At the ER

John2.0.1

Mom was hitting and kicking the MC staff who were trying to help her bathroom. Continued to hit and kick so they called the EMT's. I got here and she is back at baseline. 

Why chest xray for for paranoid delusions/aggression? 

She has Parkinson's dementia.

sueclarkpt80

When we had my sister transported to the hospital for hallucinations and delusions they did every test they could think of. They explained that some illnesses are more difficult for those with Alzheimer's disease. She has EO  and is only 60 but at stage 6c on the Fast Scale. When all came back normal they said move her to memory care and add Risperdal. That seems to have worked. So sorry you are having to go through this. Our trip to the ER was more difficult for me than for LO!

John2.0.1

Well a psych evaluated her, admitted her and are doing a bed search for a geriatric psych unit. I do agree. Her meds need to be evaluated and she can't be kicking and hitting staff.

 She has never been violent ever until this phase of her disease.

Cynbar

Good --- sounds like this ER visit will be productive in getting her the help she clearly needs. It may take a little time to get the meds right, but I think it will help her (and you) in the end. Keep your chin up, we're thinking of you.

Jane Smith

John, I’m so sorry to hear about your mom. 

A sudden change in baseline in someone with dementia can indicate or be a result of a lot of things, but common problems include dehydration, constipation, a medication problem or interaction, any kind of underlying illness (even a cold), and especially infections, particularly urinary tract infections and pneumonia, among others. 

So my best guess is a chest x ray to rule out pneumonia as well as a UTI with culture, some blood work (to check her electrolytes and for signs of infection) and maybe a lot of other tests. Don’t hesitate to ask questions. 

I know people have had different experiences with GeriPsych/Senior Behavioral Health units, but the one my mother was in was fantastic and probably saved her life. It also allowed me to get her from the hospital directly to a facility that was equipped to handle her needs, which saved my sanity, if not my life.

I hope you’re all able to get the care and help needed. Best wishes. 

John2.0.1

Well mom languished in the ER for about 4 days and then moved to the GeriPsych unit upstairs.

When mom was in the ER I'm told that she did sometimes become combative on taking her meds. She's been in the Psych unit starting on her 4th day now and hasn't been combative.

Some of the nurses seem to think she is new to taking Seroquel and one suggested to me that it's working. I told her that she's been on it for over a year. For reasons that no one can explain, someone in the ER took mom off of the Seroquel and I insisted she go back on unless the psychiatrist recommends otherwise.The Seroquel was prescribed by her neurologist and and has been tweaked up and down by the NP but she's been on it for over a year.

I don't know really what to think.

At the assisted living and then the memory care, mom has never trusted the aids but trusts the nurses. Aids are almost always people of color and English is a second language. I don't think that mom is racist but I do think that there is a language barrier and that she doesn't understand the aids (I don't sometimes) and sometimes the aids don't understand her. (They don't understand me sometimes and I have a hard time understanding my mom because she mumbles.)

What if mom never acts up in the psych unit? They will discharge her without ever really identifying the problem if the problem is something other than language barrier.

What if the problem is the language barrier with the aids at MC? How can I ever solve this? All of the places around here have the same hiring situation. The aids are always people where English is their second language and their English is not great. The language barrier will always be there. Mom will never trust someone she can't understand and who don't understand her when she speaks.

Or could this be a phase of her disease? (Parkinson's)How long might this phase last?

What if she acts up again the moment that she returns to MC and the problem is the language barrier? Mom has money but not enough money for her own long term full time aid.

And frankly I'm 60 years old and I will not put my own retirement savings at risk.

John2.0.1

So it's August 7 and mom went to the hospital ER July 3 and 4 days later went to the GeriPsych unit. She is ready for discharge but flunked twice the PT evaluation to return to memory care. So now they are looking for a physical rehab bed. 

I knew she would lose her strength. I told them she would need PT. No one listened.

Mom has advanced Parkinson's.

So i don't know when they will find a rehab. 

I don't know if rehab will succeed in building back her strength.

I don't know how long she would be there.

Don't know if she is doomed for nursing home or not.

As a stop gap we can private pay for 24/7 assistance at MC if I need to find a nursing home.

We have been putting off and putting off vacation all this time but August 30 my youngest goes back to high school. Last full week of August is our, me, my 2 sons and daughter, last chance to go to our house in Maine as a family. My wife probably can't make it. More on that below.

My 20 year old daughter has offered to come back if mom needs to discharge that week. It's a 5 hour drive.

Mom's special wheelchair needs to follow mom wherever she goes. And her meds. I have mom's parkinson's meds. They need to follow mom too.

I am torn. Do we all give up on our last chance to go on vacation this year? Do I let my daughter handle it? She is 20.

Would I even enjoy vacation for all the worry.

Will I resent it if we don't get to all go?

I'm even feeling guilty thinking about me and my kids versus mom.

And my wife is still stuck in Canada looking for long term care for her mom. She may not make it back in time. She has been trying to find a place for her mom since arriving in Canada in March. And she can't get vaccinated because she doesn't have Canadian ID. Her sister is dual citizenship and vaccinated and is finally able to join my wife and their mother.

What a mess. I guess I hope someone will just tell me it's ok to go on vacation and let my daughter handle discharge if it happens when I an in Maine 5 hours away.

dayn2nite2

Because if she has an infection like a respiratory infection, UTI, or is having pain, she will become aggressive.  In an impaired person, they are not reliable as far as pain or symptoms, so everything needs to be checked, including urine and blood along with chest x-ray to rule out infection.

Stuck in the middle

I did not have to be there when my mother went to NH from hospital.  The NH had lots of wheelchairs, and meds were prescribed by the house doctor.  Ambulances make regular runs between hospitals and NHs, taking patients back and forth.

Go on your vacation.  Don't send your daughter if your mother is discharged, and don't go yourself.  Your mother is in capable hands, and will be OK.

Wish I was coming with you.  Haven't seen Maine in forever.

John2.0.1

Thanks for the encouragement but she falls out of a regular wheelchair and no hospital or rehab carries her parkinson's meds. After 4 previous hospital or rehab stay, i know they don't. They will say that of course they do but then I always get the call to come and bring her meds.

loveskitties

If your 20yr old daughter will be around anyway, just have her notified when/where the transfer will be.  

She can then drop off the meds and the wheelchair.

towhee

If you could hire a geriatric care manager who has a background as a nurse, they could probably handle things better than your daughter, and save her a long drive. If your mom does not show some progress with PT I would not count on the insurance paying for long. It might be a good idea to start looking at nursing homes just in case. 

I hear you about the medical establishment not listening to the family caregiver. 

John2.0.1

If my daughter needed to come back home to discharge my mom from Rehab back to memory care it would be to:

1: Bring my mom's special wheelchair from rehab to MC because ambulances don't do that

2: Date the labels on my mom's weekly pill box planners. I would have them all set up with two weeks. She'd just need to date them and bring them to the MC.

3: Maybe make a small adjustment and pick up anything at the pharmacy. If that happened I could guide her via Facetime or Skype.

I think that the MC is likely to say mom will need a 24/7 aid at least temporarily. I can set that up from our house in Maine. 4G is good where we go.

Thanks all for supporting the idea that I can take this vacation. My daughter has said she wants to do it if it comes up. She has been very close to my mom and has not been able to help much.

 And my mom trusts her just about as much as me. It would be OK.

Stuck in the middle

I envy you that daughter.  This is a preview of how you will be treated when you are old. 

A five-hour drive is nothing to a woman of 20.  Have at it, and have a great time!