group can offer exactly that: support as well as info.