Sister not diagnosed yet but cognitive and physical challenges

@lindakbe I know you're frightened for your sister and yourself and your family. And it’s very confusing not to have a diagnosis when you know something is wrong. You have taken your sister to see doctors and are awaiting a neurology appointment. The best that you can do for her while you wait is to make sure she is safe at all times.
And,also, use this time to find adult day care options and programs for adults with dementia where she can be with others and feel comfortable.
And remind yourself that she may not be the sister you remember, but she is your sister and needs your help.
Where in the US do you live? There may be some university hospitals or comprehensive medical centers where you could go for another opinion. Is that of interest to you?

It is a blessing that I am able to have my sister with us all the time.
We have a big old-fashioned family, and she will never be alone again. She will always be able to call out and find a hug close by. I am interested in getting a diagnosis for her because the progressions of some of these conditions might be slowed if the proper care is given soon enough. At least I think so.... the main thing that is worrying me is if the diagnosis is delayed by half a year we will miss windows that could make a big difference . We are right by Mayo Clinic in Rochester, MN. We live in the country, so she is surrounded by nature. We have a balance dog that helps her move more confidently and an emotional support dog, a big guy, that knows sign language and she teaches him every day.
We had a tough childhood and she had to block out a lot of memories. They're starting to surface now and it is so hard to gently answer her questions about why she and I were so afraid of our dad.
Basically, she saved me when we were little and now I seem unable to save her. Just feel so sad about that. She asked, "what happens if I lose all ability to think?" and I said, "Then I'll just hold you closer."
Thank you for listening to me.

Thank you for the hugs. Just got the wonderful news that there was a cancellation, and now my sister has a neurology appointment Monday morning!
So we shall see. I don't know what to expect that day .... Anyone give me some idea?

@lindakbe Such good news about your sister! Take some time right now and think over the past few weeks and what may have bothered you or a question you may have had. Make a list of all your questions and concerns, grouping them into topics. But, try to be concise since your visit may be short. And write down the answers!! Also, try to sit just behind your sister so that she cannot look to your for answers. She is there to talk with the doctor!
When you are at the check in/check out desk, ask if they have a portal . Doctors will usually put a summary on the portal so you can read it.
Keep all these papers, questions, answers, etc in a folder so you can refer to it later, or whenever you wish.
Just as an afterthought; Mayo Clinic has good information on the non-medical management of dementia. You can find it by going to the bottom of this page to the blue area. As you scroll down, you will find MayoClinic.org (in blue). Click on it and a search page will open. Type ‘dementia’ in the search box and all sorts of information will come up. Try it!
Do you think all this sounds reasonable? Hope to hear from you on Monday!

Thank you for your help. I wrote a long reply (3 times) but keep deleting it by mistake and getting into a survey. Thank you, and I took your advice and put thoughts from four family members into her portal. She got really upset and wanted me to print them so she could edit their words. I haven't printed them... Should I? I'm singing hymns in my head to keep calm in the midst of her storms.

@lindakbe IMNSHO, don’t print them. Just tell her that family wanted to make sure the doctor knows how she is doing and that she is loved and cared for.
She is so lucky to have you! Are you giving her chores and tasks so she feels like part of the family? Things like setting and clearing the dinner table, helping fold laundry, etc.
Do you think she will go to her appointment today? Will she let you sit with her?

My heart is aching. My sister was diagnosed: dementia with Lewy Bodies.
We will watch her slowly fall apart and not be able to protect her.
We will lose her even though our arms are holding her close....
We are all so sad.
P.S. I tried to write last night to get support but my computer cache was full and I couldn't reach anyone there.

She has an EEG and PET scan Friday and there's all these special instructions.... Usually I can do all that but now everything is impossibly hard. How can I keep her awake for half the night? She is scared and angry and confused one minute and then she will be just fine. But she's not fine; she'll never be fine the same way again.
I looked up the disease, and it's horrible! I thought no disease could be worse than the Alzheimer's that took my mother, slowly and completely, until she passed away months later. This Lewy body stuff seems worse.
But....
I will have to keep breathing. I have to keep looking for little ways to love her and this beautiful family we have.
And I will sing songs of hope rather than lose myself to sorrow. She is here now. She is different. But she is the same in all the ways that matter. Thank you all so much for listening.

Linda
I remember vividly the day we first heard Lewy Body Dementia when my DW got her diagnosis about a year ago.. Like you I researched and found some alarming and awful things to expect. But as things settled a bit, I learned that evertone's journey is different and not every LBD person will have all the possible symptoms. And the severity of symptoms varies as well. My experience thus far has been pretty good all things considered. My wife, about the same age as our sister, still has a wonderful sense of humor. We laugh a lot, even at some of the frustrations of dealing with LBD. There are things she cannot do, but there are lots of things she can and enjoy.
A couple resources I found helpful were LBDA (Lewy Body Dementia Association) and the Lewy Body Canada websites. These are managed by people who have or are living the Lewy experience.
There others here on the Lewy journey who might share some of their experience.
Keeo singing those hymns and I am sure you will fing ways to bring joy to your sisiter.

Your words are kind and hopeful. You have woven love so beautifully around your DW. I would write more as a reply but I'm just trying to hang on this morning. We tried to keep my sister awake half the night like the EEG appointment (scheduled for today 12/8)instructions said but it was hard. My son and husband stayed up with us, watching over me watching over her. Everybody is sleepy now! That's not great for navigating a hard day at clinic. She also has a PET scan. I'm concerned as to how she will get through these tests. She said yesterday that she feels like she's being manipulated about these medical details and the tests. And that was an angry time for her. I told her the doctor wants more information to help her best. She calmed down finally.
Her son was able to call and that helped her gain trust about the tests. It's just that every day things seem worse. Tomorrow we will start the Donzole.
Today.... The sun will rise and strength will be found.