My mother is one of the most miserable humans on Earth, and has been for years. Whenever anyone has asked her "How are you doing?", for as far back in my memory as I can reach, I can never remember her saying "I'm fine". Now she's smoked herself to death. She has COPD, CHF, steroid-induced diabetes, a colostomy, osteoporosis, bone spurs in her neck, neuropathy in her limbs, brittle skin that tears at the drop of a hat...the list seems endless. She refuses to get out of bed to try to exercise to keep up any strength, and wants me to do more and more and more for her.
She's in the hospital right now because of a fall last week. She says her knees gave out.
I don't think it's so horrible that I just want this woman to finally have some peace, and yes, honestly, for the rest of us around her to have some as well. The discord and disharmony this narcissist spreads with her always ALWAYS negative attitude takes a toll. She will never change, and her health will only continue to go downhill.
I realize that I don't get to make the decision of when she goes, but I will admit that I do want her to. I think it's the only way she'll finally be "fine".
Vascular dementia, regular dementia, insanity...whatever my mom continues to suffer from, is killing me, my sister, her son (those who try to care for her). We have had her in a nursing home twice (both times her insane uproars convinced us to take her out). We have taken her in our homes, and now we are trying to care for her in her home because her NON STOP demands to take her home and hateful accusations forced my sister to give in and take her home without my consent because one night, my sister snapped. HUGE mistake to take her home, but it happened and we can't look back.
So now, everyone is running to her home to take a turn and I began to take my turns in my home because my full-time job in my home requires it. One may say, and has said, moving her around is too hard on her, but even when she is in her home, she does not recognize it. Yesterday, (while taking a turn in my home), she asked me 74 times where she was. "Am I in my home? Or Your home? Where am I?" She cannot be left alone. She cannot find the bathroom EVER. If she were nice, it might be bearable, but she isn't nice. I still cannot believe she is who she became. I would have never guessed my mom could become this hateful person. This dreaded, dreaded disease haunts me.
So, as soon as I answer her question of where she is, no matter where she is, she goes off on a tangent. If she is in my home, she says she wants to go home. When she is in her home and you tell her she is in her home, she asks why she is there because she doesn't believe she is in her home. From there it goes to button pushing..."Are you still married to the same man? Was the FBI here today looking for drugs? Does your son have a job? I am not senile. Take me home! Am I in my home? (Mom, I say, the doctor feels it is best if someone helps you in your home). I can live alone, she screams. The doctor said I can live alone. You just want my money. You just want my home. You are taking things from my home. There is a reason why you won't leave me alone and I am going to figure it out.I am going to call my attorney."
So, there is no joy in caring for her and pity can carry you only so far. There are no special moments or glimpses of who she used to be. But now I have forgotten who she used to be. I now question whether she was ever the person, MY mom, I thought she was.
My dad was a raging alcoholic and she joined him later in life. I was the baby. I stayed around the longest to try and keep peace, protect her. So dad knocked me around as a kid and now mom is knocking me around as an adult. When dad passed, she had multiple accidents (broken bones, breast cancer, COPD), the mini strokes (a bigger stroke) which is why we are where we are today.
I was the main stay through most of her illnesses and I could bear it until her mind started to go.
Now, she is filled to the brim with verbal torture. I cannot bear to walk in her room to take her food or medicine because instantly, she says, "Where am i?" And it starts all over again. No matter where she is, she will fight about it. I think she does not want to be a burden, but rather than be grateful--she is hateful. She refuses to think she is older...she thinks we are equal so when she sees me moving freely (she can't because she has no idea where she is or remember where it is she wants to go, she needs a walker and is hooked to oxygen), I think she secretly hates me. She forgets for a second, I am her daughter...or does she? I can't tell anymore.
The absolute most awful torture is hygiene. If I hand her a warm wash cloth to wash her face, she looks at me with pure hatred. Dear God, I cannot even begin to share what it is like handing her a tooth brush. And a bath? That takes days of preparation. I understand it is humiliating to her and I do everything I can to allow her to do it herself and keep it private, but she is so full of hate, she refuses to wash herself once I actually get her on the bath seat in a warm tub of bubbles. She thanks me when it is over, but she HATES me for doing it.
I know I am done doing this though--caring for her. Almost 3 years. It helps to hear that wishing her dead is more common than I thought. And the death wish is just wanting all of us to be free of this personal hell she is in--we are in.
It doesn't matter if she is in my care or not, because whoever is caring for her calls to vent, complain, scream, beg for release--there is no escape. My sister and I argue. There is no set schedule. I am hated most as my sister is retired and my job dictates how much time I can give. It doesn't matter where mom is, the situation has caused severe hatred and back stabbing. My sister refuses to take her back into her home because my mom says awful, hateful things toward my sister's boyfriend (they are not married). I find it unique that my mom can remember that my sister and her boyfriend are not married. I find it unique that my mom remembers specific things that she can verbally attack the person who is caring for her.
So it is time for a nursing home. My mom points her finger at us regularly threatening us if we put her in a home. We are told we cannot do it if mom refuses. We are told that we must have her declared incompetent if she is not willing to go on her own. Can someone advise?
Three doctors have told her she cannot live alone.
Whoever is caring for her in her home, mom screams at them to get out. "Leave me alone," she always says. She demands we leave her home alone, and we can't, and she demands we cannot put her in a nursing home. What happens to people that do not have a family?
Any advice? Don't bother shaming me for not wanting to suffer anymore. Three years have taken decades off of our lives...there is no pill to cure her hatred.
Carol
The interesting thing, I find, on this site, is that those of us who've have fairly normal family relationships don't find it hard to place our parents when it's obvious that they need care. It's just the normal progression of things when your parent has dementia. It seems that it's when there is overwhelming guilt and perceived obligation to give up one's life, sanity and health to fulfill an obligation that doesn't exist. You owe it to your parents to get them what they need, not what they think they want.
For you own peace of mind, time for your Mom to return to the nursing home where the facility has 3 separate shifts, each 8 hours, and that person goes home to a quiet environment and is able to start fresh for their next shift.
Mom had a severe urinary tract infection a month or so ago and she was hospitalized for an afternoon for observation. We asked for help then, but the doctor said there was no reason to keep her, gave her antibiotics, and sent her home.
And, something else I did not mention...because she is diagnosed with dementia, she is immediately placed in wards of nursing homes with others who cannot communicate or even feed themselves. She is very capable of conversation. She needs to make a friend with someone who can share her pain. There are no in-between places for people like my mom (in my area).
It is pretty lonely during these times--for everyone.
Dear Carol: Thank you for your reply.
I feel better already but mom is taking a nap so that helps.
It's true others are dealing with the same problem but at some time they can no longer cope just as you can't and there is no shame in making a decision that is for the greater good of all. it is the disease that is driving the hateful behaviour. If she did not always hate you she doesn't now. Her brain is messed up as you know and so are her emotions too so she uses inappropriate ones. it is clear she can not be home either alone or in your care so there is no other alternative whether she likes it or not. do not tell her what you are going to do and do not visit for at least two weeks and after that limit your visits and leave when she becomes inappropriate. Family does need to visit and attend care planning meetings so you can advocate for her. Do not expect the hospital staff and social workers to be nice to you for as they will put it "abandoning" your mother. they may yell and threaten but they can't put her on the street or call an ambulance to bring her home. If they do that lock the door and refuse to answer. Tell the hospital staff if they threaten that you will call the police and acuse them of elder abuse and tell the State medical board what they did. it won't be easy to be this fiem and it will help if you can have a friend either stay with you or go to their house. hope this all works out for you keep in touch however you handle this it will be information for others that find themselves at the end of their rope in future. Blessings
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Then there is the fact that I wasn't blessed with children... so who is going to drive ME to all the doctor appointments, get MY groceries, etc. I had to scrimp and save, go without for decades to have enough money to buy into a nice retirement facility. I still drive an 18 year old vehicle, which I love because it has saved me so much money :)
Get a lawyer. There are MANY OPTIONS that do not include NURSING HOMES. Yes, even for your mom. Even if you don't have money. Whatever. Once again, there are many options (and I didn't know this) that do not include nursing home care. If you look back at these boards, I did not know the difference between Assisted Living, Memory Care, etc. I do now. And I'm sorry I did not get a lawyer way back!
If you don't get the lawyer, you are going to find yourself spending more money than the lawyer fee.
NOTHING a doctor has told me has ever been true re the law. NOTHING. They do NOT know. They have so many patients, it's not even funny anymore. It's almost like, "Next!"....
When they have dementia and their thinking is very damaged, it's not as if they are trying to drive you crazy. They may make demands for things, but they are mentally damaged....it doesn't mean we have to cater to it. I know my loved one gets plenty of good food at her Memory Care facility, so I would not agree to bring her food from the outside. This is something she is not able to understand, so I have to make that call for her benefit.
My loved one ignored her health for years too. She refused to take her medication, no matter how many times I begged. She refused to see a doctor, even though she needed to desperately, but now her mind is not all there. She has no idea she ever had diabetes or high blood pressure. She doesn't even know her own date of birth. There were times when she was beligerantt, but those days were a phase, IMO and she no longer has the will or energy for that that kind of resistance. Now, she's quite docile and not in touch with reality. The only thing I can feel for her now is pity and I do hope she's not suffering.
sunnygirl - unless you have been brought up by a narcissist you will not understand how they still push buttons. Many of us here still struggle with that. I think many of us suffer PTSD from childhood experiences which essentially were emotional abuse. Being brought up by a mentally ill person leaves its mark, Though we can learn to deal with them and ourselves better, the past scars remain, You can't compare it to an elderly parent developing dementia. The narcissist has been making unreasonable demands since childhood, and has "imprinted" certain expectations on their children from birth. I am sorry your mother did not care for herself, but glad she as good care now..
I will add my voice to the many who have said out loud, or just 'thought' about wishing for the peaceful death of their parent. It's normal. For those who have said it, know that you've helped others, who have not come to terms with it.
Yes, it is difficult to acknowledge (even to yourself) that you hope for an END to the struggle, both for the suffering parent whose quality-of-life has diminished, as well as for yourself, so you can go on with your life. We all feel guilty the first time we have that thought. I will say again "It's normal" to want suffering to end.
This feeling is further complicated for people whose upbringing has been hurtful and unsupportive. It can feel like there is some 'payback' at play, when the not-so-loving and wonderful parent, who has seemingly brought their physical ailments (and their loss of some of their children) on themselves. It's logical when you see this happen to a person who has abused their own body for years, and refuses to 'help' themselves now. Maybe THEY want to be done with their own life. Maybe THEY are also sick and tired of being alive, and have regrets. Every situation is unique in it's origins, but the FEELINGS about it are quite universal. There is no shame about looking into a nursing home. The caregiver is the one who ultimately has to make the decision, which will provide care for the elder AND allow the caregiver their life back. And their sanity. Bless You!
I used to think death would be better until I watched 'Fade To Blank' which is on this Aging Care Website. I've looked at my mother and others in a different way.
I've seen how people in the nursing home portion of my mom's rehab center treat those with dementia/Alzheimer's and I have a different prospective. I believe advanced Alzheimer's should be treated as a serious end of life issue and Hospice should be able to take people in thus weaning them off drugs that are keeping their bodies alive when their mind is no longer working. And there are so many advances being made with MRI, testing, that tells professionals and their patient's families with much certainty just how advanced the illness has become.
There are many excellent books out there now regarding end of life issues, different methods be tried in nursing homes, assisted living, etc. I think now the main issue is how to wade through the bureaucracy involved with all the medical issues and ways we are treating our older people in today's more enlightened ways.