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Hello! New here. My 75 yr. old mother who has extreme mental illness has been residing with us for the past 6 months (medication is only doing so much). She is a kind person but I cannot handle the psychosis, constant delusions, unrealistic thoughts and disrespect towards my husband (who she used to adore).


She believes she is still married and chats with him ALL day. At night she won't go to bed because she thinks  he is coming over so she gets out of pj's and into regular clothes. This is a battle between us. She says I'm controlling, but I'm structured and give her a routine. I don't care to be her parent anymore! Lately, I say if she is not happy here we can find an assisted living place where she can live and do what she pleases without my "rules." Unfortunately, she will likely go into a deep depression if this happens. She strongly believes my house is actually hers and her "husbands" and firmly says she's not leaving. Has anyone dealt with reluctance or defiance when moving their loved one into a facility (not sure if that's what I'll end up doing, but it might happen). How do you known when it's time?

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When it becomes more than you can handle then it is time. Don't give up you for her.

My mother is in AL, best thing my brother and I could have done, she fought us for years, now that she is there, she loves it. Activities, new friends and she doesn't have to lift a finger!

There are meds for depression, she will adjust, you will go through the same stuff we caretakers have had to listen to "I want to go home", "The food here is terrible, I can't eat it", "I am not as bad as the rest of them". I think they are handed a sheet of complaints to use when they are admitted.

You really do not know how she will react, you are guessing and assuming. Let it flow, do what is right for you and her both, don't let her manipulate you, be firm and move forward.
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dcjcmo Jun 2022
Thank you for the reply. I think my mom would go into a deep depression if I put her in AL (total introvert). I'll hold out having her live with us for as long as possible, but yes, one day the decision will have to be made for what is right for both of us.
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Hello! Welcome to the forum! Many have been in your shoes...

To answer your question: it is time when you no longer wish to continue being the host/caregiver. You don't need any other reason. The caregiving arrangement needs to work for both you and your mom, and it no longer is, so it is time. You need to deal with it before you reach burnout. Also, she will get more enriching socialization in AL.

The second piece of this decision is: can she afford it? If you are her financial PoA and/or guardian/conservator then you will need to help her research affordable places. Look for ones that accept Medicaid and have a continuum of care (AL, MC, LTC, hospice). This way she never has to experience the stress of change, which becomes harder for elders to manage as they age. Do not even entertain the thought of paying for it. This is unsustainable. You should consult with a Medicaid Planner even if you think she'll never need it -- many many people do -- and you it's easy to inadvertently disqualify or delay someone due to how their finances are managed. Most states' Medicaid app has a 5-year lookback period on the financial part. So, it requires some forethought and planning.

The third piece is: are you actively her PoA or legal guardian? This is important because if this authority isn't active, and she refuses to go, you will have a much harder time extricating her from your home. The you will need to go through a legal eviction process. Also, even if she agrees to go into AL willingly, if she isn't yet "incapacitated" then she gets to make her own choices and can choose to leave the facility, and the facility will need to allow her to leave.

Once you figure out the strategy to transition her, I would not talk to her about it too much since she goes into a pouty funk. It gives her time to build up resistance.

You don't need to give her any reason for the change except, "We wish to have our privacy back." This way she can't negotiate or ague because she can't make a case that she's not invading your privacy. Come back and let us know how it goes because you'll likely need a little more support and advice during the process, or if it doesn't go well. I wish you success in helping her to transition!
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dcjcmo Jun 2022
Thank you for the reply! Yes, I am POA for my mom's finances/health and we are working with a Medicaid Specialist. Good point - don't talk about it until I know the strategy/transition is in place. I guess I always want to forewarn to prepare her but it probably is giving her time to build up resistance (and make her feel that I'm pushing her out, which I don't want her to feel that way). I'll check back on here when/if the time comes! :)
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Behavior that worsens in the afternoon into the night, especially not wanting to bathe, is normally known as Sundowning and comes along with dementia. Your mother's delusions of believing she's married and carrying on conversations with a husband that does not exist, getting dressed to meet him, etc, are also symptoms of dementia which may be going on in ADDITION to her SAD diagnosis. This may be the reason why her meds are only doing 'so much' to control her behaviors, and she's suddenly having unrealistic thoughts and disrespect towards your husband who she once adored.

I suggest you get mom back to the doctor for full COGNTIVE testing to determine if dementia/ALZ is also at play here. If so, Memory Care Assisted Living would be the best placement for her. And, if she's deemed incompetent, you can place her against her wishes, as her POA. She may in fact LIKE it in Memory Care and shatter your illusions that she'll go into a deep depression once placed. You just don't know HOW an elder is going to react to a new environment where you are no longer in control of her life. These women always seem to react so much WORSE to US than they do to others who are caring for them. Their behavior miraculously sweetens up when they're in the company of other caregivers and elders who they can put on a show for. I know b/c I had a mother with mental illness and dementia as well. She treated me horribly but was the Belle of the Ball at her Memory Care ALF. True story.

You know 'it's time' to move her when you've had enough and are at the end of your rope. And when your mother is so unhappy and at the end of HERS. It's time.

Get her properly evaluated and diagnosed for ALL of her issues before you try placing her, though. That's the right move to make, so you know where she'd fare best.

Wishing you all the best of luck moving forward.
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dcjcmo Jun 2022
Thank you for the detailed response. I thought the same thing recently - get a full cognitive evaluation done. It will be hard to get her out for an appt. since she no longer wants to leave the house, not even for a walk or quick trip to the store with me (in fear my husband will throw her clothes out or the cops will come for some odd reason). Thank you again!
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I have a few questions..
Has your mom been diagnosed with a particular mental illness?
Has your mom been diagnosed with any form of dementia?
Who is POA for health and finances?

One of the first things if you are not POA is to get all that paperwork done so you can take the steps you need to when you need to. (did that make sense?)
Is her mental illness under control? You say medication is only doing so much. Can adjustments be made? either a change of medication or dose?
Has she been diagnosed with any form of dementia? If so are you aware of the possible "characteristics" of the type of dementia she has? Some present with more paranoia than others, some with more violent tendencies, some hallucinations. It is important to know what you are dealing with. And is is possible that the Mental Illness is "just" dementia and she was "misdiagnosed" previously? (I know long shot there)

I have said in many of my responses that my decision to keep my Husband home was based mostly on 1 thing. SAFETY.
If it was not safe for HIM for me to care for him at home I would have had to place him.
If it was not safe for ME to care for him at home I would have had to place him.
SAFETY is not just physical safety but also mental/emotional safety.
If you are getting to the point where you can not handle things for whatever reason it is time to place mom in a facility that will accommodate her particular needs.
Placing her is not giving up it is admitting that she needs more care than you can SAFELY give her in your home.
(I was told early on in my journey with my Husband when I asked someone "how will I know when it is time..." and her response was ..If you are asking the question then you know it is time.)
And if there is a diagnosis of dementia I would opt for Memory Care not Assisted Living.

The important thing is you need to get the correct diagnosis and medications that will be appropriate for her.
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dcjcmo Jun 2022
Thank you for the reply! My mom has been diagnosed with depression, anxiety and schizophrenic affective disorder. Medication is getting stabilized after months but as we increase the dose, she gets worse. So it's as good as it's going to get for now. I was told she'll never be totally cured. She can be very mild in her demeanor, it just intensifies when I give direction on what's being done next (i.e. bathing). Dementia is not a diagnosis. She's of sound mind for the most part, except when the delusions take over which starts in the afternoon into the night. Guess living alone for 10 yrs didn't help and she's an introvert so created these made up people. I am POA for her health/finances. You are correct, safety is the key word here that will automatically determine what I do. thanks!
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I would say it is "time" when it isn't working for you, and it isn't. I am sorry to hear that you took your Mom into your own home. It will be difficult to deal with at this point, as she is, once she gets mail at an address, a resident tenant at that address whether she pays rent or not.
I suggest reading Liz Scheier's excellent memoir Never Simple. Ms. S. spent many decades trying to protect her Mother from her Mother's own mental disability; she had the help of the entire state of New York to do it and nothing worked ultimately; her mother died broke, homeless and on the streets.
As to hoping to create any "understanding", "agreements" or "enlightenment " in a mind mentally ill, that is most certainly an exercise in futility.
I am so sorry you are dealing with this. I have a member of extended family with mental illness and it is a crucible for family to live through, and there is a constant window on such suffering. It is not well understood and less well addressed in our country.
I suggest, if you are not already POA, that you don't take this on. It is an onerous task when dealing with a bright, agreeable and well organized person, but for someone ill and uncooperative it is unmanageable.
I wish you the very best. At 75 your Mom has two more decades of life. How old will that make YOU?
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dcjcmo Jun 2022
Thank you for the reply and suggestions. Yes, I am POA for my mom. Oh my, I can't imagine another two decades! lol
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Based on some of your replies below it sounds like you have to choose between sacrificing yourself further for your mom or placing her in a facility. I dont think assisted living would be good for her. There is no cure for her mental illness and medications do not seem to be working for her. But to give up more of your life so mom doesn't slide further into depression is not healthy for you either. Your choice is between self preservation or preserving mom as she slides further down the rabbit hole of insanity.
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dcjcmo Jun 2022
Thanks for your reply. Guess I could just do what's needed for now since it's manageable but frustrating at times despite her kind nature most of the time. Had trauma in her life that has definitely surfaced more so as she got older. I guess I'll know what decision is right when the time comes.
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I doubt very much she will agree to move. The problem you have now is if this is mental illness and not dementia you have no right to move her. You brought her into your home. The day she got mail there she was a tenant whether she pays or not. There is a long hard way to go to get her moved out. I think you will need to consult an attorney for your options.
Do know it is not considered against the law to be mentally ill in our country and guardianship is not granted except in the most profound cases.
So sorry, but by taking her into your home you have painted yourself in a bit of a corner I am afraid. Get professional legal help.
I suggest Liz Scheier's book Never Simple, about her trying for decades to deal with her Mom's mental illness. It is an excellent memoir.
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dcjcmo Jun 2022
Thanks for the reply, I would rather it work out her living with us because she has always been a wonderful mother and grandmother. Unfortunately, her irrational delusions really get to me and I lack patience. Trying to think ahead should she get worse and if it becomes unmanageable. Good suggestion on the book...I'll give it a try!
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Quite a few positives leap out to me;
* Mom is 75 (as under 65 may exclude some Aged Care/MC options)
* You have POA.
* Mom has a supportive family. You are already her best advocate - she is very lucky with that.

With either mental illness or dementia sometimes family/POA has to do what the person 'needs', despite their 'wants'. Hard but necessary at the time. This is where support for you is so important.

I am wondering if the schizophrenic affective disorder dx is fairly new, or long-standing?

I am not a Doctor or Neuro specialist.. I don't know how each type of psychosis is differentiated from another. I have read some types of dementias, Lewy Bodies & Fronto-Lobe have different symptoms inc more hallucinations than Alzheimers Disease (in the early stages).

Regardless of the 'label' what you need is medication & care so your Mother can be less fearful, is safe & has some good days - plus your health is not destroyed.

Maybe more tinkering with medications & diagnosis is in order? Maybe even an in-patient stay for investigation?

Hopefully then suitable choices for treatment & future care/living can be made.

Let us know how you get on.
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dcjcmo Jun 2022
Thank you for the reply, all good points. Yes, that's where we are at...medication changes, small changes because she doesn't adapt well. Maybe a neuro diagnosis is necessary. She did stay in the hospital for 2 months back in October for evaluation and many medication changes. She came out delirious, very weak (laid in bed all day), extreme confusion, etc. That stay was too long. We have made much strides since though, so it's not all terrible at least. Thank you!
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She's not a candidate for assisted living.
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