Parkinson's Dementia really accellerating fast - alarmingly fast

John2.0.1

Hi. So my mom was first diagnosed with Parkinson's over 20 years ago. She's 85.

Around 2018-2019 my dad began talking to me about it more. But he didn't let on how hard he was working.

In August 2019 dad died very suddenly and everyone was completely shocked. We quickly moved mom to an assisted living with her sister sort of out of desperation to find some place. Mom agreed it was the only sensible thing to do. At the time her biggest problem was mobility, not cognitive function. She had some small hallucinations of animals and children but mainly they were a small nascence according to her.

I think that the 5 months that she spent there with her sister was helpful but the long drive for me made it clear we needed to find a closer place. We moved mom to a new place in March 2020 just as the lockdown hit. She did well. Her main problem was that she wanted to be too independent and wouldn’t press her button for help transitioning from chair to wheel chair, to the bathroom, etc… She was forgetful and had the same small hallucinations but she was doing OK even with lockdown and I was designated a family caregiver so I could still visit her in her room around once a week.

In January 2021 she got Covid. Asymptomatic. If she hadn’t had the test no one would have known. About a week later she had low blood oxygen and went to the hospital. Pneumonia. A mild case too. She responded well to the meds and was out of the hospital in 3 days. She went for two weeks at rehab and then went home to assisted living.

That was late February. She was moved to the memory unit. Her room is almost identical to her old room.

But the last two weeks she’s all of a sudden going off the deep end with delusions. She thinks that she’s on a cruise ship stuck in the mud. She thinks that a locomotive (Amtrak) smashed into the building destroying the patio area that’s surrounded by building on all 4 sides. She’s amazed that they got the train out and repaired everything overnight. Yesterday when I visited, she was convinced that she was still on the cruise ship stuck in the mud. Tonight she called unsure where to spend the night even though she was in her apartment. As we talked on the phone she kept forgetting and then remembering that she was in her own apartment.

There are other examples but the last two weeks her awareness of where she is and what’s going on around her has crashed. We ruled out a UTI with a trip to urgent care. I’ve been on the phone with her meds prescriber and nothing we’ve tweaked in the last month should cause this.

She’s “seeing” a geriatric Nurse practitioner at the moment. I believe that he knows his stuff. Her regular Neurologist is on sabbatical and the doctor that’s covering for her can’t see mom until August!

Is it unusual for Parkinson’s dementia to take such a sudden worsening? Is there something else we should have checked?

Jane Smith

Hi John.

So sorry to hear about your mom. I have no personal experience with Parkinson’s, and hope some of our members who are will reply soon. Also not a medical professional, and ditto, but for what it’s worth here are my thoughts. 

So your mom definitely had Covid and pneumonia in January?  Bear in mind that even if she didn’t seem sick at the time, she still had an infection(s), and that’s a big deal for an older person in general, let alone with Parkinson’s and related dementia. Her body may still be recovering from that. 

Whenever there is a sudden change in status, always rule out a medical issue other than the underlying dementia. This could include, but is not limited to:  infection (such as a UTI but also a sinus infection, an accessed tooth, you name it), dehydration, constipation, a stroke/TIA, a blood pressure problem, a blood sugar problem, a medication reaction/interaction/change, delirium (not from the dementia).

Don’t rely on one quick urine test to rule out a UTI. They can be completely asymptomatic (and the person may not be able to accurately report what symptoms do occur) and it’s best to get a urine culture as well as a urine test.  So unless you’re waiting for the culture results from the urgent care, get one done. 

(Also, I’m sorry you had to take her urgent care. If she’s in memory care surely they can do this there?  And get the facility doctor to come and check her out physically?  And run a CBC and BMP to check her white blood count and electrolyte levels?  Or was it quicker to take her out?)

I would suspect infection until proven otherwise, since it sounds like there haven’t been recent med changes, and you were smart to ask for a med review-never a bad idea. Maybe she is still fighting off the Covid. Maybe she has a recurrent but asymptomatic pneumonia, or it never cleared in the first place.  Maybe a UTI.  

I agree that the new delusions that came on suddenly are worrisome and I really hope you can figure out the cause. I hope Jo C or one of other medical persons here can give you some better advice!

M1

Hi John, I'm one of the medical folks but can't add a lot to what's already been said. Unfortunately I think there are reports of dementia and psychosis worsening post Covid, too, but I haven't seen much research yet and am not aware of any specific diagnostic tests. I'm sorry you're going through this.

John2.0.1

Thanks very much for the replies. I know that there is what people call Covid Fog. If that it crashed on her almost 2 months after she'd have recovered.

I've asked the Memory Care about visiting doctors. Waiting for an answer. They have never mentioned one but I asked.

I can ask the nurses there what they can check and if not I guess a trip to her PCP many be the next step?

Are there conditions that I should add to the list to have her checked for?

UTI

Sinus infection,

Infected tooth,

Dehydration,

Constipation,

Stroke/TIA,

Blood sugar problem,

 

They check her blood pressure and blood OX every day.

towhee

Possibly check her feet really well? Toenail problem, pressure sore- Check for pain anywhere, not by asking her if anything hurts but by asking her to move and touching and observing her reaction.

May flowers

I’m not a medical folk, but saw this: https://pubmed.ncbi.nlm.nih.gov/33836148/

Marta

John:  up to 50% of PD patients can have hallucinations. 

Ask your Geri NP about a medication called Nuplazid (primavanserin). 

Jane Smith

Just wondering how you’re all doing today.

John2.0.1

I work from home doing a full time job while trying to get answers from memory care on their visiting doctors, trying to get hold of my mom's PCP to get her checked out on the list above, and trying to find out where the maintenance parts are for mom's wheelchair, and schedule the service guy to do it. 

I'm afraid I spend too much work time doing mom stuff but it is what it is.

Wasn't able to get mom on the phone today. That is good because it means she is out of her room doing activities with other residents.

And my wife and boys are across the border in Canada finding a better situation for her 94 year old mom. Wife's dad died in December and my MIL doesn't want to stay where she is. She will probably move closer to her son so that he will visit more. 

I've been home alone with my cat for 5 weeks now. It will likely be at least that long until wife and boys can come home.

Have a telehealth at mom's place next week with her nurse practicioner who is filling in until mom's new neurologist can see her finally in August!

I get my 2nd Pfizer shot in 2 days.

I hardly have time do do my job and usually work at night to keep up on the work that falls behind during the day.

JJAz

John2.0.1 wrote:

Is it unusual for Parkinson’s dementia to take such a sudden worsening? Is there something else we should have checked?

My husband had Lewy Body Dementia (LBD), which is on the Parkinson's Disease Dementia (PDD) spectrum.  He had a simple cold in February 2017 (he was 67) and his symptoms (similar to your Mom's) ramped up by April.  No URI, UTI or other infections.  He had some hallucinations and serious delusions.  All of this was new to us.  If I had not been taking care of him full time, he would have needed to go into memory care.  His LBD symptoms continued to ramp up seriously until he died in June 2019 of LBD.

It's not unusual for an acceleration of the disease to occur after an infection or a hospitalization for both LBD and PDD.  I see it all of the time with my LBD support group.  And when both occur, it's a double risk.  You might get lucky and symptoms will improve, especially if the NP prescribes Nuplazid.  However, much more likely is that this is the new normal with declines in the future.

In addition to Nuplazid, ask about increasing her dose of  Aricept (or equivalent).  PDD and LBD patients benefit from Aricept more than AD patients.  As long as she is not having loose stools, she will likely benefit from increased Aricept.

You're a good son and are stuck in an impossible situation.  The sandwich generation.  Focus on your work and keep your performance up at work.  Your livelihood and family are your first priority.  Mom is getting good care and you're doing all that you can for her.  If you want to talk to someone, call the LBD Association hotline.  Leave a message and you will get a call back.  Good people there.

800-539-9767 

Blessings,

Jamie

John2.0.1

Thanks very much for the encouragement and advice.

I'll ask the NP about the meds you mentioned. My guess is he'll be concerned about all the meds she already gets for her Parkinson's and mood.

Mon is already on:

Rytary

Ropinirole

Ursodiol

Donepazil

Pravistan

Sertraline

Seroquel

In addition to Aspirin, calcium and multivitamin

In total, 28 pills a day

JJAz

I should have mentioned first to check for any newly prescribed medication.  That's always suspect.  Since your Mom is on a significant number of medications, you may want to also check out the Drug Interaction Checker available on various websites, especially if any of them are new meds in 2021.

John2.0.1

Thanks yes. I did have a call with her Meds prescriber last week without my mom about any possibility of interactions between her existing meds that would cause issues here. She has only had a small change in the last month and a half and if anything that change would have reduced her confusion.

However when we have the call with mom tomorrow and I inquire about the med suggestions above I'll always ask about interactions.

Mom's meds have always been a balancing act since I took over her care. Her Parkinson's Mobility meds can make her more confused but reduce them and she's immobilized.

Then she has meds that help reduce the confusion and meds that help her to cope with frustrations.

I was just over there today too. I needed to be there for the wheelchair company to do some maintenance on it. She has a $15K custom wheelchair mostly paid for by insurance. But she's complaining about the seat cushion being to flat. We opened it up only to discover that mom has torn several layers of cushion material out of the seat. OMG. She doesn't remember doing it. So I need to order a new seat cushion and they cost around $800. I think I'll shoe-goo (or something) the zipper closed this time.