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?
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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.
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.
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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.
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.
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.
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).
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.
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!
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.
I recommend the book Childhood Disrupted for you and your sister. best wishes