Questions for MIL’s neurologist

[robnplunder]

Yeah the clueless BIL is frustrating. He says when the time comes, she can just move in with him. This is a joke

I laughed really hard at this. He has no idea how hard and time consuming it is to give needed care to someone like your MIL. I wish my mom could live with us but knowing her condition & her rather strong personality, it would end with disaster for all of us. Only the most patient, well trained person can be a suitable care giver to person with dementia. It's a 24 x 7 job which is why ALFs exist.



The best thing my sis did for the situation, she agreed to split the cost of ALF. DS was uneasy that I picked the most (but best) expensive of the 3 we evaluated but I didn't care. We could afford it and DM deserves the best care. DS lives 15 miles from DM and here we are driving 400 miles to take DM to doctor's appointments. You can't pick you family members. Groan.

 

[robnplunder]

Dad also was prescribed Aricept. It was very hard on him, gave him bad headaches and ill. His neurologist said it would take a few weeks for him to get used to it. Another week and I called the neurologist again. After a very frank and honest discussion, he admitted that the drug really had no effect. Fact is; Aricept and any other med is, at most, going to make zero difference on the progress of the disease. They prescribe it because it's available, but that it usually has no benefit, or if there is, it's not enough to be worth the side effects.

DM's neurologist told us the same thing and still prescribed a med. I am keeping an eye on any side effects by asking DM & her "floor" nurse about any possible symptoms (indigestion, etc). So far, so good.



And I should mention that DM had no health issues for the 3+ months she has been in the ALF. When she was living alone, she had frequent health related issue most of which the doctors could not find anything serious but still managed to prescribe more drugs. We put a stop to that nonsense by going to every one of her doctor's appointments and asking the right questions (why, what are side effects, what if she does not take them, ...). We also switched DM's main doctor to the one ALF assigned. He isn't so quick to prescribe another med. I think the combination of taking only the absolutely needed meds + eating meals at regular hours + hanging around other people improved her health and outlook to live longer/happier.

 

[Octogirl]

Aricept or other Cholin. inhibitors in the clinical trails demonstrate a delay in loss of ADLS...of about 1 year. However, when the longer term outcomes are reviewed (3-5 years) they do not change the eventual. course of the disease - if it is Alzheimer's.
There are other types of dementia, but alzheimer's is the most common.
Loss of judgment and poor insight (the use of heater for drying clothes, getting lost in familiar places) are common and not necessarily sx of psychosis. They are sx of the progression. Dementia is more than loss of memory - it includes loss of cognitive functions too, such as organizing, planning, foreseeing dangers

Agree with many others here that she needs assistance and it may be more useful to have an appt with a geriatric psychiatrist.
When DM friends are contacting you......that's a red flag !

 

[robnplunder]

Loss of judgment and poor insight (the use of heater for drying clothes, getting lost in familiar places) are common and not necessarily sx of psychosis. They are sx of the progression. Dementia is more than loss of memory - it includes loss of cognitive functions too, such as organizing, planning, foreseeing dangers

Agree with many others here that she needs assistance and it may be more useful to have an appt with a geriatric psychiatrist.
When DM friends are contacting you......that's a red flag !

+1.


With my mom, it was the short-term memory which is the most visible symptom. The movie Memento is not too far off from my mom's case. She has also lost other functions. She no longer can solve simple puzzles which she was able to do a few years ago. She stopped writing journals. She can't barely use her phone. The list keeps growing, slowly but surely. I must say, in the beginning, I was in denial and ignored some of the symptoms.

 

[Scuba]

Thanks to all who have commented. I really appreciate the support and great suggestions.

Is a geriatric psychiatrist a person one would visit once or twice, or regularly? She lives in a rural area 2 hours from a major city. Even the neurologist is 40 minutes away.

 

[MissMolly]

Thanks to all who have commented. I really appreciate the support and great suggestions.

Is a geriatric psychiatrist a person one would visit once or twice, or regularly? She lives in a rural area 2 hours from a major city. Even the neurologist is 40 minutes away.

I'm sure it varies and would probably be dependent on what medications he/she would have her on and the monitoring of those medications. My mom saw a geriatric psychiatrist monthly. She was on some pretty powerful meds for frontal lobe dementia and Alzheimer's. As soon as we would seem to get a good balance on her meds to where she would not be sleepy and could still interact with the world around her, then her dementia would get worse and we'd have to start juggling with the meds to find that sweet spot where she wasn't drugged out of her mind but yet was not totally out of control. The whole experience was just horrible. Not the psychiatrist's fault, just the whole sliding into dementia thing.

 

[Scuba]

I'm sure it varies and would probably be dependent on what medications he/she would have her on and the monitoring of those medications. My mom saw a geriatric psychiatrist monthly. She was on some pretty powerful meds for frontal lobe dementia and Alzheimer's. As soon as we would seem to get a good balance on her meds to where she would not be sleepy and could still interact with the world around her, then her dementia would get worse and we'd have to start juggling with the meds to find that sweet spot where she wasn't drugged out of her mind but yet was not totally out of control. The whole experience was just horrible. Not the psychiatrist's fault, just the whole sliding into dementia thing.

I never thought about this before ... small town living in a rural area has many benefits, but healthcare access is problematic. Other things we have been researching seem to not be available either - no Uber, no Lyft, no taxis, no local memory care facilities, no contractors who specialize in making homes safe for seniors, and the list goes on. Access to these things is just a given in a larger metropolitan area. OTOH, MIL knows everybody in town, and people look out for her in a way that might not happen in a larger town or city.

 

[skipro33]

My father was diagnosed to be non-ambulatory and his medical insurance sent physical therapist to the house. I imagine they would also send a psychiatrist if we asked. Maybe check your medical insurance to see so she wouldn't have to travel so far for medical visits.

Dad also got 'better' the longer he lived with us. For one thing, he was now taking all his meds on schedule. Before he moved in and I found out he wasn't taking them because he was forgetting, I'd call 3 times a day and talk him through taking them. Then I discovered he would lie to me about taking them. And lying about a lot of other stuff too. On a doctor visit, he was getting x-ray for his knees; arthritis. He passed out. Turned out he was severely dehydrated. 3 days in the hospital before they would let him go.

Once his 2nd wife passed away, I could take charge and took him in. The meds, the meals, proper hydration and proper hygiene has probably added years to his life if his wife had lived longer and he stayed with her. She wasn't strong enough to make him take meds, drink liquids, etc. So sad for her.

 

[ncbill]

Had the same situation with my father. I personally submitted to the DMV that his mental condition is such that he should not drive. DMV sent him paperwork requiring him to get a doctor's eval. He was pissed. I lied to him and told him it was one of his doctors that must have done this. Which brings me to this; the kindest thing you can do for your dementia diagnosed loved one is to lie to them. They no longer are able to think like we do and it will get worse. I got lots of local community help and education and the biggie I got out of it was that I needed to tell my father what would make him the calmest. If it's a lie, it's a lie of kindness.

When it was time for mom to stop driving (mysterious dents were appearing on the front & fenders of her car) I used a local hospital's program.

It's primary purpose is for those physically disabled who are trying to get back to being able to drive...but I was able to use their testing to convince mom that "officially" she shouldn't be driving anymore.

And Aricept was useless for her as well.

What about Namenda for the OP's loved one?

 

[skipro33]

When it was time for mom to stop driving (mysterious dents were appearing on the front & fenders of her car) I used a local hospital's program.

It's primary purpose is for those physically disabled who are trying to get back to being able to drive...but I was able to use their testing to convince mom that "officially" she shouldn't be driving anymore.

And Aricept was useless for her as well.

What about Namenda for the OP's loved one?

One of the most difficult things dealing with my dad is that he still thinks he's perfectly fine to drive and that we are all making way too big a deal out of what some quack doctor says. He also denies he has Alzheimers but will begrudgingly admit he has some short term memory loss. He can't remember what he ate, sitting at the table with a cleaned plate after a meal for example. He has long term memory loss too of course, but he can't remember he does. What started out as forgetting my wife's name but recognizing her as my wife as turned out to no longer recognizing her. He covers well, pretends he knows who she is, but the give-away is that he extends his hand for a handshake when he greets her, like you would meeting someone new, not a daughter-in-law of over 44 years.

Those with the disease will be very adept at covering their symptoms if they don't want you to know about them and most people will pretend not to see the holes in their act, hoping it's not going to get worse. But if you are able to notice signs and symptoms, it's pretty well advanced and they can no longer cover like they have been in the past. That's a sure sign it's time to get involved.

 

[Spock]

<examples and rant deleted>

POAs: While good to have, it is a very very small first step. Until the person is ruled by a court to be mentally incompetent, the person can withdrawal the POA if they get mad that you "stuck their nose into their business". Most financial institutions don't recognize them, even when trying to close fraudulent accounts or explore their LTC policy coverage. Even though I have healthcare POA, his PCP won't discuss his case with me due to HIPPA rules.

I'm spilling all of this to wake people up who think a financial and healthcare POA gives you the authority to do anything. If you had first hand experience of a medical professional or DMV or POAs helping with things, great for you. My experience is nothing can happen including taking his car keys, until I take Dad to court to get him declared incompetent and just hope he doesn't have one of his good days in front of the judge.


By all means, get the POAs in place as a starting point. But don't for a minute think you are done. A line in the trust about taking control when incompetent "as determined by letter from my Dr" is not any help if the Dr won't talk to the POA and requires multiple failed MMSEs. If you are not going to trust your trustee to make the "when its time" decision, you need a different trustee.

 

[robnplunder]

The last two posts describe possible progression of any dementia patient, including the OP's MIL. My mom's progression is similar to that of skipro33 although less severe. Not something to look forward to.


It's good to have this kind of threads around so that people can be aware as future patients, care givers, or decision makers.

 

[Brat]

Ask the physician if he knows of a social worker who can work with you and discuss the resources available.

 

[MichaelB]

Is a geriatric psychiatrist a person one would visit once or twice, or regularly? She lives in a rural area 2 hours from a major city. Even the neurologist is 40 minutes away.

It depends on the severity and rate of progression. Probably a minimum of every 6 months, more frequently if warranted and when changing meds.

There were other benefits from using the psychiatrist. She was very clear on lifestyle changes my mother had to make, such as not driving and allowing someone to stop by the house to check and help with meals, and it was more effective coming from a physician than from us.

We wanted to keep DM home as long as possible, the psychiatrist reviewed and provided feedback and suggestions on the plan de developed to do so. We had a number of sibling issues, and the psychiatrist’s opinion helped us resolve many of the numerous impasses and stalemates.

The psychiatrist also had a very good understanding of private and public resources that were available and how they could be used.

If you can’t get access to one, then Brat’s suggestion to find a social worker is probably the next thing to do. If I learned one thing dealing with my mother, it’s that you need professional help and family support to deal with this.

 

[Brat]

The advantage of the psychiatrist is that s/he is a prescribing professional and can work with the neurologist. Talk to the neurologist to find a psychiatrist, ideally one with a geriatric practice, they can work with. Next choice would be a social worker referral from the neurologist. Give the neurologist a heads-up about your concerns and the need to build a team before the appointment.

 

[Teacher Terry]

I had both financial and medical POA for a friend of mine with Alzheimer’s. I put her in a home and made all decisions with zero problems. However, she wasn’t with it enough to withdraw it. I also had no problems with a doctor not talking to me.

 

[ncbill]

<examples and rant deleted>

POAs: While good to have, it is a very very small first step. Until the person is ruled by a court to be mentally incompetent, the person can withdrawal the POA if they get mad that you "stuck their nose into their business". Most financial institutions don't recognize them, even when trying to close fraudulent accounts or explore their LTC policy coverage. Even though I have healthcare POA, his PCP won't discuss his case with me due to HIPPA rules.

I'm spilling all of this to wake people up who think a financial and healthcare POA gives you the authority to do anything. If you had first hand experience of a medical professional or DMV or POAs helping with things, great for you. My experience is nothing can happen including taking his car keys, until I take Dad to court to get him declared incompetent and just hope he doesn't have one of his good days in front of the judge.


By all means, get the POAs in place as a starting point. But don't for a minute think you are done. A line in the trust about taking control when incompetent "as determined by letter from my Dr" is not any help if the Dr won't talk to the POA and requires multiple failed MMSEs. If you are not going to trust your trustee to make the "when its time" decision, you need a different trustee.

I did some sneaky things even though I had the above documents.

Like changing mailing addresses (without telling her) to my address for critical things like bills, tax & financial statements after mom started literally tearing up her mail because she got mad that she couldn't either read it or understand it.

We also convinced her to setup a revocable living trust with her kids as co-trustees (not successor) & then used the financial POA to move everything into the trust, which really helped later on.

 

[Walt34]

I had both financial and medical POA for a friend of mine with Alzheimer’s. I put her in a home and made all decisions with zero problems. However, she wasn’t with it enough to withdraw it. I also had no problems with a doctor not talking to me.

Clearly it depends on the people involved. When DW was looking after her father she had no issues either. But FIL had lived in the same small town for ~40 years and they both knew everybody and their grandmothers. The bank president was typecast as George Baily right out of "It's a Wonderful Life" so smooth as silk there. Same as dealing with the local post office to get mail forwarded - no problem, and all they wanted was to photocopy the first page of the POA.

Others have reported stumbling blocks every inch of the way dealing with implacable bureaucrats, administrators and others of similar bent. I guess part of it is just the luck of the draw.

 

[robnplunder]

I did some sneaky things even though I had the above documents.

Like changing mailing addresses (without telling her) to my address for critical things like bills, tax & financial statements after mom started literally tearing up her mail because she got mad that she couldn't either read it or understand it.

We also convinced her to setup a revocable living trust with her kids as co-trustees (not successor) & then used the financial POA to move everything into the trust, which really helped later on.

There is very little choice but to be "creative." All DM doctor's mail, bank account info, etc. are delivered to my house now and I manage all the appointments, money transactions. Thanks, god, she is broke. I don't have to worry about managing her finance beyond a few simple things.

 

[skipro33]

<examples and rant deleted>

POAs: While good to have, it is a very very small first step. Until the person is ruled by a court to be mentally incompetent, the person can withdrawal the POA if they get mad that you "stuck their nose into their business". Most financial institutions don't recognize them, even when trying to close fraudulent accounts or explore their LTC policy coverage. Even though I have healthcare POA, his PCP won't discuss his case with me due to HIPPA rules.

I'm spilling all of this to wake people up who think a financial and healthcare POA gives you the authority to do anything. If you had first hand experience of a medical professional or DMV or POAs helping with things, great for you. My experience is nothing can happen including taking his car keys, until I take Dad to court to get him declared incompetent and just hope he doesn't have one of his good days in front of the judge.


By all means, get the POAs in place as a starting point. But don't for a minute think you are done. A line in the trust about taking control when incompetent "as determined by letter from my Dr" is not any help if the Dr won't talk to the POA and requires multiple failed MMSEs. If you are not going to trust your trustee to make the "when its time" decision, you need a different trustee.

From my personal experience, I can tell you I have a totally different result. I took my dad to the neurologist. He gave a 5 minute 'interview' with dad and gave us a diagnosis that his is in early stages of Alzheimers. Now, no one can diagnose for certain Alzheimers without examining the brain and that can't happen unless the person is dead. It's a judgement based on an observation. None the less, he was diagnosed with my and my brother encouraging the doc that we could help our dad more with than without this.

I have POA for both financial and medical on Dad. The abstracts are in his medical files. HIPAA laws, being what they are, would never allow me access to Dad's medical records or call the shots we do for him with his doctors if the POA and diagnosis didn't permit it.

At no time have we ever had to go to court to get the right to make any of Dad's medical decisions for him. In fact, I have consulted a lawyer for elder rights and she told me specifically not to as I would have to then make a financial accounting for every single penny of Dad's income and submit to even more personal information of my own to the court appointed advocate for my dad.

I think she called it a conservatorship, but I can't swear to that.


I can't say if this varies from state to state, but I'm in California if that matters.

What ever I have, and it's not court or otherwise legally confirmed, my dad's doctors and his banks do not challenge it in any way. When we visit the doctors, they address me, not my dad. I then talk to my dad, relaying the info from the doc, then back again. Like an interpreter after a fashion.

I have all his banking now in a joint account. I handle all his Social Security, pension and VA checks into and out of this joint account. I signed the contract for his residency to the retirement center he lives in. He didn't sign a thing. I only needed to submit a Form 602 (California) from his doctor.
All said and done, I'd say a diagnosis of dementia is what has allowed me to now completely take control of all my dad's medical and financial decisions.



Regarding driving license; in California you can indeed take away anyone's license simply by reporting an individual to the DMV that the person has medical issues and that the DMV better check on it. That's all I did and they sent a very detailed form for him to fill out. There was no way my dad could have done that, it was too detailed for him to understand. The DMV stated that if they don't get it back filled out in 90 days, his license is suspended.

After that, I disabled Dad's car, removing a couple fuses. He couldn't start the car. I told him I'd take it to get it fixed. I then sold it. Again, no problem with my name, not his on the title to sell with the abstract of the POA and the dementia diagnosis.
Dad threatened to go to a car dealer and just buy another. Fine and good luck with that. I'd a let him and I'm sure the poor salesman after the test ride would have found Jesus and would not have sold him a car. Ha!


I'd say you need a new doctor for your loved one. One who will aide you in getting the level of control to help out.

God bless and good luck. I hope my own experience gives you some leads or other help with moving forward on getting the help your are needing to care for your loved one.

 

[Scrapr]

From my personal experience, I can tell you I have a totally different result. I took my dad to the neurologist. He gave a 5 minute 'interview' with dad and gave us a diagnosis that his is in early stages of Alzheimers. Now, no one can diagnose for certain Alzheimers without examining the brain and that can't happen unless the person is dead. It's a judgement based on an observation. None the less, he was diagnosed with my and my brother encouraging the doc that we could help our dad more with than without this.

I have POA for both financial and medical on Dad. The abstracts are in his medical files. HIPAA laws, being what they are, would never allow me access to Dad's medical records or call the shots we do for him with his doctors if the POA and diagnosis didn't permit it.

At no time have we ever had to go to court to get the right to make any of Dad's medical decisions for him. In fact, I have consulted a lawyer for elder rights and she told me specifically not to as I would have to then make a financial accounting for every single penny of Dad's income and submit to even more personal information of my own to the court appointed advocate for my dad.

Our neighbor had to do a conservatorship for her dad. He had a major stroke and eventually wheelchair bound. She had to report finances to the court every year I think. The first few years were pretty tough but as she learned the ropes she got better at it

I think she called it a conservatorship, but I can't swear to that.


I can't say if this varies from state to state, but I'm in California if that matters.

What ever I have, and it's not court or otherwise legally confirmed, my dad's doctors and his banks do not challenge it in any way. When we visit the doctors, they address me, not my dad. I then talk to my dad, relaying the info from the doc, then back again. Like an interpreter after a fashion.

I have all his banking now in a joint account. I handle all his Social Security, pension and VA checks into and out of this joint account. I signed the contract for his residency to the retirement center he lives in. He didn't sign a thing. I only needed to submit a Form 602 (California) from his doctor.
All said and done, I'd say a diagnosis of dementia is what has allowed me to now completely take control of all my dad's medical and financial decisions.



Regarding driving license; in California you can indeed take away anyone's license simply by reporting an individual to the DMV that the person has medical issues and that the DMV better check on it. That's all I did and they sent a very detailed form for him to fill out. There was no way my dad could have done that, it was too detailed for him to understand. The DMV stated that if they don't get it back filled out in 90 days, his license is suspended.

After that, I disabled Dad's car, removing a couple fuses. He couldn't start the car. I told him I'd take it to get it fixed. I then sold it. Again, no problem with my name, not his on the title to sell with the abstract of the POA and the dementia diagnosis.
Dad threatened to go to a car dealer and just buy another. Fine and good luck with that. I'd a let him and I'm sure the poor salesman after the test ride would have found Jesus and would not have sold him a car. Ha!


I'd say you need a new doctor for your loved one. One who will aide you in getting the level of control to help out.

God bless and good luck. I hope my own experience gives you some leads or other help with moving forward on getting the help your are needing to care for your loved one.

skipro your experience mirrors ours. Once we got Mom & Dad away from the local PCP (quack) we started getting better Dx. There is a well known evaluation test with a clock in it. I think high score is 30. Their PCP gave them around a 24. The unbiased evaluator said 8 & 12.

We contacted DMV as well and Dad was to report to a town about 45 mins away for a drive test. There was no way he could do that. That was the end of that. Except that the smallish town they lived in was now remote without a car. My SIL went over every day to check on them. Plus some daily help from an aide
My uncle was a born salesman. Sold all his life. Great guy. After his kids took away his car somehow he got a rental car delivered to his home. Bear in mind he had no CC and no license. Kids got a call from authorities to come pick him up....from Canada! No idea how he made it past the border.LOL

 

[Teacher Terry]

I think sometimes people over reacted to issues just to get their parents off their plates. My friend was so bad that there was no choice. My Mom trusted us and lived alone until a week before she died. After reading these threads I am not giving someone permission to get rid of me.

 

[skipro33]

I think sometimes people over reacted to issues just to get their parents off their plates. My friend was so bad that there was no choice. My Mom trusted us and lived alone until a week before she died. After reading these threads I am not giving someone permission to get rid of me.

DAD??!!
How the heck did you get internet connection?!

But seriously, allowing my dad to live alone until a week before he died, he'd have been gone years ago. Today he's alive, he's healthy and he's as 'happy' as anyone in his condition could be.

I hope you and I both are able to keep our health, physical and mental intact to the week before we die. But I also hope there are people in my life that will protect me if I won't be able.

 

[REWahoo]

After reading these threads I am not giving someone permission to get rid of me.

Makes you wish you'd been nicer to your kids, eh?

 

[Teacher Terry]

All 3 of us used all our vacation and sick leave to make sure my mom had help when she needed it. I helped my mom care for my dad for 14 years and bought the house next door. I was the only one that helped during this time. But too many on this site are over zealous and just want the problem solved. Hopefully my kids will follow in my footsteps.