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I can definitely relate to the comments here about phone conversations being different from an in-person visit. When my parents were still living at home, I noticed changes in their general competence at taking care of things, and my father even noticed my mother's memory going. They were both "slowing down". I talked to my sister who called them often but hadn't visited in several months. She seemed confident that "everything is fine". I kept suggesting that "you ought to make a trip here to see firsthand how things are going". She did and her reaction was essentially "Oh my goodness--we need to do something!" so she finally believed me, and we went from there.
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Scout0421:
You said-
"The doctor has asked us to observe, document and send a weekly summary so that she can begin evaluating things. I'm just surprised that I've basically diagnosed her before the physician did. But like I said, I'm not well-schooled in this disease so what do I really know?"

Many people, including PCPs, are clueless. The early stages can be difficult to see or understand. What some may think are just lapses in memory or judgement could be those early signs, and if you don't see them or are not aware of what they mean, those clues can be easily missed. Those who see/interact more with a person ARE going to be the ones who know something is off. Our mom herself knew she was forgetting things, but just chalked it up to "I'm old, I am allowed to forget some things." Sure mom, but what you do not know is how much you're forgetting!! I did not say that to her as it would not have been well received. As for doctor - how often would mom have seen her? Even when mom sees doc, how long is that visit? It is very easy for many early dementia patients to present themselves as 'normal' for short periods of time, and a doctor visit or brief phone calls are not enough to see the true problem. Neither of my brothers saw the issues; although I do not consider myself 'close' to mom, I did talk with her more often on the phone, and assisted sometimes with groceries, so I saw/heard those early warning signs. That is when I started looking up dementia and symptoms. The non-local brother called every Sunday, but those conversations were not long enough for him to notice the issues until much later. Brothers took way longer to get on board despite me providing information, both her behaviors and what I learned about dementia (even now younger brother doesn't get it all!)

I am somewhat surprised that she exhibits these bathroom issues (showering, toileting) since moving in with you, but there was no evidence at her place when you picked her up from there? Yes, moving someone who has dementia can upset their "routine", but this seems rather extreme.

As for what to do:

Start looking for/at places, in particular those that have MC units. These often have long waiting lists, especially the "better" places. With only one bathroom, I do not see keeping her at home as viable for long, UNLESS a home health aide can keep the messes to a minimum.

Despite mom not wanting to discuss home health aide, she is not the one to make decisions now. You do NEED someone to assist AND someone to be there when you cannot be there.

Read up on dementia as much as you can (in your *spare* time!)

Since you indicate you already have DPOA, that part is covered - if she brings up finances, fluff her off with something. You do need to determine what her finances are, including after the sale of the home, to determine how much care can be covered. We put the bulk of mom's savings into a trust to protect it from her and scams, so that we have enough to pay for MC (sale of condo, which is also now in the trust, is TBD, but once done, assets will be added to that trust.) If your mother qualifies for Medicaid (income and asset based), apply asap. It takes time to process. Also, be aware that not all AL/MC places accept Medicaid (those queries should be done when checking out places for her.) Additionally, in order to process a change of address to ensure tax documents arrive (these CANNOT be forwarded, at least not any federal ones), you should consider applying to be representative payee for SS. I recommend calling a local office rather than the 800 main number, you'll get much quicker response. If you have the incompetence documentation in hand, this should be easy enough. It requires an appointment to apply and after approval, setting up a special account - they will give you all the details.

Do NOT try to discuss details of anything (financial or otherwise) as it will not work! This is part of getting yourself educated - we have to learn how to make little white lies, how to redirect focus, how to distract. If she wants to talk about anything, even the past, just go along with whatever she says. You cannot reason with or argue your way to anything. Our mother typically clammed up if you tried to correct her on some detail (she thought my daughter was some cousin from the past.) Also, if she accuses you of things or berates you or lays on guilt or complaints, you have to learn how to let those things slide. YOU know what you are doing for her, she lives in a different reality. Either ignore or fluff it off somehow. DO NOT feel guilty about ANYTHING you have to do!! It is typical for the care-givers to take the brunt of any/all negative behaviors.

Someone else suggested FMLA - if your own finances can support this, it is an option to consider while working on getting everything "arranged." It guarantees your job and allows you up to 12 weeks, but that is without pay. If your boss is supportive, find out how many days you can work from home until some resolution is found. This would ensure continuing income, but allow you to monitor mom when no one else is available.

Hopefully you can get this all worked out, sooner rather than later. Although brothers balked at the cost of MC, no one took mom in (I could not for many reasons, including that I cannot physically care for her) - I did not object, but one brother is younger and still has to work (no one home to watch mom, so it will still cost!) and the other is not local (he is of retirement age, but keeps finding employment for more income, so same problem, in addition to being 2 days away, so we cannot help him in any way.) It definitely was NOT safe to leave her in her condo alone.
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Sounds like your mom's doc was as uninformative and unhelpful as my mom's primary. He has been of no help whatsoever. You need a neurologist and a neuropsychologist, Scout. Start with the neurologist (they're tough to get in to) and s/he can then include the neuropsychologist. I'm so sorry for what you and your mom are both going through, especially with you having young kids. I'm lucky that my mom didn't get to that point until my kids were grown. You can't make your decisions based on what she is or is not willing to talk about. She is not in decision-making mode.
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Hello Scout, I was in your situation seven months ago but I was dealing with two parents. I never realized that my father had dementia and never saw how severe it was until my mom and dad moved into my house. I felt blind-sided as well because I saw my father when I went to visit but having him live with me was a dose of reality. My mother never mentioned that he was incontinent or could be belligerent. My father's doctor never said anything about cognitive issues just said it was old age. The day he came to my house, I saw what you saw, someone who would not bathe, was uncooperative, and was incontinent. His bathroom habits were appalling. I was afraid to have anyone over because of his poor hygiene. I was forever sanitizing everything, cleaning bathrooms several times a day. The poor hygiene was something I could not tolerate. I know you must be sick over such issues with young children in the house.
If you could, it would be best to have your mother go to a nursing home and you can visit her often. I say this because when you take care of someone who has so many issues and is uncooperative you can easily become overwhelmed and you and your family will suffer. You also don't want to become resentful and angry at your mother. I wish I had put my parents in a nursing home because it is so hard to deal with their issues on a day-to-day basis and also tend to my marriage.
Do your research, read about dementia, go to the Department of Aging in your community and check for resources, talk to your mother's doctor--get as much information as you can, and of course, come to this site to ask questions from people in the trenches. I wish you much luck in your quest to help your mother and your family.
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Dear Scout, I know my response may be unpopular but I beg you to place your Mom ASAP for her dignity and your sanity. I made mistakes that hurt my marriage and scarred my children. I thought we would band together and get through the horror of my Mom’s dementia and it would make us stronger as a family. I was wrong. This disease just gets worse and takes and takes. You have a precious young family and supportive husband. Your kids need a healthy Mom and a home they’re not afraid to invite their friends to. I may sound cruel but my heart really goes out to you.
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Scout -

First and foremost, big hugs and kudos to you for taking on what you had no idea was a very difficult situation with your mom.

It sounds like you have a good doctor for your mom, and that's wonderful - a doctor that listens to your concerns, considers them and makes them part of the treatment plan is a fantastic asset to have on your team as you tackle your mom's current and future needs.

I can't offer much more advice than has already been given on the topic of handling things with your mom, but what I will offer is this: start writing.

If you value your mom's memories of her childhood, her family that passed away before you were born, information she has about relatives that you may not know or places she lived that you don't know about....start writing when she starts talking about them. That is the one regret I have about my parents being gone. Mom was a huge storyteller - she loved to tell us stories about where she lived as a child, her mother, her father, adventures she had while she and Dad were dating or a young couple, her love of the Great Lakes, etc - and no one ever wrote them down. When I moved in as her caregiver, I tried to get her to tell me about her memories, and all I would get most of the time is a line or two written down, and then she'd go blank. The dementia was advancing so rapidly that she was already losing those memories. I never got to write down the stories she told us, and now there are many that I can't even remember myself. They're lost.

Also, if there are relatives that you don't know, or never met, see if she has photo albums and can help you identify those people. That's one way to possibly keep her busy for a while and spend some bonding time with her (if you want to do that). Write the names on sticky notes or tape flags and put them with the photos in the album for future reference. Again- I tried to do this with Mom, and she passed away before we got through all the photos - so there are vintage photos of people that none of us recognize and there's no one to ask who they are now.

I know with all the other responsibilities you have right now, writing seems like a silly thing to do, but just keep a notepad handy somewhere that you can jot things down, if you're at all interested in keeping them for the future. (If your relationship with your mom is such that you don't want to do this, I certainly understand - but as I said, it's the one regret I have - that I didn't write these things down, and when I tried to get the info from her, it was too late.)
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Susan, I love this and want to get started on it
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debdaughter - don't wait. I waited too long, and then suddenly, it was too late.
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Susan, Thanks for the idea. Think I'll get started this wknd.

Scout, My brother lived w/ my mom, so my sister & I thought he would alert us if she was ill. Wrong. My sister got a call at work recently from one of Mom's neighbors saying that she'd found Mom wandering outside lost. Thankfully, they took Mom home and found my sister's info. We had not been made aware of her dementia, incontinence, etc. until my sister arrived at her home, where there was overflowing trash & roaches. She was quickly put in Rehab and moved into Assisted Care last wknd. The whole thing was a total shock because, like you, we thought she was doing okay.

I agree w/ everyone who advise to put your Mom in Assisted Living. I admit I cried a lot last wknd. I'm the youngest and I was born yrs after my parents thought they were done. It was just me and Mom for a long time. BUT it is the right thing for all of us. She can get the attention she needs and we can have the peace of mind. Don't feel guilty.
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These are very good suggestions - don't delay.
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Scout,
Like you, I thought everything was fine with my 89 year old mother when we'd chat on the phone. I later learned that in early dementia, the person can do small talk or chit-chat well because they don't have to remember anything.

At that time I lived in Puerto Vallarta, Mexico and she lived in Northern California. We moved to Tijuana in 2013 and I went up to SF for a Christmas visit with mom. I found out MY MOTHER HAD DEMENTIA!
Oh my goodness, where did THAT come from?
A week's vacation got scaled back to 3 days so I could get back to Southern California and find a place for her.
She was well enough to move into a senior semi-assisted apartment. Meals, light housekeeping and transportation was included.
Unfortunately, even with the dementia drug Aricept, her Alzheimer's continued at a fast pace, advancing 2 stages in a year and a half. I took over all responsibility for whatever she needed.

She became confused, would hide things and accuse people of stealing, she'd go down to breakfast at 3 am and she quit bathing. I had to "steal" the checks and credit card because she wrote a check to the hairdresser at the apartment complex for $800.!!! Thankfully she returned it.

We had to place her in a memory care facility. We tried bringing her home but she was unmanageable. She'd take off her diaper and urinate on the floor, hit us, spit at us and keep us awake all night.

She's happier where she is and we're happy with her care at the MC.

PLEASE do yourself and your family a favor and place her wherever she can go. These are unsanitary conditions for your family and could be traumatic to your kids.

I'm so sorry this happened and I sure sympathize with being "blindsided".
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It's time for you and Mom to switch roles. You will have to make decisions for your mom, on your own now. When people start to realize their cognitive skills are declining, the most common thing they do, is attempt to hide it. Don't wait for her doctor to make the move of saying something. You make the move to have Mom evaluated by the doctor, for dementia. A firm diagnosis will allow you to make appropriate and safe decisions for your mom. If she is uncooperative, consider a guardianship or a conservatorship. Don't wait for something to happen to Mom, based upon her bad decisions. If Mom has a substantial savings, you may want to consider an assisted living arrangement for her. Late onset Alzheimer's has no treatment, but there are medications that can curb aggressive or dangerous behaviors, to keep you and Mom safe.
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Good news no infection but unfortunately that leads more to dementia which please realize isn't going to get easier . ..waiting and watching for many months is much easier said then done...what you are seeing with her now is a clue that truly needs to be realized of what is to come sooner then later . ..I am speaking from experience xoxo
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Its not up to her- she is not of sound mind & She’s in your house. Your house = your Rules.
Guilt tends to drive us in the beginning. I used to run everything by my Mom to “get her on-board” so to speak. Now 3yrs in... I can tell you its like beating your head against the wall. My Mom’s Dr just recently told her- she wld be healthier in an environment suited for her needs (Skilled Nursing) I hv stopped trying to appease her. We have help with sitters now - even tho she said She wld Not let them in her house.
Please get help, you do not need her approval. And tour skilled nursing facilities in your area as I am. Our families are important too.
Good luck.
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