Currently in ED, so forgive me for being long-winded... Venting/trying to work something out.
After being discharged on March 17, I've had to bring my Mother back to the hospital today. I initially brought her in on the 10th for insomnia related psychosis (this unfortunately happens to her on occasion; she has bipolar disorder with psychotic features). The March 10th admin, I was told a UTI was likely causing delirium. I accepted it. Before discharge I was asked if I still wanted her admitted to psych. I asked if she was sleeping; was told yes, voluntarily taking meds. But still asked for someone in psych to contact me to help me decide. The psych doc called and told me "it's either delirium or dementia" and that we'd wait and see. He suggested that since she wasn't a danger to herself or others, she could go home. My sister and I thought the pros outweighed the cons of taking her home (at hospital she'd be bed-bound and essentially isolated due to needing 1-on-1), with her progress through physical therapy the months before wiped out). The doc said if I have to bring her back, give him a call or make sure attending staff contact him.
Upon return home, she was still weak and lacking appetite for food (though she tried), but was still psychical (walking with help, mobile in her wheelchair) and voluntarily taking meds. After a few days though, she became very resistant to eating, drinking and taking her meds -- the behaviors she exhibits when her psych meds stop making a difference). She has been hospitalized 3-4x in the past because of this. However, because she was recently diagnosed with PD, I accepted the psych doc's statement that her current mental state was due to "delirium or dementia." I should've asked him to explain why he felt it was dementia (as an ER doc today implied) based on not having even examined her himself this recent admission (March 10th).
They've given her liquids and are saying her vitals look fine, as if they want to send her home. I understand that PD dementia can cause similar problems. But for years these psychological issues have been provoked by insomnia. Sure, maybe things have changed; PD is complicating things. I accept that. During a 2022 admin for psych issues (when they also had to treat her for discovered med issues as well), they gave her an antipsychotic med that caused neuroleptic malignant syndrome. So I understand why the psych doc might be concerned about having to experiment with an acceptable antipsychotic med for a 69-yo with bipolar and possibly PD dementia. Making all of this more challenging is that we have to wait 3 months for follow-up with the Neuro doc that diagnosed her with PD.
However, I refuse to accept that they can do nothing to address her hallucinations and paranoia, which would get ber back to baseline. It's almost like they they think she's on her way out or something. She was fine 3-4 weeks ago, before insomnia issues started. I don't understand the reluctance to do everything they can so the psych issues don't cause further medical issues. It's like ED doesn't want to deal with her. And I don't have much confidence in the psych doc who knows her mental health history. I called hours before we came to ED. Someone took a message. I don't even know if he's gotten it. I told the ED doc... Will they contact him?
This is very frustrating and I can't imagine if my Mother had no advocate or me as her health POA. I would like for someone to at least give her a chance by addressing her mental health.
doctors just ignored his symptoms and told him to go to his physician who says it is Parkinson that causes those symptoms and neurologist says it is not Parkinson. So either referring to another specialist which here in Canada means waiting sometimes a year.
It is impossible to achieve any kind of conclusive answer.
i strongly believe with Parkinson there are really no answers anymore and every hospital stay was disastrous, I believe with covid, shortage of staff and totally ignoring other symptoms or blaming them on Parkinson and over or under medicating him, i.e. not receiving medications on time it got worse with each hospital stay, somehow being at home and adhering to strict rule of levodopa on time all the time is all he needs. That and sleeping pill are the only meds he is taking and there are bags of pills to be taken to pharmacy to be disposed properly, which every doctor prescribed just in case. He felt increasingly worse with each of them and decided to quit them all. The long awaited appointment for neuropathy came months after as inconclusive, the dermatologist, waiting for 3 months for initial consultation while his melanoma was growing and another two months to remove it could be potentially another problem. Just few examples as it would take all night to summarize it all.
So you may get some answers and I hope you do.
Each appointment is demoralizing to the point that I feel many of them is waste of time. I think in many ways I take it harder than my husband who remains somewhat stoic, as he accepted his disease knowing although not fatal but cruel, but concentrating on living fairly fully although with limitations and being free of stress allows him to reach some kind of peace. Hoping you get some answers soon and Mom will get better, we need to vent and maybe just maybe somebody will have better luck with what is becoming inhumane system.
The hospitals are run like warehouses if the patient IS admitted, then gets to see 15 different doctors, hospitalists, physical therapists, all different nurses who are too Short Staffed to answer the call light after 38 min leaving you to pee your pants in bed!
Demand a stat appointment with mom's neurologist via her PCP and don't stop advocating your cause until it's done. Accept a video visit sooner if available. That way you get to ask questions at least and maybe get some feedback. I did that myself and now have a real live Neuro appt set up for thurs this week, hallelujah. This after a 6 day stay in hospital where NO NEURO CAME TO SEE ME for brain issues and PTs ploughed me off for having "vertigo" and just WALK IT OFF DEAR. I'm fortunate to have gotten out alive, tbh.
Get mom that psych evaluation too! Classic mental illness says I'm Fine Without Meds and then you all follow her down that rabbit hole yet AGAIN. My stepdaughter is bipolar and unmedicated by refusal, which makes her a living nightmare who cannot be dealt with at ALL. I try to summon compassion for her but wind up severely irritated, hurt and cut to the bone in the process. Her poor father does too. Its a no win situation for all concerned, sadly.
Don't rely on guesswork as to whether mom has PD induced dementia or delirium when dementia is very simply tested for! Tell the pros to keep their opinions and present you with facts, please.
Its terrible what we're faced with lately and the shoddy treatment we receive from too many people who have no way to effectively communicate together. We get lost in the shuffle and suffer accordingly.
Wishing you good luck and Godspeed to navigate your way thru this maze of our medical system.
My mom had Parkinson’s disease and did develop dementia. Not all Parkinson’s disease patients will have dementia.
Did they place her on meds for Parkinson’s disease? These help control Parkinson’s disease symptoms but do have certain side effects.
My mother started having very disturbing dreams, to the extent that she would start screaming in her sleep. She always thanked me for waking her up from a nightmare.
Later on, she was having dreams of a young girl who she said started to appear to her in her bedroom while she was awake. She wasn’t frightened by this child and even seemed comforted by her presence.
Mom did go through a period of trying to walk out of the front door in the middle of the night. Her doctor prescribed Seroquel and Ativan which helped tremendously. She stopped trying to escape after starting on the Seroquel.
Parkinson’s disease affects every person differently. Meds affect each person individually so there really isn’t any way to determine what your mom’s reaction will be.
How old is your mom? My mom was diagnosed later in her life so her disease progressed more slowly than someone who is diagnosed earlier in life.
People who are diagnosed earlier, such as Michael J. Fox will see a more rapid progression of the disease. My mother lived to be 95. She died in an ‘end of life’ hospice care home.
As you know, there is no cure for Parkinson’s disease. As the disease progresses it will become more challenging for her.
I am truly sorry that your mom is dealing with bipolar disorder plus Parkinson’s disease.
I hope that you are able to find out more from her doctor about how he intends to treat her condition.
Please let us know how she is doing and how you are coping with this situation. I feel for you and if you need to talk about your concerns please continue to post on the AgingCare site.
Take care.