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?
Talk therapy was never my go-to and I've relied more on somatic and energy work, NLP..in addition to writing, but there's so many wonderful healing options!
I recommend the book Childhood Disrupted. One of many that has been helpful on my path. best wishes in your healing!
I recommend the book Childhood Disrupted for you and your sister. best wishes
I thank God I have no children but if I did I would never bring them down with this "me only" mentation. I do have a brother and after my mom died I cry everyday and feel so miserable without her even though she was 100% total care, I never been apart from her my entire life. She was my world. My brother calls me worried how I'm doing and I tell him I'm doing great adapting well so he will not have to worry about me. That is because I care about someone else, so I hide my suffering not to bring them down as he had his own issues with depression. I know how rotten life can be which is why I chose never to have children. The way things are going we probably are going to have a nuclear war with Iran so none of this will matter.
I think at this point mom is mired in a pattern and because of the dementia her thought processes are compromised and she simply can't use conscious tools to get herself out. I've healed from her behaviors long ago and my spirit wouldn't tolerate leaving her to her own devices. She's simply unable to care for herself. She needs a safe place with people who can help her. So AL it is.
There is no way, especially in retrospect, to figure this one out. You did the best you could at the time. You cared. You moved them when it was feasible.
My mother was moved into MC 3 years ago this month. She is now 96. The place (IL/AL/MC) was just rebuilt and so she was the first MC resident. Those who joined her shortly after are all gone (most have passed, some moved elsewhere and have likely passed as well.) Some residents are MUCH younger than she is (I *really* feel so bad for them as basically their life has been cut short! Some aren't even of early retirement age yet.) All relatives of mom's generation, both sides, are gone, as are some of my generation and most, if not all, of her former friends are gone. Yet she still ticks on... She has regressed in time and physical ability, but for the most part is "healthy" and I know that she is safe and cared for. When her time comes, it comes, there is nothing I can do to change that.
I think she is now the oldest resident. With or without dementia, we have no crystal ball to help us figure things out. Every person progresses at their own rate, so the best we can do is intervene if we think their living situation is unsafe/unhealthy - even then it can be difficult (mom refused in-home aides and refused to consider moving anywhere!) We had already planned to move her, and just before the move she developed cellulitis. Her neighbor called to let me know mom bruised her shin, but until my OB arrived, we had no idea how bad it was (snow and 4wd being out of commission, I couldn't check on her and he was arriving the next day.) Had we not planned this move, it likely would have killed her (it was pretty bad and required 2 rounds of antibiotics, wound care and stockings.) She didn't have enough sense left to understand how bad it was (previously she would call for ambulance for UTIs! this clearly, in her mind, wasn't important enough for that!)
Be kind to yourself. You can't change the past, you can just accept it and know you did what you thought was best for them.
Mom thankfully has been taking anti anxiety meds and the edge is gone but she's crying much of the time. Hoping this will change after we move her and there's people around. She's thankfully not as mean as she used to be. This will bode well for her in AL!
best wishes
I wish I could find a crystal ball for you and for me and for all of us, so we could see into the future and know what our choices of care for our parents leads to. It is so painful to see them experiencing such suffering, even if we may have had very challenging experiences as their children our whole lives. Your empathy and outlook despite such challenges is a sign of incredible maturity and wisdom, which you are lucky to have and surely worked hard to gain.
I can share my experience, but the truth is, every experience will be different...even if situations seem very similar. My mother-in-law was a very critical and unyielding parent. She had a favorite (youngest daughter,) and a scapegoat (oldest daughter,) and a mediator (her son, my husband). She fractured a family with her bottomless pit of emotional need and intense anxiety. As she aged, she became (more of) a hoarder. Looking back, the dementia probably started much earlier than we recognized. We just saw it as part of her general mental unwellness.
She was at home, then her husband had a stroke and needed nursing home level care. Then we got to see how much help she really required day-to-day. We were able to provide it through various means for a while. Then she fell and broke her hip, and that was the beginning of the end of her ability to live at home. She was already qualified for Medicaid long-term home care, so it wasn’t a big deal to make the transition financially.
After the hip fracture, her cognition was much worse for a very long time. Still, she seemed to relish the attention she was able to get at the nursing home. She loved some caregivers and loathed others, just like her children. Then, her favorite person, a social worker, left her job and that started the several times a day phone calls crying about how much she wanted out and wanted to go home. The staff was getting burned out with her constant need for interaction (along with my sister-in-law’s multiple-times-a-day phone calls and micromanaging of their every move).
Over the last few years, she has slowly declined, until this past May when she had become dehydrated and hospitalized. We wondered if this could be an easy way out for her, but my sister-in-law insisted on running tons of tests and treating everything aggressively. So, she lived on. My sister-in-law decided the nursing home was being negligent, so she moved her to another one.
That began her real major cognitive and physical decline. It was too disorienting, and she begged my husband to get her sent back to the nursing home she was at before. He has no legal authority (sister-in-law does) to make any decisions. So, we just kept trying to calm her crying and visiting as we are able (she was moved to a place 3 hours away from us).
She has settled in a bit since then, but had another hospitalization for dehydration, and is cognitively very, very poor. We have no idea how long she will continue to go on. She also has pancreatic cancer now, and sister-in-law actually entertained the idea of treatment. We are hoping for hospice, but it’s out of our hands.
Looking back, if she had been able to get home after the hip fracture, she would have probably fallen again. We just couldn’t manage her daily needs anymore as things were. My husband was on the verge of a nervous breakdown a couple of times.
I appreciate your “lighter grip” on your emotional attachment to things with your mother. I wish my husband would have been able to untangle himself from it all more, but he’s really not going to have any peace until after she passes and is out of distress. I’m sure you understand how draining it is being plugged into it all on a daily basis.
In the end, staying at home could help her find the end she’s wanted more quickly. Or, it could make things more complicated. The same could go if she is moved to a nursing home. You just never know. I think you have to make the best decision you can for now, keeping in mind...
Whatever you choose, I wish you all the best and send you deep compassion from someone who understands.
for escape. Why go down with the ship? She would be safe; you/sister can visit.
It's a win-win for everyone.
Since she is physically strong but mentally unstable I usually default to my usual standards. I ask myself these questions:
Is this situation healthy?
Is this situation safe?
Kind of a combination of the two. Is this situation clean?
If you read about this situation in the paper, would you wish that the authorities were involved?
If I answer no to the first 3 and yes to the last one. I have my answer. I need to get involved to fix the situation so it is healthy safe, and clean. As you know so well, you can't make anybody happy. If mom is unwilling to let you help her maintain those standards. It seems time to send her to a facility to guarantee her safety and health... if need be against her will. You are not prolonging her suffering; you are providing a safe, clean, healthy quality of life while she is alive.
Thankfully, I have long healed my birth family's effects on me, and strive to respond to everything in my life from a place of unconditional love instead of pain. Walking away without a trace is something my spirit wouldn't allow, and honestly I've learned even more about myself and my strength through these events. For that I'm thankful.
This too will pass and mom will get her needs met in AL.
even though she does not have enough money, she would still be taken care of as there are facilities.
Please check in with a social worker or an elder lawyer.
If your mom is unable to care for herself, the situation in her house could eventually be dangerous.
it’s not easy and getting yourself informed about your options will hopefully make your path clearer.
Yes, she constantly wished to die. She would ask why she was still there? I finally remembered she had been active in her church. So - I reminded her that it was up to her and God. If she was ready to go she should send up prayers to say so.
She had been very seriously several years before and nearly passed then. She told me then of the bright light and her decision to come back here.
Don't ever believe it up to you to help her. This decision is all hers and you need to tell her that - as lovingly and nicely as you can. Tell her she is loved, but you understand she would like to move on. That is the kindest, move loving response you can give her. And in the long run the best answer for your piece of mind also.
As for her AL circumstances: I worried about the same things you are expressing. But I knew I could not have Mother move in with me. That would have probably killed both of us. So AL it was. I was surprised, but the AL facility got her engaged with activities (which she always told me was not happening). And don't worry too much about the costs. If she owns her home, that will be able to be sold and monies used for her care. Living in AL she will always have others around and that is so important. It is something we always forget when trying to care for our parents - And where they like it/ acknowledge it / or not interaction with other people in the same circumstances if important for our (our parents and our own) mental health.
Good luck - prayers, hugs and blessings to you
If you have POA, that would also help, especially since it sounds like she is not able to make decisions that would ensure her safety. With all that you've described, I can't see any doctor that wouldn't be able to say that she's unable to take care of herself properly.
AL sounds like it is the place she needs to be. Whether or not she "engages" isn't the issue, safety and care are. There she will at least be cared for and that will take some of the worry off of your and your sister's plates.
I've often thought about how I would get my mother, who would rather die than leave her house, into AL when the time comes. While I love my mother very much, what you describe with yours sounds familiar. My mother was and moreso now is a great manipulator - guilt, threats, unhappiness, dementia, depression etc. I, too, have detached myself emotionally for my own health's sake, but I still want her to be taken care of the best way possible. Like I told my husband, one way or another, she will go when the time comes. It can be the easy way or the hard way, but it will happen. It will be for her own good, even though she may not understand or appreciate it. We know why we do what we do.
I hope you are able to find peace in your situation - you're not alone. Good Luck.
Luckily she assigned POA and planned ahead for this situation. I know not everyone is in that place and for that we are thankful. best wishes
And it isn't your mother who will do the accusing. The courts are not lenient with family neglecting seniors. Perhaps you need to speak with an Elder Attorney.
You are afraid your mother will not engage? Her problem, not yours. She seems determined to be depressed and unhappy, she can do that just as well in assisted living as she can in her own home. Her physical safety has to over ride her determination to be unhappy, and in so doing, to make those around her trying to help unhappy too.
If you can overcome the financial issues of your mother going into permanent care, that is the most obvious way to look out for her needs from here on in. She does not sound as if she is ready for a memory care unit....yet....but the time will eventually arrive given her dementia.
Meanwhile, the longer you and your siblings take to get her into assisted living the more your mother will resist. Been there, done that, as have so many in this forum. And, by the way, there is no magic or perfect way to make a smooth transition, so don't waste time searching for one. If and when the decision is made to move your mother into a professional care situation, engage those professionals in the process. Be ready to change your plans at a moment's notice, for your mother to agree and then dig her heels in. There could be tantrums and tears, but once the decision is made and the arrangements are in place it is not a good idea to back off. It will only be harder the next time, and the time after that.
But first things first. If neither you nor your siblings has POA you will have to seek legal advice. It does not sound as if your mother would co-operate in providing that now, she may well be considered unable to make that decision for herself.
It doesn't matter how miserable she has been. It doesn't matter if she's been abusive, uncaring or hard...none of this matters. Jesus will accept any and all who come humbly and willingly to Him to be saved, who want to go to Heaven when they die. We all default to Hell, if no decision has been made. Please give to her this amazing option...with all our sins and faults, we will be accepted into the family if God simply by asking Christ to forgive our sins and save our souls from Hell, which every one of us so richly deserves.
Check out a very nice Christian on YouTube...he has a sweet, gentle ministry to all who want love, comfort and the happy hope of Heaven! Mark Murchison. Youtube and/or Godtube... he's found on both.
Please do this for the sake of your mother's eternal soul! And consider the future of your own soul...are ye saved? If not, get saved! Be ready! It's Heaven or Hell. Our choice! Look up Mark Murchison. He talks, and plays guitar and has a sweet, warm, beautiful singing voice! His talking voice is warm and sweet too, like warm maple syrup! Love you and your dear mother! Shalom! 💗🕊💗
And may I add that I hope you continue on here as you have a LOT to offer!
Mom had a thorough neurology workup over a year ago hence the diagnosis. She is past the point of using the memory drugs. If she didn't have the other complications, I would maybe consider them, especially since she's moving into AL, but everything is overshadowed by her depression/anxiety.
I will definitely follow up over next several weeks.
Judgment should be left to God, what this wall is for..... is for Support. I wish they hadn’t said things the way they did, it wasn’t necessary, nor was it true. But then again we are all tired... physically mentally and emotionally as well. Grace is needed all the way around.
SO I just wanted to let you know, that I got everything you have shared except for the part, mom doesn’t actually say she will “kill her self”. She doesn’t want to die but has just kind of given up on living. She’s only 78.
Feels tough even saying / writing those words about dying ... can’t imagine what you feel having to hear them. But every other word you spoke could have come right out of my mouth.
The advice about allowing public safety or the system step in seems like good advice, and the only card we have left to play.
The only real answer to me is prayer... that is if you subscribe to faith. If she had been the way since you were a child, then there are probably some deeply rooted and dark issues still churning inside of her and because of her dementia, Devine intervention may be the only way to even curb the wrath she sends out.
My siblings and I have been so confused because so much of her negativity, indecisiveness, bitterness and judgement is what we have grown up with. Sometimes we still do a double take because it really feels like it always has.
But every once in a while my heart over flows while I share a sweet memory with her, and when she sees the tears in my eyes, it has actually softened her just a bit...THEN in a moment of compassion her thinking and speech actually becomes less harsh and for a few minutes we are connecting. ❤️ That’s one way my prayers are being answered I think. Cover them
with prayers, and pray for your own wisdom and strength as well.
Take your vitamins, and practice self care...
i would quit everything and go and dedicate my time to making the rest of her life the best it could be, and really enjoy maybe 80% of it ;)
but I’m really concerned of loosing my life while doing it, because I’m recently divorced and nearing retirement age myself in 5 years. Moms health is pretty good, and from what I understand this battle of the mind can actually last decades. So there is a little fear inside thinking I will wake up one day and she will be in eternity and I will be in my senior years, alone, with no retirement in place and my best years behind me.
Boy! I will probably get some really nice comments for that selfish remark.
But it’s okay, we are all on different journeys, and this really needs to be a No Judgement Zone treating others the way we want to be treated ❤️
Ours was interesting itself, given that mom's brain lied to her that she was fine, independent, etc and even though at one time AL was in HER plans, at the time we needed to consider moving her you would think it was a hospital for leprosy! Our problem was EC atty said we can't force her to move, even with POA already in place and suggested guardianship. Facility we chose said no committals. Ugh! WTH do we do??? Get creative...
Staff is well informed and knowledgable ready to handle difficult cases. This is the total opposite of moving my dad who was agreeable to everything :)