Sister not diagnosed yet but cognitive and physical challenges

My suggestion about slippers for your sister: she might be better off wearing slippers with a hard sole but not slip-ons, the ones you have to put your entire foot in.

We did end up with comfortable boot slipper that she can pull on and surrounds her ankle. Works so much better than the slip-ons. Thank you, Janet. Every day is hard, but knowing I can reach out here makes me feel stronger.

So when she brought up aliens, or bad spies, I suggested she looks at the dogs (I have two big dogs that adore her) and see how they watch over us all. They will alert us if anything is unsafe. That seemed to comfort her..... The dogs seem to sense when she is sad.... coming over and quietly standing close when she cries. They know how to unconditionally love without worry. Just love. Live in the moment. Good teachers for us all.
The medicine backfired and caused major body weakness. So she is off of that.
I'll try that when I leave the room. Is it okay to keep doing other things? It is hard, because I know my presence comforts her.
Thank you for your comfort and advice

Great! Glad your sister has safe slippers on. Falls are catastrophic!
God’s blessings to you.

So much appreciate all you kind people. My sister's son is here for a week. He is trying to get as much legal items done as possible, while having gentle time with his mom shopping for fun items, eating out, wheelchair rides at a museum..... We made a list of things for the house to help keep her safe:
Medical alert bracelet
Toilet needs handrails around
Convert Both toilets to be handicapped accessible with high height and elongated seat (we had regular toilets for the grandchildren but they can use stools)
Convert faucets to be auto on/off
Get handicapped passenger sticker
Prescription for walker with a seat (that weighs less than 15 pounds)
Prescription for wheelchair
Baby monitor in bedroom.... she is sometimes very sad in there and cannot (for some reason) blow the whistle or get to us
A kitty 'house' so the kitties can be in her room for the night/naps but not be bouncing on her. She gets tremendous emotional support from her kitties, but sometimes feels "trapped" under the covers and can't get up to get help. She is being awakened by them playing or wanting food in the middle of the night. If she had an area like this, we could have the enclosure door open in the day but she could have the option to get rest at night with them close but not in bed with her. Nights are pretty rough for her.

Did you have any other thoughts?

Thank you!

Good morning, everyone,
We are contemplating not having my sister attend the neurologist meeting on the 22nd. I watched her body language when the neurologist said, in December, "dementia with Lewy Bodies" and she was devastated. I'm afraid that a frankly worded summary will irreversibly and needlessly frighten her.
Right now, when she asks why she feels this way, or has she died because she feels so bad, I tell her that yes, there is a biological process going on that makes her body not as strong and makes it harder to think. But that we are all together taking care of each other and we always will. She seems overall content with trusting that explanation.
We are striving to give her an anchor of predictability in her schedule. Our two dogs continue to alert me when she is in another room but having a tough time. She loves having giant dogs watch over her when the aliens come.
We are having a tough time with some relatives thinking they need to share horror stories of life with this diagnosis.... that I'll never be able to keep my sister at home and... well... awful stuff. How do you make people realize/ set a boundary/ that it may be THEIR way to deal with problems, but our way is to find out what we need to know to keep her as well and happy as possible. And then take each day as it unfolds.
I was crying once, changing the litter for her kitties. I don't cry in front of her because it makes her worry. Anyway, kitties don't mind. And as I was helping the cats, I felt a whisper of wisdom in my heart:
"Anyone could love your sister for the last 70 years. She is intelligent, empathetic, well-read, witty, and good hearted in every way. But now, she is also struggling and very vulnerable. Now, in a way, is the most beautiful time in her life to love her. Watch for those moments when her spirit dances through the confusing darkness. Hold on to those moments. You'll take nothing for granted. You'll protect her as the fiercest mother tiger. You'll see that love can give a strength and hope beyond what medical science can provide." Maybe that thought will help someone else having similar challenges. Thank you for being here.

@lindakbe One of the sacred duties for our loved ones with dementia is to be their advocate & set the boundaries they are not able to.

Consider calling the neurologist & asking him/her not to use devastating terminology in your sister’s presence. (You will need her signature allowing communication with you - if you haven’t already done that.) As the disease progresses an empathetic neurologist can be invaluable.

My husband has LBD & although it is different with each person I do empathize with the challenges of an LBD diagnosis. It is considered the most difficult of dementias to deal with. We are about 6 years into the journey (although REM sleep disorder started 20 years ago).

There’s an excellent book “Contented Dementia” which sounds like the exact approach you are taking with your sister. It has guidance on setting boundaries & making it crystal clear to others how they are to communicate with the person. It’s advocacy with a Mother Bear approach. (I’m about to read it a 2nd time. 1st time through I was skeptical & not ready to commit to the approach entirely.)

As the journey continues you will need assistance ensuring best quality of life for your sister AND protecting your own health as well. It sounds like you are off to a great start.

Good morning Linda, I was in the midst of a lengthy response to you yesterday, but apparently didn't hit the reply button, then my computer battery died.
You made a common complaint here, "...We are having a tough time with some relatives thinking they need to share horror stories of life with this diagnosis…. that I'll never be able to keep my sister at home and… well… awful stuff. How do you make people realize/ set a boundary/ that it may be THEIR way to deal with problems, but..."
Then you answered your own question eloquently "our way is to find out what we need to know to keep her as well and happy as possible. And then take each day as it unfolds..."

Feel free to say "no" when any of you are having a bad day, and ask people to call before they come to make sure it is still OK. Also, can you compose a text message, or a short speech in your own words that says something like:
"In order to keep Sis as calm as possible, we ask that you limit your chats with her to good news about your family and pleasant memories. If she begins hallucinating, please do not contradict or correct her, either try gently to change the subject, go with her current state of mind, or maybe offer a drink of water (coffee, tea, juice)" Maybe add "our way [of managing] is to find out what we need to know to keep her as well and happy as possible. And then take each day as it unfolds. We have learned that unpleasant subjects and dire "what ifs" leave us all in a bad state long after our visitors leave."
If visitors go off-track, pull them away and repeat...Once you know who "gets it" you can leave them to amuse your sister for short times and take a little break.
And feel free to ban "bad" visitors - my Dad had a brother-in-law who irked him, and near the end of his life, he asked not to see him. So I would sit on the porch with Uncle & chat - saying Dad was just "not up to it."
Hugs to you and your family for undertaking this aweful, wonderful and stressful journey for your beloved sister,
Sue