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I haven’t stopped to process how my sister’s suicide put me in instant caregiver role 5 years ago. I used to be organized, deliberate, more ‘together’, and more professional ( teacher). Now I just cry out of nowhere and I’m just sick of being the expected answer to everything for my mother. Organized? Hah. Stress eat? Medicated? Completely. There are times I just wish she would pass away so I could regain my own sanity. She was not a good mother in many ways, but am I alone in these dark thoughts? I am on my own family-wise. It’s all on me. Am I a horrible person for my thoughts?

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I am caring for my elderly dad who has vascular parkinsonism. At first things were not too bad but then his walking stopped, swallowing problems has to have thickener & soft foods , incontinence & now he is bed bound.
My breaking point was him wetting himself. He had a pee bottle & pullup pants but he was waking me up constantly fully wet & I became exhausted. I would get stroppy & irritated where I was beginning to hate myself for being like this towards my dad. I wished it would all stop, come to an end but to have that happen would mean death. So I would feel guilt cry & push myself to carry on as everyday. Finally I phoned the social worker who came out & offered respite for a week. Dad goes to a home. On hearing this I finally openly sobbed & said no I don't want him in a home. So Social worker arranged for carers at night & respite with sitters. I have the odd moment feeling overwhelmed but I'm getting more sleep & breaks. I'm finally letting go of doing it all myself. I feel sad for my dad unable to do stuff like he used to but I try to make his life bearable. He has TV /radio 24/7, lots of soft treats, clean clothes& bedding . Hes warm & cosy & safe. He can hear, see & talk so hes still lucky. I say this because my mum had Lewybodies dementia & she couldn't talk or do anything. Her quality of life was just lying in bed squirming . That's when I prayed for God to take her. She finally passed in a home it was peaceful. I felt relief but missed just sitting with her even though watching her suffer alive was torture. So I don't wish my dad to die I just wish the difficult things helping dad would end. But by getting help with difficult tasks & respite to take time out then coping with your parents illness will make things easier.
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bundleofjoy Feb 2022
huge, huge hugs to you, for allll the love and care you gave/give.
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I just wanted to respond to MAP2013, with all due respect, I think most of us that are family caregivers are forced into it. I had no choice. I have all of the symptoms that most of the responses on here have, darkness, doomed and gloom, wanting to become an alcoholic, no hope for the future.. You either have to be very rich or very poor to get paid care givers or other resources. My brother and I worked full time jobs besides. We do not have extra time to seek out help, except from friends and cousins that live out of town. I think a lot of us that are posting are not professional care givers, and it seems like most of us were forced into, this is definitely something that I would not choose as a career. So yes, being a forced care giver is horrible and I hate all of it. Most of us are not trained professionally , and we are forced into using medical equipment and other medical things such as wound care in which , I have absolutely no medical training whatsoever in. So I am relived that everyone else is expressing the way I feel and mentioning God. I feel the same way. All of the guilt and worrying about being a horrible person, My heart goes out to all of you. And to the professional care givers THANK YOU for what you do, is there any advice for those of us that are not in the medical field or forced into this?
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PeggySue2020 Nov 2021
I think we all have to quit being gaslighted by our elders, especially as we are becoming elders ourselves.

We, many of us, are dealing with parents who in the generation before would have passed at 60-80 with their conditions. Parents who did put their elders in a care home environment. Yet we're supposed to sit here pretending that it's "oh more family dinners" while what we are dealing with are increasingly demanding, screechy, vindictive, extremely old people who gaslight their whole family into pretending that there will be "memories."

My parents have already said they will go to a home if it gets to that level. My sister moved almost next door to them, and if it gets to the level where they need more care, then she and they will involve an agency and after that a AL/MC/SNF, whatever the care need is. My parents have never denied this.

They are the exception. Did you see that thread about the 18-yo and her minor sister being forced into that, with posters on this board quoting Bible verses at her? F that. Strongly suspect that this 18-yo won't treat her own children that way.

The seniors of today, especially the older ones, are the most privileged people ever when it comes to DEMANDING that their children and even grandchildren take over with their every WANT. They didn't have to do that, and I've not heard one caregiver say they would subject their children to this passive-aggressive screechy declining hell.

Hell no.
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I am in almost exactly the same situation as you for the same amount of time with no family to help. I now hate my mother and wish daily for her death to release me from this hell. She was a s***** mother except for my early years and is now impossible to deal with. Makes my life a nightmare every day with her paranoia, lies and defiant attitude. She puts my life and that of my dog (my only companion) in peril constantly. I have no help for you, just know you are not alone. I wish both of us the strength to deal with this and finally have some joy in our last years. X
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My former therapist said it best "You are not your thoughts" I am in the same situation, my mother is 98 and dementia is creeping up on her steadily. My brother and sister won't have anything to do with her at all, not even a phone call on her birthday or Mother's Day. My mom was never on my side when I was growing up, she always preferred my sister who was a beauty queen and married a very very rich man, while I am homely and fat. I am the one here taking care of her now, but I feel deep resentment towards my sister and brother and anger towards my mom because of how I grew up. I think it's one thing to take care of a supportive mom and a totally different thing to have to take care of someone who was never there for you.

All in all, I feel people like us need to be celebrated, because we at least have enough caring in us to take care of someone who wasn't necessarily there for us. I feel what you are experiencing is perfectly normal. It always seems there is no end in sight.
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'I’m just sick of being the expected answer to everything for my mother. There are times I just wish she would pass away so I could regain my own sanity. She was not a good mother in many ways, but am I alone in these dark thoughts? Am I a horrible person for my thoughts?'

If you are, so am I, because my whole life has taken a turn for the worse since my narcissistic mother moved into so-called AL a few minutes from us and handed responsibility for her life to us. My marriage has suffered (my husband has become her replacement husband) and I have permanent pain from muscle tension. I too am on medication. Now my children are needing help with their babies, and I feel torn, as I don't have the energy for them all.

Kas15's words are very helpful - I have had counselling for a year to try to cope better with my own reactions to my mum, but I am sure I will never be at peace while she is alive, sadly. We just have to decide what we really can and can't do and try to be brave, in my case, about facing the self-centred storms that may arise.

It's good to read that many don't feel this way, but we are certainly *not* the only ones who do, and it does not make us bad people, just honest. I hope things look up for you soon.
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Chalktalker Nov 2021
So difficult. My husband is only 67 and I’m doing this over 5 years post stroke. I’m so exhausted. Trying to sell house now so I can afford to live on my own. I never expected it to go on this long. I feel terrible for thinking it but I desperately need a life again.
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Scully,

I hope this all works out for you and your heavy burden of caregiving is lifted off of your shoulders.
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My heart goes out to you.

But, I must strongly disagree with those who say every caregiver feels this at one point or other. That is not true and, in my personal and professional opinion, this attitude/belief/experience should not be normalized as the expected experience of a caregiver.

One way or another, caregiving is a choice. When a caregiver accepts this role, it is their duty to ensure their loved one is safe, secure, and as healthy as possible. It is also the duty of the caregiver to care for themselves so that they do not sit around wishing their loved one is dead - that is simply not fulfilling the responsibility of safe, secure, and as healthy as possible.

It is critical that you find support:
A group to give you tips, tricks, and resources. In person or online meetings are available to meet you where you are with a variety of options.

An outlet for your mental and physical health. Exercise and meditation are the minimum of wellness care and you can practice them in your home with a computer, or find locations outside the home. Move up from there as needed.

Respite care - even short-term respite - for you to step away from your loved one seems to be in order at this point. You need to think outside the box to ask for help - those resources you find in a group will help, and the investment in your physical and emotional health will help you make the most of the respite care you can put together.

Finally, it is OK to stop your role as a caregiver all together. That can be done more easily than most people think - it is often more a matter of not being willing to invest the money or the time to find the options.


If you feel trapped, find a way to change your situation.
I worry how you will handle your mother's death when it does come given the emotional baggage you are now carrying.

Death will not be a panacea.
Start working to improve your mental health today, and you will be better off in the long run for starting rather than avoiding it.
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weestr Jul 2021
I’m sorry, but this response feels very tone deaf and makes me think you have not had to care for a parent. My sister is the primary caregiver and I play the support since I live further away. Neither of us chose this. Neither of us can either just give it up. If neither of us cared for our mom, she would die because she cannot live by herself. We would love to put her in assisted living but my parents did not plan for when they got older and neither my sister or I have the funds to do that. As for the original post, you should not feel guilty. You are not alone. Most of us have been there.
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I am in the same boat. You are not alone. You are not a horrible person.
There are days when I look in the mirror and I don't even recognize the person staring back at me. There are also days when I am so angry and so resentful I am immobilized. And, don't even get me started on the family members that don't do a thing to help. Nothing at all. They are the people who should feel horrible and they are the people who should be ashamed of themselves.

There are no "right" answers for you except don't give up. Reach out as much as possible. Get some rest. Try and Let Go as much as you can. I have started shifting my thinking a little and the smallest change has made a huge difference for me. For instance, when I am asked to get something rather than jump up no matter what I'm doing I say ok, wait I'll get it in a minute. Just something that small has helped my stress level. Try to start making tiny steps to help yourself.

A few times a day stop, take 10 deep breathes. It helps a lot too.
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I am in a different boat. My mother is 88 and still lives on her own. She can do most things for herself. I am only her transportation and I make and take her to all her doctors appointments and with Covid have been doing the marketing for her. She is a wonderful person and has always been a wonderful mother, but I am 67 years old… Not old, but no spring chicken and I have some issues with health and so does my husband. Here’s the thing. In the past there was only usually one senior generation alive at a time. My mother’s parents passed when she was in her 40s. Now we have the boomers and the parents of the boomers alive at the same time. It makes it very difficult for people who are already entering their senior years to have to be responsible for people who are even more senior. My mother never had to deal with that. I love my mother dearly and will be in a zillion pieces when she is gone, but being a senior responsible for a senior is difficult. I worry every day about when the next shoe will drop and she will not be able to live on her own. It’s the worry for me not as much the actual caregiving… Just the never ending worry about what comes next.
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MaryRich2020 Jul 2021
Your answer hit home with me. I am 67 and Mom is 86, lives in senior independent living but I drive her to all her doctor’s appointments - which increase all the time!! My worry is that she will run out of money soon and then what?? I have siblings but the live over 2,000 miles away and don’t have money to help support her. It’s not easy and I feel for all the caregivers, especially those that have their parents living with them!
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No, in my case it is my mother-in-law. My husband can only be around his mother for about an hour a week. I am there all weekend with her to save money on care and sometimes I want to throw her thru the window. You are not alone.
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RedCrush Jun 2021
I just am ready to go nuclear on your husband… metaphorically speaking. This is such a huge imposition on you that I don’t even know where to begin. He doesn’t want to be near her, but it’s okay for you to spend your entire weekend, weekend after weekend, caring for her?

!?!?!?!?!?!?

I have so much sympathy for you, but am also quite angry on your behalf and am wondering if you would like to enforce change in this situation. Just envision the outcome you want and then let nothing stop you until you achieve it. This is your life we’re taking about! It’s worth the effort.
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Are you a horrible person for your thoughts?

If you are, then everyone who takes the role of caregiver for a loved one is a horrible person. The person we take care of is not our parent or our spouse, it is someone we never met who never did anything for us, but we are obligated to take their abuse.

"There are times I just wish she would pass away so I could regain my own sanity." I think we have all had these thoughts or desires. I think you are perfectly normal. I also believe you and everyone else who takes on the caregiving role deserve a hearty round of applause from other family members. Well done!

My wife's first anniversary in long term care is next week. Before she went into the facility, I was constantly reminded that the only way the situation was going to change was if one of us died. After she called the police on me I realized the situation was beyond my control.

When I meet others in our situation, I remind them that the most valuable asset the sick person has is their caregiver. You need to take care of that asset. Without you, the sick person is even worse off.

Oh, one more thing, they are not lashing out at you per se. They are lashing out at whoever is taking care of them. They are mad at the disease, but they are taking it out on you.
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I wish my mother dies every day after nearly 6 years of looking after her with no family or friends to help. Maybe I will burn in hell but I feel like I am now. You are not alone in your thoughts.
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No. You are not alone. I feel like not being on the planet if this is the rest if my life...like it will never end and if it does I fear I will be so old and screwed up that it wasn't worth living anyway.
Hugs
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bundleofjoy Aug 2021
dear angie,

i really hope you don’t feel this way. what i mean is, i hope you find a good solution!! hug!!

love/care for your LO.
love/care for yourself too.

hug!!!
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I’ve only been in serious caregiving for a year and mild caregiving for 2 before that. I am amazed at those that have done this for years and not gone crazy themselves. I think 2 factors must help some. You must have a good loving/liking relationship for the one you are caring for and the person receiving the care must have at least had that loving/liking relationship before or during the caregiving.
I love my dad but have strived to not be like him since I was a child. He was abusive, alcoholic, negative, mostly absent, depressed, living in regret, living in the past, and tried to manipulate others into loving him. Also after my parents divorce he became a hermit and lived alone with very few relationships outside of immediate family. His closest friends in the last 15 years has been doctors and pharmacists. So for me not having the like factor and add onto it the strain on my personal life, marriage, career, finances, social life, and mental health; I really want the dementia to progress faster and force residential care and hopefully a short time until death. He consistently says he will go shoot himself in the head if I try to put him in a nursing home. But I know I can’t continue to care for him in my home without loosing my wife, job, and house.
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NeedHelpWithMom Jun 2021
I understand your emotions behind your words. Your dad is emotionally blackmailing you. So sad.

I know a woman that has told me one too many times, that if her children place her in a home that she will kill herself. I started off with showing her compassion, then explained that facilities are not like they were in the past, and so on. She kept on with her ugly threats and I bluntly told her not to ever tell me again about ending her life if her children place her in a home, because all of her kids work full time, and lead busy lives, and will not quit their jobs to look after her 24/7 if the time comes where she needs full time care.

I hope that your dad isn’t telling you this over and over. That would work on m last nerve. You don’t deserve that. I would let him know that you will not listen to it any longer. Then walk away.

Please speak with a social worker to help guide you through this. Placement in a facility would be the best possible situation for each of you. You can also call Council on Aging in your area. Good luck!

I am so very sorry you have had to endure this stressful situation. Wishing you peace as you navigate your way through this stressful time. Take care.
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I am so sorry to hear of your situation.
DO NOT FEEL GUILTY! My mother is horrible and I dread seeing her. She is verbally abusive and occasionally physically. I love her and do not want her to suffer. But I just can't listen to her tell me that she is going to die, come back and make my life a living hell, to get even with me for "Ruining her life." Or that I'm fat, or need a face lift before I lose my husband, or my rear end is a wide as a barn.

She is in a nice Board and Care with her own room. I make all her doctor appointments, take her to them, get her medications to the Board and care, pay all her bills, cook special treats for her, buy her sushi, etc.
I am not an evil person, I'm just tired, hurt and feel unappreciated.

So, no guilt! I'm a saint and so are you.

God Bless you, hang in there.
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agingmother4343 Jul 2021
We walk in the same shoes

bless your heart
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I feel very much the same way. I also feel incredibly guilty and sad when I am feeling this way. I am 64 she is 85. Been with my husband and I for over 4 years now. Getting sicker slowly. I do not wish her dead, I just am not happy with the way my life is going. We are empty nesters my husband still works. I guess a big part of me is jealous because she never had to do what I am doing. I pray a lot it helps.
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NeedHelpWithMom Jun 2021
It’s true. Many of our parents didn’t do any caregiving for their parents. My mom didn’t even have a mother in law! She died before mom married daddy. Her father in law died when my oldest brother was two years old. Both of my grandparents on daddy’s side were dead before I was born. My grandpa on mom’s side died when I was in my late teens and grandma died when I was in my mid twenties. Grandma knew my husband but died before my children were born. I was 49 when my mom moved in with us. She lived with us for 15 years.
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Just remember she could be gone at the drop of a hat. I too was in the same predicament you are with a mother with dementia and was taking 4 Saffron capsules per day just to cope with her disease. She passed 2 months ago and I told her everyday how precious she was to me because I knew that someday soon she would be gone out of my life forever. I know it's hard but you can do it. You will have strength you didn't know you had. It's a whole different ballpark when she's gone. I miss her so much and just wish I could hold her hand one more time. Hang in there dear.
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No, you are not alone…prayer really, really helps.
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Imho, you are NOT a horrible person, but a human being, who needs respite through any means possible, e.g. Visiting Angels, et al.
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I feel the same way every single time I have to interact with my mother which is daily. I won't be free until she's gone.
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NeedHelpWithMom Jun 2021
I remember feeling like that. Very accurate description because it truly doesn’t end until death occurs or

It doesn’t mean that a parent isn’t loved. We can love someone with all our hearts but still be completely exhausted from caregiving.

Wishing you peace as you navigate your way through this. My mom recently died in a hospice house. I cared for my mom for 15 years in my home. It was the toughest job that I ever had.
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I’m glad I’m not the only one wanting it to end
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You are not a horrible person, it’s too much for you to cary on your own. It’s not that you want anything bad to happen to her it’s just that you need air to breathe and cope, it’s human and it’s normal. You have to get help with responsibilities for her, for her sake and firstly your own.
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I think you are experiencing these feelings because you need to find someone else to care for her. Please don't end your life. Aging parents and caregiving can be so difficult but life will get better for you. Please do something nice for yourself. Also, know that there is a 24 hour hotline you can call in the US even if you are not planning, just experiencing thoughts: The National Suicide Prevention Lifeline (800) 273-8255.
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There are a whole lot of us feeling and thinking just as you do. It’s been almost 8 yrs for me caring for my mom 24/7/365, after dad died. For 8 LONG yrs!!! She has dementia, Wants to be treated like the princess my dad made her. Always wants her way, no matter the risk. She will be 96 in November. No reasoning skills, bad knee, 1 already replaced. Can not hear unless you are screaming at her. Can not see or doesn’t recognize things. Wants 3 home cooked meals everyday. She thinks that she has a little memory problem, but otherwise she thinks there is nothing wrong with her😳. Every morning I have horrible thoughts, hmmmm maybe she died in her sleep?? When I see that she didn’t, dread starts creeping in my brain. By the end of the day I am so exhausted I can’t sleep. Then alone in my room, the guilt starts. I should have been more patient. I should understand how frustrating it is for her not to be able to do anything.
It is a vicious circle.
I love my mother. And will miss her terribly when she is gone. But I am so tired.
I really know how you feel. I have been told many, many times it is normal to feel this way.
Some days are better than others.
I guess I will just keep dreaming that one day I will have my life back.
Good Luck and don’t be so hard on yourself.
She is lucky to have you!
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sp19690 Jun 2021
Sure the mom is lucky to have a daughter willing to practically kill herself to appease and cater to a selfish elder. Too bad the daughter is not lucky to have a mother that would also consider her child's needs too.
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I think you would benefit from speaking with a therapist. It will help you find new ways of coping with the long term stress. Caregiving is a very hard job and takes so much out of you. Are you able to put a little space between the two of you? If she lives on her own this is the easiest thing and will help enormously. Just limiting your contact and being very scheduled about what you do when you are with her is helpful. Depending on her needs, does she have any funds to hire an aide now and then?
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Sones like you ate Overwhelmed and Burnt Out.

You should have a chat with your mom and let her know how you feel and what it's doing to you and that other arrangements will have to be made.

#1 Mom can pay for Caregiving help or a Live In.

#2. Mom can choose a Senior Home to go to.
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You are not alone. I've had the same thoughts. I pray for my mom to go to Heaven, daily.

One thing that helps is my support group. We're allowed to vent without judgment. It's the Alzheimer's Dementia Caregiver's FB Support Group.

Praying for you to have some peace.
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You are def not a horrible person for thinking this at all. My mother turns 88 in July and she is driving me crazy. Her mother lived till 96 and if my mother makes it to 96 I will be crazy. I know I can handle my mother's death but I'm not certain how much longer I can handle her being alive. Do you have enough time at least to visit with a counselor?
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This is overwhelming. I understand. Antidepressants , weight gain, depression, I wanted to switch places with other friends who were dying, was thinking of how to end it myself, loss of the lifestyle we had together. Even now I’m 2 years past his death- I’m still angry, but miss him . At 70 I feel life might as well be over. Alone. Lonely. If you have caregiver support group or find one, I got one thru asking at the nursing home. I’m so sorry for your pains
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Many here including myself have the same feelings. Some mothers did not know how to mother and I like to think they did the best they could.....maybe not. We cannot change the past but there is no need to give up your life now.

Place her somewhere safe, hire help and make sure her needs are met. Caring for her does not mean you have to do it all.

You need to have peace and rest otherwise your health will fail even more.

Do you have someone to help you sort out these feelings and needs of your mother?

I wish you love and peace.
Feel free to share all thoughts with us here.
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