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.
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!
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.)
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 :/
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.
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.
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.
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.
Thanks so much for your advice :)
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.
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.
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.
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
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.
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 .