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While I love my mother, I have spent a lifetime dealing with the extreme guilt she has rested upon me. So it makes sense, that I have this unbearable guilt being her only caregiver. I actually make myself physically sick if I am not spending time with her. I realize that this is my problem and I need to come to terms with it, but I just don't know how to fix it. Yes, I have seen many therapists over many years regarding this issue. It helps for awhile, but then the guilt feelings kick right in and and I am back to square one. Has anyone felt this guilt associated with taking care of their elderly mother with moderate dementia?

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I think that love/guilt/duty tend to get intertwined. I also think you're not to the point where you've *arrived* at the understanding that there's only so much you can do. It's not necessarily something that you need to "fix" either.
Feelings and the conditioning of those feelings are something you need to work through before "coming to terms with it". You'll make it there. I think it's difficult watching a loved one's life dwindle down little by little.

I had a good example of someone whom I personally know, explain to me what they went through in helping a family friend through aging, and then out of this life. It took a HUGE toll on her and to this day, her life (even though that part is over with) is still not her own. I took a huge lesson from her experience. That particular example of what was shared with me is something that I now view as a gift. I use it as to what I cannot and will not do in my situation, and I'm handling my parent in a much different way than most because of what my friend went through.
Her story completely terrified me.

There's a difference between being a caregiver and becoming a rescuer. Being a caregiver means that you must know your limits and when to ask for assistance. Being a rescuer means you think you have to do it all to "save" others from their pain. My friend is addicted to "rescuing" others. I love her for her gallant efforts, but admittingly, I keep a distance or she takes over. For me, I got this (so far).

It takes time to separate caregiving (in my opinion) from the rollercoaster of rescuing. You must realize the you're not your mother's savior. Rather, you're doing everything you can to remain present in her life while giving her some quality of life.
To that though, you MUST take time for yourself and have a separate existence from all of it - or you will lose yourself in this process.
I truly hope that you can get through this. Guilt and the rumination of it can eat away at your immune system and your mind.

Take care.~
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I think it was John Bradshaw who explained that guilt is when your expectations of yourself conflict with the behavior. You have to either change your expectations or the behavior so they align.

When I took care of and advocated for my mother (5+ years, every day, at the NH), I didn't experience guilt. It was a wearing experience, but I did it because I cared for my mother. And fortunately she never made me feel guilty when I left (typically at 9 PM). I guess my expectation of myself was aligned with my behavior. Other people (family members, acquaintances, neighbors, staff) were bothered or perplexed by it (did it make them feel guilty or inadequate?). But I was compelled to be there.

I guess what I am trying to say is that there is nothing wrong with being there every day, unless YOU don't want to be there. If you don't, then you will need to work on changing your expectation of yourself. It will take work. Maybe you can start by being there less time on some days.
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Hi again! I read your post, particularly “My ability to take care of all of her needs was paralyzing me”. It’s true – if you give up any care for yourself and dedicate yourself totally to M, you probably CAN meet all her needs. For a time!!! But clearly the cost is to yourself and meeting your own needs. When ‘time is up’, you are going to break down. Then you may be unable to meet ANY of her needs.

What you need to do is to work out a balance. Work out what are your mother’s actual ‘needs’, as opposed to ‘wants’. Her 'needs' are being met largely through facilities at the moment. Her ‘wants’ should be balanced with your own ‘wants’ – hers don’t have priority, it’s a balance. And some of your own ‘wants’ are actually your own ‘needs’ – to have your own life and your own separate interests.

You probably don’t want to walk away completely from your mother. But you have to set yourself free from your own beliefs, or her requests, or a facility’s expectations, that you will do every single thing that she might like. Be free!
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hlwynn,
Thank you so much for your update, and for the good news that you are hearing us, and realizing that you didn't cause this suffering for your mother and have no reason to feel any guilt over it. Just grief, which life does visit upon us all.
We so appreciate hearing from you because so few OPs return to let us know if anything we say made a difference. I am so glad to hear you got help on the forum and are hanging in there, and still reading.
Do work on answering our OPs once in a while. You have an experience that makes you somewhat an EXPERT yourself. Your own journey can so help others.
Happy Season to you, as well. Take care of yourself and again, good to hear from you.
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I want to thank each and every one of you for all of your very thoughtful and kind answers to my question. My mother has been in the hospital and rehab lately. She had a mini heart attack and stroke while she was in the hospital. Her dementia has gotten much worse.
I think I am doing much better with the guilt. I was getting very close to having a "break" if I didn't do something. My ability to take care of all of her needs was paralyzing me. It had just become too overwhelming and I just couldn't do it anymore.
I think I am in a better place today and I thank all of you because I do listen to what you say and IT HAS MADE A DIFFERENCE in my life and for that, I am so grateful.
I hope you all have a wonderful holiday season!!
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Hlwynn, it would be good if you could be clear with yourself about what outcome you actually want. Do you want to stop visiting your mother so frequently? Do you want to put more things into your life than concerns for your mother? Do you want to stop the ‘guilt’ feelings? Or is there nothing in your life to replace thinking and talking about this?

If you have “seen many therapists over many years regarding this issue” and it hasn’t helped, then either none of the therapists were competent, or else therapy is not the answer. It might help if you stopped thinking and talking about this, and focussed on actions.

Your mother already has adequate care, so you have no genuine worries about her. She will be fine, probably better if she isn’t always waiting for you and makes more effort to fit in with the activities at her AL. If visiting her stops being the focus of your life, you need to fill in the gaps so that the guilt thoughts don’t take over the time you free up. Can you go away for a holiday that will mean that you talk to other people about their lives? Can you take up some volunteer work that will occupy you and your mind for a substantial amount of time?

A therapist with a magic wand isn’t going to solve this. You have to do something to help yourself.
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Yes.. isn’t that fun?
One of the things that helped was to make it more fun. So much easier if you have someone to go with you.
You don’t have to make it a whole day..if that is your routine.,
tell mom.. oops I’m so sorry mom, I cannot stay too long today, I have frozen foods in the car., I saw these frozen treats and thought we could eat one together.. I was told they are yummy..
by this time in life, LET THEM EAT CAKE or WHATEVER makes them happy..
bring her a snack, play music, dance.
If she cannot walk, wheel her into the activities room, get her signed up for an activity.. where in the world is this city? And find out the geographical things ..
play music..

most importantly play the alarm on your watch or cell phone..
mom, I have to go now, I’m taking a course at the library… or cycling class at the gym..

mom, have you heard about pickle ball? It’s the new @tennis@ and I’m taking a class every Monday’s Wednesday and fridays.
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FYI - the OP asked this back in August and I can't see any sign they've been on the forum since then.
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Your time would be better spent with a therapist and you have to be proactive in your own therapy and work to get over the feelings of tremendous guilt and blame that you impose on yourself.

Can I ask a question? Was your mother abusive to you (physically, verbally, emotionally, psychologically) when you were growing up?
I ask this because many people who were abused have been so conditioned by parents thay they believe they are worthless and have no value other than being a family servant and eventually a caregiver to their abusers when they get old.

I was conditioned in such a way. To punish myself with guilt and remorse even when something was not my fault in any way. I went to therapy and when I took therapy seriously, I got over that bs.

You are not responsible for your mother getting old and needy. You're not so lost in the FOG (Fear, Obligation, Guilt) that you weren't able to see your mother to an AL facility.

Please try something for one month. Only visit your mother once a week and only take two calls a week from her.

I know this will be hard, but your mother needs to acclimate to life in AL and you have to let her adjust by leaving her alone.
If you're there every day and on the phone with her when you aren't, she will never accept being there if you won't give her some space.

Give yourself some space too. Find a hobby, get a job, do some volunteer work, go on a vacation, take a class, make a regular coffee or drinks date with friends, take a lover in the afternoons like the French do. Anything that you can direct some of your attention to that isn't your mother.
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No, guilt has no place in my life, it is a total waste of my life. It is a a self-imposed emotion that will keep you stuck forever, when she is gone you will continue to guilt yourself all over again, it is a vicious cycle that you need to break.

Guilt is driven by codependency and fear. Maybe read a few books about codependency.

Don't you have anything else that you can do except run there everyday? Work? Develop a hobby or?

You may be one of these people who need therapy all their lives, if so, acknowledge it and keep going.

Your mother has raised you to be weak and codependent on her, only you can break this cycle, it is hard work but it can be done.

You are living in a self imposed prison with invisible bars, time to unlock the cell and get mentally healthy...for you.

I wish you the very best.
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What would happen of you visited 2 days a week? Say Sundays & Wednesdays.. plus telephoning Tuesdays & Saturdays (ending with "See you tomorrow")
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When we moved my inlaws into a nursing home in our state. I asked the nursing home staff how often I should visit. They said twice a week, I went twice a week and occasionally 3 times a week when there was a reason.
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Yes! Going thru same with my 85 yr old father. I'm also in therapy. I started going twice a week instead of everyday recently. Learning to deal with the guilt by telling myself I'm doing the best job I can. My mental health made me have to quit going daily. U gotta take care of urself too.🙏
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Guilt implies RESPONSIBILITY.
One cannot be guilty of something they did not cause.

Can you tell me in what way you have CAUSED all of the suffering and woe that your Mom is now going through?

It is very important to get the words that we hammer into our own heads right. The word I believe you need starts with G but is spelled GRIEF. You are suffering grief because your Mom is not thriving. What kind of person would you be if you did NOT feel grief?

But Hlywnn, what kind of person would you be if you did not feel grief over the pain of someone you love?

We react in habitual manners. Our early childhood training is very difficult to ignore, even when we have a basic logical understanding of it. You may need professional help. Get a GOOD one to help you, not just a listening ear who eats money, but one who will shake up your world and help you travel a whole new path into a whole new world where you CAN, and you WILL thrive! I wish the very very best for you. This will be the hardest thing you have EVER done, this change. And the best!
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Hlwynn, welcome!

This sounds like a serious issue that you've attempted to solve through therapy, to no avail.

Are you currently under a doctor's care?

In what way do you become physically ill if you don't visit mom?

Does your mom participate in activities at her c AL? Is your presence preventing her from doing that?
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Did your mother spend every day of your childhood with you? Did you ever have a sitter so she could go out?

I let my mother dictate how I’d spend every vacation day, etc, and she thought she was entitled to me daily even once I married and had kids. I struggled to find a balance that would keep her happy. Now I resent how much time I gave her, at the expense of my children.

Sometimes we’re groomed to think we owe our parents everything, as if we’re to worship them for giving us life. Who wouldn’t want their children to be happy, venture forth into the world, find love, have adventures and live fully?

If she has always had to guilt you into doing things, then you must have already been resisting or she knew her demands were unreasonable. Sounds like guilt is the only tool in her box to manipulate you. Boundaries aren’t wrong. Living your own life isn’t wrong.

Try one month of every other day. Maybe she’ll become involved with others or programs in AL. Your life and feelings have value too.
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Who set the rule you must visit Mother everyday?
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My mother lingered with dementia for 5 years. She didn’t know me or anyone else for 3 of those years. I worked to run the family business, which paid for her care. I cleaned up the business mess left by dad and dealt with their business legal issues. I managed the family trust and cleaned out their 70 year collection of junk in multiple places. I did everything and more for years to the detriment of my life. Taking care of my parents took more than 5 years and fixing the mess they left took 5 more. I felt no guilt. At all.

What I felt was anger, dismay, sorrow and exhaustion. All normal considering what their end-of-life put me through.

I suggest that you reach down deep inside to find your anger. Once you do, you may not feel guilt at all.

Please find a life for yourself. There’s no reason to be with your mom so much. You deserve better.
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Guilt is self imposed. I was my Moms only Caregiver. If she could guilt any of her kids, it was me. As I got older, had a family and a job she was not able to guilt me because I had priorities, my family. I have two brothers that did nothing. One lived 7 hrs away the other 30 min. So, I was left with all the decisions. Right or wrong I do not let myself feel guilty. I lost patience, I don't let myself feel guilty. I did it all.

Your Mom is safe and cared for. Those suffering from Dementia have no perception of time. You could be going everyday and ur Mom may say "have not seen u in a week". My Mom was visiting my Dads sister, who suffered from Dementia in an AL. As Mom walked out my Aunts Sister was coming in. Sister said to her sister "I see Peggy was here". My Aunt with ALZ says "Peggy has not been here". So is Mom really aware of your comings and goings? Their days just go into each other.

You have done enough. Its now time for u to find yourself. Find a Church you can get involved with. If you like dogs and cats, volunteer at a local shelter. They can always use walkers and foster parents. There must be things you used to think, if I didn't care for Mom I would do...Take some classes at your Community College. Libraries have all kinds of activities other than books. Mine has bus trips. I live in NJ. We have bus trips to Atlantic City.

You should have no guilt. You have kept Mom save, sheltered, fed and clothed. Its time for you.
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