How do I deal with the guilt of not taking care of my mother at home now that her dementia has gotten worse?

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About five years ago i wrote this forum seeking advice on keeping my mother at home. At that time my mother had become very mean and was very hard to get along with, she has always been mean sprited but was more so since being diagnosed Dementia. I ended up placing her in a assisted living facility in the city that she lived which is 75 miles from me and i went there every weekend for the past 4 years. i spent as much time with her as i could on a weekend bases. She did not adjust to being there and cried and begged to go home, but most times that she was taken to her home for visits she did not realize that it was her home. Over the years her condition got worse and i was not satified with the care that she was getting at the facility so i moved her to an assisted living facility 15 minutes from where i live and go there every single day to see her after i get off from work. i also get her ready for bed each night and into bed because she can no longer walk or stand. i am not feeling this over whelving guilt because I did not keep her at home when her mind was better and she could get around, now she hardly speaks,but she does know who I am. She screams for help after lunch everyday for approx two hours. I have taken her to a neurologist and geriatic doctor. Medications has been prescribed but nothing seems to help. I want to help her but I do not know what to do. She seems to be suffering so much and has fear in her eyes. i keep thinking that she would be doing so much if only I kept her home where she wanted to be. She is 82 years old and i am 61 and still employed full time..What should i do at this stage to ease my guilt?.

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You seem to have done all the right things for your mother. Please don't feel guilty that you think she would have been doing so much better if you had kept her at home. She has advancing dementia and it is such a sad disease that takes over the mind; being at home would not have made a difference. My mother in law was living in her own home before coming to live with us; and.even though she said she was happy there, she wasn't - she complained constantly and was lonely and more confused than ever. What I am saying is with this disease, unfortunately, comes a great deal of sadness and uncertainty; no matter where they are living.

Maybe the doctor could try different anti-anxiety medications until you find one that calms her and gives you both some peace. There has got to be something out there to help her. My mother needed different meds and I had to keep after the doctor. Bless you for all you do and there is absolutely no reason to feel guilty. You already go above and beyond. Take care.
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Here is the root of these problems:

Your mother has dementia.

This is not your fault. There is nothing you could do to change this. As much as we work and plan and struggle, the foundamental condition is not within the control of us caregivers. I repeat: Dementia is not our fault!

Maybe your mother cried and begged to go home because you made a huge mistake in placing her. Or maybe (and I think this is more likely) she begged to go home because she had dementia. It is amazing to hear of many demented loved ones begging and insisting to go home WHO ARE IN THEIR HOMES! I believe it, though, because my husband did that. He kept asking when we were going home even though we were home. The reason I think dementia the likely explanation is because when she did go home she didn't even recognize it. Not your fault -- this is the dementia operating.

Here is the inevitable nature of dementia: it gets worse. We caregivers fight against this truth, as we should -- of course we want to keep our loved ones functioning as well as they can as long as they can. But ultimately we cannot control the course of the disease. It gets worse. We can think, "what if I hadn't let them give her that drug" or "what if I had placed her sooner" or "what if I'd kept her home" or "what if I'd changed her diet" -- we can do the what-iffing all day and all night, but we'll never know the answers. All we do know is that dementia gets worse. We do our best to make loving decisions based on what we know and what we suspect and what we hope at the time. We do our best, without any guarantees that we'll get the results we deserve.

But guilt seems to be a fact of caregiving life. It is usually irrational and unearned, and still we feel guilty.

What should you do at this stage to ease your guilt?.I suggest two things.
1. Really accept that the dementia is not your fault. Accept that the dementia is the root of the problems.
2. Learn to live with some guilt. I hope that #1 will reduce it, but it may not be possible to fully remove the guilt. Try to keep it in the background and get on with your life.

Your mother is extremely lucky to have such a caring daughter. You have been trying to do the right things for her for years. Now you are spending your precious leisure time with her. Continue to love her and show her that love. And do the best you can ... that is all any of us can do.
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If there was a pat answer for guilt we wouldn't need this sight... I wonder if you are feeling more powerless than guilt, and trying to find ways to think if YOU had done something different she wouldn't be this way....She would be this way regardless of where she is living... and I agree with 3pinkroses, keep on her Dr. until they find a combo that works to decrease her anxiety.... it may only be a short term solution, but then you keep on them again...
It is so very frustrating for caregivers that none of the meds out there are FOR Alz. Yes they are looking for a cure, but they also need to be trying to find meds that apply to specific behaviours for Alz, and seems anxiety it at the top of the list...Some meds work for some, some of the same meds only make it worse for others.. Yes, it's just a sad crap shoot and a dirty trick for our elders, putting them on this med and that one, until we find the right combo... no telling what we are doing to thier already scrambled brains.... but it's all we have right now, and each other....
Her being at home will not change anything, her being at home when she could still get around would not have altered the course her disease has taken... I am sorry, I have experianced the full spectrum of Alz. behaviours... if it's baffling to us, imagine how they must feel...
The truly sad part of this, you are not alone, thousands upon thousands are experiancing the same thing... sorry none of this is making you feel better, maybe if you used that same energy to understand you made the right choices at the time, and accept you are a wonderful daughter, fighting a disease that has no rules.... I pray you feel better about what a good job you have done so far, instead of questioning what you could have done different.....hugs to you.
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Ginny55, I agree your mother is extremely lucky to have such a thoughtful daughter. I only hope that if and when I am in the AL etc that my daughter will be as thoughtful. However, you are 61 and need to take care of yourself too. I know about the guilt, I have it too. I try not to, but its still there. You ask what should you do to ease the guilt? The best thing is to realize that you are doing the best you can with what you have. You are doing a tremendously good job! Maybe keep trying more and different meds would help. Bless you are an angel. No need to feel guilt.
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Your mother has been blessed to have a daughter like you, and how hard you've worked I can only imagine. But to feel guilty is wrong it sounds to me that you have always done the right thing in your heart, and guilt should only be had, when you do something you know is wrong, but you do it anyway. That's guilt what you have is LOVE!
God bless you
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My mom passed on last June 21 after three 1/2 years of living in various facilities after falling at home, also with vascular dementia and severe physical disability, and I still have a bad case of the "what-ifs." There were times when I could help her and times when anyone BUT me could help her, and times when no one could. The ONLY things I have to offer besides sympathy is that if she consistently has a screaming fit at the same time daily, check on medications and see if one of them that might have a side effect (well, honestly, that would be ANY of them :-) would be at a peak around that time. Or it might be that something she irrationally fears or just dislikes a lot happens in the early afternoon, and she can't verbalize what it is. God bless for all you are doing and trying your best to do for Mom! May you both have a little peace!!
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I see Dementia sufferers and their care givers, in all stages. As a hairdresser I have many clients going through this on both ends. As the hairdresser, I see a decline in mental cognition before many of the family members see it. So when my Mother needed help I realized something needed to be done. At that time I had no idea what to do. I took it one day at a time!!!!
When I notice the decline in customers, now, I pull the family members aside and try to guide them into the awareness(send them to this site).
The first piece of advice I give is... no matter what take care of yourself, because if you "fall apart" this is not good for all involved.
Second piece of advice is don't feel guilty about anything that you have no control, out of you control.
Third is stay away from negativity.
With all that in mind... congratulations to yourself for doing your best and not giving up on your Mom and doing everything you can!!!
YOU ARE A GOOD PERSON...if you weren't you'd be out partying about Mom being in a home and not a care about her condition and I know this because, you wouldn't be here posting about it.
Now about your Mom's condition... What's her diagnosis? Type of dementia? Then search types here on this site and educate yourself. This will help you, help your Mom. Some of her behavior is personality you will never change that and you really don't want to (that's god given and you can't mess with mother nature).
What I mean for example, if Mom loves Ice cream, she always will (at least to a point of recognizing those words). That's how I know when my Mom is mentally stable or not feeling well or on wrong meds. When it comes to dementia personality traits and reactions to others, are signs you may have to read, like another language. You cannot go by what the verbal communication alone. My Mom says I want to go home that translates, to her bed room at NH. That's where it's familiar to her now (I simply asked her where is that and she brought me to her room). Moving things around confuses people with dementia, security and independence is what they are searching for.
Sometimes just talking about the past like it's today helps. I asked my Mom about an Great Aunt I never knew about, because she died at 17. She right away gave me an answer to the question I asked about her. Did you know Aunt Lisa? She was focused on our conversation not the current reality of the NH. She had a regular focused conversation and was happy because she knew the answer. If I ask her what she had eaten for breakfast she either makes up the answer to seem like she knows with confidence or gets upset because she can't remember. I had to figure out what she was saying "is it"... delusion, reality,combo of both, her own reality and why... meds,illness, or reality.
My point in all this is you can only fix what you can. Even though you can't help your feelings. Feeling guilty does not help it... only makes you less useful. You know your Mom probably better than anyone else and better than she knows herself!!!! You may just have to find little hints to make your day and hers. I called my Mom beautiful as soon as I saw her the other day. I said "Hello BEAUTIFUL!" I smiled then she did something she hadn't done in two years. Left the floor to go have ice cream with me!!!! She usually tells me anything to avoid a visit with me. ~I am the bad guy~ because I care. I ask to many questions and she hates that "because thinking about the answer confuses her". It may have been just right time of day, month, or she slept well. Who knows!!! but I accomplished a sweet visit!!!! I tell the nurses her reactions to visits so that they know and reflect this to Dr.'s!!!! Important info. I ask about Med changes if she gets to "out of it". You are in control "in away" and "can" help. If what I am writing is not exactly a solution for your specific situation, it is not meant to be. I am generalizing, no one is the same, dementia is not the same in 2 people. I hope I helped you or someone else. I learn as I go and just hope what I experienced is useful to others. Then I feel a sense of accomplishment, in a way at least. If I had come to this site when I was care giver it would have help me more. So coming here is a great opportunity for you use what you can. The one's going through it all know the real drill. All the prior answers here are experienced and real.
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