Sharing your LO's background with various providers

hhen · May 27

My mom has been in the hospital a few times (including the ER, behavioral health, ICU, regular hospital) and also has home care aides and home health nurses come by. Every time we interact with a new provider we need to repeat the same information over and over again, adding in anything new. I started collecting some of this into Google docs, including videos of her walking/talking, etc. to show her abilities outside of the hospital setting.

I am wondering if anyone else has found this frustrating and if anyone has any tips that you've used to make this easier. Thanks!

SusanB-dil · May 27

Yes - very frustrating, isn't it!

We try to keep within the same 'network', thereby utilizing one health portal. However… we had one doc who said he had gone over her records and blah, blah, blah… and started asking her a myriad of questions. He looked at us and said "she has dementia?" Um, I thought you said you went over her records??? I simply answered him 'yes, two kinds'. I felt like saying DUH!!

Ok - that was my rant - For you - I would say keep a list on paper and bring it to any new appointments or show it to any new caregivers. We do that and it does help.

yarnball · May 27

thank you for sharing your google doc + videos etc to help when going to providers. I'm going to start that, too!

H1235 · May 28

I keep a list of mom’s medications in my purse at all times. On the paper I have also listed everything she has been diagnosed with (vascular dementia, diabetes, edema, thyroid problems..). I have listed previous surgeries (with years) and her allergies. I included my name and phone number and my brothers. This has come in handy.

gasact · May 28

https://alzconnected.org/discussion/76145/sharing-your-los-background-with-various-providers

gasact · May 28

You had me wondering about “Behavorial Health”. I just wanted to share. I was recently put in a Psych Hospital because of Hallucinations. I afterwards realized I had been misdiagnosed. I actually was having DRUG WITHDRAWAL Symptoms. I had suddenly been taken off of a STRONG. PAIN MEDICATION. H

hhen · May 31

https://alzconnected.org/discussion/comment/273373#Comment_273373

Ugh, yes! I'm sorry that happened, we've had that experience as well. It seems like they either don't have time to read closely or there is too much info that isn't actually useful. Or maybe both!

hhen · May 31

https://alzconnected.org/discussion/comment/273418#Comment_273418

So sorry that happened to you! My mom has had hallucinations that we had been hoping were tied to a UTI, but seem to be part of her dementia. She's been to two different behavioral health units now and the way people are treated there does not seem like it is in line with getting better. I won't get too much into my rant, but in both cases I feel she was over drugged and just laying around all day, every day. Neither place helped her at all. I wish there was more holistic care, maybe they would have realized that you were having withdrawal!

.Becky. · June 1

Our family created a new gmail account. The name is something like [email protected]

We uploaded all of the information to the google drive for that email. It is organized in folders. There is a folder for legal docs, like POAs. A folder with photos of IDs. A folder of medical docs. A folder of tax docs. Video evidence is stored there. Each person in our family has the password for this gmail account and they can access this google drive instantly on their phone. We even have a google doc of notations of memory care neglect incidents. We all can contribute to it.

If there is an emergency, no one needs to fumble for a document on the way to the hospital or bank.

If you are not familiar with what a google drive is, it's a free block of cloud storage connected to your gmail account. You can access it through the google drive app.

Sharing your LO's background with various providers

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