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I feel relieved and blessed to have found a caring forum, I am struggling to make the best decisions for mom. She is 93, living alone in her own home and lives 100 miles from me. I travel frequently on weekends (still working fulltime but approaching retirement) to shop, assist with whatever is needed and visit with her. She has dementia in moderate stage, on medication but does not take them as directed. She has hallucinations and yesterday I called upon my trusted neighbor to go see her as she said there were gangsters (its always gangsters) in her home (in her bed) that would not leave. She was terrified and crying. I was devastated being so far away. Looking forward to any support here to move forward in this journey. I am planning to take her for testing for UTI (she had this before) and labwork.

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Welcome!

What everyone here said…plus another avenue of help can be hiring a geriatric care manager. I finally hired one after some strong prodding and now I’m really glad I did.

My mom is about an hour away but there is still tons to take care of and I can’t juggle all of it. The care manager acts as my proxy/sibling for hire plus she’s more savvy with the health care system. She’s really saved my bacon on more than one occasion, for example when I got covid and exactly at the same time mom had a big emergency and went to the hospital!

Geriatric care managers are expensive and I took in a lodger for over a year until arrangements could be made for mom’s funds to help pay for her. That said I highly recommend hiring one - they can really help you and your brother out when you’re not available. I found mine by calling a memory care facility where another relative with severe dementia was living.

Big hug and wishing you the best in these difficult times!
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Welcome! And for starters, don’t even think about moving her into your home. She might want that, and you might think you want that, but she’s more than you can handle. As for in-home care, she needs a team, not just one. It’s 24/7. They will be in and out of your home at all hours, and there are crises ongoing. Please read extensively on this forum what others write about a home care situation and picture yourself in that mess. Start looking at memory care facilities either close to you or close to her and find one that fits her needs ASAP. Good luck, let us know how it goes.
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RM11446 Dec 2022
Thank you Fawnby - no moving her into my home or my brother's home is not an option and I agree with your statements. I am currently researching care facilities close to my home which will move her out of town. Yesterday I spoke with her and she was so excited as my brother called her and is coming to visit with her today - he is the one that is coordinating the "gangster" activities in her home so her thoughts shift radically from one day to the next as I'm learning with her diagnosis. It was SO GOOD to hear her laughing :)
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I cared for my mom long distance across the states. My mom would tell me things that I didn’t realize she was hallucinating, until I moved her here.. medication helped. Yes , get the UTI possibility checked. Things don’t get better from here. Your mom needs assistance whether from in home help or moving to a memory care that will take Medicaid when monies run out.. Goggle care advisors , get an independent or franchise agent to assist you. My care advisor in Arizona did in home care and then arranged AL for my mom. They were a Godsend… Hugs to you !
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RM11446 Dec 2022
Thank you babsjvd! I can't imagine care across the states, I struggle with 100 miles down the road in the same state - we are changing her meds next week to see if that helps a bit until we find her a place and yes, the home care team (they only check in once a month/low or no staff is the issue as everywere else) is assigning me a "navigator" to assist with finding the right facility, I was overwhelmed with how many there are and how bad/good their reviews range, how awful for family to make decisions for loved ones.
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Check her for a UTI!
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RM11446 Dec 2022
Thank you gladimhere! Yes I am taking her for tests this week.
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Most folk want to "live in their own home". Some may add on "as long as possible".

What will that look like?
How can *possible* be extended?
Eg home services, occasional visiting caregivers, full-time live-in caregiver?

What will the line of *not possible* look like when it crossed for your Mom? Do you act before that time (even if a little early) or wait until something big happens to prove it? (Like the Mother wandering onto the main road at night like my neighbour did).

Can the 'gansters' (or other hallucinated/fears) be treated away with medication? Can they be reasoned away by a caregiver?

If they cannot be removed - what's next? When fears or pananoia arrives, possibly added to by being unable to make sense of strange sounds or shadows, which would a better place to be? Still home with full-time help? Or a staffed facility?
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RM11446 Dec 2022
Thank you Beatty, yes those questions are raging through my head.
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Hello, I'm sorry to hear difficulties you are experiencing, definitely a tough and stressful time. Sounds like a trusting neighbor definitely good to count on when you can. I do not have first hand experience of any one suffering from dementia.

I'm wondering if tech is good in these situations? I know it's way of seeing things, but not sure about being able to reassure someone with dementia. I know that the modern home camera's have a built-in speaker and microphone, but that could end up being more frightening. Unless maybe if you speak on the remote camera and just say your name and say I'm on the speaker phone? sorry just throwing it out there. I think other people on this forum have more experience.

But just wanted to say I'm new, as in about a week, welcome and glad you are able to speak about your situation.

Love & Peace.
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RM11446 Dec 2022
Thank you oldageisnotfun (love the name and agree) - yes we have a camera system in place for most of the house areas, front and back doors, garage, main floor and family room. They are a tremendous help to us and we are able to talk with her via the camera system. Technology is great when it works and when its down, its frustrating! but for the most part we have eyes on her 24/7. I hope you find comfort and answers in this forum as well. :)
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Thank you NeedHelpWithMom - you are absolutely right. I am happy to hear these words to reinforce what is needed. I am taking steps to make this happen.
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RM,

Welcome to the forum.

Being so far away from your mom certainly places you in a difficult position. She most likely shouldn’t be living alone anymore. Even when family members are living with their loved ones it’s difficult to manage watching them all day and night.

Has she had many urinary infections or are the hallucinations caused from her dementia? My uncle was living alone and his UTI became septic and he nearly died. Urinary infections can progress and become dangerous.

My mom had Parkinson’s disease with dementia. She started trying to walk out of the front door. So, it was definitely time for her to be placed in a hospice care home so she could monitored by a staff 24 hours a day.

My mom lived to be 95. Hallucinations are disturbing and frightening. My mom found comfort with having a staff looking out for her 24/7. We visited her often.

You will be relieved knowing that your mom is safe in a facility and is being cared for 24 hours a day, 7 days a week and your mom will no longer be afraid being alone at home. You can’t be absolutely certain that your neighbors will be available every time you call on them.

You can visit your mom without the stress. Your mom will adjust to her new surroundings.

Best wishes to you and your family.
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Welcome to a wonderful forum! I'm not in your situation so I can't offer any advice, other than to say that there is lots of caring and information provided here.
Good luck on this new journey.
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RM11446 Dec 2022
Thank you Christine44! I appreciate your kind words :)
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"currently researching assisted living as she is 100 miles away and want to move her from her home closer to me - resistant to giving up her home "

Elders seldom want to give up their home. Do you have POA/HCPOA? Is she still considered to be mentally competent?
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RM11446 Dec 2022
I appreciate your comments - she realizes she is losing the ability to do simple things and that the home is too big and honestly, frightening to her now so no she does not want to give up her home but yes she feels she is getting ready to do so for her own safety/peace/care. Yes I have the needed POAs in place. Thank you for your concerns and questions.
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Good morning RM11446
Welcome.
Poor mom is having a tough time and you by default.
The thing about UTIs is they can be toxic and move fast. Does she have gangsters sometimes and Not test positive for a UTI?
It is good you are researching a move for her. That sounds appropriate. No one wants to leave home but sometimes there is no alternative.
I lived a good distance from my loved ones and found home health to be a real blessing. In this case, I would be on the phone to them and they would do the test and send the request/results to the doctor. This is a benefit through Medicare for homebound seniors.
Sometimes we would start an antibiotic and then change it if necessary after a culture result came in. My loved ones weren’t really bothered with UTIs very often but some here on the forum use an over the counter product called D-Mannose and think that it really helped them. You might google that.
Good luck and I hope you find the forum helpful.
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RM11446 Dec 2022
Thank you 97yroldmom for your comments. Yes she has gangsters almost daily (doesn't always see them but they are active in her mind) but they are active in her home and threatening her with the UTI present it seems, not always. The last episode was terrifying for me as it was for her. Unfortunately, her communication with others is challenging and she does not answer the phone for this reason most of the time. Thank you for the reference for the meds, I will definitely google that. Thank you for your well wishes!
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Thank you funkygrandma 59 yes in total agreement that its not the neighbors responsibility but they are good friends and have been a Godsend to this point - yes she needs to move out of her home. I am working toward learning the dementia path and actually learning alot as I visit with mom on what NOT to do or say. I am fully prepared to enter her world to help her through these years. Thank you so much for the welcoming notes :) I feel better already.
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Welcome RM11446! Hopefully you will find this forum helpful as you take this hard journey with your mom.
Unfortunately it sounds like your mom should no longer be living alone, and changes will have to made soon, as it's not her neighbors responsibility to look out for her. While it's nice that she has some that you can trust, it's a lot to expect from them.
She needs someone(hired with moms money)there at least most of the day to make sure she's taking her medications and staying calm during her hallucinations. And the best thing you can do while she's having a hallucination is to just go along with them and tell her that you've got the gangsters out or that you've called the police and they've gotten them to leave. You will now have to enter her world as she can no longer live in yours.
I wish you the best as you get things figured out and know that we're here if and when you need to vent.
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