I hesitated to pose this question, but after clicking through the forum I feel there must be a few caregivers out there going through similar circumstances. My 85 yo mother has been an unhappy person as long as I can remember. She's never done any of the work necessary to discover the value of self worth and self love, and has blamed other people for her unhappiness her whole life. As a martyr personality, she has chosen to be miserable in her emotions of grief, disappointment, and loneliness.
Over the years me and my brother and sister have consistently suggested counseling/therapy, but she has always claimed no one can help her, that "God is punishing her" in some way for her horrible life. She has consistently chosen blame, shame, manipulation, passive aggressiveness, and martyrdom. Besides severe depression, we actually suspected bipolar or some other condition. She would simply forget anything she said or did that was emotionally charged. As children we were emotionally and sometimes physically abused and gaslighted. I've actually healed all that...am not emotionally attached to my mother, and have been willing to intensively help my mom the last year since she was diagnosed with Alzheimers and vascular dementia. My sister helps as well. We simply don't want to see an old lady suffering.
Aside from her mental/emotional state, she has been fairly strong and healthy. As sometimes happens with dementia, she doesn't eat well or get the exercise she used to, and I expect her to decline physically as a result. Being her caregiver is challenging and can be highly frustrating if I let it... she lives alone still but we don't let her drive. (The battery died and she can't do anything about it.) Over the last several years she has become a recluse, with social anxiety and a fear of strangers. She doesn't want to go anywhere, yet complains constantly that she is stuck in her house. Not driving has been absolutely devastating for her, and it doesn't matter that we've been more than accommodating by offering to provide her rides. She's afraid to spend any money. Basically, she's mired in poverty consciousness, fear, and intense sadness that isolation brings. On top of that, we have the dementia which has skyrocketed her anxiety and she's often psychotic and paranoid. Luckily I was able to get her to a geriatric psychiatrist who could prescribe meds to take the edge off of that, so the fear factor isn't so intense. Because she's physically able to get around ok, she thinks she is fine and can take care of herself, and doesn't need any help. She can still take care of basic stuff, but I suspect bowel incontinence from time to time. Her house is a mess and she refuses help cleaning. She refuses any strangers in her house, making it impossible for us to hire outside help to check on her and give her meds or a warm meal. (Only microwave oven is operable.)
She has needed to be moved to AL for several months now, but we are somewhat concerned because she doesn't have much more than a few years resources to pay for that. My sister and I considered for a while that she might do better in AL, but, and now leading to my question. I'm convinced she will not engage. It will be a nightmare to move her. But she already hates us. Still... I have to consider..are we prolonging her misery by over-caring for her? Aside from an occasional good day maybe once every couple months, she's miserable and talks about just wanting to die and killing herself. She's outlived any friends and relatives besides us, and she wants to die. She tells us everyday. Even when she was in her right mind she refused to seek help or improve her outlook (never been one for change or proactive behaviors.)We brought in a therapist who works with dementia patients and even she couldn't help. She actually had never seen someone so miserable and abusive and unwilling to seek any joy at all. Her spirit is broken, her will is gone, and yet her body hangs on.
Anyone have any thoughts?
As an advocate and ally for those suffering from mental health disease, I can ABSOLUTELY blame a broken system. And the social worker assisting me through my mom's physician filed a complaint against the local mental health agency for not properly responding to my call, and denying my mom mental health services when she was willing to receive them. These agencies are mandated by law to provide same day mental health services to those seeking them.
In my jurisdiction there are two choices when someone is a danger to themselves or others: go to the magistrate's office and have the police go to her house, handcuff her, and have her admitted for evaluation, (slightly difficult because I'm not mom's POA, but my sister is healthcare agent and she's helping me) or the person willingly admits themselves (but I still call the hotline and say she willing to come for evaluation..please advise location to take her.) I know this because I called the number and spoke with a professional about my situation with my mom. I'm not going to share details, but yes, my mom was describing how she would kill herself, and harm my sister, I might add. But when I called back a few days later, ready to take her in, whoever was on the other end of the phone decided that because my mom couldn't administer her own medicines I should call a senior health agency, which is just a referral service. And the person they said would call me never called me. Not the same day. Not at all. Absolute FAIL. So I reported them.
This is not my only experience with agency failure to provide help to people really needing it.
If someone is talking about suicide all the time, they need help. For crying out loud, people shouldn't have to attempt suicide to get the care they need. That is really messed up IMO. Broken system.
I hope you stick around; you're a good resource and an exemplar of how to advocate for difficult elders.
I might lower my expectations of what she is capable of and let trained people be responsible for her. If she's living alone and in dire need of care, (is she competent) I'd make sure the POA knows in writing and let them do their thing. If they refuse, I'd consult my own attorney about getting the proper authority to protect her from the risks she incurs from living alone. For people who are incompetent, at risk, and unable to care for themselves and their household, there are options to get them help. The financial issues are worked out. Those who can pay, pay and if not, arrangements are made. The Elder Law attorney can help explore that as well.
It's really sad, but, regardless of where a person who has dementia lives, they are likely to suffer. Even the best care cannot keep them from losing their memories, losing their ability to care for themselves, to ambulate, to bathe themselves, toilet themselves,...... to live life....it's unfair, but, inevitable with this cruel thing called dementia.
Some people have days that are better than others, but, they rarely are good. So, I would surprised if the misery was removed, regardless of what is done, though, I will say that my LO felt much better taking a med for anxiety and depression. Maybe, your mom's HCPOA might explore that with her doctor.
And yet our culture supports keeping people alive no matter what, so that is what we do. And that's what we'll do. We will put my mom in a facility, and she will either decline or decline slower, plowing through her hard earned retirement on the outside chance she'll get a glimpse of happiness and peace. It is what it is!
Her anxiety meds have taken an edge off for sure!
I'm not arguing; I'm just pointing out what others here have come up against.
I'm going to challenge your thinking (again).
Why do you think that your mother's basic care is on you?
While she was competent, she did not give you authority to act in her interests. She gave that power to an attorney. THAT is who should be covering all the bases, shouldn't s/he?
But there's always the ideal, and the real.
Ideally, I wouldn't be involved in this nonsense at all.
While she was competent she chose my younger brother to act as POA, and my older sister to act as healthcare agent. My brother was her golden child and he's an attorney living out of state with a young family. My sister has been more, let's say, selfishly inclined the last several years. But she helps with mom roughly equally now, paying her bills and helping with visits.
Short of driving my mom for a day and dropping her off on my brother's front porch, which honestly is just a drama-filled move that is far removed from my personal modus operandi, I put on my big girl pants and dealt with the situation at hand. I guess that's because I'm a double Capricorn, an optimist, a constructive collaborator, and true believer in taking inspired action when a person or animal less capable than me has crossed my path.
The POA is generally supportive and expeditious when it comes to paperwork and phone calls and I'm good with that. I'm not in the business of forcing someone to care in the same way I do.
To be real, my mom honestly never really knew her children, or what they are capable of. (This is particularly true of her daughters.) She was too busy criticizing, shaming, and complaining about us to even think about nurturing an actual adult relationship. If I criticized, complained, and shamed someone else, I would be perpetuating bad behavior.
long story short, your mother may very well not want to die not matter what she says. But I would see if you can at all possible get her into a group facility to release you from pressure and give her social interaction. She may find someone she can complain to and that will make her happy
Do you think he will really move her if she's been declared incompetent? Why doesn't he want her near him? (I think we know the answer to this...he wants YOU and your sister to continue to be enmeshed with her, rather than him.)
Medicine helps with that for a little while.
It's a full time job between caregivers and spouse. But they need to feel someone cares. Deep sadness hits them for they DO know what's happening to them even tho it might appear they are separated from that fact.
God bless you and your mother, for He will.
Mom's not taken medicine for the dementia as there wasn't a way to get it to her regularly.
I'm familiar as my dad also developed cognitive issues! But his decline leveled off once his physical needs were met.
My mom has been divorced for years and has been alone since then. She is under the impression that since she's physically capable she doesn't need help. Which of course we all know is false.
If you all don't have the legal right to do this, legally she can leave - as Barb said.
I went no contact with mthr who refused to get treatment for her mental illness and who enjoyed slicing people to shreds with her words. 8 years later, the police were called on her numerous times because she was wandering. They in turn called Adult Protective Services each time, which allows them to have documentation if they need to seek guardianship. APS found me in the phonebook and asked us to come rescue mthr. We applied for and received emergency guardianship for several months. That is when we placed mthr in a locked memory care. She was in such bad shape she did whatever my husband asked.
This will become a bigger emergency down the road; I think at least some of us feel it will SAVE resources if you call 911 and get her hospitalized now.
Another thought would be to call a local hospice organization for an evaluation. If she truly wants no treatment for what ails her, she should be amenable to that.
As it is, if you deceive her into placement, she is free to walk out of any facility and return home if she has the ability to call herself a cab.
We ALL empathize with your situation; all of us here either are or have been caregivers and we understand the struggle of making "the least bad choice". Your mother has longstanding psychiatric issues that have never been addressed which makes her dementia even more complicated than it usually is.
I should add I’ve been through all this with my dad, who I had to move across several states on short notice, who’s AL failed miserably to meet his needs and he’s now in SCF. So not my first rodeo. He was, however a very happy person who is peaceful and who’s dementia has actually leveled off due to music. Another story though.
I think for the most part the essence of my post was missed, which is fine..
AL will very likely make her decline faster. Which is evidently what she desires. It did for my dad and he was agreeable to it. There’s probably a .05% chance she would be able to adjust to it (she’s been living alone for 25 years.) But that is not my responsibility. Basic care is.
You are not helping her, you are part of the problem, listening to all her nonsense is counterproductive for her and you both, become part of the solution, do not continue to be part of the problem.
I’m well aware she needs help and that’s why I’m moving her. Nothing I’m doing has anything to do with her wants.
And I’m not going to waste the valuable resources of 911 to play into my mom’s drama. Not a solution.
Either leave her alone and wait for something to happen that forces her to the hospital where she won't be released back to live independently, or, call APS and have them step in.
I feel for you, I really do. All this BS, negativity and drama takes a huge toll on US as the children, ruining OUR peace of mind BIG time. Meanwhile, they go along their merry way wreaking havoc and despair with every step.
Sending you a hug and wishing you all the best of luck in the new year.
So the question is "Are you prolonging with overcaring". I doubt it. You cannot ignore safety needs. We are not a society who will paddle out to the ice flow and sit our elder out on the ice to pass on. We are a society that attempts (even if not very successfully) to care for and keep safe our elders.
I think that her wishes are reasonable. She is over a life she really never did enjoy, but there is nothing to be done about THAT unless she is of sound mind and decides to do a final exit by stopping any intake of food and fluids. That is now being done by some elders and by some with debilitating chronic disease, and indeed with the help of their families. I myself have discussed with my daughter the possibility of opting for this at some time in the future, and she and I understand one another.
Your mother however, is now diagnosed with a disease that our laws and our society has said means she no longer is of sound enough mind to choose a final exit option. So she requires the help of society to endure. Sadly.
I wonder if what you are asking is what exactly your responsibility is. I think you have a moral responsibility to see that her finances are in order, that she has a POA to act for her, that she is safe (that is to say from burning down the house, and etc). If you are health POA you need to discuss all of this, just as you wrote it here with her doctor. And with your mother present. You need to discuss palliative care, a choice not to treat, and a choice of comfort care now moving forward. You say you believe her safe alone, but that you are responsible for a lot and there are not funds to make it otherwise. I think that means that sooner, rather than later, your Mom will face placement; as there isn't a lot of money the placement will not be to her liking, but as you describe her it would not be in ANY case. My bro has money enough for a nice assisted living. Doesn't mean he is thrilled to be in one. DOES mean he will make the best of it as that is how he always lived his life.
So, people don't change. Basically you are saying here you Mom is ready to go. And you are ready to let her go, as you see her life as miserable. I think these are reasonable wishes, but as I said, there is no ice flow, and that isn't how our society has written things out. My brother often says he wishes he had not survived his car crash. In all honesty I wish that for him. But he did. And we are BOTH left with making the best of it we are able. Listening to your sad story makes me see how lucky we both are that we can still pull some joy out of life, even if we pull it out kicking and screaming.
Now, I know through years of counseling of my own, that the mention or 'ideation' of suicide is often enough for a counselor or psych doc to call a LO and 'rat you out', so to speak. Or depending on how serious they deem you to be, a forced hospitalization.
Don't know how that would roll in your case. Probably be enough to get a 911 call, but then your mom would say she was just kidding or something, and they'd file their report and move on. Maybe it would, in fact, get her in the system.
We hate to do anything to 'force' our folks to do the things that are best for them, but we sit on the sidelines, wringing our hands and frustrated by the daily dramas.
You may end up forcibly have her moved. Have you called APS and reported an elder in danger? Someone called on my mom, years ago, after they heard YB screaming at her. It came to nothing but a report, but kept YB from yelling so much.
Do try these two things--A 911 call and a call to APS and then regroup and see what can be done if she isn't removed by someone else, you may have to become forceful with a change of living arrangements. Look at it this way--could she be worse? You may be tough with her, but in the end, she isn't safe or happy where she is now.
Call the EMTs when she mentions wanting to kill herself.
When she starts on her tale of woe, get up and leave. Not good for her or you for her to ruminate like this.
I agree I'll be relieved when she's out of my primary care!
It sounds as though only a medical emergency can get your mother the care she needs. More than likely, she will land in the hospital due to a fall, for example. Do not accept discharge to home. Make it clear to the case manager that you and your siblings want her placed in long term care.
Given the choice, sign DNR papers. At the very least, when her body finally gives out, she will not be resuscitated, which is a terribly violent act. In my opinion, it's a final act of kindness.
She said your mother's care needs weren't being met. And that it wasnt your fault (or your responsibility, I would add).
I fully realize it's not my fault. My mother has chosen a life pattern to not be self-responsible for her emotional health, to not seek wellness, or inner peace, and while the jury is still out as to the many causes of dementia, there's certainly evidence that lack of a healthy mental, emotional, physical and spiritual lifestyle and social interaction can be a contributing factor to brain vitality. I think it totally stinks that she has to deal with dementia on top of all her other issues. She's exhausted.
To a certain extent, it is very much my responsibility as her adult child. As a compassionate human being. To see that someone unable to care for themselves is taken care of.
Get her admitted to the hospital, get her a thorough psychiatric evaluation and start working with the social work/discharge department the minute she gets admitted. (Not "observation status"...admitted).
Challenge any thoughts on the hospital's part to send her home. It's an "unsafe discharge". (Those are the magic words).
Since the therapist couldn't help, will your mother see a priest or pastor? He or she might be able to convince her that God is not punishing her. My mother is a non-practicing Catholic and refuses to see anyone, but still maintains that she's being "punished for her sins."
I really feel for you. I know what it's like to hear that kind of thing day after day... it's a real downer, and it's very difficult to be around such negativity on a regular basis. It's been useless for me to try to talk her out of her persecution complex, so I just pretty much let her rants go in one ear and out the other. It's all I can do. I know that's not much help, but if nothing else, take comfort in the fact that there's someone else out there who understands.
Eeep. I can't imagine her living with me. Best wishes.
Might be time to back off and stop listening to all her negative BS, don't contact her everyday, move the complaint department to the 4th floor, far away from you.
You can change this situation, place her in AL, don't over think this. My mother fought my brother and I for 10 years...she didn't want to move out of her house, well she had a stroke, we sprang, she is now in AL and loves it.
She lives alone in a house where the cooking facilities don't work except for the microwave. She probably has incontinence but through shame is dealing with that herself. She is deeply depressed. She feels isolated. She is fearful about her financial security.
And NONE of this is your fault, mind. But much as you and your sister would love to, much as you try hard to, neither of you is caring for your mother at all. Through her resistance (not her fault, either - she is mentally unwell) most of her care needs are being neglected.
So, starting from the premise "could it get any worse, really?" I think you should get in touch with your Area Agency on Aging, tell them what you've told us, and ask for their help and advice. It may be that things will have to get worse before they get better, and you and your sister will have difficult choices to make, but it seems that there is no possibility whatsoever that your mother's quality of life can be improved while she remains where she is.
I've gotten in touch with all the agencies through the course of her care. I'm well aware things will get worse and not better. She obviously can't remain where she is, and she will have to be moved, whether she wants to or not. We had plans to move her near my brother but he backed out. And we cannot maintain the level of care she needs and will need by going to her house. Hence the move. I was simply asking if anyone else was experiencing this with their relative.