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Hello sisters and brothers! Your not in the struggle alone. I am going through the similar thing! My mom is an chronic alcoholic with breast cancer in both breast and still smoking and drinking and not listening to the doctors or anyone at 70 this year and she falls on the spectrum of NPD (Narcissistic Personality Disorder) and she is in serious mental decline-these are the hardest people and when they age it’s harder. Doctors and hospitals are not neurologically testing (you can start here if you think her doctors will listen to do so) difficult elderly people. If they did these or similar evaluations for mental decline, they would most likely see she’s in some kind serious cognitive decline, which affects behaviors tremendously. I have a Masters degree in this area and I have been able assess and understand the outcome for these types of behaviors and mental reasoning. In most cases, when we see this serious decline, there should be neuro-psych tested. It’s expensive why Medicare doesn’t do it I think (my opinion). Depending on their stage, the state will have to take care of them when it gets to this stage and we don’t have resources or will to care for them (your mom and my mom too). My mom owns a home. I know Medicare are going to take it and eventually put her in an assisted living facility. She constant lies and tells the doctors “don’t listen to me” (I am crazy war vet with PTSD) as I try intervene on her behalf with her health/behaviors (FYI-California is the worst when it comes to mental health laws, there too liberal on the side of the patient). She lies and she accuses my daughters (one at Cal Berkeley who is studies chemistry and my other daughter who works for a social media giant in San Francisco) they’re both beautiful and good young ladies as they try to live with her to help her keep the mortgage and put themselves through college and work. They’re leaving soon and as I write this, because of the state of my mom and the house! When they come home and clean it, she lies and tells people they “dirty the house” and she leave soiled diapers everywhere and blames them for the filth she creates daily. As a child, I went though serious mental abuse as a child and later ran away to join the military when I was young. She has early stages of sundowning as she hates to go out at night and she is regressing back to her horrible ways. My younger and only sibling, my sister checked out and she lives 35 mins away too.

I cannot get a neuro-psychologist to examine her because she deflects and lies to the doctors and rehab/counseling has been useless as she lies and plays the victim. And usual since I was a child, she narcissistically smears (character assassinates me-always) even though I evaluated over 409 people (K-adults) with learning and behavior issues as a past Pre-Doc student In Education Psychology. Recent as two weeks ago, I’ve blocked her (abusive texts/msgs/rumor mill lies). I’m having to walk away and telling my daughters to prepare to leave. No one is going to continue to stay or rent from her and the nastiness and nasty abusive behaviors.

My best advice is to keep pushing for a neuro-psychology evaluation. Until that is done, there’s nothing legally we can do to prove she is unfit to care for herself and a danger to herself or others. Once and if serious cognitive decline is found, then care options through Medicare through your Mom’s “local county aging services” should tell you EXACTLY what options are available through Medicare. I’m a 100% disabled veteran from the Gulf War era with Lupus/autoimmune issues and I cannot and will NOT take care of her. We have to wait until she completely falls! “Acceptance and Commitment Therapy” is helping me cope with this and many others take it too. I pray and hope for the best for your Mom and for your family!
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Ellery Aug 2021
Neuropsych testing does not test for DSM diagnosis. You cannot get an NPD diagnosis that way. I've arranged and attended many testing appointments with my husband. They do not diagnose mental illness or anxiety, PTSD, etc.. They diagnose the neurology symptoms of dementia like memory loss, executive function issues like impulsivity, prioritizing, etc. Also, remember: Medicare is for the sick and old, Medicaid is for the poor. Neither of them will "take your home" that your mom lives in. Navigating the journey you may have coming up will give you a whole new education! Medicaid laws vary by state. It may be worth your while to start preparing now for what may be coming. I am sorry about all the problems, and thank you for your service!
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I know the feeling I’m in the same situation but fortunate enough to have Carers as I was struggling to cope I’m not sure what area you are from but could social services not step in as it seems she would be better off in a home I understand the strain on you as I was at breaking point and I have had to stop making daily contact as it was affecting my health hope you get this sorted stay strong
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Wow, this was my life a year ago! Mom at 86, she kept her apt clean but everything else is spot on. One night she wandered and was sent to the hospital. That was when I able to put her in MC/AL, it was a smooth transition. She wasn’t happy at first but she needed the care and to be safe. She never would had agreed to go on her own. It unfortunately took an incident to make it happen. While there she refused to use her cane or walker (still being difficult) fell and broke her hip. Now she is in a skilled facility, cannot walk. Needs care for everything. So upsetting. The dementia has progressed and it’s horrible for everyone.

Look into Medicaid so if and when a bigger incident happens moving her into a facility can happen smoothly. Good luck. Reading others posts a lot of people have similar stories.
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She sounds EXACTLY like my MIL…. It’s eerie.

She was lonely, so we played on that and have moved her in with us. She’s been with us a week so far and, so far so good (except tonight she had another “episode” and got very upset, saying she’d never seen me before in her life and when was I going to leave “her” house - oh dear…)

With covid running rampant in the nursing homes, we knew that was not an option. This isn’t for forever, but this is the best we can do right now. We are currently paying for care out of pocked for 6 hours a week, and are working on getting more. Right now she demands SO much of my time and attention - I have a 5 and 7 yr old at home, so she cannot be my focus all the time. This week has made it very clear to me that she needs more care. Due to covid, it will be in our house until her “episodes” can no longer be managed.

I totally get that you’re stuck between a rock and a hard place. You’re feeling guilty, but in the end, someone has to make the hard decisions.
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CTTN55 Aug 2021
Your SIL appears to be local (you wrote in another post that she drops off toys for your children). Why isn't she helping out? Why isn't she helping to pay for the Personal Support Workers?

You say that MIL demands so much of your time and attention. I hope your H takes over when he is around.

What's the plan for when her "episodes" can no longer be managed?
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My mother is early stage Alzheimer's also has life alert but doesn't want to call for fear they'll take her out of her home permanently. It could be yours fears the worst thing possible too? Wanting to lay there and die? Maybe she's ashamed of her living conditions and her appearance? Who knows what they're thinking! I say something and 2 min later forgot. It's not going to get any easier as anyone here knows. Definitely needs attention and someone who can inspire her that she's loved and needed. You've come to a great forum, there's plenty of people here with more experience than myself. Just know you're not alone but your mom must feel that way if she isn't asking for help. Even the strongest, stubborn and manipulative people grow up and have to accept they're no longer in control. Hope you find your answers.
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BurntCaregiver Aug 2021
JuliaH,

Your mother has good reason to fear that she'll be taken out of her home. I've known more than a few seniors who were put into nursing homes even when they had adequate care at home. Sometimes it was an over-zealous visiting nurse or social worker who thought they were Mother Teresa. Or their adult kids were not in agreement on the family care plan. Some would want the parent in homecare, some would want them in a facility care.
Never accept anything from the state for a senior still living in their home. No matter how many times some state program claims to be "free", trust me it never is if the senior has a house, or some other valuable asset. They become very invasive in an elder's home and life. Also, in the life of their family.
I worked for a lot of folks who had LifeAlert and used it. That company doesn't report any seniors to APS. The paramedics or police who respond don't either. The cops always try to talk to family first when they respond to a LifeAlert call. They told me this.
If the senior goes to the ER it will be a hospital social worker who tells APS. They also don't have to tell the family when they do either. So, your mom still has enough mentally to have this fear. Maybe she could do just fine with homecare help?
When the situation in the home gets to the point where the elder stops washing up and is living in filth and squalor, they need to go to a care facility.
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If your mother has no money, she will not be able to go into an assisted living. Medicaid will not pay for that. She will have to go into a nursing home. Having a live-in caregiver won't be an option for her in the apartment.
While she's in the hospital ask to speak to one of their social workers. Tell them what the apartment was like and that she cannot live independently anymore. Also, make sure to tell that that you will not and cannot have her at your house because you are unable to provide the care she needs. This is important because they will try to talk you into taking her in and will promise all kinds of help. They never deliver on it though. The hospital will find her nursing home placement.
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"I honestly don’t know what to do"... yes, you do. Mother needs a facility. You're just having a hard time admitting it to yourself and then taking the action. And it's okay to have that internal conflict! It's very common. This is just one of those areas where emotions cloud the problem-solving part of you.

"She will hate me if I decide she needs to live in an assisted care environment". Yes, she will. But she will hate you no matter what you do. You can't win. She's better off being hateful in a facility than in her apartment!

There is no decision to be made. You know she cannot keep living in the apartment. She cannot live alone and she cannot live with you. That leaves a facility as the only route. There is no "I don't think" she can live alone.

Sounds like whatever emotional issues she had got amped up x10 with dementia, which is common. Placement will ensure she is safe, not living in filth, and getting the medical care she needs.
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Harpcat Aug 2021
This is the best no nonsense answer and spot on! Listen to Loopyloo! She is correct.
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It sounds like she doesn’t trust you & doesn’t want to leave her home. Before you pull the rug, have you tried hiring a health aide to check on her & help her out a little every day? Also maybe a cleaning service? You do have to be careful to screen people (background checks through care.com or hire through an agency that has already screened their employees). You might also put a camera in the house where she sits the most so you can check on her & even talk to her through it. If she is mentally fit as you suggested then it just seems like things are harder to do as one ages which is normal for us all. Also flies have been bad so maggots would start quickly. I would empathize with her situation more than critically make drastic decisions. See if someone can just help her out. We all slow down & wear down. She might end up enjoying the visits from a house cleaner & an aide :)
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Taylorb1 Aug 2021
If you had read the story they don’t have the funds to hire anyone it’s not as simple if you can’t afford to
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This IS DEMENTIA.

PLEASE copy all previous steps described here, for HER SAKE and FOR YOURS, FOLLOW THEM.

Her problems, and your difficulty dealing with them, ARE NOT UNIQUE. Many of us have found solutions to problems like yours. The solutions are not often too happy, but you can design a safe life for her and she can be taken care of.

Her brain is broken, and she needs ongoing safety and protection.

Do NOT attempt to discuss this or to reason with her. She can no longer benefit in anyway from explaining.

It is OK if she hates you when she is placed in a safe residential environment. Nothing she “expects” is meaningful, because her brain cannot “expect”, and that cannot be fixed.

Move forward based on the advice you have received here, because those who have offered the advice have LIVED THIS.
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My daughter has worked rehab/NHs for 20 yrs as an RN. In our area she says Hospitals are not under the "safe discharge" law. But Rehabs are. So if Rehab is suggested, send her. While there you ask for an evaluation. Ask that before she is evaluated the doctor call you. Or write up what has been going on and attach pictures. Email or hand deliver and ask that the doctor who evaluates sees the letter first.

You do not want to get the State involved if you don't have to. A guardian will be appointed and that person will make the decisions for Mom. You have POA make sure the hospital and the rehab have a copy for their files. If she gets evaluated and its found there is Dementia and she needs 24/7 care, then you decide to place her in MC, with her paying privately or LTC with Medicaid paying. Do not allow the facility to be in total control of the Medicaid application. They can help but you should understand the process and be on top of things.

A while back a poster was getting bills from the same NH that was suppose to be doing the Medicaid application that was started something like 6 months before. I explained that in my State you have 90 days from applying to spend down assets, get the caseworker info required and have a place set up. If these things are not done in that 90days, you start all over. The NH failed to follow thru with the application.
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She absolutely has dementia. Do what BarbBrooklyn suggests. Unless you pursue guardianship through the courts for the purpose of making decisions for her and managing her affairs, the county will attain guardianship and do that for her. She will go into a care community where she will receive housing, healthcare, meals and the option for social interactions.

One of the most challenging things now will be to look at her with different eyes. She is not intentionally manipulating you, she has dementia. She's not stubborn just to annoy you, she has dementia. Her brain is broken and can't be repaired. To treat her otherwise would be like insisting someone with an amputated leg should be able to walk as if they have 2. The leg is gone and isn't coming back any time soon. In fact, the other leg is slowly disappearing.

I learned a lot about dementia behaviors and how to interact with LOs from watching Teepa Snow videos on YouTube. They were very helpful. Wishing you much clarity, wisdom and peace in your heart as you work through this in your mom's behalf.
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So many of your comments reflect those experiences we had with my mother.

Filthy condo.
Unwashed.
”Lying”.

It was all dementia.

She “seemed” fine, but her living conditions and personal care told us otherwise.

The “lies”, in my mother’s case, were just words. Sometimes they were to cover herself with an “answer”. But, the answers weren’t logical.

Her life was no longer safe.

It was dementia.

Take Barb’s and Grandma’s advice.

Step by step.

It can feel overwhelming, but you can help your mother to be safe, as well as keeping your own sanity.

Keep coming back here. You’ll see your story, in one way or another, repeated.

Best wishes.
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These are going to be very important phrases for you...
"She can not be discharged to her home". "It is unsafe for her to return home." "She has no one at home that can care for her" "I can not care for her in my home"
Ask to talk with the Social Worker today and discuss with them what the options are. Good possibility is that she will be sent to Rehab for a time and determination will be made by PY, OT and her doctor if she can be discharged to her home.
IF she is discharged to her home expect a repeat of the above.
If they do not find that she can be discharged to home you will begin the process of
Seeing an Elder Care Attorney (are you POA? if not if she is diagnosed with dementia you will have to obtain Guardianship. Or refuse and let another member of the family or the Court will appoint a Guardian)
Application for Medicaid.
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Follow Barb’s advice, which tells you exactly what to do. The ‘system’ then takes over. You aren’t the one who has to organise where she is placed, or is to blame for it. The ‘system’ should then take over her Medicaid application. Don’t do any more cleaning up in her apartment – the ‘system’ also needs to see what’s been going on. The more you try to 'take charge', the more you are at risk yourself of getting stuck in an impossible situation. So is your mother!

If you can go down this track, you won’t be ‘at your wit’s end’. Stop worrying, and good luck!
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I am not understanding these two thoughts: "she has the mental capacity and judgment of a toddler. She does not seem to have dementia..."

She has dementia.

She is in a hospital. You call the discharge planning unit and tell them about the condition of her apartment. You ask them to have her seen by psychiatry and assessed for her ability to live alone.

You make sure to tell them that family will not be providing more than casual support (she may be telling them that someone lives with her or that one of you comes every day).

You tell them that allowing her to go home would be an "unsafe discharge". Use those words.

You do NOT agree to discharge and you sign NO papers.. if they send her home in a cab, call Adult Protective Services.

People who are competent are allowed to make their own bad choices. That does not obligate us to crawl into a hole with them.
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Riverdale Aug 2021
Perfect concise helpful answer as usual for you.
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How far does she live from you or from a family member that would be willing to help? Maybe someone she trusts can go over and "visit" and just happens to start cleaning and make it a weekly or bi-monthly thing? My mom also isn't the Life Alert type of person, so I set up indoor cameras (without her knowing) to keep an eye on her and to monitor her daily habits (incase there's something alarming that she won't tell me about) and it's been wonderful! It's given me peace of mind, knowing that if something does happen, I can call for help and without her knowing, it still gives her a sense of independence.

I know it's easier said than done, but just breathe and take it day by day. You're doing an amazing job by caring and reaching out for help.
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