Help with talking to the doctor

Cbeal11

Both Mom (84) and Dad (87) have dementia, Mom has been diagnosed with Alzheimer's, Dad is undiagnosed but is showing signs of dementia. Last year they chose to move into an assisted living facility, mainly because Dad could no longer help care for Mom. 

Both of them have become increasing paranoid and are making up lots of stories that are causing them distress. Mom told me today in tears that she can't stand when she lays in bed and all the words fly by but she can't read them or keep up. Both seem depressed and frustrated and are sleeping most the time. Dad does not always know who I am to him. Some days he is fine and some days he seems like most of his tapes are broken. I cannot seem to convince anyone in their care circle that there is a big problem. 

I took them to the doctor about a month ago and they both acted fine. Told the doctor nothing was wrong and they are very happy. The doctor spoke to them about being more active. I felt like I was losing my mind. Today I helped my Mom complete a 24 piece puzzle, she could not even get two pieces together. We then spent a bunch of time counting the pictures of birds on the puzzle. Dad sat quietly sort of "off" just watching. Their behavior is very off and I feel like it gets worse every time I see them. I bought a clock that has reminders and they cannot understand it, but they love that it plays a little tune a few times a day. It is supposed to remind them to go to meals, but instead of reminding them they both just freeze and watch it until the music stops. I go twice a week and help Mom to shower because she refuses help at the home and gets very insulted that they want her to shower, but if I don't do it, she never remembers and has no idea that time has passed. Today they both told me that the home stopped serving meals anymore, 10 min after they returned from the cafe after having cake and coffee.   

The doctor just sort of tells them to follow her directions and stop doing these things and they agree and everyone nods, she thinks they are good. And I see why, they ARE sort of good when they see her. 

Maybe a bit of a rant, but also, what exact words do I need to use to get the doctor to hear me? What should I bring, say, do to get help or get them to tell her what the problems are? Can the doctor help them? Or is this all just progressive and there is nothing to be done. I'm so sad for them, I wish I could just make this stop or help. My whole life I could ask one of them to help me, but now I don't know who to ask. 

M1

Cbeal, welcome to the forum.  There's probably very little the doctor can do.  I wonder if they need a higher level of care than they are currently getting?  As in, memory care?  This is something to discuss with the facility director.  If there is not a memory care option where they are, that's probably what you need to look for.

Iris L.

Cbeal11 wrote:

I took them to the doctor about a month ago and they both acted fine. Told the doctor nothing was wrong and they are very happy. The doctor spoke to them about being more active. I felt like I was losing my mind. 

This is anosognosia.  They truly belive they are fine and will resist if you try to convince them otherwise.  Their doctor is clueless.

Paranoia and hallucinations are not uncommon in dementia.  If they are disturbing, and it appears that they are, there is medication that can help relieve these.  These medications must be prescribed by a specialist, a geriatric psychiatrist or a geriatrician.  There are several meds and different dosages and it may take days or weeks to see a response.  Some patients may need to be hospitalized to titrate the dosage.

Call your local chapter and ask for the location of a specialist.  Or ask a social worker at a Memory Care facility for some names of specialists.

Iris L.

harshedbuzz

Cbeal-

Hi and welcome. I am sorry for your reason to be here, but pleased you found the site.

What you saw in the doctor's office is called showtiming. It's when a PWD can temporarily hold it together with great effort and appear engaged and much more "with it" than is their normal. This tends to happen with doctors and people who are not their regular caregivers like the sibling who visits twice a year. FWIW, my dad showtimed like there was a paycheck in it for him and complicated things a great deal.

Until I figured how how to finesse this, we tended to leave appointments with vague suggestions to abstain from alcohol and exercise moderately. One of dad's docs even wrote him a prescription for "a round of golf to be taken as needed" in the phase when dad seemed Gorilla-glued to the sofa.  

What helped me was communicating with dad's doctor's ahead of appointments to describe what I was seeing at home which spared me throwing dad under the bus and allowed him to see me as an ally. If there's a patient portal sign up and use it. If not, email or even a short note handed to the person taking his vitals with the request to them that the doctor see it before coming in.

At appointments, I always sat myself in the doctor's sight-line behind dad which allowed me to verify or deny whatever fantasies my dad (and to a lesser extent my mom) were reporting. The one time that I was unable to effectively convey the need for a medication adjustment due to dad's uptick in aggressive behavior verbally, I sent the geriatric psychiatrist a short video clip of dad threatening me. This made all the difference.

HB

Ed1937

Welcome to the forum. Sorry you need it, but it's a good one.

I would say to copy, then print your initial post here. You might also mention that they are show timing during their visits. Give it to the front desk when they have an appointment, and ask the doctor for it to be read before he/she sees them. If you don't get any satisfaction, a Memory Care Facility might be best.