Questions for MIL’s neurologist

[Scuba]

MIL has been on Aricept for dementia. Her memory has been getting worse and she tried a higher dose, but had nightmares so she went back to the lower dose. We live across the country but are making a trip to her and accompanying her to her next neurologist appointment. We don’t have much experience with this and would appreciate help identifying what questions we should ask. She knows her memory is getting worse, but is in denial about her capabilities. According to several local close friends, she is declining and needs help.

Here are the ones we’ve thought of:

- What is her actual diagnosis?
- What rate of progression is likely?
- Is there another drug she could take that might be better than Aricept?
- What about driving in her mental state? Should she be assessed?
- How can her living environment be made safer for her? She lives alone in a cottage now.

Thoughts?

 

[robnplunder]

They are similar questions I've asked DM's neurologist. Good one will run a battery of tests and scans, and will lay things out for you. This will lead you to ask pertinent questions. So, I won't sweat it. Listen carefully, and ask pertinent follow up questions. Good luck and best wishes.

 

[Scuba]

They are similar questions I've asked DM's neurologist. Good one will run a battery of tests and scans, and will lay things out for you. This will lead you to ask pertinent questions. So, I won't sweat it. Listen carefully, and ask pertinent follow up questions. Good luck and best wishes.

Thanks. He may have already done this but she hasn’t shared that with us.

 

[robnplunder]

Be sure to ask for side effects for any medicine he prescribes. Side effects were one of the main concerns from DM's neurologist. Side effects may be worse than what the medicine is trying to fix, especially, in the case of dementia.

 

[Bamaman]

We have found that living long distance from aging parents is more than difficult. But being across the country would be even worse for obvious reasons.

The big question is her living alone a threat to her safety?
Does she need to go ahead and make a lifestyle change to assisted living now?
Should she move closer to loved ones where they can closer monitor her needs?
And is it time for her to lose her car keys?

These are all issues that need to be addressed now with physicians--while she has some mental facilities. Decisions are tough, but they don't get any easier with time and further mental deterioration.

We hear enough true stories about parents with cars being discovered in Walmarts 3 hours away and no idea where they are and how to return home.

 

[ivinsfan]

OP does your MIL have a POA and a health care directive in place? These things take on urgency when someone is mentally declining. There is a probably a day coming when a lawyer will no longer draw up papers for her as she won't be mentally competent. I'd make this priority number one.

 

[Scuba]

Thanks for the responses so far. I believe she does have a POA and HC directive, but it’s a good idea to confirm that. A few recent examples from her friends concern us greatly:
- She put some clothing on an open flame heater to dry it. Luckily she was awake but the clothing did get singed. If she had fallen asleep, the outcome could have been disastrous.
- She ran a red light on the way to a restaurant last week and didn’t even realize it.
- Twice in the last few months, she drove to a nearby town and got disoriented. Once a police officer helped her find her car. Once she had to call someone to come get her and help her find her car.

DH’s brother lives in the same town as she does. However he is the eternal optimist and he dismisses these and similar incidents and insists that she’s fine. Meanwhile 4 of her closest friends have all noticed deterioration and have contacted us because DBIL isn’t taking this seriously. DH & I have tried having serious conversations about this with DBIL, but DBIL just blows it off. He owns two businesses and has a very active dating life, so we think perhaps he doesn’t want to deal with this. Very frustrating ... he is just reinforcing her stance that she’s fine, everyone forgets things.

We will be visiting in 11 days. Hopefully we can help her make some decisions while she still can do this for herself.

 

[MichaelB]

MIL has been on Aricept for dementia. Her memory has been getting worse and she tried a higher dose, but had nightmares so she went back to the lower dose. We live across the country but are making a trip to her and accompanying her to her next neurologist appointment. We don’t have much experience with this and would appreciate help identifying what questions we should ask. She knows her memory is getting worse, but is in denial about her capabilities. According to several local close friends, she is declining and needs help.

Here are the ones we’ve thought of:

- What is her actual diagnosis?
- What rate of progression is likely?
- Is there another drug she could take that might be better than Aricept?
- What about driving in her mental state? Should she be assessed?
- How can her living environment be made safer for her? She lives alone in a cottage now.

Thoughts?

Sorry to hear about your DMs condition. My DM was diagnosed 7 years ago, and I dealt with all her care needs for 4 years. She then moved to an ALF, where she lives comfortably today.

The neurologist was instrumental in diagnosing her AD but not very helpful after that. He monitored her condition and progress but was not concerned with small changes, day to day matters and her anxiety. I found that a geriatric psychiatrist was much more helpful in three ways. First, diagnosing and treating anxiety. Second, monitoring the disease progression and how it impacted her cognitive functioning. Third, helping assess her ability to continue at home.

Living alone and driving are probably not good ideas, but you really need a medically qualified opinion. As Bamaman and Ivinsfan mentioned, you can help be assessing her safety, both physical and financial, and start looking into measures to improve both.

Many counties have programs to assist seniors living at home. Looking to see what is available for her may help.

 

[nhcycling]

I’m sorry, this is difficult for all. There’s a lot of good suggestions on what to ask her doctor/memory care team when you’re visiting. My suggestion is to ask the tough questions: can she safely be living alone now given what you’ve heard, if not what do you suggest; should she be driving now; what are all the medications available for her diagnosis, what is the diagnosis, what did her cat scan and MRI show; what are the next steps as the disease progresses ...

 

[pacergal]

OP--much good info in above posts.
A reminder, if the drs office does not already have an ROI in place, make sure to get one signed. That way, you are able to call and discuss anything over the phone if further questions, problems arise.

 

[OldShooter]

OP does your MIL have a POA and a health care directive in place? These things take on urgency when someone is mentally declining. There is a probably a day coming when a lawyer will no longer draw up papers for her as she won't be mentally competent. I'd make this priority number one.

+1

Also, and important, an up-to-date estate plan and a will.

 

[Texas Proud]

For the things you described on driving, she should stop today...


Do not let her drive again... it can lead to a disaster and even the death of her or some innocent person...


It was only after my mom agreed to stop driving did we find out that she had some problems you mention about knowing where to drive and where she parked... we were lucky that somebody helped her, but that is not a for sure thing...


Is there other options for her to get around? We lived close so did take her places, but we also hired someone to drive her around 3 days a week to go to the gym and other places..

 

[braumeister]

- She ran a red light on the way to a restaurant last week and didn’t even realize it.
- Twice in the last few months, she drove to a nearby town and got disoriented. Once a police officer helped her find her car. Once she had to call someone to come get her and help her find her car.

Do not let her drive again... it can lead to a disaster and even the death of her or some innocent person.

I have to agree. That sounds like it's past the point where you can be diplomatic and ease her out of driving. No matter how hard it is (and it can be extremely hard), you will probably have to be the parent in this situation. Surely there are alternative modes of transportation she can use.

 

[spncity]

Besides scans, it would be nice if she could be tested by a neuro-psychologist. It's about a 90-minute test. While she's in the test, give a page of notes about the driving and clothing incident to a staff member to hand to the doctor in a confidential folder.

But to get such an appointment, you'd probably need to book now to get it in while you're there.

Remember that banks/financial institutions may not accept a POA unless she hands it to the bank herself.


And if there's lots of junk mail/sweepstakes mail coming, she may be involved in being scammed. Or if the phone is ringing off the hook.

 

[robnplunder]

- She put some clothing on an open flame heater to dry it. Luckily she was awake but the clothing did get singed. If she had fallen asleep, the outcome could have been disastrous.
- She ran a red light on the way to a restaurant last week and didn’t even realize it.
- Twice in the last few months, she drove to a nearby town and got disoriented. Once a police officer helped her find her car. Once she had to call someone to come get her and help her find her car.

Any of these could have led to fatal disaster. It's likely that she can't live alone without close attention. My mom got lost while driving, too, and I had to take her car away. She resented it for months and made me feel terrible about it. But it had to be done. Someone has to do the unpopular, hard work.



My sister who lives in the same city with DM was just like your DBIL. She was nonchalant about it and didn't do anything about the situation. Instead, we drove back and forth (about 400 miles) to see DM doctors, and eventually moved her to assisted living place. It turned out ok for us as we didn't have to have a separate battle with DS (to convince her, to get her to help when she is so unwilling). I hope you have better luck with DBIL in reaching a common goal in this situation. Having numbers help when taking care of dementia parent.

 

[Scuba]

Thanks for all of your input. You have made several great points that we will add to our list.

With respect to alternative transportation, her local friends have told us there are no taxis, Uber, Lyft, or public transportation. Not sure if this is true but we can assess when we visit. If she moved to AL, they no doubt help residents get to medical appointments and take them on outings. If she stays at home, we are wondering if a local person could be hired to drive her s few times per week. Surely there must be some options, although she does live in a really small town.

 

[skipro33]

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.

Dad's neurologist easily gave him a diagnosis of Alzheimer's. This made it very easy for me to take over all his care and finances as I have durable power of attorney for both those.

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. I took Dad off it and he was much happier. At this point, that is the goal; make dad as happy and comfortable as I can get him because when he's not, it's heartbreaking.

You are in a very difficult point now with your MIL. She can not safely live on her own nor drive and that means starting now. I equate it to wearing seat belts; you just never know when you'll need it, but when you do, it is usually a matter of life or death. The worst thing to happen is if she takes out anyone else besides harming or killing herself. If anyone is, and they or their survivor family finds out her medical condition, that family knew it, doctors knew it, had the authority to do something about it and didn't, could end up being financially liable.

My dad lived with us for about two years and while I am glad I did it, in the end, we had to get him his own place at a care facility. I could not completely Dad-proof our home and it was just too risky to keep him here without someone with eyes-on all the time. Even heating a cup of coffee in the mircrowave can be dangerous. He put a cup in and instead of 1 minute, he put in 10 minutes. The coffee boiled away and the residue caught fire. Still can smell burnt coffee in the microwave when I open the door, so it will be replaced. He's gotten into the freezer and ate the chicken scraps; giblets/fat/etc from a whole chicken that had been prepared for a dinner and these were put in the freezer until garbage pick up day. I found him in his chair, reading a book and munching on what I thought was a snack. I looked closer and it was the raw chicken parts from the freezer. I can't yell at him about it, can't even try to explain what he did was wrong or in the future he'll just hide his activities. Just take it away, give him a TUMS and hope for the best.

Make sure when you talk to her doctors that you tell them her current living conditions and to be honest and frank with you regarding the safety of this and future changes for her living conditions. If she's not there yet; needing care giving, she will very, very soon. It's better to act ahead of the need than to react to bad situations in the future.

Remember this; if she's living alone and there is an emergency, could she get out in time? At any time of the day or night? Or is there a question about that. If there is any doubt, she probably should not be living on her own.

 

[Scuba]

Her situation is tricky because I don’t think she needs help with ADL’s (grooming, eating, toileting, transferring, bathing, dressing). However she does intermittently do unsafe things like trying to dry a sweater on an open flame heater. When we are there, we will definitely explore alternative transportation. From what her friends say, she shouldn’t be driving, but as long as she lives where she does, she has to have some form of transportation because there is nothing within walking distance. Perhaps we will send in the DMV form. We haven’t yet as we haven’t seen it for ourselves and we know she can’t stay where she is if she can’t drive.

Hats off to all of you who have been through this with a parent. Definitely a difficult situation, and being across the country doesn’t help.

 

[Brat]

This may be the ideal time for her to move to assisted living. Involve the son pointing out that if she has a medical or other emergency he would need to deal with it because he is closest, surely he isn't interested in moving in with her to care for her. You don't want him to undermine a care plan. Ask where her friends went at this point in their lives. There are resources online from which to develop a list ranging from Adult Foster Care (Bed and Board in CA) that are certified and inspected by the health department to continuing care facilities (medicare posts inspection reports for nursing facilities).

Once you know her situation and have researched the options discuss it with the son then all meet with her.

Been there done that with a sister who was clueless.

 

[EastWest Gal]

Drying something on an “open flame heater” makes her a danger to herself and others. But, I’m also concerned that this is something other than Alzheimer ‘s. This sounds like psychosis, not necessarily dementia. She might have an undiagnosed and possibly treatable problem.

Small cell lung cancer, neuroendocrine cancers, and cancers metastasizing to the brain may cause psychosis in people with no previous history of mental illness. She needs a thorough evaluation. My mom developed psychosis at the end of her life. Initially it was thought to be steroid induced, but that was only part of the story. She had small cell lung cancer diagnosed 4 months before she died. But getting her off the steroids and onto antipsychotics allowed us to say goodbye to the person who had been my mom, not what the steroids and cancer had caused her to become.

 

[Scuba]

This may be the ideal time for her to move to assisted living. Involve the son pointing out that if she has a medical or other emergency he would need to deal with it because he is closest, surely he isn't interested in moving in with her to care for her. You don't want him to undermine a care plan. Ask where her friends went at this point in their lives. There are resources online from which to develop a list ranging from Adult Foster Care (Bed and Board in CA) that are certified and inspected by the health department to continuing care facilities (medicare posts inspection reports for nursing facilities).

Once you know her situation and have researched the options discuss it with the son then all meet with her.

Been there done that with a sister who was clueless.

Yeah the clueless BIL is frustrating. He says when the time comes, she can just move in with him. This is a joke because he works at his two businesses most of the time, and when he’s not working, he is dating and courting women. I have lost count of his relationships. He obviously is clueless about what it takes to care for an aging parent if he thinks his lifestyle works for having her live with him.

There is an ALF in her town that she’s been to and likes. We need to verify that she can afford it. However she is thinking this is many years out, not anytime soon. It would likely be good for her as she could walk to many restaurants she enjoys. We are going to check it out when we’re visiting.

 

[Scuba]

Drying something on an “open flame heater” makes her a danger to herself and others. But, I’m also concerned that this is something other than Alzheimer ‘s. This sounds like psychosis, not necessarily dementia. She might have an undiagnosed and possibly treatable problem.

Small cell lung cancer, neuroendocrine cancers, and cancers metastasizing to the brain may cause psychosis in people with no previous history of mental illness. She needs a thorough evaluation. My mom developed psychosis at the end of her life. Initially it was thought to be steroid induced, but that was only part of the story. She had small cell lung cancer diagnosed 4 months before she died. But getting her off the steroids and onto antipsychotics allowed us to say goodbye to the person who had been my mom, not what the steroids and cancer had caused her to become.

Good point. She says her physical exam results are very good but we don’t know what exactly they’re testing for.

 

[6miths]

Sorry to hear of your trials. I am sure that many can identify with your situation. My DM is the last of the grandparents alive and she is still living alone in the family home but not without a few relatively minor issues. Fortunately, she has daughter and son not far away. Lots of good advice above. If you have not already read it, I would suggest Atul Gawande's book 'Being Mortal'. Personally I think it should be read by everyone. All the best.

 

[Teacher Terry]

If she wants to move it would be great. If not she may decline quickly if forced. This happened to my friend within 6 weeks of being forced into one because her husband was dying. No alternative but it was horrible.

 

[Patricia Lyn]

Dear OP, I feel so much for you and your family! I went through something similar with my mom. We ended up going and getting her from another state and moving her in with us until I could find suitable placement for her. It wasn’t easy. Family members were angry with us, she was angry, it was hard to find a good assisted living home for her. But we ended up finding a good place close to our house. As another poster said, sometimes you have to make unpopular decisions and you never really know if you could or should wait another 6 months, etc...But if it makes it easier, I believe there is no right or wrong in this situation. You just do the best you can and trust that you are looking out for her best interests.