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Twintraveler Asked October 2022

Sister lives with me and needs more care than I can give. Any advice?

Sister has suffered from delusions, hallucinations, & paranoia for many years. She now suffers from doctor-diagnosed medium to severe dementia where she should be supervised 24/7. I am 85 and have stomach issues, need a knee replacement, and am crippled from back issues that left me looking as if I have terrible osteoporosis. My sister suffered a fall in February 2022, breaking her right hip and wrist. Following hip surgery and having a splint put on her wrist and forearm, after 5 days in the hospital, she went to a rehab facility near the hospital, where she spent 3 weeks, the maximum allowed. There was no way she could return to her 2-story townhouse rental apartment with both bedrooms upstairs and no shower downstairs. I and one of my 2 adult sons flew to Texas to determine Millie’s prospects after rehab. Before she was discharged, the rehab facility, at my encouragement, secured the services of a psychologist/psychiatrist to perform a cognition test, as it was very apparent Millie suffers from dementia. Two of her younger longtime friends were very helpful with describing incidents supporting a potential dementia diagnosis. The diagnosis was moderate to severe dementia, advising 24/7 supervision in her living environment. Thus, my younger son and I brought her back to California with us, with every expectation she could be placed in a memory care facility. Many tears and frustrated attempts later, we have learned in the following 7 months we cannot force Millie into care, and I am at my wit’s end dealing with her daily needs 24/7. I cannot even go to the bathroom without her following me around. She abuses my beloved dog with people food and allows her to do things she has been trained not to do, Millie walks out the door to wander around, there’s no stopping her. I’ve had to drive in the neighborhood to find her & still she won’t be picked up, even in 100° temperatures. Millie will not let her mobile phone out of her sight, and makes all sorts of purchases on it. She lately has been taking my possessions, those she can sneak out from under my nose, and mails them to people. Fortunately, her car is in Texas, and her current PCP has said she should not drive again! Millie gets irate if I try to address issues. She gets lost when we go out to the market and is frantic until we “find” each other again. Besides the toll of having another adult in my formerly quiet, peaceful home, I am in charge of all her doctor’s appointments, too, and any social activities, where I feel she is a child I have to keep up with. California will not allow me to force her into a nursing home or care facility. But I cannot continue to have her live with me. I want and need my life back. My health is suffering and I cannot take care of my own pressing needs, visits with friends, going to lunch, Bible studies, etc as I did before. She has no legal POA, although I was able, through the hospital social worker, to get a signed medical POA. I haven’t had too much trouble with her medical appointments except at the beginning when we had to have her insurance transferred from Texas. Millie is not penniless but we do not have POA to use any of her money for her care. Is there any hope for me to get my life and home back before I die? Can the State force you to care for a person with severe mental deficiencies? I love my sister but I do not love this version of my sister and I want her to be cared for properly in a memory care facility which has staff to properly attend to her personal physical needs as well as nutrition. Help!!

freqflyer Oct 2022
Twintraveler, please note that 40% of family caregivers die leaving behind the love one they were caring. Now what? Those are not good odds. If something happens to you, your sons would have lost their mother.

Next time there is a medical emergency or Millie wanders out of the house and refuses to come home, call 911... when the hospital calls to say she is being discharge, tell them she cannot return to your home, let them know you are 85, you just cannot help her anymore.

I hope something can get worked out.
Twintraveler Oct 2022
Thank you. It does seem ridiculous to find myself in this position at my age. I love my sister and seemed to have no recourse at the time she was turned out of the rehab facility. She had NO place to go and social services in Texas were not responding to the critical need. We had no POA and still do not have POA to help her other than what we have done, providing her with MY home and care. I’m tired, exhausted and need respite. Thank you for your kind comments.
KNance72 Oct 2022
I think its time to call 911 when the next incident of wandering Happens and then Let the case manger and social worker Place her - just say " I am 85 and worn out and she needs 24/ 7 care That I Can Not give her . " Do Not take her home again . Stop with the co dependence - this woman is wreaking havoc on your life . Your Life matters - its time to let go of her . Let the professionals take over .

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mstrbill Oct 2022
The State can't force you to do anything, to answer that question first. I'm so sorry you have found yourself stuck in this situation, but the crucial decision point was taking her from rehab with you without any support. I wish others who may be thinking of taking someone with dementia home read your story to get an idea of what they may be getting into. You didn't have to take her home with you. at this point, as freqflyer said, you need to start calling 911 when she wanders. Get her into the hospital and do not take her home. Let the social workers at the hospital find placement for her.
Twintraveler Oct 2022
We had no choice but to bring her back with us. She couldn’t go home to an upstairs bedroom apartment with no bathing facilities on the first floor and no one to care for her even so. Social services were not helpful, and my sister is and has always been defiantly independent. We could never have just driven her to an extended care facility to be further evaluated. The State of Texas offered us no help. But then again, time was of the essence. We had to make decisions on the spot - decisions that she would balk at later - as she has wanted to go “home” ever since she was mobile. We have of course not helped her to do so and she is not capable of figuring out how to get to Texas on her own.
JoAnn29 Oct 2022
Call APS. Tell them that this was to be only temporary that at 85 you can no longer care for her with your health problems.

Where I live, Rehab cannot do an "unsafe discharge". Once she was diagnosed with Dementia, they definitely could not have released her. You could have said No to taking her. Your age and health problems were a good excuse. They would have needed to find her Longterm care. You could have let the State become her guardian. They would have taken over her finances and used them for her care in a Nursing Home. Social Workers will do anything to get family to take a LO so they don't have to do the paperwork and find a place for the person.

Be firm with APS that you can't continue caring for sister. You have no POA to place her and guardianship seems to be out if the question. Her Dementia will only worsen where she will need more physical care that you cannot do.
Twintraveler Oct 2022
There is more to the story that I did not know needed to be told until I read responses to my inquiry. There was a young woman who knew Millie as a neighbor from 9-12 years old, or earlier, I cannot determine the exact timeframe. Millie had taken her and her siblings under her wing, as she told me their mother was negligent. Years later, the young lady had married & lived closer to Millie, & had twin girls. Occasionally, the two families would meet up. Then, Millie moved back from her hometown, where she nursed her dad, to the metropolitan area she was formerly familiar with. She told me about seeing this young woman and her children occasionally. When Millie moved to an apartment after selling her home out from under herself with no place to live, after 6 months she ran into this family, the lady having remarried & moved coincidentally to the same small town. The lady began to help Millie in a variety of ways, as Millie already was manifesting signs of dementia.
When Millie fell & was hospitalized, I learned of this woman for the first time, as she went to the hospital to see her. It quickly became apparent, from others including the hospital’s social worker, that the lady had plans for my sister to sign a DPOA for her to manage her affairs and have her move in with her, her husband, two daughters & a part-time (non-custodial) daughter and 3 dogs in a 4 bedroom, 1800 SF home. Bedrooms, as described by the appraisal district, were 10x10 and there was 1 living area. Knowing my sister, Millie would never have agreed to allow someone to handle her bills, nor move into a space of 100 SF. She has always been very independent, and even as I have learned she really did need help, she would have been opposed to losing that independence. The lady showed up with the DPOA forms in hand with a notary as well, and fumed as the social worker turned her away. From that day on, the lady continued relentlessly to pursue DPOA even after Millie went into rehab. The facility was advised to be watchful of the lady when she visited, especially when the girls were with her, as all were on high alert as to her intentions. Finally, after the facility had a psychiatrist interview Millie and diagnose moderate to severe dementia the day before she was to be released (maximum days allowed), the lady showed up and continued to try to cajole Millie into moving in with her family. APS was called and I and my son, having arrived to try to make plans for her, were strongly advised to get her out of town. Thus, hasty airline reservations were made for 2 days following to rescue her from potential elder fraud. That’s how she wound up living with me and that was 7 agonizing, anxious months ago.
Countrymouse Oct 2022
How soon can you schedule that knee replacement surgery?
DrBenshir Oct 2022
Brilliant! When surgery is scheduled, move sister out "temporarily" and don't bring her back. Use a therapeutic lie: she is going to a nice hotel/spa/resort for seniors while you recover. And no, your sons cannot take her or move in to take care of her at that time.
JoAnn29 Oct 2022
I read ur response to me and that information made it clear why you could not leave your sister there. I don't like those DPOA papers probably printed from the internet and a notary. I think the laws need to change that a DPOA has to be done by a lawyer. That he has to have a private conversation with the principle to make sure they are not being coerced into assigning a certain person as POA and there is no Dementia present. I think the person being assigned also needs to be there and sign they are willing to be POA and understand what their responsibilities are.

Your sister needs care and you are not going to be able to continue giving it to her. You could try for guardianship in Cal. Medicaid allows the cost to be deducted from your sisters money. Again, call APS. Or call Office of Aging and see how they can help. And you need to be firm, I love her but I cannot physically or mentally take care of her. Your 85 I think that will be taken into consideration. But you must be firm, I cannot do this.

You keep mentioning how independent she is. She is no longer able to have that independence. Its no longer what she wants but what she needs. She needs care where she is cared for 24/7 by 3 shifts of people. People who work 8 hrs (yes sometimes 12 but not 5 days a week) shifts. They go home and get 8 hrs of sleep before they start all over again. You cannot do this 24/7. Don't let them say u can get help. It won't be enough. Dementia is too unpredictable. I am 73 and I am too old to take on this responsibility. Been there done that.
Geaton777 Oct 2022
JoAnn, there is nothing wrong with using the *very legal* PoA docs that can be downloaded from Legalzoom.com and Rocketlawyer.com. You can even have it reviewed through the website by actual lawyers who practice in your state.

Do you think a CELA doesn't use a template for their PoAs? They sure do, and then they customize it per the client's wishes, just like online. If it wasn't for the online option we would never have gotten my MIL to assign a PoA since she was in rehab for a broken back. Soon after that her cognitive and memory problems presented.

I think the biggest problem with PoA is when siblings fight and disagree with it, don't know who is the PoA or don't understand what it allows the assignee to do. Even "fancy", lawyer-drafted PoAs sometimes cannot prevent in-fighting over it.

I downloaded PoA doc for my Mom to sign. She's single and I'm an only child. Had it reviewed. No problems. Think of it as better than NO PoA.
NancyIS Oct 2022
I don't know the laws in California. Can you consult with a local social worker or attorney who specializes in elder law? It's clear that you cannot care for your sister by yourself if she needs 24/7 hour care. Since she didn't set up POAs ask about guardianship for medical and financial matters. Her guardian should be able to use her assets for her care. She has 2 basic choices, in-home caregivers who will come to your house or wherever she is living (they will also take her out for walks) or living in an assisted living/memory care facility. Much will depend on her finances. Ask the social worker if she is eligible for in-home caregivers. This will give you breaks while you figure things out. Lock up all valuables and personal papers if "strangers" will be coming to your house. If she eventually moves to an AL/MC facility, it would be best if it is near you so that you can visit and oversee her care (if you become her guardian). The other alternative is for the State to appoint a guardian, and they will handle everything and will probably run through her assets. You don't mention if someone is handling her finances now. You can ask them for payment for her expenses (keep all receipts). There are government programs to pay family caregivers. If you speak to a social worker, also ask about getting paid while you care for your sister and how to apply for reimbursement for her expenses. All the best to you.

ConnieCaretaker Oct 2022
Get an appointment with an Elder Law Attorney.

Perhaps you can arrange for an eviction and take videos of her behavior so that you can call 911 to have her picked up and taken to the ER where they will have to seek a placement through Adult Protective Services. You need to refuse any attempt by the hospital or social workers to place her back in your home. Remember, "NO" is a complete sentence.

Get an appointment with a Geriatric Psychiatrist, go even if she refuses.

(copy and paste) Aging in California
https://aging.ca.gov/Programs_and_Services/Long-Term_Care_Ombudsman/Report_Elder_Abuse_or_Neglect/

Geaton777 Oct 2022
Your options are:

- contact social services now to get her assessed for in-home services she may qualify for. At this point you can have a discussion with the social worker about county guardianship.

- call 911 and tell them she is delusional or hallucinating (or whatever story you want to give them). She'll go to the ER and this time make sure to tell the discharge people that she is an "unsafe discharge" and then do not go get her no matter what promise they make to you (they won't keep it, they just want her out -- trust me from my own personal experience). The hospital social workers will begin the process of finding placement for her and guardianship.

- you (or a family member like your son) pursues guardianship for her. Then this person will be able to sell her assets and place her in a facility. You may want to talk to an elder law attorney or social worker to see if you (or someone) can get emergency guardianship so decisions and actions can be taken sooner rather than later.

I'm so sorry for this exhausting journey... I wish you success in finding a solution soon!
Twintraveler Oct 2022
Three elder law attorneys have passed on taking this guardianship case. Maybe it’s small peanuts to them. Without an attorney, we cannot go before a judge to plead our case - my two sons are willing to share/split the duties, financial and all other, so I don’t have to worry about it. My sister does have some financial assets - above monthly pension & Social Security benefits - but without court approval, we cannot access her finances at this time. I am widowed and my sons are not wealthy. This is likely a common issue.
my2cents Oct 2022
It appears you have enough medical documentation to show she can no longer make decisions for herself. ie, to choose to live in memory care or with you. Talk to her doctor and tell him you can no longer do this yourself and need placement.

If I were you, I'd go ahead and find a place that she can afford and as close to your house as possible. Get all your ducks in a row, as much as possible, and talk to the doctor.

The state has no real reason to force you to care for her - especially given your own medical issues. Their job is to make sure sister is safe. With that said, it doesn't mean the state has to pay for her care. Memory care is expensive and most often people in those facilities have plenty of money and pay their own way. If sis doesn't have funds to private pay, it's more likely she would go to a regular nursing home that handles memory care patients (secure areas). You may have to talk to an elder atty to help you get authorization to complete the Medicaid application process to get her into a NH. Each state is different on qualifying for Medicaid so you need CA atty. Her income may suffice to pay for NH, but if it doesn't the next step is to apply for the Medicaid.

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