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My MIL has had a Parkinson's Disease diagnosis for 7 years... She claims her dr. never discussed stages or gave her any idea how advanced she is with PD. I have read everything I can find and I know we won't have good answers to my questions until she sees her Dr. again... I'm just wondering if anybody else has dealt with this too...



When it all started she was delusional and making wild accusations as well as the beginning of tremors. I'm not sure her Dr. was made aware of her cognitive issues at the time she was diagnosed. She refuses to take the meds prescribed for PD because she believes her Dr. is trying to kill her. We will be accompanying her to her next appointment and maybe then we will have the answers to help us better understand how to help her.
Her symptoms as of now are:
constipation, tremors of the right hand and mouth, drooling, change in posture, constant running nose, altered (quiet) speech, coughing while trying to eat, stiffness, she can no longer write due to tremor, she shows no emotion on her face, she keeps her head dropped, apathy, delusions, paranoia, drastic weight loss, repeating herself, she keeps losing her keys and being locked out of things, forgot how to operate her washing machine and she seems argumentative most of the time. She is lucid most of the time but she makes strange comments about every 20 minutes and does have times that she is not lucid. She is still able to walk unassisted and lives alone....
I am wondering if we should be preparing to hear that she has LBD. ( She doesn't have a UTI.. she has been having these times of confusion and believing family is stealing from her for 7 years) She is 70 years old.

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Welcome to the forum. Just chiming in with what everyone has said about giving her doctor a heads up and getting the PoA in place as quickly as possible.

If you know the doctor you can drop by her office a day or two before the appt and explain the receptionist that this is confidential information that the doctor must see prior to your Mom's appt ( as pushed as doctors are these days she will most likely not have a chance to read it until the day of the appt) but if she even gets it an hour beforehand it will give her time to evaluate and plan how she wants to organize the appointment.

Re: securing the PoA.. it could be a struggle because she will assume that you are attempting to take her rights away and for her it will be one more sign that she might be losing control. One of the most frightening things about all forms of dementia is that the person realizes something is not right and that they are losing themselves! Absolutely terrifying to anyone.

You really need to have an attorney do this for you. If you explain the situation to them they will have the papers all drawn up. Sometimes you have to constantly ask Mom to sign. I did for over a month and was rejected until one day she said yes. I was at that attorney office in about 5 minutes.

If you are fairly friendly with an attorney you can clue him/her in and perhaps they will participate (my son who is an attorney has done this for a number of people) and the scenario has worked for a few of my clients. One and hubby and maybe a sibling if you have one, announce that you are going to make out your wills and advance directives and pick up some nice take out afterward. You ask, "hey, Mom. You want to join us while we are all doing this? Now this charade does not always work but it has worked in quite a few cases although the planning and staging were reminiscent of a Broadway play. Lawyer who is in on the game (and unless he is my son), will charge more for this, has fake paper work for the family but ask them the usual questions. After the first person has gone, Mom sometimes lets her guard down and answers the attorney questions and signs just like the first person. Next people hurry along so they can get to the take out. Now no attorney is going to let her sign PoA forms if she appears to be incompetent so I'm hoping that you have not passed the line in the sand for her.

If she refuses to assign a PoA and she has be judged incompetent, unfortunately this is nothing you can do but wait for the inevitable disaster.

And as an aside.... make sure you and hubby have your own PoAs and advanced directives in place.... now.
Wishing you good luck on this new part of your journey. Please keep up updated on the status and outcome of things. This is a wonderful forum ... a great place to ask for opinions and just to vent when needed.
Peace!
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HoneyB92 Feb 7, 2024
Thank you so much, Geddyupgo! You have some great ideas and I will be trying to figure out how to do just what you (and others) advised. I think you are 100% correct that she would never sign a POA but we will do our best to convince her. She hasn't been judged incompetent. As far as we know she was only diagnosed with PD. I don't think she realizes she has cognitive problems as well.. and that is making it tricky for us to figure out what to do. For instance, I know she absolutely should NOT be driving a car but I have no idea how we can stop her if it is her car and she has a valid license. I feel that she really shouldn't be living alone but she does have times of lucidity and she doesn't realize the times she doesn't so how can we force her to do something different? I have so many questions. We are willing to do anything to help her but we don't know what we are supposed to do. If we went to her house and demanded her keys, telling her she can no longer drive her car she would react badly and I doubt she would even talk to us or answer her door when we came to her house. I don't care if she gets mad at us, the point i'm making or the question I have is how can we legally do that? I mean if we went to her house and she wouldnt open the door we would have no choice but to leave, we don't have a key to her house and she would 10000% try to have us arrested if we just got in there to check on her. She is very suspicious of everyone (us included) so in order for us to take control of any aspect of her life or well being I believe we will have to force it. How do you go about doing that??
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Definitely sounds like your MIL has some dementia going on along with her Parkinson's, and most probable Lewy Body as that often goes hand in hand with Parkinson's.
What concerned me the most in all her symptoms was the fact that she's coughing when eating. That is often a sign of swallowing issues and can lead to aspiration pneumonia and death.
Please have her doctor order a swallowing test ASAP to make sure that her food and drink isn't going into her lungs, as that can be fatal.
And to be honest your MIL should NOT be living by herself any more. It's time for her children to be looking into placing her in the appropriate facility, as she will continue to only get worse.
I wish you all well in finding the appropriate facility for her. (And please note that I did not say for any of you to take her into your homes. Her care would be just too much for any of you.)
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HoneyB92 Feb 6, 2024
Thank you so much for replying! And thank you for your advice. It seems I might be on the right track in thinking probable dementia. I know I wont know until her Drs confirm it but at least I can read and research what to expect in the event she does have it.
I am making notes for when we see the Dr. and I will certainly add swallowing test to the "to do" list. I guess I never realized how much it has progressed until I was listing all her symptoms. I agree she shouldn't live alone but I don't know how to get her to agree to anything else and I don't know how to legally make her go against her wishes.
I'm not even sure what the requirements are to being able to live alone. I mean I know it's common sense but it's almost like I wish there was a check list and it was clear that if she couldn't do XYZ then she couldn't live alone... I'm not sure I'm making sense but I don't want to argue with her and I don't want to have her in danger either :/
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Its very common for dementia to go along with Parkinson's. Mom is suffering the classic symptoms of PD and the classic symptoms of dementia as well. She may even be failing to thrive at this point, with drastic weight loss.

Make up a story about Medicare requiring her to have a short physical in 2024 to keep her benefits intact. That she'll LOSE her insurance if she doesn't go right away. Speak to her doctor beforehand, if possible, perhaps thru her patient portal, and tell him all you've told us, stressing the dementia symptoms. Hopefully you already have POA for Mom? You'll need it asap, in any event.

It's obviously not safe for mom to be living alone, losing weight, suffering paranoid delusions, refusing to medicate appropriately, etc. You don't want to anger her, yet it's now your job to be the adult as she's regressing back to childhood. One of the most important skills to develop as an adult is the ability to disappoint our parents. It becomes a necessity as we advocate for their needs and their safety because they've lost that ability! They can get angry and rage against the moon.....its okay, as long as they're safe and properly cared for.

Get mom to the doctor and a POA in force if necessary, and go from there. Mom is very ill and needs your help desperately.

Wishing you the best of luck with a difficult situation.
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HoneyB92 Feb 6, 2024
I completely agree with you Lealonnie1! We are prepared to do whatever is necessary to help her and keep her safe. I never thought about that... failure to thrive is absolutely something to discuss with her Dr.
Maybe I should have worded it differently... I absolutely don't want to anger her BUT I guess what i'm trying to say is I'm not sure what we can legally do about this situation and if she feels like we are trying to take control of her finances she will automatically think we are trying to rob her and she will 1. Call the police and 2. throw us out of her house and cut ties with us. I guess we could explain the situation to law enforcement but can we legally force her to let us help her if she decides we are stealing from her?
I appreciate all you guys helping me and I am learning so much. I am absolutely going to follow the good advice you guys have given me.
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I think Geaton's comment on the HIPAA form should say "Have you write in your name and HER sign it". Then they can give you information. However before that happens and before the appointment, you can provide information to the doctor. You don’t need her permission to do that, but the doctor can’t discuss with you what you have reported. Write a note along the lines you said in “Her symptoms as of now are….”. Hand it in at reception, to be given to the doctor to read before you go in. Add in “She refuses to take the meds prescribed for PD because she believes her Dr. is trying to kill her”.

Until her doctor knows what is happening, you have to wait for a disaster before there can be any change that she doesn’t agree with.
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HoneyB92 Feb 6, 2024
Thank you for replying and for the good advice! I had thought of trying to talk to her Dr. and inform her of things she might not know but sure needs to know but I couldn't decide how to go about it. I think your idea of a note at reception is a great idea!
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Honey,
The first and most CRUCIAL thing you must do is get a good POA done with her and in an attorney office. You must have this. When she is thought to be too incompetent to do one it is TOO LATE and you will not be fully informed nor able to help her with her finances.
IT IS CRUCIAL, and even coming down to too late to do this. If you need to go the route of guardianship or conservatorship it would cost 1,000s more.

Second most crucial thing AFTER the POA is IN PLACE:
Good neuro psyc evaluation.
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HoneyB92 Feb 6, 2024
I agree with you! I have spoken with my husband about it today and stressed how important it is to get this in place, now we have to figure out how to get her to agree to it. I guess it comes down to If she cant trust us we can't help her. I don't want to deceive her or make her feel like we are taking advantage of her but we cannot help her or protect her if we aren't allowed to. She has no idea that her mind is not doing so well.. she even says I know my mind is good because I would know if it weren't. I think it's just time for us to have a talk with her during one of her more lucid times and tell her what is going on and what she can expect.
Thanks so much for your advice :)
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I am so glad you will be attending the next meeting with doctors.
I think you may already know that living alone is no longer safe for her.
Does she have all of her papers done and in order, and especially do you have a STRONG POA done by an attorney.
Many--and some HERE--will tell you that a POA pulled off the computer and done by all of you with a notary is good enough. It ISN'T and when you find that out it will be too late to get a good one.
A POA witnessed by a notary attests only to a signature, not to the intentions of the person conferring POA on you, and it doesn't give you wide enough powers. It almost CERTAINLY will not be accepted by banks, which are VERY VERY picky about protecting their depositors from predatory family. So my best initial advice is that you and your MIL get together with a good elder law attorney.

Next, it is for you and hubby to sit down together (with a counselor if necessary) and come to conclusions about whether or not you will EVER consider in home care. My advice is NOT to ever and even temporarily.

My brother had Lewy's. As both Lewy's and Parkinson's can give some very real hallucinations (and he could describe his down to hair styles of the non-existant participants), there are also other similarities. Swallow deficits and balance in particular. But it can be almost impossible to comb out the differences and to make diagnosis. You need the best referral to neuro psyc doc you can get.

I can imagine you are flooded with questions. Try to give us a chance at one-at-a-time. Participate with others because you need to know we learn more from you than you can from us.
And know you are very welcome here.
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HoneyB92 Feb 6, 2024
Thank you so much for replying! You have given some great advice that (I'm ashamed to say) I haven't even considered! It hasn't occurred to me that she is even close to needing someone to handle her affairs and make decisions for her. I'm not sure how she would feel about that as she is so sure that people are just out to get her money :/
I don't think she is in the position to cut ties with us as she would be completely alone .. my husband is her only family. I'm not sure how to go about doing all that without her agreeing and I really feel like she would fight us if she thought we were trying to take control of HER business. Maybe I need to research that a little and if you have any ideas I would love to hear them. Thank you again.
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Welcome to the forum!

I am so sorry that you are going through this. I know what it feels like to be caring for someone who has Parkinson’s disease.

I cared for my mom with Parkinson’s disease. She lived to be 95 years old.

PD is different in everyone. Mom got it later in her life and it developed more slowly than people who receive a diagnosis when they are younger.

Mom took her meds as directed. She did experience tremors, mobility issues and dementia later on. Her speech changed as the years went by. She had some anxiety and depression.

Mom experienced many symptoms. She took a few tumbles and did home health and rehab for physical and occupational therapy.

My mom benefited greatly from PT and OT because she worked hard in the program. Mom used a walker but was never in a wheelchair. She was bed bound near the end of her life and died in an ‘end of life’ hospice care home.

The doctor also prescribed Seroquel and Ativan which helped tremendously.

One other thing to note is that PD generally start to run low blood pressure. When my mom was younger she had high BP. Years later when she had PD, her pressure dropped very low and was taken off of her BP pills.

I went to my mother’s doctor appointments. Do you have permission to speak with the doctor? Or POA?

Wishing you and your family peace during this difficult time. Start planning ahead. I can tell you that it will only become worse. It was devastating for me to see my mother struggling with this awful disease. Mom was ready to die long before she did, which I certainly understood.
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HoneyB92 Feb 6, 2024
Thanks for your reply! We do not have any POA or permissions yet but I believe she has agreed to let us attend her next appointment. I don't know how to ask her for permission to speak to her dr. without her becoming suspicious I might be "Up to something" . I am just trying to learn how to navigate all this without upsetting her as she is usually lucid for the most part.
She is not in any type of therapy or taking any meds and I have no idea even which stage she is in so I'm not sure what to expect next or how quickly things might progress
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Please consider that she may also have another form of dementia or cognitive impairment happening simultaneously (like ALZ based on her age). Paranoia is a feature of dementia. It ramps up in the afternoons, which is called Sundowning.

PD can often come with Lewy Body dementia, which is different than other age-related dementia because the sufferer has actual hallucinations (not just delusions or paranoia). My SFIL had PD and had LBD. He often saw people outside his windows or thought we were trying to harm him (and he had firearms in the house so we had to remove those).

In order for her to take her meds you may need to use "therapeutic fibs". Whatever narative she will buy is morally and ethically acceptable since it is for her own good. For example, she is taking vitamins, or something that is for some other physical ailment. Another strategy is to have a different person give her the meds (like a companion aid).

I'm sorry you and your LO have to walk this journey. May you receive peace in your hearts.
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HoneyB92 Feb 6, 2024
Thank you so much for replying :) That is a great point that you made...
She may very well have a different type of dementia.. her mother died of Alzheimer's. I know this isn't the place to get a diagnosis but there seems to be a lot of experience with these diseases here and I appreciate the help.
I just can't help but think she has some form of dementia and not just PD from all the symptoms she has and the things I have read. I hope she agrees to see the Dr soon and I can post an update .
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