New here and looking for help(1)

Kathy65Ann

Good afternoon   My name is Kathy and I believe my mom has some form of dementia.  She will be 84 in a couple weeks.  I've noticed some things in the past year and, at the suggestion of my PCP, I contacted her doctor to see about getting her to ask the right questions in order to get my mom tested, but the doctor never followed through.  My mom won't let me go in wither her when she has an appointment.  In other words, she's not the best patient, lol.  Any suggestions on what I can do to get my mom to get the help she needs?  I may be asking the wrong thing and that's because I have no idea where to go or who to turn to.

Also, does anyone use the chat rooms on here?  I've checked a couple times and they are always empty.  I signed up for the Helping Friends Caregiver Support Group (out of PA) webinar today and I've been waiting a half hour for the meeting to start and there is nothing.  Other than here, are there really support groups to talk with?

Thank you all in advance!

SusanB-dil

Hi Kathy - Do you have POA or are you included on her medical HIPAA?  Even if you are not on her HIPAA, you can still tell her doctor your suspicions.  They just would not be able to discuss it with you. I have seen other posts, and we have also done this - is pass a note to the doctor prior to her appointment telling them of your concerns.

Joyiat

Hi, Kathy,

If your mom won't let you join her for her appointments, it's possible that her doctor did follow through with your request, but your mom didn't tell you about it.  If you're not listed as an authorized HIPAA contact or Healthcare POA, the doctor can't tell you what has or hasn't been done, or have any discussion with you at all.  I like the idea noted above, where you could again express your concerns to you mom's doctor in writing, prior to her next visit.  

Regarding support groups, today is my first day here.  My son found this and referred me here.  I tried a local support group, but there was no one there with a similar situation, and the meetings were virtual and held during my workday.  Somehow, even though I can't see the people here, I have found more folks in my same situation.  I've not yet looked at the chat rooms.  

Best of luck - it feels good to know we're not alone.

Jo C.

Welcome Kathy.   This set of circumstances is a definite challenge and can be stressful to deal with; I have had similar issues with my mother.

Basically, if you know the date of her next appointment with her doctor, you can write a detailed but succinct memo outlining all of the changes in behavior, cognition and function and other problem issues and get it to the doctor two to three working days prior to the appointment.  I did this with each appointment so the doctor could do a proper assessment with full information.

I chose to fax my memos in to the office. I  printed CONFIDENTIAL at the top of the memo and that is was time sensitive to an appt. on such and such a date.. I let the staff know the fax was coming and asked that it be placed on the doctor's desk asap.  Then a couple of hours later, I called again to ensure that had been done. Had I been able to go to the appt., even if just to sit in the waiting room ("Let me drive you to your appt. Mom; I will not go into the exam room but will wait in the waiting room and we can go for (lunch or coffee, or whatever) after you are done.  What I did was to carry an extra copy of the memo with me. When Mom was taken into the exam room, I excused myself to "use the bathroom," and then checked with staff to check with the doctor to see if he had read the memo.  If so; all was good.  If not, I had the extra copy with me that he could read prior to conducting the exam.

Eventually, things change and this will become easier, but while in problem mode it really seems to require creativity.    Sometimes there is nothing we can do except to wait for the next shoe to drop, and eventually it will.

Best of wishes being sent from one daughter to another,

J.