I am fairly new to this. Stuck between mom's independence and her ability to care for herself. Any advice?

Hello LimboMomma.
If you are concerned about her judgement, you should be concerned about her driving.
Everyone of us wants to remain independent as long as possible. We are trained and encouraged from childhood to "be independent".
It may be hard for your mother to let go of some of that.
There is already a lot of good advice here, so I won't add much.
My only other thought, which I haven't heard from anyone else is, her bathing and cleaning may also be a sign of her simply wearing out. Tired, tired of cleaning, just doesn't have the energy or motivation.
You could start to address the issue by offering to hire someone to come in and help her with bathing and tidying her room. She may find it a welcome relief.
Her response to having help will help guide your next steps. Does she welcome the help, or is she adamantly opposed? Is she depressed and unmotivated, or does she insist everything is fine? That will give you a clue to her mental state.

Insist on having her driving skill evaluated. But have a plan in place so she can still get around. Set up a rideshare account, and show her how to use it, so she won't feel so scared about giving up her driving independence.

At home, find easy tasks for her to do, so she feels involved and useful. Like sorting something or folding small items like dishtowels. Nothing too taxing, just give her a sense of purpose.

If you sense she is depressed, let her doctor know. Medication may help.

In the early days of my DH’s dementia I was still able to get through to him some of the reasons I made a request or a ‘house rule’. Now, telling him ‘why’ is just an effective way to burn up an hour with arguing and repetition.

I suspected loss of reasoning ability was going to be our future so was attempting to ingrain some routines. It didn’t work very well at all. I don’t think DH was able to retain much, but I learned not to waste so much time and energy trying to get him to do things. In short, speaking up might be worth a try right now but maybe not for long. You’re in for a frustrating few months I’m afraid.

The only encouragement I can give you is that it will all change over time and you will begin to define your new roles. Expectations will become clearer. In the meantime you’re going to be grabbing the reins in fits and starts and there is going to be resistance. Maybe hire a housekeeper in once every couple of weeks or whisk into mom’s room yourself and gather up all her dirty laundry like it’s the most normal thing in the world and you’ve been doing it forever.

There is much advice and information on this platform from new caregivers to seasoned veterans and professionals.

I would say take “what you need” from any comment made in this forum.

Take what you need, write it out, make a plan that’s best for you and remember plans will always change, keep that in mind.
Wishing you the best outcome❤️‍🩹

Sorry to say, it sounds like she could be developing dementia. If this is true, there likely no way to convince her of it (don’t try) or to convince her that she’s not bathing or anything else. It’s a feature of dementia called anosognosia.

You may be in denial yourself about it. I know I was. I couldn’t imagine taking away my dad’s control over finances or his driving. It was the hardest things I had to do up to that point, but Dementia keeps getting worse. If anything, people who have been through it wish they had taken the difficult steps earlier in retrospect.

If she has dementia, you (or someone) will have to start intervening and it’s not going to be fun. If she is unsafe to drive, you want to stop her before she has a tragic accident. If she’s unsafe with money, you want to stop her before she gives it all to a scam or whatever. My dad had been a very careful saver all his life and then suddenly started day trading based on stock names he thought were funny and quickly lost $50,000 of his savings. We found out he was giving large amounts of cash to a woman he felt sorry for. The opposite of his behavior and personality before!

He also went from a perfect lifetime driving record (no speeding tickets, no fender benders) to totaling one car and also driving off two hours in the wrong direction with my nephew in the car. He didn’t stop bathing or changing his clothes until a couple of years later. But he thought he was doing both and couldn’t be convinced otherwise. I don’t think he knew how anymore, but he still thought he was doing it. When he peed himself and someone pointed it out he would say he guessed something spilled on his pants. He literally could not process what had happened.

Dementia expresses itself differently in different people but there are some common patterns and what you describe is definitely one of them.

good luck and best wishes!

Ugh. I understand. My aunt was and is still in serious denial about her dementia. She couldn't see her house was filthy. She couldn't smell what others smelled. She couldn't smell herself.
I had her house professionally cleaned inside out, top to bottom. She couldn't notice the difference. I went to visit the next week. She told me to take the bigger bedroom. I went inside and it reeked of urine. It was strong!. I told her I was happy to take one of the smaller bedrooms that she hadn't been in after it was cleaned. She had a fit. "What's wrong with the bigger bedroom that I offered you? It's not good enough?" I simply told her I was comfortable in the smaller one.
We all have tried to have the talk with my aunt, only to be met with screaming, tears and tantrums. I tried to have a doctor get her diagnosed. She refused to go to the neurologist. She was just satisfied with family propping her false independence. I even called EMS. They told me she looks fine, (she doesn't) and as far as they're concerned she is fine and cannot make her go anywhere if she refuses.
I had enough of my pressure being raised and spoiling and pampering. I flat out told her that unless she is willing to get help or go into memory care, I will no longer be visiting her. She said, fine. You don't have to come back, and I didn't. I have stepped away from the crap show and I let my cousin who lives closer to aunt deal with it. Good luck to you. It's not going to be easy.

Your mom has Dementia. If she's open minded, please take her to a Neurologist anget a diagnosis. I saw this happen with my parents. Please don't be in denial. Your mom is declining cognitively. She needs a caretaker. I am sorry you are losing your mom. We all go through this sad journey. You may need to place your mom in a personal care home. Look into your local resources such as the department of aging. These decisions are not easy.

Once our lives shift into 'parenting our parent' it's a challenge; we want to 'respect our elders' while seeing they need care now. Your main task as a caregiver is to ensure your mother's safety and health/hygiene. And tho you've dealt with her way of life up to now it's deteriorating. So you can't handle it all or expect your husband and any others in the home to adapt to your mother. Speak with a geriatrician or aging specialist for advice; depending on yours and her finances there may need to be a discussion of where best for mom to live to live her own way while safe and clean. All the best to all of you; it's a big life change but it can be done; plan now before further complications arise, as they will.

LimboMomma: Luckily, as did I, you noticed that your mother required help since they're rarely willing to state it. It required me to move in with her many states away.

While I realize this is a very difficult situation for you and that you do not know how to handle it, do realize that by doing nothing and allowing her to live as she is is a major disservice to her. I am grateful that you have come here to ask us.

You need to take action now.

[I wrote this last and moved to the top of this list.]
SEE A THERAPIST -
* You are grieving the loss of the mom you knew. She is changing / has changed; isn't the same person.
* Understand how difficult this is for you so be gentle with yourself - although do get the professional support you need.
* Allow your husband to support you through this process (ask him to read this). You need him to help you through these transitions. Allow him in.

If I were you:

1) I would hire a social worker and/or an elder care advocate - someone / a professional that specializes in elder care and is skilled in managing care for individuals in varying levels of dementia / losing their cognitive abilities.
There are independent medical social workers.

2) As her MD for referrals.

3) Call your local county City Hall / Senior Services Dept

4) Call Adult Protective Services - ask for a referral.

5) a) Google, read and call TEEPA SNOW. She is one of the country's leading experts on dementia and how to interact / communicate with people inflicted with dementia. Watch her webinars, buy her books.
b) Google 'how to talk to a person with mild dementia about cleaning (about bathing ...) and see what comes up. Look at You Tubes, too.

Then, you can approach her by:

1) Offering to help her 'clean up' in an assertive way. Do not 'ask her' - go to her apt and start to do something ('fun" ... let's have some fun ! ... perhaps start to put things away, get her laundry together) and in a very cheerful voice (tone of voice is REALLY important as are facial expressions), show enthusiasm to help her 'do the laundry'.
- If she is receptive / understands
* tell her that things on the floor are a possible fall risk ...
* Bathing will prevent painful (?) bed sores ... dry skin ... (whatever words work - although perhaps none will).
* I want you to be safe as I love you (positive reinforcement)

Do realize that some people w dementia fear water due to being frightened ... they may think they are going to drown ...

Do: learn how the dementia inflicted brain works 'thinks' so you can better understand/ relate / communicate.

- Expect that (as) this is new behavior on your part, and you are in her space, that she may be surprised, resist, and / or be-express confusion by your sudden desire to help / and taking this lead action.

- Consider (now) to hire a caregiver. Write down your interviewing questions. Hire through agency or independent caregiver.

Be clear on:

1) caregiver's experience and how they will communicate with her so it feels compassionate, caring, and is clear. You want someone who can take the lead in a patient, kind way.
2) Introduce this person as a 'friend' of yours.
3) Ease her into assisting your mom.

Approaching your mom_______________
Be cognizant on how you approach all these areas you mention:
- with sensitivity, patience, and pro-active behaviors.
- In other words, do not say "you aren't xxx" - "you need to ..." as this will only cause her to feel defensive and resist you/r support.

* Create a 'we are' doing ... 'we are a team' ... "I am on Team xxx (her name) so she doesn't feel alone and/or criticized.
- Remember ... she NO LONGER CAN do these things on her own. It isn't her fault. She is or will be confused, frustrated and if aware, embarrassed that she cannot function as she used to.

Expect she may resist you and look at you as 'the bad guy.' Realize this is the dementia talking, not her - as she used to be.

Take breaks as you need to. If she / you are frustrated, leave or change the subject and then come back to it ... or talk to her as you usually do and keep picking things up from the floor, take sh

Hi
yes its a hard one. When to step in
I would organise a. CAre visitor for her
Maybe then you could fall back on what a specialist says rather than you

you aren’t looking after yourself properly and it needs addrsssing

elderly parents tend to be InStubborn denial or I dont care
only you know your mothers personality
could
a mum I’ve noticed you’ve been neglecting cleaning a bit and I dont want you to be embarrassed when you go out - and people talk behind your back so Ivve arranged a cleaning rota
everu morning we will get a bowl with water ( and maybe a little disinfectant I n it ) and we have a daily wipe down
If she disagrees you point out you have noticed her smelling and she’s always been held in such esteem you dont want people saying she smells
so let’s get a system and have a daily wipe down -help her!

( turn your back/tell her you will when she wipes private bits - give her some dignity)
see how it goes
if it fails get health people in to help
if she disagrees then tell her options are she helps or doctor will say she’s not looking after herself and she goes into care

Time for a serious chat with Mom for the new year. You made marriage vows with your husband, not her. Not fair to him at all.

She needs to move into Senior apts. or Asst. Living, so help her find a place. If she is "independent" she can get one. She needs to know two is company, three's a crowd. Two years in your home is enough. Does she expect you to let her stay forever? Does she pay you rent? Let her know she needs to find her own place. Stop wasting her money and get one.

I always ask people who dread this change...did your Mom take in her own Mother when she was younger and married? I doubt it.

GOOD LUCK!

When someone's decision making becomes questionable I think we must try to step in to help. It's a strange thing to do that with a parent, as they were once the ones we looked to for support. Since your mom is living in your house I think you have every right to begin the the conversations about her needing more help with her everyday life. Nearly everyone does at some point, and especially as we age. Take some time to put together the right words and have a discussion with her. Get her to agree to see a doctor and talk to the doctor or nurse beforehand yourself to make sure they address your concerns in her exam. From what you describe the necessary intervention you are waiting for is here. She might be avoiding bathing because of fear of falling in the tub or just does not remember to do it, but it's important to get the reasons figured out. And she most likely does not even recognize that her room is getting filthy, so that sort of thing is going to be really difficult to convince her of. I think a caregiver coming in to help her with just those two things a few times a week would be a start, and maybe to also drive her for her outings. But you do have to take over her finances too, so you'll have to find the right words to get her to the bank and lawyer. Good luck. This is all really difficult. I always used "your doctor said". One day she called her doctor and asked him if he said that. Luckily he was on to her and said yes.

When I noticed my daddy forgetting things and giving his money away - I started going to the doctor with him, I had him add me to his checking, savings and credit card accounts. I then started paying his bills online - stopping the mailing of the bills. I then had him taken off the car insurance - he knew that he could not drive without insurance - no matter how bad his ALZ got he knew that. Oh I was the worst daughter in the world for doing that but I told him I would have it change tomorrow and he always forgot until he wanted to drive again and I just told him I would change it tomorrow - Tomorrow never came - sorry.
I also started - just one thing at a time - cleaning up, adding his wash to mine, dusting here and there.

This is so hard. My Mom refused to have a neuro workup because "what's the point if they can't do anything?" That said, I handle all her finances, such as they are, and accompany her to all medical appointments, which she accepts in part because it's physically difficult but also because she's so easily overwhelmed. If she's in early stages, it will be hard to "trick" her into anything -- like telling her company is company is coming to get her to bathe. I had to have a really difficult conversation with my mother about her need to bathe because of body odor -- literally, "Mom, I have to tell you something, it's gonna be really hard to hear and it's hard for me to say...." Bathing is such a tricky subject, from the humiliation of having to let someone help you, to the knowledge that you are losing your senses along with your memory. If her room smells, maybe you can tell her you're doing a bunch of laundry and "offer" to do hers with it. Since my mother can't smell anything, she tends to hang and wear things she thinks are "clean," and tells her aide -- whom comes 12 hours a week -- that they don't need to be washed. So, the aide just took the opportunity to wash literally everything when I was with my Mom at a medical appointment without telling her.

I also agree about the PoA, I'm working on that one now.

This is creative problem solving at its most painful, is a moving target, and is a little different for everyone. There are online support groups too...

Hang in there!

My Mom is 95 and was still driving (I live next door to her). I kept a close eye on her driving skills and could see that this year (or sooner) she'd need to be transitioned out of driving (and dreading it because she was paranoid about it and was ready to give me a fight).

Then I scheduled her annual wellness check (free through Medicare). I sent a note to her doc through her portal to request a cognitive exam because of the concerns I was having with her memory and behaviors). I needed a formal diagnosis on the clinic letterhead signed by her doctor in order to start managing a few of her financial assets.

I went into the appointment with her and sat behind her so if she wasn't honest in answering the doc's questions I'd be moving my head yes or no. Then my Mom bragged to her doctor that she was still driving. Her wise doctor (also a senior woman) the ordered a virtual driving assessment through our OT dept. Long story short I convinced my Mom to go to "prove" she was still a good driver to everyone. But she failed with flying colors. The OT tech had to break the news to my Mom telling her she was a "high risk" driver, then her doc had to report the results to the and the Dept of Public Safety, who sent out a letter cancelling her license.

That's the driving piece.

I'm hoping you are her PoA. If not, please find a way to get her to assign you BEFORE she gets a diagnosis of impairment. If she's reluctant, you can make an appointment with a certified elder law attorney (for your Mom) but tell her it's for you to assign a PoA. Then when you're at the appointment with her, make sure you ask the attorney what happens when someone becomes legally and medically incapacitated and has no PoA (spoiler alert: they most likely will become the ward of a 3rd party court-appointed legal guardian... a total stranger). Then see if she's still unwilling to assign you as PoA.

You will now have to be preemptive and creative so that you don't start having daily battles with your Mom as she gradually is robbed of her ability to use reason, logic, and judgment, and have empathy for others, loses her short-term memory, etc. You are now the only person who can change and adjust.

No one is "somewhat" independent. This just means the person is dependent. We used to tell my Aunt with dementia that company was coming, and then she's willingly take a shower. And you will also need to discuss meds for depression with your Mom's primary doc. My Mom benefited a lot from the minimum dose of Lexapro.

Taking away someone's independence doesn't have to be something that happens in a day. It can be (and should be) gradual. The caregiving arrangement must accommodate the caregiver, not the receiver. My agreement with my Mom is that she transitions into facility care either when she is no longer safe in her home or I am overwhelmed by her care. Even if she never remembers this "contract" at least I have it clear in my own mind.

I wish you all the best as you work to help your Mom.

On top of medical care, take her to see an elder care attorney who can show her how to keep her finances safe and give you a POA to take that all off her shoulders. Find resources for her to use for transport, house cleaning, aide for bathing, etc. Things will only get worse so you need to be prepared as does she. Take her to visit Assisted living facilities and get on the list, if she can pay for it. Take her to visit often so she will feel familiar before she moves in. The more she needs help, you will find the more her brain does not understand. You have to do what is best for ALL OF YOU….not just her. You have to do things to keep her safe and to maintain your own health and sanity. If you fall ill, you are of no help to her.

Echoing what others have said - if you have an academic medical center near you, see if they have a memory care clinic where your mom can get an assessment. That helped me so much when I moved home almost two years ago to help my dad. Check out resources through Teepa Snow. I took several online classes and it was so helpful to hear other's stories. It made me feel less alone and gave me ideas for how to proceed. As part of the classes, you get free consults with their experts. And follow-up sessions after the class are only $25.

You already have good advice given below.

I just want to clarify that YOU will not be taking away Mom’s “ independence” .
Her age related decline will be doing that .
If your Mom ever claims , as my father in law did constantly , that his “ independence was being taken away “…..

You answer with, “ I’m sorry Mom , your age is taking away your independence , not me . I did not make you old , and I can not fix old “.

So let me get this straight. You're concerned about her judgment, she smells because she doesn't bathe or wash up, and her room is piled up with hoarded clutter.

Yet, she's still allowed to drive a car and have full access to her finances.

Think about that for a second.

Get her to her doctor, but before the appointment speak to him privately and explain what's going on now. He can get her license revoked and help you get set up with services like homecare, social work, and even placement in AL if it comes to that.

Also to add to what others have said, go on line , learn everything you can about dementia, and types of dementia. Then see if there are any signs of dementia that you may have missed.

I would start with Teepa Snow. On YouTube.

The fact that she's "rarely bathing" and her room is "starting to smell and is piled with clutter" can all be signs not only of depression but dementia as well.
Plus a lack of judgement often goes hand in hand with dementia too.
Time to make an appointment with moms doctor to have her evaluated, and put on an anti-depressant.
And I would either notify her doctor ahead of time via the patient portal to let them know exactly what is going on with her, or at the very least hand a note to his nurse prior to going back to exam room for your mom to be seen with your concerns.
Your mom is obviously starting to decline, and it's best now to discuss with your husband what exactly that may mean for the future of your moms care, and perhaps even looking into other living options for her such as moving into an assisted living facility with a memory care unit attached for if and when she may need it if she gets diagnosed with dementia.
And please don't forget that your husband and marriage MUST come before your mom.

I can only suggest that you consider now a full work up and have a discussion with an OT person that the neuro-psyc person can refer you to. Mom is losing the ability to do executive functions. I think you realize this is dangerous. She is also losing the ability to do self caring. If she cannot accept care guidance and you are not willing to move a way from her being an independent (which she can no longer manage) then the best option really may be to consider placing your mom in care OR getting in a caregiver say three times a week to manage cleaning up both mom and her living space. For a WHILE you will be able to explain this away with she is there to help YOU, with it having nothing to do with mom.

I think the problem with you and hubby is going deeper here and needs a deeper discussion between the two of you. About the changes you are both seeing. About their dangers. About what you can/cannot do are willing/unwilling to do, about how long it can go on, about next steps when it cannot go on, about your own rights to a good time in your own retirement years, and etc. Just all of it.

I am so sorry. It does come to this. You know, I am sure, and have stood witness to the trajectory. I wish you the best.