New diagnosis and resistance to doctor's advice. What do I say to my mom?

did the doctor tell her that she couldn't go home or just you?  You might want to tell her that this is what the doctor said = you can go home once things settle down a little bit, so be comfortable where you are and when we visit again we will discuss it then"  maybe that will work for now.  do you work out of the home while she is there all day OR do you work "in" the home?    You might also want to tell her that when you checked her house (to pick up a few things), that you noticed some things that needed fixed and that you are going to get that done before she can go back there.  A little lie won't hurt especially to avoid any confrontations.  Make sure the siblings all know what the doctor said, etc.  Wishing you luck.  its tough but most of us have been through it.

I went through that with my Mom and Dad. Both insisted that they were perfectly fine despite obvious symptoms. Unfortunately the myth of spending your final days in your own home and passing there is indeed a romantic myth. Its true that some may be able to afford the 24 hour care that they need, but it's not always a good thing to turn over the compete care of an elder to a stranger, but most patients cannot afford this.

My Mom for instance, wanted to back to L.A., and had even arranged someone to pick her up at the airport. I had to go so far as to pull up the airline schedule and give her the alternative flights. Essentially I had to call her bluff. I did this many times, but she never followed through.

It may be that you have to let one of your siblings take her back, and let her deal with it herself. Do not offer to go and take care of her there. Let he handle things herself. Eventually something will happen that she will figure it out herself.

In the end she will come to realize that even though she is in her home, it's difficult to function. She'll come around... just give her time.

Sorry, I realise that my initial post must have sounded very blunt to you.

To expand on the ethics of the thing - and given that you heard this only yesterday, and that you just as much as your mother need time to adjust to her changing circumstances - here are the requirements that support an application for a deprivation of liberty under the Mental Capacity Act 2005 [note: this is UK legislation, but virtually all developed jurisdictions work along the same lines] -

Any intervention must be:

timely
reasonable
justified
proportionate
and ethical

The intervention you want to carry out is the involuntary removal of your mother from her home. A deprivation of liberty is any intervention which affects a person's ability to act freely on his own initiative: putting a seatbelt on a wheelchair which the occupant can't undo himself is a deprivation of liberty. Locking a fridge is a deprivation of liberty. So taking your mother permanently out of her house... is a biggie.

Does this have to happen now?
Is it the most rational way of dealing with the risks?
Is it justified by the level of risk?
Is it a proportionate response to the risks?
Is it ethical? (yes it is, you're not proposing any alternative that isn't in keeping with respect for her human rights. Drugging her so that she forgets that she wants to go home would be an extreme example of unethical!)

Based only on what you've told us so far (for all I know, she might have been putting unopened cans in the microwave or getting lost naked in her back yard at three in the morning), it's the timely and the proportionate elements that need work.

Your mother's cognitive abilities are as yet good enough at least for her to know very well where she is and where she wants to be. She is also able to plan how to act on her wishes. These make it sound as if you have time in hand for more gradual adjustments.

Those adjustments then need to be proportionate: so you look at the risks and address those specifically. Is she wandering? - consider door alarms or entry codes, for example. Is she leaving saucepans on a lit gas cooker? - consider safety devices such as heat detectors, or other measures such as disconnecting the gas and providing alternative means of meal preparation. Is she forgetting to eat, or to wash and change her clothes? - visiting services or AI-enabled systems could help with that.

You've only just been told this, and it is very, very early on in the discussions that need to be had. Don't panic! And for now, today, reassure your mother that ways will be found to help her and keep her safe that also respect her wishes - ask her just to give you time.

Her very caring sympathetic wonderful geriatric doctor has dumped you neck deep in the sh*t, hasn't he?

What a pity that he failed to explain to your mother what the implications of her test results were. What a pity that he did not also hand you the necessary documentation that would support your application for guardianship of your mother.

So. Where is her home, who is nearby, and what activities of daily living does she *now* (i.e. not in the future) need support with? Because you'd best get busy setting it up.

As things stand, absent any declaration of your mother's incompetence, guardianship or enforceable Power of Attorney, you have no legal right whatsoever to obstruct your mother's return home. I agree that you do not have to participate in it, but you cannot prevent it.

If you force your mother to remain living with you at the moment, you will destroy her trust in you and wreck your relationship. Looking at her capabilities at the moment, what are the risks of her living alone that most concern you?

If I had left my home temporarily, and then got told I couldn’t go back, I would be deeply upset. Surely you can take her there for a night or two, so that she can at least see her home to say goodbye to it? Can you make the purpose of the visit to go through things that she may want to give away, as the chances are not everything could fit into your house? Get her to tell you the story of special things – perhaps make a recording if you have the gear. Perhaps make a bit of a mess, with cartons for things so that it looks like ‘packing up’ not like ‘home’?

Imho, under no circumstances should you take her back home. Come up with the proverbial white lie. Prayers sent.

She's entered the phase where white lies will make life easier than the blunt truth. Tell her the house is being tented for termites and she needs to be out of it for a month. The water has to be turned off to fix the plumbing. Use COVID-19 as an excuse as often as needed.

Any of these excuses may calm her down a bit, because it isn't about YOU telling her she can't go home --it's CIRCUMSTANCES keeping her from going back. Sometimes it works better when there isn't someone to blame.

If the MRI results are part of the diagnosis of dementia, that means the MRI scans are showing evidence of cerebral microvascular disease, which leads to dementia. An MRI scan cannot diagnose Alzheimer's disease. So your mother probably has vascular dementia, which can have a much slower progression than Alzheimer's. It's possible some Alzheimer's processes will start in her body, and then it will be called "mixed dementia." She may hover at this level of abilities for much longer than someone with Alzheimer's. This gives you time to get much more involved in ALL aspects of her life, BEFORE a crisis. You may find it much easier to prepare than you think, because in spite of whatever she tells you, she is unable to quite keep track of what's happening and remember it from day to day. One way to prepare--find out every detail of her health coverage, medical care, medical history, specialists, life insurance, home insurance, car insurance, long-term care insurance, bank accounts, annuities, mutual funds, 401k, will, trust, etc, etc. Because eventually you and your siblings will be in charge of all of it. For example, I discovered that my mother's house was owned in a trust that she no longer had a copy of because she didn't like the trust after all, but she was afraid to call the attorney who drew up the trust because she wasn't sure if she paid and the attorney might get mad at her. So use this as a window of opportunity to gather info and be much more involved, whether she wants it or not. She obviously still enjoys spending time with you. If you confront her with too much raw reality, she'll be more likely to resist. Instead, you're going to humor her and focus on her strengths, while you know the reality. You'll be on her side when she talks about that crazy doctor. You'll tell her how relieved you are that she can still shop and cook.

Are there any family members who would live with her at her house? Or even someone familiar to the family who might consider room and board to live in the house in exchange for housework and cooking the meals/picking up the groceries? At this point in her disease, she may not need hands on care, just a body in the house to help her with things. This might work out until she actually needs more hands-on and then her care could be renegotiated - either pay the person or move her to your house.

If being at your house is the only way to stay out of a facility, then it explain that to her while she still has some understanding. Tell her you could get in legal trouble if you just let her return home and something happened to her. Perhaps some of the relatives could pick her up and allow her to spend a couple of nights at her own house just so she can see it and be in it a little.

Make sure all relatives understand that she cannot live alone so one of them doesn't go get her. Also tell her if she leaves your home, by calling cab or some such, that you would have no choice but to put her in a facility because of the doctors warning (can't live alone). Hope you make some headway with her. It has to be very hard to have to leave your own home - I can totally understand why she wants to go home.

Is it possible to “elder-proof” her home and have a daily helper to check in and provide meds? We tried this with my step-mom, it wasn’t a permanent fix but it bought her some “independent” time.

We had her gas stove turned off so she could only use the microwave or electric tea kettle (with auto-shutoff). A caregiver came by for a couple of hours every day to make sure she took her meds, which were in a locked box otherwise, and tidy up a bit. Once a week they would do laundry and assist with a shower. We replaced her glass dishware with plastic, etc. We did try to get her to wear a Med-alert device but she would forget to put it on. I was about to consider an in-home camera (I live far away) when she declined to the point where she needed assisted living.

I was in your shoes five years ago. My mother was diagnosed with Alzheimer’s. She had a wonderful Geriatrician who told me she was intelligent enough to have been hiding it for quite some time. Even at the end she could carry on conversations. The reality is you can’t reason with her, her cognitive abilities are impaired and it didn’t matter how many professionals my mother heard it from, she wasn’t going to be convinced she couldn’t manage on her own. Guardianship is the only way you can force her to leave her home. For me that wasn’t an option as that would have destroyed any trust my Mom had in me. So basically we settled for her being a “fall waiting to happen”. Which eventually it did and then she had no choice but to leave her home of 50+ years since her it was not equipped to handle her mobility limitations. I feel for you, it really stinks. My mother passed away this fall, two years after breaking her hip and her femur. She wasn’t always happy not ever going back home, but we made the best of it with weekly outings and lot’s of visits. She was safe, well cared for and it allowed me to focus on just spending time with her instead of taking care of her. Know there is no one “right” way to do this. Your situation is unique to your family. Rely on the professionals to help guide you, but once you decide a course of action don’t second guess yourself. That only adds more torture to an already difficult situation.

You sound like you have a wonderful dispostion in the care of your mom. It gets harder to care for her as the time goes on, but with this covid situation if you can hang in there I would. My mother lived on her own for a while with her dementia, but it got to the point that she would fall or leave the stove on or hire people to work on her house, even though she didn't have the funds. We tried for a few years having different grandchildren stay with her, and then my brother and his family moved in for a year. By that time she was oblivious of her surroundings, and when she needed lifting out of bed and constant watch she went into a nursing home. Unfortunately, once covid hit we were not permitted to visit and I set up a facetime with her. Everything went fine until one day I noticed she must have had a stroke or something and they never called to let us know. After numerous runarounds on the phone, I just called hospice and as soon as they examined her we got the call to come in. Two days later she passed away, but the whole family was able to be with her around the clock. I personally would have brought her home if I knew we would be in lock down for so long, even if it meant a physical strain on myself to move her around, I have such guilt knowing something had happened to her and no one helped her until I saw her condition and started stirring the pot.

Not being able to use the phone to call for help seems a HUGE deciding factor.
Because your mom may understand this today may not mean that she understands this tomorrow. You may have to repeat this every day until she declines so much that she stops asking to leave your home. Just maybe be prepared to repeat and repeat your explanations.

The most important factor is that mom never be left alone. There are several ways to accomplish this: round the clock home health aides, family members taking turns caring for her in her home, mom moving permanently into a person's home with sitters or home health coming in a couple hours/days every week, placement into a long term care facility.

Please be aware that the care needed for a person with Alzheimer's type dementia will get increasing more complex. Eventually, she may need help with bathing, dressing, toileting, diaper changes, eating, transfers (getting from bed to chair to standing) as she "forgets" how to do these things. She may become non-verbal or not interact with others. She may have difficulty with discerning day and night and keep others in the home up at night. It is a progressive disease and you must be realistic that the housing situation will need to change as her disease progresses.

If it has been determined she needs 24/7 care then she can't be alone. I can see GAs point but that is all well and good if family lives by or someone can live with her. Or if she can afford round the clock aides. But this may not be workable in your case. My Moms house was 2 stories and she could not do stairs. TG her bathroom was downstairs and we converted her TV room into a bedroom. But I still worried about her going up those stairs. My nephew did live with her so big help right there.

My Mom, too, forgot how to use a remote and her cordless TV. My nephew found her crying because she couldn't remember how to answer the phone. She also left a pan on the stove. A hospital visit with rehab ended her living in her own home. She came to live with me. By that time she needed help dressing. She could no longer cook and needed help reminding her to brush her teeth.

I may ask her doctor if he could talk to her again. My Mom listened better to others than she did me. He needs to sit down in front of her and look her in the eye and say "You cannot go back to your home. You have a Dementia where you r no longer are able to be on your own 24/7. You will need to stay with your daughter so ur safe."

You do what you need to do for you. What is easy for you. Mom is now in a part of her life where its not what she wants but what she needs. To make this work, you can't be stressing yourself about what is happening at her house. Running over there for every little thing. You can care better for her in your own home.

Eventually, that may not be an option as her Dementia progresses. You may have to place her in an AL or NH because her care is more than you can do. My Moms decline was monthly from the time she lived with me in late 2014 until her death in Sept 2017. She was in Adult DC while living with me. Then went to an AL. An aide from the DC got a job at the AL a few months after Mom started living there. She could not believe how Mom had declined in that short period. What I am saying is how Mom is today may not be how she is a month or two from now. COVID is a good reason for her not to go back for now.

Your mother sounds still strong enough mentally to understand reasoning? You mention her cognitive reasoning still somewhat strong.
So you and any other family must sit with her and tell her once that the doctors have decided now that she is no longer safe to move into her own home. That if she insists on such a move, or threats of leaving for her home you will need to seek guardianship and have her placed in memory care for her own safety.
Tell her that you love having her, and that you are so sorry she is now diagnosed with this illness. That you will not EVER abandon her, but must now protect her. And that you will do so. Say all of this as gently as you can. Hopefully she can understand it; hopefully she will adjust. But the future will be as it will be ongoing, with all the challenge and change. And you will have to act in her behalf now to the best of your ability.
I assume you are already POA. Hopefully you will not have to seek guardianship, but you do have the full evaluations to do so. Congratulations on what you have already accomplished for your Mom; what a splendid job!

Complete neuro-psych testing takes 3-4 hours. That applies to children, adults and elders. This is the sort of testing that pinpoints exactly where the person's deficits are.

My mother scored well on MMSE's until about 6 months before her death. She had vascular dementia and her memory was still very sharp. However, she could't reason or solve the simplest problems, which what was leading to her constant anxiety and panic, which in turn was driving her BP sky high at times.

Had we not had the testing, everyone in the family would still be telling me that mom was fine and just having a pity party.

I have some strong feelings about these kinds of situations, and believe that it can be advisable for someone and his/her family to make adaptations to stay at home as long as possible, if that's what the elder wants.  

Taking away freedom, independence and self reliance can be the first step on  a road to decline of coping abilityand self esteem.

Why is her home not suitable, and how can you adapt it?    That's what we did when my sister had terminal cancer, and during my father's long decline.   I'm thinking now how to adapt my house, and on a more challenging basis, how to continue gardening.  The first step is to switch to raised beds to cut back on the bending.

You can take precautions such as making the home safer (eliminating throw rugs, getting a lifeline alert service, external lock for quick access by police or paramedics, and many more such precautions.)

I don't criticize anyone who will post and disagree with me; fortunately we're entitled to our own opinions.  

If I did live with someone, I would continue to be as functional as long as I could, or if I lived alone, I would take the same approach, modifying and streamlining my life to accommodate the challenges of age (which is one reason I've decided to restudy math over the winter, to keep my mind from deteriorating.)

I would also say that 4 hours of cognitive testing to me is excessive; the only exams I know of that are that long are bar exams, and I know from legal friends and workmates that that's very challenging, even for young 20 somethings just finishing law school.

If someone wanted to test my cognitive abilities for 4 hours, I would be quite blunt in telling him or her what to do with those tests.   Or I'd establish break times and expect to be treated to coffee, cider, OJ, and/or something to refresh me.    A nice salad would be welcome too.   But just testing for 4 hours - not gonna happen to this old lady.

And that's definitely not a criticism of you; it's of the doctor who performed it.

If your mother has not been found incompetent (in which case, you could sue in court for guardianship), you cannot force her to live somewhere she does not.

Have you asked her what it is about living with you that makes her want to go home (rather than asking, "why do you want to go home" ask "is there something that we could do to make it better here?").

I would encourage her to call her doctor if she insists that she wants to go home. The doctor can possibly be more authoritative than you can about "no, this is not possible".

In the end, you may need to let her go and fail. She WILL have an "emergency" and you will need to say "no mom, you said you wanted to be independent; if you have an emergency, call 911, not me". It sounds cruel, but sometimes the only way to get our elders into the care they need is for them to have a fall or serious illness that puts them in the hospital. At that point, you can ask for placement in a facility.

If she still has the reasoning skills to "get" that, explaining this scenario to her might get her to stop. But in dementia, reasoning is often the first thing out the window, so don't count on it.