Blind-sided by what I think must be dementia?

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My mom had me VERY late in life. She's almost 90 while I'm in my early 40s, married, with a young family. She just moved in with us a week and a half ago & we're struggling very unexpectedly. She was living on the other side of the state & we wanted her closer because we felt that at her age it was only a matter of time before things began to decline. Truth is, we've been trying to get her to move out here for years, but she didn't want to leave her friends and her home. Since daily calls gave us the impression that she had a full social life and was active with daily chores and errands, we didn't push the issue until very recently. Now she's here & reality is very, very different. Getting her to shower is a battle. I've gotten her into the shower once in 9 days and it was because my husband put his foot down and told her she had no choice (she stunk of fecal matter at the time). Showing her the shower set up it became clear almost instantly that she's not capable of showering on her own, not even with a shower chair and grab bars. When I got her clothes off it also became clear that it had been a long time since her last shower. Then there's her bathroom hygiene (or severe lack thereof). In the past week we've had at least 3-4 occasions where I've found fecal matter smeared all over the toilet, the floor, the bath mats and even all over the sink. She had to have had it all over hands and when asked she told me that she has to pull the fecal matter out of her because it gets stuck. We started her on MiraLax. That got rid of the constipation but she's still smearing fecal matter all over the place, so now I'm in a constant state of trying to disinfect anything she touches. I've found wadded up toilet paper that smells like fecal matter in the bathroom trash. As for our kids, they found the last mess in the bathroom and now they (9 year olds) are grossed out and upset that grandma is "putting poop" all over our only bathroom. Mom doesn't dress unless asked to do so. She doesn't put her teeth in unless I insist (and boy does she get angry when I make this request). She hasn't inquired about or made any attempt with respect to food or meal times. If you put food in front of her, she'll pick at it and eat some of it. But otherwise, the only food source she has an interest in are Carnation instant beverages. She hasn't opened the fridge once in 9 days! She's unable to remember information that we tell her. The other day she was surprised when I told her it was time to head to the car, even though I'd given her reminders all morning that we were going out. I was heading back into the house after getting our daughter on the bus one morning and mom absolutely freaked out that my daughter wasn't with me. She thought I had lost our daughter. It wasn't until I showed her a clock that she understood that our daughter had just left for school. She'll randomly wander into the kitchen and announce that she's heading out to get our daughter off the bus (at 10 in the morning and after multiple reminders that she is NOT EVER getting our daughter on/off the bus or babysitting). Honestly, we weren't prepared for this. She always seemed lucid and everything seemed logical when I spoke with her on the phone long distance. Looking back, I suspect all those social activities and errands she'd tell me about probably didn't happen (I can't imagine how they could have). I work full time, as does my husband. We both travel for business (he'll be away the next 3 weeks in a row) and we have kids in elementary school with all the typical school and extracurricular activities you can expect with 9 year olds. We thought we were taking on an elderly mom that needed more of our support, sure. But this is much bigger than that and despite my limited knowledge on the topic, dementia keeps coming to mind. Does that seem like a fair assessment? Her doctor has not ever said a word to me about any cognitive issues at all so I'm really feeling blind-sided. What should our next steps be? I feel so stupid for being so clueless but I really, truly thought she was relatively self-sufficient and of sound mind until about 9 days ago when she moved in. She's also so angry and uncooperative. She's never been an easy person and I've always treaded lightly around her. But she won't even talk to me if I bring up so much as a home health aide.

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First, taking her away from what she was familiar with will make her already problems worse.
Second, Mom needs to be put into pull ups. You will need to be with her when she goes to the bathroom. She is no longer able to do what needs to be done. I suggest getting Huggie baby wipes to help with cleanup.

Third, Mom can't be left alone. If she can afford it, find an Assisted living. If she can't then file for Medicaid and find a nice Nursin Home. Daycare would be an option at this point until you get your ducks in a row.

Fourth, this is not going to get better. Mom has Dementia or Alzheimer's and with your responsibilities, you can't have her living with you. Your children and husband are ur priority. The time you have needs to be spent on them.
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Reply to JoAnn29
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One more thing, she is now the child and you the adult. It's no longer what she wants but what she needs and that is to be clean, fed and safe. That is what you owe her and if that means she needs to be placed somewhere other than your home, so be it. I am not trying to be harsh here. Believe me you are going to hear this from other members. At 90 Mom has lived a good life. Since your children are young, they need ur attention. Good luck.
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Reply to JoAnn29
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What your mom was able to do on the phone with you was show-timing. She was able to sound lucid and coherent when she was anything but. My mom did that until she passed away at 97. According to her, she was taking her meds and eating well and everything was hunky dory. When I'd go over there (she lived nearby in independent living), I'd find she'd forgotten her medicines for two days straight (in spite of me calling her reminding her to take them). She'd leave half-eaten food out on the counter or just leave them open in the fridge (not in any kind of container or anything). Luckily my mom didn't have the hygiene issues your mom had. So our parents with some form of dementia can have a great ability to hide their true condition until you spend some time with them.

JoAnn is right - your mom either needs assisted living, a nursing home, or memory care. It just depends on her overall ability with the activities of daily living (ADLs) and her ability to do for herself. Is she able to ambulate around? Can she carry on any kind of conversation? Also, make sure she doesn't have a urinary tract infection (UTI) as those can mimic dementia in seniors.

Don't feel bad - just imagine what your mom was doing when she lived on her own. You've rescued her and will now make sure she's safe and well-cared for. So you're absolutely doing the right thing and just in time for your mom.

Keep us posted, as we all learn from each other. I'm sure you'll also get more good advice. You've found a place with a lot of knowledge about caregiving.
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Reply to blannie
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Scout, just a couple more tips.

Urinary Tract Infections in the elderly can cause sudden decline and psychiatric and behavioral issues. When something is suddenly off, think UTI. Get a culture, not just a dipstick.

Elderly women, in general, get poor medical care. It requires a good geriatrician, vigilance by some one banging on the gates and attentiveness to changing symptoms. Find a great doctor who doesn't dismiss your concerns.

I went to see my doc yesterday and said that I was tired all the time; I'm 64 and I said, I think it's probably just that I'm getting old. "Nope, we gotta figure this out" was his reply. He reviewed my meds and wants to change my allergy meds; sleep study and screening for depression. Also PT for my constant knee pain. THAT's the kind of doc you want for your mom, one who investigates.

At the same time, you want a good workup for dementia, which may be best done by a geriatric psych or ger. neuro. If you get to a place of "the best treatment is comfort" then you stop trying to put out the fires and you figure out how to get her the best quality of life without lots of tests and poking. (((((hugs))))
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Reply to BarbBrooklyn
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I feel your panic reading your post. I believe there are some initial test that could possibly be done at perhaps primary care dr office to determine if there are indicators of dementia etc. It is going to be a rough ride for you & your family. You will probably have to stress to her that moving forward its what is in her best interest to have some help for h er so you can & hubby can deal with the kddos. It isnt easy - Im dealing with FIL in same situation but as of last month we had to move him to nursing home/memory care after he had a heart attack. Best of luck...they dont teach us these things in school...
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Reply to AlisaD
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Place to start:

Call your local Area Agency on Aging; tell them that you have an elder living with you who needs a Needs Assessment, stat!

Does mom have a new local doctor?

Find a geriatrics specialist and get an appointment as soon as you can. Have her medical records from her previous doctor sent.

If you have a HIPAA release from your mom (and I would ask her to sign one right away so that you can have discussions with all of her doctors), send it to the old doctor and set up a phone call to discuss mom's "previous level of functioning" since you are worried about her "sudden steep decline". You tell previous doc that you are trying to figure out if this is a sudden onset, acute problem (maybe caused by a UTI or stroke) or simply a gradual worsening of her previously seen condition.
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Reply to BarbBrooklyn
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Wow! You all are so wonderful. A few updates...

1. I brought her to an Urgent Care facility today because I hadn't planned to switch out her physician until her final annual exam scheduled for next month (we're in the process of selling her house so we were going to have to make a trip back to my hometown anyway). Anyway, boy what an adventure Urgent Care was with mom. I followed the advice I'd seen and just didn't get into the details. "Mom, we need to run an errand. Time to get dressed." Then once we were there in the exam room & she started to freak out a little bit I told her "this test is for your exam with Dr. K next month." She calmed down immediately and the good news (I guess) is that there is no indication of infection, though they are running a few lab tests just to be sure and we'll know tomorrow.

2. Durable POA....I already have that (thank God). We did all that paperwork at the end of 2017. She had complained about how much she hates paying bills/managing her checkbook and I offered to take over her finances for her. She jumped at the chance so we had all the legal loopholes tied up with our estate attorney. I have full control of her finances, I'm her Health Care Proxy and my husband is back up for all of it.

3. I talked with her (current) physician today. She's encouraged me to get a case manager hired asap. As another poster also pointed out, it'll be a bit of money but I'll have a professional helping us to set up home care, etc. Doc also told me to take a deep breath. My instincts are probably right but it hasn't even been a full 2 weeks yet. Her advice is to get home care so it's not all on our shoulders, get a case manager pulled in to help us navigate all the services available, document our observations and keep feeding them to her (current) doctor, and hopefully if we can keep things stable just a bit longer the doctor will add some cognitive tests to mom's annual exam next month so that when we transfer her to a doctor out here where we live, they'll have current data to work with. The doctor told me there's a lot of poking and prodding involved in this next exam and as long as I'm willing to make the drive out to hometown with mom, she'll probably cope better going through all that with a medical person she knows. Then we'll let the new doctor take it from there.

So that's where we are for today.
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Reply to Scout0421
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Thank you for your feedback and encouragement, JoAnn29....and that's how I take it, as encouragement. I'm a rather direct gal myself so I appreciate your candor and don't take it as harshness at all. Yes, the pull up diapers were one of the things I immediately identified as a need after her first go round in the bathroom, so at least that's something that can be checked off the list. I work full time outside of the home - my husband's the one that works from home (when he's not on a business trip). With him away these 3 weeks, I've gotten approval from my boss to work from home but that's temporary so helping her in the bathroom each time is a dilemma we're working towards solving. A neighbor suggested taking some time off but with having kids, I need to reserve time off for when they're out of school (or home sick for a day). I'm rapidly coming to the conclusion you proposed...a nursing home is going to become a need rather quickly. I feel terrible about it. She moved out here with expectations of living with us and enjoying life with us but, wow. I feel like we're in fire drill mode most of the day. 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?
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Reply to Scout0421
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not sure if mentioned already. but along with the dementia also comes *bad judgement.* so make decisions based on what ~you~ think is best. and pretty much "don't share" what you decide. I try not to discuss too much with my mother (cant anyway) about what's going to "happen". My mom always tells me. "Oh I don't need you to do that for me, I can do it later." And I already KNOW she cant remember whatever it is that needs to be done.
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Reply to wally003
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Find that elder law atty and have him make out a durable POA (DPOA) and Health POA for mom, naming you primary and hubby backup POA. Then, you tell mom that you lost that paperwork so you could help her when you moved out of the dorm at college. You need her to sign it again, and the atty has it. Go!

Atty can tell you from what he sees if you need to go for guardianship.

It does not matter if mom does not want to see a doc. Don't ask, just make the appt and get her seen. Go back with her, and take a letter with her symptoms. My mthr had no records, but she was taken care of. GO, *after* the DPOA and Health POA signing.
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