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Alz+ Doctor's Appointment
Jo C.
Posted: Sunday, July 7, 2019 7:42 AM
Joined: 12/9/2011
Posts: 9971


 Hello, alz+.   Tuesday will be here in two days, and I understand that is the day you see your new healthcare provider to get established in a new practice and that you will see the Nurse Practitioner associated with the physician.  

Question:  Is this a dementia specialist or primary care MD practice?

While I am not a doctor nor am I a dementia specialist, some thoughts did come to mind and thought I would share them; hope that is okay.  Some of the other Members may have additional input which may also be helpful.

1.  No matter which type of practice this is, request and even insist if necessary, that appropriate diagnostics be done to establish and/or confirm just which type of dementia and other conditions you may have.  This is essential.

 2.  This is crucially important for treatment care plan.  It has been a long time since this has been seriously looked at and diagnoses can sometimes change over time. Treatment for one type of dementia can be contraindicated in another and even make things a bit worse; so that accurate diagnosis for dementia type is the key to everything.

You may or may not also have other healthcare conditions that may have gone undiagnosed as yet, so it is really good you are having this appointment.

3. You are in a good area for healthcare and only a very short distance from Santa Rosa where there are large med centers, so you will have access to good care providers.

4.  I would recommend establishing right away, and telling your examiner, that you wish the NP or MD to contact your daughter to discuss the findings of your exam and what the plan of care is.   This is REALLY important. 

 5.  You have profound hearing issues and memory issues; some things can be missed or misunderstood; your daughter can be your partner in your healthcare loop - this is, as said, truly very important.

  6.  If the office has a HIPPA Waiver form, I personally would sign and keep a copy of it.  That way, if you should have an unforseen medical emergency in the future, your daughter can be informed and assist even if you are not able to do so for yourself.

  7.  Ask that any directions for you to follow be put in writing so you can retain and refer to them. Ask that a copy be sent to your daughter.

  8.  Bring a copy of any medical records you may have IF you have them, no big deal if you do not have any.  You can write down a list of prior health history to take to the appointment with you to make it easier for recall.

 9.  IMPORTANT:  Bring a list of ALL meds and substances being taken even if taken only once in awhile - prescription, herbal, OTC, etc.   Also bring them with you in a bag. 

 10.  IMPORTANT:  Include in this, the names and types of THC and CBD oil substances you are taking whether every day or even once in awhile.  NOTE:  It would be good to write out a list of times and how much of each one you have been taking whether daily or even once in awhile - and give that list to the NP or MD.

  11.  When meds are discussed, please listen carefully and then if you are feeling negative rather than dismissing out of hand, discuss it with the NP or MD and let that person know why and what your experience has been in the past.   It may be that for some of the past meds, the here and now may be different from what had gone on before.

  12.  In that discussion it is important to remember that sometimes it is not the actual med that is the problem, it is the med when mixed with other meds or other substances which may be giving a negative result.  Try to keep an open mind.

  13. If you do not understand or have concerns, bring them up freely - discuss them; do not leave without understanding and having explanations.  It is your right to have this.

 14. If the care provider recommends seeing a specialist, please do accept that.  Remember that accurate diagnoses are going to be key to everything and knowledge is power; those referrals will bring you knowledge that may possibly have been missed in the past.

  From your writing, I sense that this appointment is causing you some worry and projecting negatives about it which is increasing your stress.  The reality will in all probability be far less problematic and hopefully will put your mind at ease.

 Sure wish someone was going with you; but having your daughter being contacted so  she is on your team will be helpful.

 Let us know how it goes; we sure will be thinking of you even more on that day.

 J.


alz+
Posted: Sunday, July 7, 2019 9:35 PM
Joined: 9/12/2013
Posts: 3506


Jo C !!!!!

how did you know I would be coming here to say "What am I supposed to do at appointment?" !!!

I will write points from your post on paper and bring that too.

This ia nurse practitioner.

I see what you mean by the dementia changing or maybe being something else. Seems identical to my Dad's progression but I WILL ask about starting over.

When people tell me to start over I feel sick but I am COOPERATING.

seems if there was something that works really good we would all be on it!

I don't mind having ALZ so not motivated to do more scans (with no calif insurance) but I will ask and if they say "greta idea" then someone will have to help me switch plans to pay for this stuff.

My Dad didn't complain about it either. My legs are getting weaker and stiff, muscle contractures in my feet - just like him. 

Will put stuff together tonight. I made list of meds, diagnosis, and drugs I am allergic too or have bad reactions from. Took me 3 days but it is printed neatly.

Yes I will list my daughter (never would have known about that!).

thank you again for years of counseling and good advice and kindness. You are such a treasure. Would read your book on how to handle this.

******

Habib just came into my room and got on his knees and told me:

"I was watching soccer on the porch and it just exploded in my head - you aren't going to 'get better' and there is no treatment for the disease except making you comfortable! I was stupid to say those things to you. I know now you are not mentally ill and to ask you 'don't you WANT to be better?' was a $#*&up thing to say. I am so sorry. I will never tell you you have to change or that you have to leave again. Forgive me for being stupid."

My first conversion! He saw what I was talking about.  so patience and pushing my agenda is opening up our lives. Make my decline as comfortable as possible, there is no cure, let me have some bad days, help me get sleep, remind me to bathe...

Also realized that I had forgotten how to smile years back and practiced in mirror and have been not smiling again. So I am working with that a little. He also got that after 2pm the engines are down, by 5pm let me sit in my bed. And he also got how lonely I have been and still am.

wow!  WOW. I just got help from Jo C, JFKOC, IRIS, L lee, Unforgiven, and then Habib had the light bulb go on.

copying your notes now.

love and courage (and patience if you have any left)


Iris L.
Posted: Sunday, July 7, 2019 11:00 PM
Joined: 12/15/2011
Posts: 16092


alz+ wrote:

 

 

******

 - you aren't going to 'get better' and there is no treatment for the disease except making you comfortable! I was stupid to say those things to you. I know now you are not mentally ill 

 



Profound!  This is the best statement ever spoken about dementia!  Habib is a genius!  He's got it!  I am so glad you two are having a breakthrough! 

Iris


alz+
Posted: Monday, July 8, 2019 9:48 AM
Joined: 9/12/2013
Posts: 3506


He truly got it.

We had talked about how impressions laid down in past color what we see in present and he said when I told him yesterday, "I'm going to the doctor so you and kids feel better. I will take what they give me to make you feel better. And if I feel better I will tell a million people on ALZ.org board and we will all be better."

I was laughing because if there was A Pill that helped us relax we WOULD all be on it.

But Jo C and  you and others have pointed out, why not get a tune up and reassess?

Iris, remember when I could hardly function after diagnosis? That awful state of fear, panic, helplessness, anger seemed like I would drown in it. The friends here gave me little suggestions, and 1 by 1 they began to add up into the bigger picture - that the environment sets the tone for 50% or more of how we do living out our lives, and then we add small things to that until we are able to cope.

I copied Jo C's important points onto piece of paper, have my meds and supplements in a bag. I am feeling anxious and have not gotten out of bed yet.  At least Habib is not going to push the mental illness thing ever again.

OK. 1, 2, 3 ...? I better get out of bed for a start, have to leave in hour. yikes.

thanks Iris for your friendship and insight. I can count on you always to have the perspective I want to share. Knowing you made me a better person.

love you


Unforgiven
Posted: Monday, July 8, 2019 2:02 PM
Joined: 1/28/2013
Posts: 2547


I'm keeping my fingers crossed for you that your visit goes well and proves productive.  I much prefer the Nurse Practitioners to the actual doctors who will barely give a patient ten minutes of face time.

Day after tomorrow, I have a followup with a nice young NP who has taken over all of my 'head' medicines from my Internist.  Last time I saw her, I told her about the feral kitten who had taken shelter in our basement, and she asked for an update at this appointment.  That's the sort of things doctors will no longer take the time to do for a patient.  Kitty is living upstairs now, still very shy.

Be sure to let us know how your visit went.


alz+
Posted: Monday, July 8, 2019 2:38 PM
Joined: 9/12/2013
Posts: 3506


I'm back! 

It was ok. Long wait and lots of forms - for ME to fill out! I left some pages blank and also forgot my wallet with my insurance cards (thought I lost it, found it at home in bag I use to carry groceries back from store).

 going back tomorrow with insurance cards to talk to an insurance specialist to switch from mine to new one. This is all on me to do, no way in universe Habib could handle insurance questions. He was a wreck though the whole appointment.

The visit - she looked at my bottles prescription, supplements, cbd stuff. Not sure if she asked me same things more than once but then she and Habib LEFT me in room and talked in hallway. He refused to tell me what was said and dropped me back here at house and went some place - maybe to get emergency asthma meds.

My face was like frozen putty, I made attempts to smile but it felt like my cheeks were plaster. Oh my god. Could not do it, and then WINKED at her when she asked how things were going at home here. I hope I am laughing about it pretty soon cause right now I am humiliated. Even knowing I can't help it.

She is making an appointment for me at a neuro psychiatrist  for soon, said what Jo C said, need a fresh look at my condition and status in order for anyone to treat me here. If Jo C had not told me before I might have refused, just as automatic reaction. When she said that, I did exclaim "I was warned about that!" with not functioning smile attempt.

Going through shock as the 3rd day of sale of everything I owned goes on, so now going to see neuro person feels like I will do or say stuff ... consequences.

Not sure if the clinic gave Habib a summary of visit, I think when I signed the form for info to go to daughter and Habib it cut me out of info? Maybe not. I also recall answering, "How do you think things are going?" with "I think I'm handling losing everything brilliantly." I think I was referring to the ongoing dispersal of my previous life, not crying about it.  From what I hear people LOVE my stuff and my kids are impressed with the cool small things they found around the house.

I'm going to walk my dog now, not hot, if I find info when Habib gets back I will fill it in.

Unforgiven - the CAT! really, I prefer when someone asks how my dog is instead of me! well done with the puddy. Thanks for your support! 


alz+
Posted: Monday, July 8, 2019 3:31 PM
Joined: 9/12/2013
Posts: 3506


I walked my dog and fell on the road.  Flat surface. Had told Habib this morning I feel weird going up and down the front steps and expect to fall before long. An hour later, boom.

A woman was separating her trash into bins and was parked on side of road ahead of me. She came over and asked if I wanted a ride home. I found I could get up and thanked her and made my way back to house.

My legs have been quivering and spasms for months. Very shaken up. I got in bed.

feel like something more is missing and I'm supposed to go figure out how to change insurance tomorrow. Caught one hand under my hip, feels like it will hurt tomorrow.

darn it.


Unforgiven
Posted: Monday, July 8, 2019 4:42 PM
Joined: 1/28/2013
Posts: 2547


Well, a neuro-psych is the proper specialist for dealing with dementia of al, sorts.  Try not to worry about saying something 'wrong' because things are what they are.  Trying to cover up is a waste of everyone's time, yours and the doc's.

I like my NP because she seems to look at the whole person, and she knows I get a lot of self-affirmation helping animals.  In fact, I first spotted the kitten as I drove into the garage after my first visit with her.  Even though it's living upstairs now, I still haven't been able to pet it and discover whether it's a boy or a girl.  The kitty has touched me, by reaching out and grabbing my extended hand and chewing on the fingers, once I even got licked.

While you were walking your dog, I was out working with our new rescue horse, getting him used to the idea that I will be the one in charge.  I learned, to my dismay, that I am no longer strong enough to put on a heavy saddle as easily as I did thirty years ago, so the horse refuses to cooperate when I try.  I have to be slow and patient to make him understand what I want.


Iris L.
Posted: Monday, July 8, 2019 11:24 PM
Joined: 12/15/2011
Posts: 16092


I think we have to get used to the idea that we all are subject to falls at our age and especially in our condition.  We must take all the precautions we can to avoid falls.  


Ask the insurance guy if your doctors are registered with the plan he is advocating.


Iris


alz+
Posted: Tuesday, July 9, 2019 8:14 AM
Joined: 9/12/2013
Posts: 3506


Iris thanks for tip on that. I am pretty sure I can get similar plan if the government doesn't abolish Obamacare.

also the insurance guy is part of the clinic.

The fall is a big deal. Can't remember, something happened recently and I felt like a chunk of my brain die off.

The falls are not preventable, it is leg collapsing. If I had a cane or walker I would have been down. I am very shaken by this, the broken hip from fall was what killed my Dad.

He could not recover from surgery. My friend's Mom also broke her hip and my friend (retired doctor) did not have it repaired! She let her Mom stay in bed and helped her to bathroom until she passed away. I thought it was insane at time, now I am just scared.

Instead of getting helps with chronic back pain that keeps me from sitting more than 10 minutes or the quivering in my legs, I am going to get psyche meds.

If I can not walk my dog, it is end. Can't sit or use stairs safely or walk means bedridden and can't count on Habib to notice any need for help.

Shaking inside at thought of going to insurance place - the travel, the traffic, supposed to have all these documents and don't, having to converse)

slept 10 hours after falling. Other news, my house is empty now. Everything is gone. Same day I fall in road.


Unforgiven
Posted: Tuesday, July 9, 2019 11:46 AM
Joined: 1/28/2013
Posts: 2547


Alz, I'm confused.  I thought you were old enough to qualify for Medicare.

Did you mention your chronic back pain to the NP at your recent visit?  Not that there might have been any help.  I have known I have scoliosis since my early twenties.  This past year, with Medicare, finally, and time enough to see a specialist, I got a referral to an orthopedic clinic with a spine center.  All I got was surprise that I was still so functional with a back like mine, the information that nothing could be done about it, and a firm denial of any effective pain medication.

Spine troubles can and will cause weakness in the legs, and chronic pain adds to depression.


jfkoc
Posted: Tuesday, July 9, 2019 12:21 PM
Joined: 12/4/2011
Posts: 17192


I think a walker would help you get more safely to the floor!!!!!

Why can't the insurance  person come to the house?


Unforgiven
Posted: Tuesday, July 9, 2019 1:55 PM
Joined: 1/28/2013
Posts: 2547


My previous insurance representative would come to the house.  The man who replaced him will not.  Again, Alz, it is important to have someone with you, because you will be making financial decisions about your possible levels of coverage and their cost.

About support while walking, my mother used a rollator with a seat for years, but I'm not sure one would be safe for dog-walking.  Advice from a physician is necessary.


Iris L.
Posted: Tuesday, July 9, 2019 1:56 PM
Joined: 12/15/2011
Posts: 16092


Jfkoc has a good idea.  It is time for services to come to you.  


I had severe back pain and used several physical therapy modalities to ameliorate the pain.  It is not gone, but I don't need pain meds anymore.  


I also had several falls, a couple in the bathtub and the rest on carpet.  I read up on falls prevention and took the recommended steps to avoid falls.  They are working so far. 


Hip fractures are dangerous with a high mortality rate.  The deaths are usually due to complications after the hip repair.  You might ask your PCP about a DEXA bone scan to check your risk for fractures due to bone thinning. 


Iris


Unforgiven
Posted: Tuesday, July 9, 2019 4:37 PM
Joined: 1/28/2013
Posts: 2547


Everyone over 60 should get a bone scan.  It's more of an issue for women, but men get osteoporosis too.  My own grandfather had Paget's disease.
alz+
Posted: Tuesday, July 9, 2019 4:49 PM
Joined: 9/12/2013
Posts: 3506


I'm back.

insurance guy was booked up, never had an appointment with him. The clinic gave me wrong place wrong guy.

I went to clinic and gave them my medicare card and told them I'll pay remainder of my bill with a check.

spent morning digging through papers trying to find stuff they needed - can't change insurance until I get a California ID. to get ID can stand in line for hours or set up appointment. Next appointment august 29.

the car ride was awful very hot, bumper to bumper fast on narrow highway.

taking break from everything.

my house is now for sale. everything is gone.  

you are my only friends left. all my living friends are back home or dead.

love you all so much



Unforgiven
Posted: Tuesday, July 9, 2019 6:16 PM
Joined: 1/28/2013
Posts: 2547


That must all have been very upsetting.  Take some time to chill out until it passes.  It will, you know.
jfkoc
Posted: Tuesday, July 9, 2019 8:04 PM
Joined: 12/4/2011
Posts: 17192


You have an Alz Assoc office near you. I will call them tomorrow morning and find out if you can get your ID as a homebound person. OK?
Jo C.
Posted: Tuesday, July 9, 2019 10:26 PM
Joined: 12/9/2011
Posts: 9971


Alz+, my mother and step-dad who lived in California both needed ID cards, I contacted DMV and asked to speak to the Supervisor for ID applications.    I told her that both parents had dementia, (which they did), and that they were housebound except for doctor's appointments.

 They sent two fellows with a camera and background screen to the house, took the photos and left within half an hour.   About a week later, we got the IDs in the mail.  So easy and so nice.

 1.  If you call the DMV, ask to speak to a Supervisor only, and then let them know you have dementia and are housebound except for doctor's appointments and are not able to go to the DMV for an ID and ask if they can send someone out the house with an appointment.  Hopefully they have the same service as the Orange County office had for my folks.

  2.  Since you had a fall, perhaps when you see the NP again, or if you call her, perhaps she will order P.T. to come to the house to help with balance and strengthening.   No reason to have to go out; once again, housebound except for doctor's appointments gets the service.

 3.  The insurance "agent" you see at the doctor's office is not a community based agent, so it is highly doubtful there would be a house visit, but one can ask.

 4.  Do you know if this this an HMO or Medicare Advantage program you are signing up for?   That would explain the use of a person who is their agent, who can sign you up for such a program.  One can make a Medicare change outside of the annual open enrollment period when there is a significant life changing event - your move was a significant life event.  This really sounds as though it will be an HMO or Advantage Program which you may have had in Michigan.

 5.  It would be really nice if your daughter could help you slog through the insurance changes if it gets complicated; it can be a taxing effort to get it done. 

 6.  Hang in there, you are taking care of business very well despite the stress of it all; once it is all in place, it will be SO much easier and better.  Step by step, one thing at a time, one bite at a time.

 You are doing absolutely great for all that you have been going through the last few months and at the same time grieving some of the losses you are experiencing - really and truly, you are doing a very good job of it all.

 J.