HELP Need Advice with Mother
 

Quick background, my mother was dx'd when she was 62 and in 3 years time she is in horrible shape. She has to take her meds every 3-4 hours or else they cause terrible stomach pain. She suffers from frequent panic attacks, almost all of which are based on rediculous fears of various stuff. She has a husband who works 60-70 hours/week and has about 35 hours of private in-home care. She can walk short 10-20' distance but usually confined to the wheelchair.

She swears that her husband has started lacing her apple sauce to make her incoherent and so she'll sign things unknowingly. I highly doubt he would do anything like that and I think it is one of her panic attacks. She wants to call the police to test her apple sauce, which im sure they wont. She doesnt want me to call her husband at all to dicuss her overall care and situation, thinking he'll do something drastic. What is there left to do?? I cant bring her to my home to live there is not room and i just got married 1 week ago...

I also could use any advice on how to get her in a retirement home, how to pay for it, etc and so on...

Thanks,
Steve

Do you know what meds she is on - all of them?
I'd check all the meds for interactions or not being taken properly..
Was she prone to panic attacks before the PD dx?

I'm guessing the husband is not your father, but can you talk with him about how he thinks mom is doing?
Or talk with the care nurses, Dr with your concerns.

She could have another condition as well as PD that's complicating things - emotional or otherwise.

Does she call you, or can you see her in person to be able to see how she is doing?

I don't know the law, if she is married I think he would be the one to do the nursing home thing , unless mom signs power of attorney & care to you... but maybe the others know more about the legal side of that.
And they might have other ideas about the situation.

I have a similar response as Jo-Mar. I was also diagnosed three years ago at age 62. The first med I was on, MiraPax, gave me all the side effects you describe, panic attacks, paranoia, bloating, constipation, disorientation, compulsive behavior, etc. Plus I have REM sleep behavior disorder, which became evident when I took that medication. I switched to ReQuip XL, started cycling and all those symptoms disappeared except the REM for which I take another medicine. I would recommend a second opinion from another PD doctor and would certainly think that it wouldn't hurt and might help to change medications.

Your story also emphasizes how different the PD experience is for each patient. Never does one size fit all.

Thanks for the responses so far. I'll post a list of what she takes on a daily basis and try and get feed back. She is such a difficult case because of her exstreme stomache sensitivity which really limits what medications she can take and how much of it. She has seen numerous PD doctors and is seeing one of the citys best at the University of Cincinnati. I have been having talks with him and his staff which are on going.

Before her dx she was definately a giant worry wart but i wouldnt say was prone to any type of anxiety disorder or panic attacks.

I went to see her yesterday and she was in bad shape mentally she really thinks her husband tried to posion her. I sampled the applesauce she claimed had a drug she was alergic to in it and it tasted the same as a freshly opened cup. She didnt believe me. She had a motive all dreamed up for why he would want to do such a thing i had an attorney friend explain to her the law which took away the motive. It took her 20 minutes and she had new motives... Her husband was understanding but obviously stressed and hurt because of the accusations. She even called the cops before i got there and a detective came over but he quickly determine her mental state.

This is so hard...

I am no expert, but have followed a lot of posts over the years. It could be that either the medication regime does not work for her, or she is overmedicated. As she is not that old, it could be one of her medications causing the confusion.
Adjusting meds for optimum benefit is hard, and takes time, and it does not always go smoothly. I would get back to the neuro and discuss this with him as early as possible, and in as much detail.

Best wishes
Lindy

Your mother's behavior brings back really painful memories of the drama that occurred in my home when I was in my early teens, back in the 1950's. My mother, whose Parkinson's had been diagnosed more than a decade earlier, began exhibiting florid paranoid behavior which was totally uncharacteristic of her. This continued off and on for the balance of her life, some twenty-five years.
Needless to say, the home atmosphere that this aspect of her illness created kept the family feeling as if we were walking on eggs.

Knowing what I now know, I attribute her behavior to the dementia which often develops in PD.

I'm so sorry for what you and your family are going through.

My best wishes,

Robert

another idea
 

Has anyone considered another cause for the crazy thoughts? If there is any problem with liver function, the drug will stay in the body much longer than normal and be much stronger than usual. Plus, this is common in the elderly regardless of whether the liver is functioning optimally.

I dont' want to give false hope, but recently a doc prescribed a drug for a family member (nonPD but with known liver problems) and within 2 days cognitive issues were surfacing. Within a day of removing the drug, back to normal. The whole ordeal was a really scary four days, particularly so because we thought our loved one had had a stroke, but the doc found no indication of that and in fact, she passed the little neuro exam the doc did, it was so weird.

The condition is called Hepatic Encephalopathy and can be caused by many things including a drug, electrolyte imbalance (anyone taking diurhetics? My family member was and that just made things way worse...) and several others. Google it and see if maybe this might help your family. Note: it also might not be just one drug, but the interaction of multiple drugs that is causing the problem.

The good news is that it is reversible IF FOUND IN TIME. If not, the person will slip into a coma and die. Don't rely on docs to know about this: our doc had no clue but at least was willing to be educated.

Here is a list of meds she currently takes.
Carb/Levo ER 25/100
Clonazepam 1mg
Lorazepam 1mg
Dicyclomine 10mg
Omeprazole 40mg
Zolpidem 10 mg
Oxycodone 5mg
Azilect 1mg

Im not sure how often she takes most but i do know she take the carb/levo every 3 - 3.5 hours. She used to be able to take the immediate release less often until the stomach problems started.

ask your pharmacist?
 

I don't know enough about all of these drugs to say one way or the other about any of them individually or in combination, so I'd suggest asking a good pharmacist, they are incredibly knowledgeable and usually very helpful. They, more than the docs, seem to know most about drugs, side effects, combinations, etc. I've actually asked a pharmacist what drug could be taken for this or that instead of what is currently being taken and gotten a drug recommendation, then told the doc that's what we wanted to try and he scripted it. It's imiportant to have a doc who's willing to be educated and open to suggestions, of course. This approach can save a lot of time "trying" a spectrum of drugs that may or may not work for a particular person.

Good idea , that would be much simpler than trying to do a search on each one, or trying to add them all in to an drug interaction checker online.

if you want to try the interaction checkers here is a list of some-
http://neurotalk.psychcentral.com/post119701-16.html

brohar,

I'm not a doctor, but I notice that you write that your mother has stomach problems.

There is a school of thought that h. pylori, for instance, can cause PD progression to accelerate. It is also thought by some that it affects the uptake of levodopa. It is worth considering other gut micro-flora as well.

John

Is it also facile to think that the stomach problems are a PD thing, as in being a symptom of PD, might they be a cause of some of your mothers problems?

Johnt's comments are what many, some even in the medical profession, think, we have no way of knowing yet...... it is worth looking into.....

There is something that happens when people have a chronic condition, and that is that everything is assumed to be part of that condition, or a symptom of it, sometimes we have to remind ourselves that we can get other things, it is easy to forget because PD hits us in such a pervasive way.

It is well known for instance that urinary tract infections can cause conditions like MS, and PD to become worse until they are treated properly. Remove the infection - and inflammatory process - and the neurological condition improves.

It might be worth checking....

You mentioned that your mother could take the IR tablets 'less often' until the stomach problems started..... a connection perhaps to some of the other things.....

First my sympathies for what sounds very difficult. PD is a movement disorder though and this mostly mental reaction esp. the paranoia makes it likely this isn't the PD causing her behavior. I suggest getting your mom in asap for a second opinion on her diagnosis and her medicine. Many drugs (especially sinemet) make people hallucinate, get paranoid etc. My ex MIL had a very similar reaction to pain meds and general anesthesia. She called at 3AM telling us the nurse was trying to kill her.

My Grandmother kept telling my mom she was afraid she'd trip on the orange cat in her room at her nursing home. Most of the family dismissed it. Sure enough there was a cat that frequented her room. My mom finally saw it. Part of her story could be true. Maybe she's having a reaction to food that makes her sick. Many PD meds are better on an empty stomach or they don't work, or she could be getting an overdose randomly happens on the same dose of sinemet for me. Protein and sinemet don't mix well. Read the warnings and side effects and what meds not to mix for all of her drugs. Many docs - including mine mixed what clearly stated on the internet is bad to mix. Diet is very important with PD.

I also have acid reflux so many meds made me very sick. It's impossible to understand me if I get od'd on sinemet. I sound drunk and psychotic but my thoughts are normal. I just can NOT communicate well. It can happen to anyone, it's one of MJ Fox's problems and most people with sinemet or agonist treated PD. Sinemet just isn't a perfect replacement for dopamine; hence side effects. It scared the heck out of my parents the first time. Plus I get low blood sugar and don't make sense-entirely different issue. My diabetic mom will argue she's fine sometimes when she's crashing. Could she have diabetic or hypoglycemia issues?

Doctors (more often than we like to think) over-medicate some people or she may be having a bad reaction to just one drug. I have one friend that became violent when given xanax to calm him down during a heart attack. If she's having panic attacks maybe they are over prescribing drugs to combat them or giving her a drug she's having a reaction to. OR that doc doesn't know PD drugs. Many drugs that calm people down have the opposite effect on some people, make them more excited and unreasonable, or interact with other medication.

PD drugs are some VERY serious drugs, they can be deadly as I am discovering in trying to quit or just taking them. Any one drug could be causing these issues or some badly mixed. PD typically ESP. after only three years doesn't do this.

There is a disputed dementia issue but usually in very advanced cases with much older people. After three years it's frankly very unlikely. This sounds like meds.

Frankly if she's this much worse in 3 years I would have her at other doctors IMMEDIATELY for second and third opinions. PD for the most part is a disease that does not crash in and disable people extraordinarily fast. Being 50 years old and having lived with PD for 10 years I recently found out that I didn't have PD at all. It was all caused by sinemet, the main drug used to treat it. If used inappropriately it can devastate people. I'm struggling to get off the drugs.

If you read the product warning information especially when mixed with other drugs you might have another look at what is going on with your mom. Her life in a "home" right now (unless she's a danger to herself) will be a poor quality one. Most of the people there will be 30+ years her senior and her social life will be horrible. Her decline will be swift. The woman that I worked with to help evaluate my long term care plans was very clear on the effect many younger people experience when being placed in "homes" before they are ready or before it was appropriate. My ex was trying to get me put into a home to get my part of our divorce settlement. This is not a way to go until you've exhausted all other resorts or more than one doctor agrees.

A friend's dad recently died of Alzheimer's. There are appropriate times for this level of care but this doesn't sound like it unless there is much you didn't relay. To qualify for coverage he had to be certified a danger to himself or 6 mos from death.

I do sympathize but this just sounds very atypical. Have you spoken with both of your parents together about this or at least your mom's husband? Asked what they both think? Does she want to go to a home?

READ about the psychiatric side effects of some of the meds she's on. I KNOW how devastating sinemet alone can be. I also had HORRIBLE reactions to mirapex (which is the drug commercial you see on TV with all the warnings about OCD behavior, gambling, sexual side effects, psychosis, hallucinations (visual, auditory, smell). Many of the other drugs cause serious enough side effects that people need serious psychiatric drugs. Is she seeing a psychiatrist? If not she needs to be evaluated by one familiar with movement disorders. This could all be very treatable.

I'm only a little younger than your mom and this chills me to think that she could be over medicated and really have no idea. Then be placed somewhere she might not belong due to a bad doctor. One doc insisted I needed immediate brain surgery...he was the one that misdiagnosed me.

To do less than a very thorough investigation with one or two MORE DIFFERENT doctors' opinions is to do your mom a big disservice. These are serious drugs and some very small changes could give your mom back herself. I sure wouldn't want my family putting me somewhere when I really needed their help to be sure my medication had not robbed me of a normal life. I heard another story this week from a friend who thought her husband was in end stage Alzheimer's only to find he was misdiagnosed and very over-medicated.

I know you just got married and these things are the last you want to deal with at such a time. Your Mom needs and deserves your best. We all must care for our parents at some level eventually. They kept us alive when we were helpless. We owe them the same even when timing is bad.

The type of care you're talking about is VERY EXPENSIVE if she doesn't have existing log term care insurance. She is not insurable now for new policies. This may not be feasible regardless. I urge you to get her re-evaluated and check your care options at the very least. This could have a very simple solution like meds change. Some day you might be in the same spot. Think what you would like done. We ALL get old & sick-I think we'd all like to fight for a chance if there is one.

I found a doctor that said he could cure a PSA of 50 when my Dad had prostate cancer. Most said this was fatal. He was cured and I still have my Dad. I beat cancer too at age 30 and I beat PD.

I hope you find a good ending.