I hate my life and I want to either her to die or myself.

Unknown By Man

My father passed away in Aug and it has fallen on to me to care for my mother I am 28 she is 71. She was functional while my father was alive she would care for him do everything by herself. Since his passing she has become more like a child which is extreme frustrating and annoying. Constant desire to be around me, starved for my attention or my wife. My wife hates my mother with valid reason so she has checked out. It is just me my family is older do they cannot help nor do they want to do. She is a handful. I have her on medicad but unfortunately she does not meet the requirements for home care cause she lacks a skilled need. 

Though it is frustrating for me cause I get calls every hour from her if I am at work or her neighbors because she is looking for me (she hates to be alone and all her troublesome behaviors stem from that), doctors appointments etc. . . I did not want kids for this reason I can barely take care of myself if it was not for my wife. Dealing with this for a nurotypical individual is not easy but for someone that is non nurotypical I do not even know how to explain it. 

I had my mother in respite care while I went on vacation with my wife I was getting phone calls nonstop cause my mother was being difficult, and she was putting others at risk. I had a much longer post but it got deleted and did not save it. I am lost cause her doctors are telling me she past the stage of assisted living but not at the stage that a medicaid based SNF will be properly equipped to handle her. Given her past issues and reactions drugs are nor a viable solution. We have tried many but either she could not tolerate them or altered her temperament. We essentially were going down the rabbit hole of giving her one drug to treat one thing then another to treat another. 

I am also in a tight spot with her doctors cause when I asked them to be real with me back in 2020 what does the prognosis and progression look like for VD. It is bleak to say the least so I asked them what was the point of prolong the suffering, at that time she had a reason to live in my father. Now she has nothing she has me but I want to start my own life was getting ready to buy my first home. I just cannot fathom why any parent would be willing to watch their child struggle caring for them cause they personally want to live/ afraid of dying. 

In short I am stuck everyone around me is telling me to look out for myself but the problem is despite her flaws she is my mother but I am not the only one in the picture. I have the future with my wife to think about. I am lost and part of the reason why a part of me wants to just die so I can just stop existing and not feel a thing or be responsible for another person. I know what she wants and needs I have the ability to provide it but it will be costly and not sustainable. Care for this desire is not cheap and unfortunately not equal you get what you pay for. I mean she will not willfully go to AL even if her constant need for people to be around her was not an issue. 

Being as I lived with her at my parents home after my father passed I know what they went through during respite she is annoying but still very sharp. If I am not careful she will take my keys from my pocket. She has picked the lock for my room. She had a colorful childhood and many things are still muscle memory. My great grandfather ( they raised her, her parents abandoned her) was a locksmith and that is still one of things that relax her it is like a puzzle I still buy her a bunch of locks to toy around with and she likes watching youtube videos like lockpickinglawyer. She was also a pickpocket as a kid grew up in a poorer part of PR. She gets nasty if you do not pay her attention and she still fairly strong. Some of thinsg we do is go to the gym she real enjoys free weights. 

Thing is everything that can be done with her still needs someone present it is like she constant affirmation she is doing good which probably stems from a past trauma as a child. Thing is I know my limits I have only lived with her since Aug and I am on a razors edge. She knows all the right buttons to push to get me to cave to her but sooner or late I will black out and hurt her. She is far too much stimuli for me to handle and repetitive behaviors have always been an issue for me and ABA as a kid never did much for me when it came to that.

 Sorry as mentioned I had a much longer post that went over every detail but it was lost when I tried to post. In short I am lost this is rough. 

M1

Welcome to the forum.  The Alzheimer's Association has a free 24/7 hotline, maybe someone there--or also at your local chapter--could give you some advice.  There also may be a local Council on Aging.  There are probably resources to be accessed, but sometimes it's knowing  just how to go about it and what to say/what diagnoses to use to access the help she needs.  The hotline number is 1-800-272-3900, ask to speak to a care consultant.

There are many experienced caregivers here and I'm sure others will chime in.  Glad you found us.  

Istoppedescaping

Hello, sounds like what most of us have been through or are going through. It's not easy to care for someone when they are difficult. I have been on here for 4 years and the people on here understand what we are going through and can help. I also had to take sometime of work to help out plus am seeing a therapist. I hope this helps, it helped me.

abc123

Dear Unknown, I'm very sorry you find yourself in this situation. I think at 28, a person should not have to deal with caregiving but life is never really fair. You should be living your own life with your wife. Has your mother been properly diagnosed? Who has DPOA over her? Does she have any assets? My best advice is for you to call the 800 number here and speak to a care consultant, they are trained professionals and the service is free of charge. The next thing I advise is seeing a CELA as soon as possible. A good CELA can explain all the in's and out's to you and your wife. They can advise you with finances, medicare, medicaid, placement and long term care for your mother. It sounds as if your mother desperately needs to see a geriatric psychiatrist. They are the only doctors who are well versed at prescribing anti psychotics.

Believe me! I understand how you are feeling! My mother is in the end stages of Alzheimers and now my 85 year old dad is showing signs of dementia. My only brother is mentally ill, my only sister is self absorbed, my only grand daughter, 11 years old, has alopecia and is recently completely bald and being bullied at school. I want to be available for her and be a part of her young life. But no. I have to deal with a man who has put his career and his clients and his friends ahead of his family his entire life. He still does it. So yes, I get what you are talking about. The sh-t show does not stop. Get it under control ASAP and go on with your life. It would be great if your wife would step up as your team mate, to support you and help you get the legal stuff accomplished. I am NOT suggesting she help with hands on caregiving. 

Others will come along and offer wise advice, share their own experiences. We are like a family. You will learn more here than from most doctors. I'm really sorry you have to be here but you are on the right road now! You can get this under control. It won't be easy but you can do it. 

Just so you know, your mother is NOT responsible for her behavior. Dementia causes actual brain damage. A PWD(person with dementia) is NOT aware of their condition. The have what is called ANOSOGNOSIA. You are now the parent, not your mother. The most important thing to achieve is her safety. Please keep posting here and read read read the other post. I wish you and your wife a happy life.

Quilting brings calm

Unknown - I am so sorry  that you are in this situation.  Please follow the advice of people here.  Pick up a copy of the 36 hour day.  Talk to the CELA, talk to the alz counselor.  But also/ talk to your OWN doctor.  You need help for you.  There is no cure for your mom. You cannot allow your mom to turn what is a tragedy for her into one for you and your wife by giving up your life at this age to take care of her for what could be over a decade.  

Ask a lawyer about guardianship by a third party.  Yes, that puts your mom under the control of someone other than you.  Which is what is needed right now as you get care for yourself. No. You won’t always like that persons decisions. Again/ there is no cure for your mom.  Sometimes we have to step back for our own mental health and to keep from losing other people that are important to us.

Abc123 - for some reason I did not know about the rest of your family other than your mom and dad.  You are really challenged every day.  I had wondered a little about your dad’s cognitive situation since he didn’t seem to be really getting your mom situation fully. Hang in there, we are all thinking good thoughts for you. 

Unknown By Man

I have consulted with a legal console an old professor of mine. I have all my ducks in a row to a degree outside of pursing guardianahip if it becomes nesscary. The issue is that her safety is predicated on someone being around her more so for social interactions. Unfortunately she has zero assists outside of myself.  The thing is my mom is fully aware she is sick, which makes it painful she has a degree of self-awareness but she is under the impression that she is entitled to this level of care from me, and oddly enough a plethora of social workers, her doctors, and her own care team are of the same mindset. She is still at the stage where she is best suited to be in a familial care.

I am at the point where everyone on her side is telling me she will get worse in a SNF since that is her only option unless I step up and pay out of pocket for more focused care that private facilities can provide. Just the price range of these places is insane. I make a decent living but not enough to support my own family and my mother. Part of the advice I got from my own side is I should never use my own money for my mother's care. 

This entire thing around not meeting the required number of ADL to allow for home care is frustrating. She needs companionship and that is not an insurance thing and she has no other medical issues that required skilled need. I am going crazy with this entire repetitive behavior, attention seeking behavior, child like mindset. Cause if I play into her hands she is fine, she does not ask to go home, she does not ask where my bathroom is, she is able to cook complex meals on her own she generally well off. Once I step out she acts up. Get the neighbors to call me, calls me herself. 

We have tried many medications at varying dosages unfortunately she has had either a non effect or negative effect such altered self, hallucinations, suicidal ideation, hangover effect with sleep aids etc . . . Her doctors wonderful idea is for me to play into it give her what she wants cause in good faith they cannot recommend a medicaid based SNF for her and unfortunately she is too dependent for assisted living.

Currently applied for a few grants to help pay for home care, those are temporary. It is extremely frustrating cause everyone, I even reached out to a contact I have that works as a court appointed guardian. Their take is I should take care of her cause if she becomes a ward of state or I let another agency take guardianship her behavior is far too complex for the workload they handle and it would be far easier to put her in a SNF. 

Problem is no one around wants to be a part cause she was not a great individual before she got sick, and all these behaviors were normal prior as mentioned she had less than ideal behavior prior to getting sick all the disease has done was remove the vail that allowed her to seem normal. 

I just do not get why prolonging their life is right action. Cause she will suffer, and will be miserable and die alone in a SNF. Which is part of the reason why her doctors are against it. Even prior my mother has a history with suicide so they are being overly cautious with her it seems. 

On paper I can put my mom in a SNF but problem is I am being advised to not because it is not in her best interest yet. Which I understand I get medicaid based facilities are understaffed, underfunded, and over crowded. Which is why on a side tagent I wish it was legal to end her suffering. Life is unfair it is a sick joke to ask someone on the spectrum who can barely take care of their own life and work related affairs to be asked to care for a whole human that is already set in their ways. I never wanted children for this very reason but now I have become a parent and as such I am at a cross road do what is best for my new found child at the expense of myself and my own happiness or drop my kid off at the nearest dumpster cause pretty much that is what I am being told medicaid based facilities are like in my area.

My own doctors have told me to do what I think I could live with. As odd as it sounds my ideal situation would be to take a year off of work spend every waking moment with her do as many things on her bucket list as possible spend as much time as we can with her family then let her slip away in her sleep. This is ruthless of me. Though prolonging what essentially will be a life where she will progressively get worse for more dependent unable to do the bare basic functions without assistance like eating. I get it if she had money or I was willing to pay she would have a better quality of life. The place she wants to go is great she had blast but 13k a month on a two year commitment until possible consideration for a medicaid bed. That is more then what I make a year. If I put her in a home or let someone else care for her she will miserable and in turn maybe I would be miserable I do not know hard to say how I will feel.

I have reached out to the hotline which lead me here though they were honest and I did happen to get someone that lived in my area and dealt with such issues. They were blunt that they regretted the choice of putting their parents in a medicaid based facility but they had no other options. Just sucks that for a disease that does not care about ones status, care does. It is also unfortunate that is one or the least funded. I saw my mom struggle with my great grandmother  she had no say in the care. It broke my mom to watch her suffer, and I know one factor is if my goes into a general SNF I will not have the heart to see her, and she will die alone. I do not have the ability to see the progression. 

Once you lost your mind you no longer living. She cannot have fun asking to go home, walking around like Mr.T cause she is afraid someone is going to steal her jewelry. It has been fun.

ButterflyWings

Dear Unknown by Man- I am so sorry you are going through this and at such a young age. 

How wise of you to reach out for help. Please call the 1-800 number for Alz Assoc provided earlier and ask to speak to a care counselor for resources on how to relinquish responsibility immediately. There are Memory Care options that may take her Medicaid approval- great that she has that option. I would want my kids to use it rather than even think of harming themselves. 

You are correct. It is illegal to help someone end their life here. Period. 

But that doesn’t mean you are stuck with the responsibility. It really sounds like you need out, immediately. And yes, I would not want my adult children to spend their funds to support me— especially not to keep me in an unsafe “independent” living situation. That is enabling and masking her true situation. 

I think you are analyzing this super stressful situation clearly. It is kindest and most realistic and sustainable for you to NOT become her parent and put your mental, emotional and physical safety at further risk. YOU MATTER!!! You have a future and our loved ones (LO) with dementia sadly do not. That is not your fault. I encourage you to choose yourself and your marriage at this point. I’m sorry any of us have to deal with such tough issues. I wish you all the best.

Please call or text the suicide hotline for another 24/7 option even just to get this off your chest. Especially if you feel like you might harm yourself. 

Many, many of the caregivers here understand exactly what you are feeling and are urging you to stay in touch here, but also to turn this task over to someone else. Maybe Adult Protective Services. The Alzheimer’s helpline is a place to start and the Suicide hotline. I have called for others who asked me to, when feeling depressed and hopeless. You can do so anonymously. 

I am also sorry for the recent loss of your dad. Sending you strength and encouragement to listen to your instincts to let someone else handle mom, officially. Good luck to you!

mommyandme (m&m)

I’m so sorry for your pain and loss.  I completely understand the hopeless feeling.  Also, wishing our LO to pass on is natural, so I’ve been told. Doesn’t make it feel better but to know we’re not alone helps. 

An adult day care may be some help, even just a few hours a couple of days a week. 

Please take care of yourself. I know a solution would be a great help for your own self care…there’s one out there for your mom and you. Again, so sorry!

Unknown By Man

That is one thing about all of this I do not get, they have no future yet we are meant to prolong their suffering? Why is that the case when it comes to this disease. They are losing their minds and their self in the process, seems far more cruel of a fate. 

Either way it is frustrating cause due to her suicidal tendencies coupled with other reasons the medication pool is fairly small and we have exhausted own options and the safe dosages. I have reached out to the hotline and got some numbers for places to contact those based around our intinal conversation they do not feel she will be a good fit. I did send over her records for futher evaluation. 

Also reached out to a place for mom they were friendly but they mainly deal with private pay. She is technically still early onsent, she was able to pass her road test evaluation so she can still drive. She functionally needs no help with daily dress appropriately outside wearing all her jewelry, she can cook when she wants to. Her health care team not helping me much with is annoying cause as per the advice of the hotline I should be discussing the care of my mom with them but unfortunately given her suicidal tendencies and lack of viable medication that can be used I do not matter per se as they have told me. Her safety and well being matter above my own. 

Yes adult day care has been a God send I pay for it out of pocket cause the free / medicaid ones she does not like and all I got were phone calls from them which kinda defeats the purpose of me sending her to an adult day care. At this point I guess I am just venting cause I am so lost and I feel as my life does not matter cause my mother is in such a difficult position. It is frustrating to be told you make enough to care for you home have her move in with you etc . . . For the life of me I cannot fathom how that is a sound idea to bring the stresser into your home. 

Granted, I think I did make a mistake to use the contacts I went to school with that work in this field for their feedback and advice on how to handle such situations. Cause I bet it is akin to asking an ER doctor if you should get an elective surgery for the most part they probably will say no cause they see the negative results of such surgeries at higher frequency. 

In the end as her care team has stated she is not a hard case she just has to like you. Problem is given her views that is hard, I was doing private for a tad went through two agencies but they ended dropping her due to comments. She is a royal bigot which is odd considering her own upbringing. The aids put HR complaints and got to a point where they could not find someone to take the case. It appears difficult behavior is nor easy to handle if the medication pool is small and her doctors which does have the whole nine yards. 

Problem stems from the fact she is still early onset but I personally cannot deal with her behaviors so I am looking for an out but I also do not want to see her miserable yet I do not want to become broke paying for her care. Fun position life sucks . . . More or less I am looking for an option that makes everyone happy which is not possible happy endings are rarely that clean. 

Though low key the hardest part of all of this is listening to the lies doctors tell to create hope in a patient to curb their fears. That part is what currently stings the most but I wish I could do the same or find the resolve that allows myself to think what I am doing is in her best interest. Cause I still do not get why being honest is wrong. I tell her the truth that she has no cure or future, and she will sooner or later forgot how to do many things she once enjoyed. Cause she asks me these questions like I cannot remember your dads face anymore, or our first date, or when we were married. She tires to recall but she mentions she knows the events happened she knows she was married but the exact details are a blur. She states she is scared of losing her own identity and what makes her, her. 

Things like this make it hard for me cause we all know the outcome for her and it is not pretty or pleasant. She even has a youtube video of herself telling a story from 2014 and when I showed her she forgot the story. That was the sign after her stroke when I knew something was wrong. That said it is rough since it appears I am playing the waiting game and have to wrestle some demons to figure out what I can and cannot live without. Which is rough for me cause I have always lived a life where I was able to make things workout for the better this is really my first true raw adult moment. Which blows, cause I feel more hopless now then when I was told I had cancer. That did not even phase me I was able to face it head on. This I find myself stuck unable to move. 

Either way thanks for the advice.

Jo C.

This is indeed a very severe set of challenges and your stress is well understood.  This will be a bit long, but there is much to share. 

I read in your Post that you have called the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900 and did not receive the answers to the problems you wished to find.  Please know that you can contact that number as often as you wish or need to, and ask to be transferred to a Care Consultant who will be a highly educated Social Worker who specializes in dementia and family dynamics. Calls can be made simply for venting our own stress and feelings of being overwhelmed; the Consultants are very supportive and kind and can often be a good place to let one's feelings be respected and heard.

Does your mother have an actual dementia specialist she sees outside of her primary care doctor?  In a case as complex as this, that would be a definite asset in the care team and would be far more able to handle the various components.

Is it possible that your mother may be a person with a dual diagnosis; could she have a mental health issue in addition to her dementia?  Has she ever been diagnosed with a mental health diagnosis?

NOTE:  Your mother is 71 years old; from that it appears she may well have Medicare.  You also mention having your mother placed on Medicaid.   This then gives another opportunity for care plan management.   Either insurance would cover need for inpatient admission to a Geriatric Psych Unit usually termed, "GeroPsych."  This is where many of our LOs with dementia have been helped.  In this, as an inpatient, she would be monitored and assessed on a 24 hour basis; she would also have her medication assessed and adjusted as medically necessary - being an inpatient, they would monitor her for effectiveness of treatment as well as for side effects.   When in GeroPsych, there would be a psychiatric social worker who you would want to make close contact with.  This person can assist with the types of housing available for persons with your mother's issues.  Also, some of the Caregiver's here have found it a big plus to see a counselor themselves when going through the worst of times; it can be very helpful.

Someone has mentioned Adult Daycare for a certain number of hours a day and/or a certain number of day a week; whether or not this would suit your mother, I do not know. She would be in a positive setting with care and socialization as well as activities.  Not all are the same for hours and services, so it does take a bit of screening to find the best fit.  Some of them are contracted with Medicaid for reimbursement purposes, but not all are. Good to ask or to screen them online.

It would also be a huge help to yourself and family to begin to further educate the self regarding dementia; how to manage; especially how to communicate, etc. There are a myriad of books regarding this as well as a myriad of sites that can be Googled that can be a place to begin to learn the in's and outs of all and sundry. For a person with dementia, routine and structure to their days is a necessity; without that, many persons with dementia cannot feel secure or safe or feel extremely upset and act out.  Being alone during the day may also trigger all the negatives.  While she may be able to perform some duties and have recalls, her brain is already damaged from her dementia and she has strongly compromised reasoning and judgment and this inability to process properly may drive behaviors as well as feelings of insecurity.

One good read is one that can be found online to print off.  It is about 25 - 30 pages long. It is written by dementia specialist, Jennifer Ghent-Fuller; "Understanding the Dementia Experience."  You can Google it and ask for it in pdf. 

Learning the basics, how to communicate and how to deal with various behaviors is something we all have to learn when we are on the first rung of the learning ladder and mostly flying by the seat of our pants, but we do learn over time. 

NOTE:  Under no circumstances, NONE, is your mother to be harmed.  If and when you are feeling on overload and it seems you have wishes to do so as you spell out in your Post; do NOT hesitate - call for help and get yourself out of the proximity of your mother. 

Also, you have expressed the ideation of self-harm to remove yourself from the entire scope of your situation.  Please do not do this; if such feelings become evident, please contact.   the Suicide Hotline that can be reached at:   (800) 273-8255.  

There will be an answer to the immediate, most urgent needs as you move through this.  However; you may not find the perfect answer, but you can indeed find relief from the most severe of the situation. Placement may indeed be necessary and not only are there inpatient facilities; but there are also residential homes that care for dementia residents - usually five to six at a time in a private home type setting. These are far more reasonable and Medicaid in some states assists with costs of such care. It is one more thing to look into.

The thing I had to learn the hard way:   There is no perfection in all of this; just the best we can do under the circumstances with the challenges at hand. 

Please let us know how you are and how things are going; we are all here in support of one another.

Unknown By Man

My mother does have a dementia specialist, which she did get when I had to call CPEP for my mothers behavior in January. She was moved over to a geriatric psych for about three five days but my father at the time her primary caregiver did have her removed though it was not AMA, since they also felt it was in her benefit. My mom does have other diagnoses which make treatment harder such as schizophrenia, bipolar depression has had a issue in the past with substance abuse, suicidal and homicidal ideations. Her brain was all kinda of screwed up long before the VD. 

Her stay in geriatric psych was overly stressful for my father and myself cause unfortunately she was not responding well to the treatments, some even lead to minor events of inflammation in the brain. Given the time we were unable to visit and the isolation in itself did not help matters in terms of her treatment. My mom has always had issues with closed doors that ramps up her anxiety. So the treatment plan we came up with to have to continued to be evaluated by the referred doctors. 

As it stands given her complex workings to say the least chemical based interventions are not an ideal option which has lead to more social ones that for the most part work which is part of the stress. While stressful I was able to avoid most of day-to-day workings of my mom outside taking her to doctor appointments, going out shopping with her etc . .  That made things far more accommodating to handle. 

I have been reading up on dementia methods of handling the behaviors, communication, how to deal with issues regarding going home, new behaviors packing etc . . . Though I will look into the pdf you mentioned. I am also in a few support groups, I have also my own care team being on the spectrum to help with my own issues so I have been getting help on that front also. For me the mindset behind dementia has always been complex for me to handle cause I am overly logical which is part of my autism speaking so I do have widely differing views as to what to do. Unfortunately one of the major aspects of dementia is also my trigger, talking things out I do not understand is how I cope with things I do not understand, yet with dementia that is not possible. Which does make it harder on me cause my mom still has lucid moments where she is self aware of the changes happening to her and she opens up about it this is often when her suicidal thoughts and behaviors come into play. Which has gotten to the point where I even have to watch her intent time cause she often does research which does not help matters. 

That said yes I am currently looking at placement, just unfortunately Medicaid and Medicare in my area do not cover much for base dementia. I have found many places with the hotline help that may help but they generally at least in my area specialized memory care that is not isolation based are private pay.

I will keep everyone posted. Thanks again. 

Jo C.

Thank you Unknown By Man for the additional information; it is now much easier to understand the depth and breadth of the significant set of challenges you are facing.  Much of what is happening may well be secondary to the schizophrenia and bipolar disorder with the newly diagnosed dementia now being part of the deeply seated psychiatric issues. 

I am so very sorry; this has got to be an over the moon situation.  If there is a way to have her living situation changed so your marriage does not suffer and so you can find a degree of peace, that seems to be a best move.  But I also understand the challenge in that.  Finding an adequate care place must be far more difficult; and that is undoubtedly an understatement.

So hope that some of the others here will have new and creative input for you.  No matter what, please feel free to come here as often as you wish; we are all here in support of one another and that now includes you too.

J.

Unknown By Man

Yeah, it part of the reason why I am so conflicted cause everyone that partakes in my mother’s care have told me that more or less general placement through the system would exacerbate her condition and most likely lead to an acceleration of her conditions. 

I got a few responses from some places, I was wondering is it normal for placement to strongly advice against or outright decline a patient due to their difficult behaviors? Also is seeking a one-to-one just not a common request when it comes to memory care? Or is this just unique to my area and combined with what Medicare and Medicaid cover?

Even when we started having serious discussions around this issue after the passing of my father when my mother is more lucid she has even brought up what exactly is she looking forward to / what is the reason to live. Which is why we have adopted lying about the progression of her VD, and we will be experimenting with a placebo as a long term treatment to ease her anxiety around losing more.

Which does not sit well with me, since I hate lying to my mother and when she is lucid she can see through my lies fairly easy. Not the best poker player. That said it is rough cause my is asking more often regarding her progression / why am I letting her struggle / suffer. Though that line of questioning could have two meanings which is frustrating at times she means why I am letting her live, and others why am I not letting her move into the placement that she really enjoyed. I did have her stay once before earlier in the year to give my father a break. My dad had a staycation and my mom viewed it as a vacation. 

I guess moving forward, if acceptable care is limited due to her own personal finances and my role as her caregiver is to do what is best by her to keep her both safe and healthy. Am I morally obligated to limit her suffering and promote a change that has the best overall impact on her quality of life. How do other families juggle this difficult choice when it comes to caring for another person and their wellbeing is in your hands. This is what makes this hard for me, I have been told by many the general likely hood what type of care my mom will get in Medicaid / Medicare care in our area will not be great given the complexities that come with her. 

Though I am now looking at places that cater to her other issues and thinking of ignoring the VD line, but those avenues are also on the rare side since it seems even though her VD is newer it is the core of her issues to insurance. 

It is rough I get people say blame the VD it is not her fault but the issue is my life is still predicated on taking limiting my life to take care of person that is sick. Though because she is has so many issues going on my options are limited if I want to do right by her. 

Either way happy holidays, I do not expect any more phone calls or responses until after the new year so I will keep people updated with what the new places have to say.

dayn2nite2

"Doing right by her" means keeping her safe, fed, clean and sheltered.  It DOES NOT MEAN keeping her at home.

Her mental illness prior to all this will make it difficult and options limited, but if you find a nursing home taking Medicaid that's willing to accept her, then TAKE THE SPOT.

Her life probably will even be enhanced by the social interaction and professional help with her behavior in a facility.

Quilting brings calm

Nothing you do will cure her.  Caring for her In your home won’t cure her nor will it stop her from deteriorating.  It may however destroy you.   You have to consider your own wants needs and limitations.   In your case and from what you are saying, the best case for you would be for her to go back to the geriatric psych facility and then to an appropriate long term facility. 

The situation has changed from when your dad brought her home.  He’s not here to care for her.  Give yourself permission to place her where she has 24/7 care by professionals.  Stop thinking that Medicaid means  the bowels of hell.  Many fine facilities are a mix of private pay and Medicaid beds.  Even if all Medicaid …. Your situation is no different than any other family just trying to do their best on limited budgets.  We are all just doing the best we can.  Caring for someone with dementia is destructive even without all your moms extra diagnoses.  Adding those makes it impossible to do at home. 

Stop overthinking what certain people are telling you.  They aren’t living with her 24/7.  They aren’t considering you.  They are for whatever  reason guilt tripping you into caring for her at home.  It’s not in her best interests for you to be destroyed.  

Unknown By Man

Thing is her doctors are the ones telling me she will do much better in a familial setting such as her home, something about it being her anchor that keeps her more or less grounded. The bowels of hell view stems from actual SNF social workers, third party guardianship agencies such as self help community services, doctors at the ER, CPEP, her church, her own doctors. Literally everyone in her circle is more or less telling me that what I am considering doing is objectively wrong cause she can function community with general assistance. Problem is given where she is at I though Medicaid would be the magic bullet to a degree but getting hours for home care seems impossible given she does not mean their criteria for in home care, lacks skill need. 

How have others dealt with literal health care professionals tell you that what is best for your mom is to deal with it for now until she gets worse. Even the hotline made this suggestion told me this. View it as it is not your forever, wait until she gets worse. Due the fact putting someone that can function in the community with help but unfortunately due the dynamics she does not qualify is not fair the person, I have asked her PCP place her as a fall risk even though she has never fallen in hopes that would provide a skilled need, instead they gave her a temporary aid which was great but took her away after she met her goals. 

When I did place my mom recently was dec 1st to the 8th she was in the hospital for a part of that where she had a 1went one-to-one she was more or less fine I would call and FaceTime with her each day in the morning and before bed she had no complaints. When she got discharged and was placed in a SNF since I was not able to pick her up yet my phone was getting blown up left and right. She was going into other peoples rooms, walking around, looking for engagement. She can be difficult to redirect. They called me 13 times in one day when I mentioned this is why she had a one-to-one in the hospital the company keeps her relaxed. They told me the hospital records showed that she is pleasantly demented, easily redirect-able, etc  . .  But I mentioned yeah if you have a one-to-one that engages with her since she is not much of a self stater when it comes to her own entertainment.  That is when I was told it appears at the very least in my area NY one-to-ones in SNF even with memory care and AL do not provide one-to-ones. 

This is what is recommended by the doctors, but that is appears to be irrelevant. She is a kid, she needs constant observer like a baby that can still fed for themselves. This is why I have been told to wait, she will get worse and she will develop  a skilled need, it is just a matter of when. 

 It just feels like the ones looking out for her care, her care team are telling me what I am doing will make her worse and she will not be far more safer at home with assistance. I have spoken with lawyers on behalf. Appears to be a disconnect between her doctors and my mothers wellbeing verse my own doctors and my wellbeing,  If I want to follow what her care team views as the best possible action plan that will be promote the best remaining quality of life it will require me to flip the bill in either my own time or money.  

Which does not make this choice any easier, did you guys run into doctors that pretty much told you that your actions are not what your mother needs, and that they do not recommend placement at this moment yet? I even had one doctor tell out of the blue come out and say between you and mean if I was in your position I would not leave my mom in a Medicaid or Medicare based SNF, I get I should not paint them to be the boogie man but I am getting told they are horrible places generally for those with just dementia, and your mom has other issues on top which just makes it worse, 

My mom loves her doctors, it is not a chore to get her to see them she loves to see them. I do not know if I should just go find all new doctors. Not like they are bad doctors they do have her best interest in mind, they are wonderful with her but they are not making my role as the caregiver easier. 

Her church is the best, put up with the trials now and you will be rewarded in the end. . . This is what honestly fuels my thoughts of wanting to end my own life. I am not going to, I generally like my overall life. Just sometimes it feels like I am getting quartered and things would be easier since I would feel nothing if I was just dead. No pain no suffering, nothing it is over. 

abc123

Dear Unknown, Thank you for telling us about her mental background. She is an extremely complex woman. I can only imagine what this is like for you and I'm sorry. IMO she is fortunate to have you. You have done so much already in her favor, I respect you! 

I relate to many things you have stated. I hate this disease. It has consumed me.

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NizhoniGrrl

I'm so sorry you are going through this! And I'm really mad that our society does not provide better care and systems to support our elderly. You shouldn't have to choose between your own well-being/mental health and caring for your mother. Unfortunately, it sounds to me like you need to make the SN arrangements. Sure, she'd do better for longer at home with you, but at what cost? She will decline either way, and if she was in her right mind, I'm sure she would not want to take you down with her. Imagine what would happen if you became disabled or died? What would her options be? I think you may have no other choice. You've really worked hard to find other options and that's more than a lot of people would do. Give yourself some credit, too.

Wilted Daughter

Hey Man, 

I had to learn that my life matters and that I am not my mother's savior. My mother turned 90 early in the month and also has VD and most times acts as if she is immortal while draining me without blinking an eye.

I've guilt tripped for two years when it's not my fault. There must be some facility near you that will accept your mom. A dementia care/nursing center should know how to handle her behaviors and if not then keep searching. If caring for someone with dementia was easy there would be no need for dementia training, specialty care ctrs. etc. Have you contacted the ALZ Helpline (800) 272-3900, requested to speak to a care consultant and inquired about researching dementia/memory care facilities in your area or state. 

Perhaps your mom (due to her personality/dementia/mental health dynamics) doesn't play well with others, so assisted living environments may not be suitable. There are skilled nursing care homes that focus on dementia and should have various room types (i.e. private, semi-private...) and training staff. Knowing her insurance (Medicare, Medicaid, and/or private insurance) is a must. If she is covered contact each provider, if she is not apply and learn the benefits. Medicare/Medicaid can provide lists of facilities that accept their insurance and you can call the facilities directly and interview them before deciding. Also Medicaid in some states have elderly benefits (i.e. frail elder waivers (FEW), community based services waivers (HBCS) etc.) which offers services to seniors so they can remain in the community. Google the terms in your state or contact Elder Services in your area. You may also try Trualta.com

*My mom went to short-term care and if looks could kill, after being released it all she talked about (...in the nursing home they gave us snacks... in the nursing home...) No one can accurately  predict how someone or something will turn out. It's life not magic.

You have a  lot to live for, keep your head straight, remain calm/strong and remember this too shall past. Best wishes to you and your wife and may you be blessed beyond measure for the rest of your life!

harshedbuzz

UBM-

A couple of random thoughts.

Are you on spectrum? Having ABA as a child, the familial confluence of schizophrenia, sensory challenges and repetitive behaviors? Plus the unusual frankness with which you describe this situation. 

No judgment: my son has Aspergers and I could see how living with a PWD would be especially difficult on a person who is wired differently than most. You mention shadowing (you being mom's "person") which can bring a neurotypical person to their knees- it would be really hard for someone who needs some me-time and space to process and remain on an even keel. 

I noticed that same bias towards a caregiver making sacrifices as a "best practice" from my dad's medical team and family. They never considered the well-being of my 80 year old mother. It made me crazy. I can appreciate that they have their patient's best interests at heart and that they should, but when their shared PCP suggested they both move to AL together I might have snapped and told the doc I had 2 parents and while I knew I was going to lose dad to dementia, I would not let the disease take my mom, too. 

One thing that helped my mom in this time was getting her a psychiatrist and talk therapist who put her first and encouraged her to make the decisions that were best for her.

Often a young person (20-30s around here) will write in about being deputized to be caregiver to a grandparent. The standard advice is not to put one's life on hold to provide hands-on care at a stage in life when you should be getting an education, building a career, committing to a relationship and children. I think that advice applies to you to a degree as well. It's OK to factor your own needs into your decision and delegate much of the hands-on care while you handle the bigger decisions. 

If your mom owns a home, it could be sold to pay for a few years of care in a MCF that accepts Medicaid when that money runs out. In some states, she would be moved to a SNF for care at that point, but she will likely need a higher level of care by then. 

HB

Unknown By Man

Thank you for all the feedback, I have currently applied for two grants related to dementia and alzheimer home care, and working on getting approval through my mother’s insurance to get a wavier for her to go to her currently adult day care program under the grounds we have tried the listed ones and I do have documentation from the day cares that they were not able to mange her behaviors—fingers crossed. 

I have reached out to all.org hotline and was given a plethora of resources regarding placement. I have emailed over a dozen facilities in my area, and surrounding area. I have looked into what it would take to transfer her Medicaid to another state—mostly just have to reapply once she becomes a resident. 

Unfortunately like most Americans she does mot have long term care insurance, and it appears NY and NJ are above the average cost when it comes to placement. I do hope the places I reached out will either be willing to take her or refer me to a place that would. Unfortunately the place she was at will not take her back due to he behaviors during the short-term stay. I did remove her cause unfortunately given her behaviors they wanted to give her a medication that in the past caused her seizures and when I requested something else they said they exhausted their options. I did kindly request if they would be willing to call the ER and have her picked up instead—my mother use to work in the ER part of the cleaning staff so she is familiar with the area. This all went down around 12:30AM I got on the next flight back to NY expected my mom to be in the ER see was still at the SNF throwing up her guts and in a slightly hungover state—one of the side effects my mom experiences with sleep aids and sedatives. Thankfully they did not give her the one she had a seizures from in the past. 

Though yes since then I have looked into many programs that will be help keep my mom in the community a voucher for her rent. Grants, for adult day care, and many other forms of respite care in the form of HHA to try and buy me time until I can find a place for her. Reached out to places like a place for mom, but they mainly only deal with private pay and the ones that do take Medicaid you only become eligible after two years, then at that point you are placed on a waiting list for an amiable Medicaid bed. I did try and see if I could get them to put it into writing that she would get the next Medicaid bed after two years cause I could deal with paying privately for two years if it meant I would not have to pay after that point—fingers crossed. Though based around what I was told by the company that generally handles appointed guardianship in NY, well one of them self help community services, They bank on the person dying before they get the Medicaid bed so it is highly unlikely you will get them to put it into writing. Since I was going to send her without getting in writing but my lawyer told me to make sure you get it in writing cause they will tell you anything over the phone, Which is why I started to email my questions and concerns so I do have it in writing if someone slips and states that after x amount of time she is guaranteed a Medicaid bed. 

I have also looked into seeing if her insurance would cover a live in aid since I also have documentation from every place she has currently gone to that she is not at the stage where they would recommend she be placed though it is advised she does have a certain level of companion care. Also looking to see if my mothers PCP would be willing to give her a medication as a prophylactic. Since then at that point we can request aids through the need of medication management. Will be a rough sell cause my mom has kept everything in check with diet and exercise generally speaking she is in great physical health. Her PCP is not big of giving people Medication if they do not need it. Since sadly an aspirin does not count as something that would require management over, which all she takes. 

I have tried finding a medication should could tolerate from a psychiatric side we tried many and pushed the line for safe dosage levels and unfortunately we tried many but she did not either respond well, or had unfavorable side effects like hallucinating, bursts of violence—even before the passing of my father and her stroke we have tried to get her the psychiatric help she needs. Though unfortunately many doctors came to the conclusion before the stroke that her current temperament and state of being are manageable without medication even the geriatric psych she was placed at came to the same conclusion, hell they even made the request if my father would take her home cause the setting in itself could worsen her—if i recall correctly they said something along the lines she does not belong here or something like that. 

Prior to my father passing my plan was to buy them a small house since they lived in the same apartment for 16 years. I wanted to make their twilight years far more comfortable since raising a child on the spectrum that you had late in life is not the easiest. Cause my mom loves to garden and is generally okay when she is able to do her own thing, for example at their current apartment my mom created and tends to the community garden, she helps out at the local food bank etc . . . Though her lease expires and sadly the property manger is not willing to renew the lease unless someone is living with her. Neighbors have rightly complained since at times I would leave the house when she was asleep to go back to my own apartment or have a date night with the misses and she has woken up to an empty home and screamed for hours. I did leave the house in a safe condition, I still had the cameras setup from when my father was alive, the locks are controlled from my phone and each neighbor also has access to the apartment, I unplugged the stove just to be on the safe side, took her car keys away etc . . . Just when she is lonely it fuels her agitation. In the new year I am going to ask to see if I can try and give my mom 2mg of Valium, though given her past with substance abuse and suicidal behaviors  many are hesitant to prescribe a controlled substance to her. 

Been also doing research on other things I could give her like CBD, or an editable though I am getting mixed information so putting that on the back burner until I get a better picture how it might impact her both positive and negative. 

Oh and the comment about taking a year off was based around something my father use to say which I do agree with, and after this I will adopt it myself. He told me that if he ever got to a point where he started to lose his mind, and started to become more of a burden to myself or my mother all that he would request is instead of putting him in a home is take a year off of work and spend every waking moment we can with him, try and do as many of the things on his bucket list and allow him to die with dignity. Cause as he always said once you start to lose your mind you are already dead in his opinion. As he liked to say he would like to die knowing who he was, being able to remember our faces, being able to remember my first word and step, their first date and wedding. Which I do agree with and will adopt myself. Cause I would not want my wife to have to go through this with me if it ever came down to it. This is heartbreaking and soul crushing. I would NEVER EVER EVER want to put my wife through the pain of me asking “who are you?” Though that is just me. That is what I would do if it was possible with my mother, but it is not thus the whole take a year off statement. I do not expect a year to change anything. 

Unfortunately I was unable to prevent my father from suffering, he was admitted for a blood clot  and was awaiting discharge but he was a heavy man able to walk around prior to being admitted. I was waiting on the hospital bed for the home since his current bed did not provide the proper elevation and unfortunately due to the compression and being bed ridden he was not comfortable with standing and the hospital would be discharge him until I had that in place. He was only their for a week, caught pneumonia and died alone. 

Sorry about the tangent, but yes it does suck that one of the richest countries in the world does very little to support or elderly population, and it is also unfortunate that care is not equal across the board and so expensive. Honestly I would not have an issue paying for her care if it did not amount to being more then what I make in a year, and I do make a decent income it is insane the cost of care that goes into taking care of someone with this disease.

Also thanks for the resources, I will be looking into Trualta over the holidays.

LizG55

I'm so sorry for this nightmare for you that a lot of us face. I've been reading your situation with a broken heart for you and so many of us,

I do want to say that I agree with you and am going to make a post about it as far as the US not having a set up in place to care for our dementia patients unless you are indigent and expecting us to not be able to have enough money to live for ourselves but having to put the one we are caring for in unaffordable care centers or die trying to keep them going.  I pretty much feeling the same despair you express.   

Unknown By Man

Yeah personally feels like a pick your poison situation since no path available is ideal, and is without pain and suffering. Which begs the question what are we prolonging when a person reaches a point that their very well being and quality of life is predicated on another giving up their life in most cases to do so. 

It is a cruel joke, I have spoken with other families and caregivers and it amazes me how many are on copium. Which I get cause the truth is bleak and for many hopeless. Either you die caring for your loved one, end up regretting wasted years, resenting the loved one, end up going to bed wishing for them to die to name a few. At first I thought I was alone in these feelings and even thought I was a monster for wanting my mother to die, or saying things like the wrong parent died. Thou is it refreshing to know that I am not alone in feeling this way as sad as it may be.

At the very least an option to not only end the suffering of the one with dementia but also the caregivers. Our lives are important yet from my own experience many Healthcare professionals do not see it that way. Funny story you know one day my wife had to call 911 on me cause I was going to kill my mom, but the kicker is this took me to CPEP though since no one was able to watch my mom she had to stay with me cause they did not have the staff to watch her, ans they discharged me about 30 min later with my mom in my care. It opened up an APS case which nothing came of it. I was told I am a good son, that I am doing all I can, that she is doing very well in my care blah blah. 

I swear to many we do not matter. Hell some of the legal advice I got was to just abodon my mom and let her become a ward of the state. I also found out that it is also not very uncommon thing to do. It is disappointing, disturbing, and disgusting that these are the steps some people go through in such a country.

Tfreedz

Dear Unknown,

It is so crazy that you go to hospital to get help for feeling homicidal towards your mom and then 30 mins later, you are released to care for your Mom!! You are a great son regardless of how you feel at times. You are doing everything you can to research options and it’s obvious you don’t want to just drop her off at the government funded places that are usually awful. It helps to vent and it helps to read these posts to know that you are not alone in this awful struggle. 

The other night, I had to be rushed to the hospital (I’m only 46) for chest pain, left arm numb. I had a bad ekg and was taken by ambulance to another hospital. I thought I was going to die! My main concern while thinking I was dying was for my husband to go home and care for my mom and disabled brother. It was the middle of the night so there was no one to call to help. It was almost comical to me that on my supposed death bed,  I’m panicked about them. Anyway, it turned out to be nothing but extreme stress. I ended up having to stay almost 24hrs for testing and the whole time I’m texting a caregiver who came in the morning about my Mom and her issues. The nurse kept telling me I needed to relax and stop stressing and I told the nurse I had to leave because me at the hospital was causing more stress at home which in turn caused me more stress. Long story short, it opened my eyes to how difficult caregiving is and how hard it is to put yourself first. 

I hope you can find somewhere affordable and agreeable for your mom to go. I believe if you can find a place that will take her it will be the best solution for you and her in the long run. We are also in NY and prices are crazy! I have asked every place I look into what will happen if her money runs out. I have gotten several different answers. Some have said they will reduce cost after a year but I would need that in writing like your lawyer said. Keep up the posting, it really does you good to be able to share with others that get it.

Unknown By Man

Yeah it is crazy that even in moments where we should be concerned about our own well-being we often find ourselves thinking more about the person we are caring for even though they might be the cause we are in the extreme situation.

Yeah NY is crazy, I have found a couple of places that are not insanly priced I would being able to live in my Ramen diet .  That said I am trying to get then to put it into a writing that my mother will get a medicaid bed if I pay privately for two years. They tell you one thing over the phone and in person but when you ask for it in writing the back peddle like crazy. 

I also got many different answers my favorite was that they require me to become the guarantor and her placement we will be based around my income. I did ask hypothetically if my mom has the assists what would happen after it runs out I was told I would have to be listed as the guarantor if they felt her assets did not meet the threshold 

Aye it is rough, though if I find one I will post it her maybe it could help others in the NY area.

Tfreedz

Definitely don’t become the guarantor, but I’m sure you know that! I did find a place that said after one year of full pay ($5500 a month) she would be eligible for their dementia grant and would only have to pay 25% of that. Of course, when I asked for it in writing they said it was not guaranteed. Another place said after 5 years of full pay same thing but only if we can prove she is penniless. Please post if you fnd something in NY, I would appreciate it!! Also, I have not found anywhere that is taking new intakes for day programs because of covid...

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Unknown By Man

@harshedbuzz Yeah I do have Aspergers, sorry forgot to reply to your comment. Unfortunately my parents have lived in the city for a majority of their life and rented. So in terms of assets outside of myself she has none.My family does have a weird concept of the children becoming the retirement plan for the parents. 

@victora2020 I do get that our system is inherently flawed, and unfortunately you get what you pay for when it comes to care and even then you may not get what you pay for. That said I know what I am doing is illogical, I am sure better and far more intelligent individuals have tried to bend the system to met their desires and failed miserably. 

My mom is an insufferable individual, and genuinely causes me insurmountable suffering on a daily basis where I wake up hoping today is the day she is not breathing. That said I still do love my mom, and I do not want to see her suffer. I get I am going against my better judgment and operating solely on emotion, but she is my mom. 

What gets me about our system is they are promoting suffering, and it is as if they want to me take their copium that accept that this is the only way and she will be better off. These are the line the social workers fed my father and I during her first case of placement when we had an issue where her neighbor called 911 due to my mom getting violent since I would not let her see her family, at their request they did not want to deal with my mom, they went through it with their parents so they kindly told me if she does show up again they will not call me and they will just call the police. Which I get and I do not blame them, I hate them for it but I get it. 

Everyone around her as abandoned her, even on the holidays today I tried to get her family to at the very least FaceTime or talk to her and wish her a merry Christmas. They told me to no and blocked my number cause seeing her like that is far too painful. They did not even show up to my father funeral, I kindly asked them to show up cause my mom’s long term memory is still largely intact so when it comes to reminiscing about the past she can still hold a two sided conversation. They could not even do that, unfortunately when it comes to our past it was not very eventful I could go an entire day not saying a single word and for the most part I did while growing up.

Sorry another tangent, point is I know she will end up in a geriatric psych hospital due to her behaviors or at worse may even end up arrested. Since she does have sticky fingers, she once bumped into a doctor at the hospital during rounds and took their ID badge. They had to call a code orange and lock down the hospital since she used it to try and get out the hospital  She is oddly cleaver / must have had an unique childhood. 

That said I know the end result will be she goes to a SNF, most likely will say or do something that will warrant her to go back to the hospital then at that point they will transfer her to a geriatric psych hospital to come up with an action plan / medication regiment that works to control her more difficult behaviors, which will most likely come up as boarding more on the social intervention side since medications tend to either have a paradoxical, negative, or no effect at all when done at the safe dosages. 

So at that point they will either find her placement, she will end back up in  psych, or they push the higher dosages and observe more or less comes down to a gamble—words from her doctorsj—which is why we have not pushed for higher dosages, 

It is going to be a fun ride and I know I should not feel guiltily but I know that I will live with the fact I prolonged my mothers suffering for my own convenience. I know what I have do / will be doing. I cannot live like this, but as dark as it sounds I would have an easier time coming to terms with murdering my mother, at that point I know I can do it quickly, verse the slow and painful process that is dying from natural progression of the disease.

Though in the end i am afraid of going to jail so I cannot even give my mother that level of peace. This disease is really a cruel joke. 

BassetHoundAnn

For what it's worth my aunt called adult protective services when her brother and his wife developed dementia and their son was unable to care for them. They were living in squalor and a hoarded house at the time, with bills unpaid. I don't know anything about the events that proceeded or any particulars about how the situation unfolded, or what lengths my aunt had to go to in order to make things happen. But ultimately the state acquired guardianship over both of them and they both ended up in very good private care facilities that passed approval with relatives who were watching the situation carefully. All this happened in a different state from the one where you and your mother are living, but it's something to think about. I know from reading this forum that often APS doesn't come through with much help, if any help at all, but in the case of my aunt and uncle they certainly did.

Wilted Daughter

I was informed by home health care professionals/social workers,  and recently learned the best way to have LO placed is through a hospital stay. If taken to the ER then admitted into hospital, then after 3 dys or nts stay a transfer/discharge to short or long term care facility can be handled by the hospital social worker. Rehab, SNF (nursing homes) have beds set aside for such transfers. *Medicare: You can request admittance to hospital, appeal early release/discharge, request transfer to LTC (COVID rules may change bed availability/admittance).

Once admitted into a facility you are working on another level of procedures (i.e. facility, insurance). Nursing home ombudsman like LTC Ombudsman Program, aging.ny.gov and Medicare Beneficiary Ombudsman (MBO) https:/www.cms.gov should be able to answer questions. *Nursing home admittance/discharge have documented state/federal procedures/protocols (Ask Ombudsman)

*Check out Medicare eligibility (Free Medicare Part A): www.hhs.gov, www.healthline.com/health/medicare/can-you-get-medicare-if-you-have-never-worked and medicare.gov (SS# 800-772-1213) 

A new year wish is that you, your wife and your mom receive all the desired, required assistance so you can live your lives to the fullest!