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Momma

Our mom start showing signs of memory loss around 5 1/2 years ago. She was 68 at the time of onset symptoms. Fast forward to now , Mom is almost 72.

We officially got her diagnosis in Feb of this year, advanced dementia most likely alzheimer's. This past year has been a rollercoaster with mom starting to halucinate at times, it seems like sundowning went from evenings only to now lasting 24 hrs at a time. She thinks she is being held against her will at an institution. She is at her home and has never been in any Type of facility. She is crying alot more and constantly saying "i want to go home". We have tried taking her on a drive and then putting the address in gps for home and then taking her back. This worked twice. We can not afford an in home aid , so…

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pannwalls
May 31

I am so sorry to hear about the difficult journey you and your family are going through with your mother. It is heartbreaking when "home" feels like a place they can no longer find, even when they are already there. Since you mentioned that GPS drives have worked previously, you might try "I know you want to go home; we are going to get things ready so we can leave soon," I did that for my mom and it worked. Engaging her in a repetitive, soothing activity or playing music from her youth might also help manage the 24-hour sundowning and hallucinations. We also started using Passion Flower (an herbal tincture) for my mom and that helped calm her as well. Got it right on Amazon. Here is a link: https://www.amazon.com/dp/B071FHMBDD?linkCode=ssc&tag=genevievehald-20&creativeASIN=B071FHMBDD&asc_item-id=amzn1.ideas.1ACB8NN8QW22U&ref_=aip_sf_list_spv_ofs_mixed_d_asin&th=1


Please know that you are doing an incredible job under very challenging circumstances. Sending prayers and strength to you, your stepdad, and your entire family.


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I am the caregiver to my adult daughter with Down Syndrome. What brought me to this group though is for the last year and a half my dad has shown significant signs of some type of dementia. He has not been diagnosed yet. My sister and I live 4 hours away from him. My brother lives in the same area as my dad but also has young children and is very busy. It’s been so hard trying to figure out what to do to help him when he is so far away. He lives in a apartment by himself. We dont know what to do with him to keep him safe. He isn’t making good choices as far as money, his diet, and he keeps seeing things. He thinks somone comes through the wall and moves his fridge, trying to steal it. He has called the cops before. He make…

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pannwalls
May 02

I’m so sorry you’re going through this, it sounds incredibly overwhelming, especially with everything you’re already balancing as a caregiver. You’re doing the best you can in a really hard situation.

What you’re describing with your dad (seeing things, paranoia about someone coming through the walls, poor decision-making) are serious symptoms that really need medical attention as soon as possible, even without a formal diagnosis yet. If your brother is nearby, would he be able to help get your dad to a primary care doctor or neurologist for an evaluation? Even starting with his regular doctor can open the door to support and resources.

You and your siblings might also want to look into contacting your local Area Agency on Aging (for your dad’s county). They can help guide you through options like in-home support, safety checks, and programs that aren’t always income-restricted the same way IHSS is.

Given the safety concerns (especially hallucinations and calling the police), it may also be worth talking as a family about stepping in more formally, things like power of attorney or medical decision-making, before things escalate further.

Since distance is such a challenge, sometimes families will coordinate a rotation of visits, or look into hiring a part-time caregiver privately just to check in regularly and help with meals, meds, and safety.

Most importantly, please don’t feel like you have to figure this out alone. Situations like this often take a team; medical, social services, and family working together and it’s okay to ask for help.

You’re clearly a very caring daughter, and your dad is lucky to have you advocating for him.

Im so happy I found this group! My 91 year old dad has been living witH this disease for the oast 10 years. He lived with me for 6 years before I needed more help in keeping him safe and placed him in an AL community. He was doing great until he fell in August, while dancing. Since the surgury, rehab, and now reliant on a walker, he has declined rapidly. He is a lot mire aggresive with staff and recently with another patient. (No, he doesnt have a UTI) They have put him on some heavy duty meds that makes him zombie like. I hate this. I have an appointment With his Nuero doctor this week and I hope she can help find a good mix of meds to keep him calm, but still let him live his best life. This is so hard.

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Genevieve Haldeman
Genevieve Haldeman
Nov 16, 2025

Hello Jana! I am so sorry to hear about your dad. This disease really is so hard. And I know what you are saying about the medications. Oftentimes the side effects are brutal. When they put my mom on Ativan she became a zombie as well, we hated seeing her like that. We tried a holistic medication that has been working really well and she's not as tired and out of it. It's called Passionflower Herbal Extract Tincture

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Finally finished my Moms memory walls. It was a project we did together!


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pannwalls
Sep 19, 2025

LOVE it!!


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New From Florida

Hello friends! I have been following Ms. Phyllis on FB and Insta for a while and just saw about this support group. My name is Jena and I have been caring for my Mama Dot for the last 6 years. She has always come to Florida from Atlanta to visit us for a couple of weeks throughout the year. She was a retired CPA who worked for the state, and when she retired, she just packed her golden retriever Bailey in the car and make the 8 hour journey. Then one time she didn’t ever show up. I was frantic. Her phone was dead and I had no clue where she was. After 2 hours, we called the police. A silver alert was issued and after about 4 hours, a clerk at a gas station about 5 miles from my house called 911 to report an older woman who wa…

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pannwalls
Sep 19, 2025

Hello Jenna! Thank you for following my mom and I. And thank you for sharing your and her story, sounds so much like my mom when she was first diagnosed. How scary for you and her when she got lost making that drive to Florida I remember my mom getting lost driving and that was just to her hairdresser's salon a few miles from our house, we had to try and find her along the route because she could not figure out how to get home or to the salon. That was in the beginning of this awful journey. Your mom is so lucky to have you and your husband, don't ever feel like you are failing. You are doing amazing!! I know (along with every other caregiver) just how difficult caring for someone with dementia is. I know you do not want to give your mom sedatives, we felt the same way. They are so strong and at a higher risk of falling. That said, we found a natural sedative that has really worked well. At first we were buying it from a naturalist but then we found one on Amazon that really works. It calms my mom, but she's still alert and responsive (unlike when we give her Ativan). The one I am talking about is called "Passionflower B60 Alcohol-Free Herbal Extract Tincture, Concentrated Liquid Drops Natural". I could share the link with you if you want to email me: pannwalls@gmail.com. Sending love and prayers to you and your mom!!

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Hello

I'm just starting this walk with my mom. At 82, she started showing more and more signs after my dad had an unexpected hospital stay and procedure. I really feel the stress triggered the advance. My father has several conditions, some chronic and 2 primary cancers.. he is in palliative care although he may have up to 2 years at this point. I am their caregiver, at 60, and also have a 13 yr old daughter.. so it's a lot. My mom's mother also had Alzheimer's, dying at 94 and so I am very familiar with the progression and what the future holds. I have no siblings, but my husband is as helpful as he can be.. best of all, we live very close to my parents.

I saw a video of Phyllis and I looked up your group.

I hope to gain some insights and inspiration from members of…

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Genevieve Haldeman
Genevieve Haldeman
Apr 26, 2025

Hi Stephanie. Thank you for sharing your story. I am so sorry for all that you are going through. It's very difficult caring for our parents when we have our own families and children we are caring for as well. You are doing an amazing job managing it all. There are some helpful resources on our site and Dancing for Memories offers other support. If you are in need of something, you can complete a grant application. We'd love to help you on your journey. Sending love and prayers to you and your family.


This post is from a suggested group

Hello. I came from Instagram, where your mother's story touched me as I walked the wretched Alzheirmer's journey with my own beautiful mother.

Her journey with this horrible disease began eight years ago, three years after she lost her husband, my father, to Vascular Dementia. Throughout it all, she never stopped smiling, never stopped singing, and never let us know she was anything but happy. I live several hours away, and fortunately, my sister was able to be with her daily while Mom was a resident of the nursing home. My sister called me every day after lunch or dinner, and I was able to talk to Mom. It was the best part of my day! I started writing a list of things she said that I knew I would want to remember one day. My favorite? One day, when I told her I didn't know anything exciting,  she said,…

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Beth Lind
Beth Lind
Feb 18, 2025

I’m so sorry you lost your Mom! What a great way to remember her. I too am holding on to the wonderful and precious times I have with my Mom until her last day. Thank you for sharing.

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Hi, my name is Beth. My Mom, Marilyn is 85 and was diagnosed with Alzheimer’s this past spring. She is now in the middle stages. My oldest brother lives with her and has been caring for her but now we have more people helping as she stopped bathing and getting dressed. They are both planning to move to an assisted living place together soon. I’ve noticed some things on your instagram that people have given as gifts. Do you have links for these items? The Gadget box or the snuggle puppy for example?


Also do you have any good resources on to how to talk with someone with Alzheimer’s. My brother keeps trying to correct her but I don’t think it’s helpful and she gets very anxious at times when he does.


Thank you for creating this! It’s a devastating disease and the grief is overwhelming.

Always, Beth

This post is from a suggested group

September 29, 2024 · updated the description of the group.

Welcome to our group Dancing for Memories Caregivers Connect! A space for caregivers to connect and share with each other. Start by posting your thoughts, sharing photos and videos, or creating a poll.



Christine Thiel
Christine Thiel
Oct 01, 2024

What do you find is most challenging as a caregiver?

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