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My mother was not perfect but a very good mother. A little rigid and critical but also very nurturing. She took care of me the best she could when I was a child and has been a source of wisdom, help, and cheerleading in my adulthood. We were very different people and do not have a lot of common interests, but love each other all the same.



After my dad passed away in 2015, I called my mom every day for more than 5 years while she was living alone. She was pretty depressed as he was her whole life and never really wanted to build a life without him. She was 76 at the time he died. The calls were often 45 min to an hour long and I started getting depressed and burned out and dreading the calls. I live in Texas, she did too but more than 500 miles away. She would put on a good front with my brother but continually tell me how bad things were. (My brother was originally a sister who transitioned and is 13 years younger.)



Fast forward to end of 2020, I took her to have a surgery for a compression fracture and they found she had multiple myeloma. Shortly after that she had a major slide in her memory/cognitive abilities and was no longer able to stay on her own.



We took turns and I stayed at her house with her about 3.5 months total between Feb and July, then she went to live with my brother in Vermont. We brought her home and I stayed with her in her house from Thanksgiving to about January 15 when she went back. I had a knee replacement in February and will need the other done sooner rather than later. I’m 62. She is on her third regimen for the cancer and it appears to not be working as well as it was.



I think she is well taken care of in Vermont, but she would rather be at my house. I don’t feel physically or mentally able to deal with her. She is very needy with me to the point where she gets unhappy when I go to another room. She feels I should turn down the contract work although I need the money and that since I’m retired I should be totally available. She is much less demanding with my brother. I don’t blame her because her mind is not working right and I know she is afraid, but when I’m with her I get so depressed along with her and wake up crying in the mornings and dreading going downstairs. It hurts me to see her the way she is. I feel guilty for letting my brother take the brunt of this and for not letting my mom come here. I am supposed to go stay for a few weeks in September, but maybe I should visit more often. However it is harder for me to travel with my bad knee.

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When you feel guilty, do what I do. Ask yourself one question.
"What have I done wrong."
Because from what I'm reading I can't find anything.

I have a full time (think more like 60 hours) job, my own home and property, a husband, pets, no children, and my mother thinks I should be totally available-mostly because of that last part. And I tried to make myself totally available despite it all. Last night my husband told me, kindly but firmly, that he's tired of 2nd place. I wanted to be mad, but it shook me out of this "guilt" about mom. You are retired and so your mom thinks you should be totally available. No. You can be available, but not totally available. It is always painful to see our parents decline. But to give up your quality of life to make sure she has one won't work either.

Everytime that "guilt" feeling comes up I replace it with, "I feel sad." I can deal with sadness, and even get help for it, and it's more appropriate than something that doesn't belong in this situation. Because there's no reason to be.
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Personally, I feel that guilt is part & parcel of caring for an elderly loved one. No. Matter. What. It's impossible to rid ourselves of it 100%, so accept it. Accept that no matter what you do, you'll have SOME level of guilt to deal with. Then make the decision that suits YOU best at this juncture in time, and move forward with it. Remember this: you can't fix old age & infirmity. Nor can you cure your mother's cancer or alter the course of her treatments. All you CAN do is take care of your knee and make sure you don't suffer depression in addition to everything else you have on your plate. Unless your brother is heaping on the guilt, then he's agreed to help mom so leave that situation alone. Visiting when you can is more than enough. Plan to send your brother an Edible Arrangement or something similar as you are financially able, to thank him for his help, and leave it at that.

Your mother is also mentally compromised with cognitive decline at this point. Meaning no matter WHAT you do, it will be 'wrong' in her view. She 'wants' to be with you now, you say. So let's say you move her in with you at which time she can decide she 'wants' to go live with her son, and things stink at your house. That's the nature of dementia! Never happy, never satisfied, always looking for the proverbial 'perfect situation' ELSEWHERE that does not exist. I watched my mother go through it for 5 years with her vascular dementia, and it made me realize that I could not fix HER life.

Also, you are the 'sounding board' for mom, as I was for my mother. We are the ones they go to to vent their misery, so we wind up ABSORBING that misery to some degree, and it's hard. Your brother doesn't get that from her b/c he's not her sounding board, so he is much better equipped (emotionally) to deal with her than you are. I was an only child so I was all she had. But I noticed when she dealt with my son, her grandson, it was all rainbows and puppies! While she treated me like dirt, complaining and carrying on 24/7!! So that allowed me to realize I had to step away from the toxicity somewhat in order to save MYSELF. And I did.

Wishing you the best of luck striking a balance between caring for yourself and being there for your mother and your brother.
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HopeCalmPeace May 2022
Your comments are always spot on!
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Thank you all so much. I cried when I wrote my note and I'm crying reading all this. I feel surrounded by support and I have mostly felt very alone with this. I feel like there are a lot of insights here I need to unpack so I'm going to save this chain to reread and think about. My husband (great guy that he is) doesn't really understand why I don't want to have my Mom live with us (other than my walking problem). I do need to come to terms with our decisions, let things go, and try to work on my own depression and grief about my Mom, and realize I can't make her life wonderful again at this point. I'm not sure she is totally happy with my brother but she is cared for. I don't think she was totally happy in her own house when I was there either. She hasn't been that happy most of the time since she lost my dad and of course the illness and dementia make it that much worse. They have a teenager and two exchange students in the house, and my brother's wife actually is a professional caregiver for others and knows a lot of other caregivers in the area who are able to come when they need a weekend off. My mom has a good bit of savings and I am sending them a monthly check plus we let my mom pay for the caregivers when needed. My brother works from home and is able to work flexible hours to take her to doctor appointments etc. and while they don't sit with her all day, there is always someone available if she needs something. This is totally rambling but I think it will help me to list the important takeaways:

I am definitely depressed when I'm with her. Not sure if this is a boundary thing or what but it just hurts me to see her like this, and her sadness. I need to think about getting help for this or self-help.
I need to accept the fact that I can't deal with her day to day and stop worrying about whether I "should" be able to.
I need to realize I am making myself miserable by self-imposed guilt and start changing the way I think about the situation.
I can't make her be happy.
I need to realize she is fine there at my brother's house and they are OK with taking care of her. Also she is easier for them because she is less demanding there. Also my brother just turned 50 and doesn't have any health problems or arthritis yet! Where I was hobbling along and struggling with everything prior to my knee surgery. I'm doing well with this one but I going to need the other one done as well before I'm back to normal. I have been using services to get my groceries for about 3 years!
It is true that in my mind the situation is still open. If I can just put it to bed in my mind and say this is the way it is, and I'm OK to do what I'm doing, it will likely not eat at me so much.
I need to grieve for myself a little and what I have lost rather than continually feel I need to fix things.
I need to stop telling myself I'm a bad daughter and have done something wrong. I could try to live with her but with my current physical condition and the burnout I already have, I would be totally miserable and depressed, as I was the 5 1/2 months last year at her house. Since I'm not able/willing to do that, I need to just accept that letting my brother do it for now doesn't make me a horrible person. If it gets to be too much for my brother, we can look at putting her in a facility near me where I can visit 3 or 4 times a week.

I am so glad I found this website and can see that other people have these complicated feelings like I do about their aging parents.
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lealonnie1 May 2022
Fwiw, watching a parent decline with dementia is the worst thing on earth... the long goodbye. I watched it for 5+ years with my mother and it broke my heart, especially the last year of her life when the dementia was advanced. We feel helpless in the face of what's killing them, and frustrated at the same time dealing with their behaviors. Truly a no win situation. Keep that in mind and be gentle with yourself because you are suffering right along with your mom. Hugs
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I would only suggest, as I have in already three other posts today, that you try to switch out your words. Guilt in not appropriate. You aren't a felon. You aren't a sociopath who gets pleasure from the pain of others. You aren't an uncaring God who is omnipotent but refuses to intervene.
You are a human being with limitations. You are unable to fix everything that is wrong in the world. You don't have the answer to all human suffering everywhere.
The word guilt, then, is the wrong G-word. The correct one is GRIEF.
You are grieving what you are seeing in the suffering of your Mom and the suffering of your entire family who bear witness. You are grieving that you cannot fix this.
Grief can't be fixed. It can only be carried the best you can.
Do what you can. Grieve that it isn't more. Allow yourself the sadness. Recognize the sadness your Mom is living. You have no other choice in this.
But please refrain from self blaming where there is none.
Felons and evil-doers who SHOULD feel guilt never do.
I am sorry for all you are all going through.
Allow tears and sadness. Is all of this not worth grieving?
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just wanted to say that i relate so much to the part about mom putting up a brave front with brother but then always unloading on you. this is exactly what happens with me, and mom says 'i always tell you this stuff, because you listen and make me feel better.' which actually angers me because it has drained me my whole life and it's not my job, her mood is not my responsibility. it's like every visit is an opportunity for her to drain my blood. yesterday i visited her in MC and she was happy when i got there and then it seemed like she was actually trying to make herself sad and come up with stuff to moan about and worked herself up into a fullblown panic attack by the time i left. i'm starting to i feel like i should stay away because she manages to be calm when i'm not there but feels the need to unload when she sees me and makes herself (and me) miserable. mind you, she has no actual complaints. she just wants to pull consoling behaviors out of me to soothe her lifelong depression that she has refused to get psychiatric care for. but i can not be her human antidepressant. phone calls were the same thing before we moved her to MC, i'd have to endure an hour of weepy complaints. in MC they are working on her meds and she has gotten better, but every day is different.
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Guilt is a self-imposed emotion that one is imposing on themselves, it relates back to fear, what if this or this happens? And I am not there? What if I am not doing what society thinks I should do? Will I be judged? I should be the responsible one!

You were the responsible one now it is time for someone else to take over, let go of trying to control.

Accept the reality of the situation, you are unable to deal with her on a day-to-day basis. She is safe and cared for, let it be.
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If you feel bad for nor doing something you think you should be doing, do it and stop feeling guilty. If you think it's imposible to do what you think it should be done, then don't do it, and stop feeling guilty. You got to take some action one way or another. The guilt won't go away if you don't make a decision.
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My Ils are this way. No dementia, but they are declining in mobility. SO built a wheelchair ramp for them that’s now usable and was there finishing up a bit of rail work. The mom then springs it on him last minute, oh, can you take daddy for his mri? They have 247 paid already, but wow, such a treat.

So he sat there for 2 hours, phone dead, waiting around for him. He says he’ll talk to the mom about how he made the ramp so that their hired help can transfer him out of the house and do their jobs. She is meanwhile acting like this is just one more family occasion, same as the adult birthday parties. Not only do I lose him for part of his weekend, I don’t know when that time is gonna be lost. His mother only plans for his being available whenever.

We have set some boundaries successfully, like no more overnights there. They got an aide. Mommy is well capable of scheduling but just likes to dump on him at the last minute. Make a schedule then Mommy.
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Guilt is self-imposed. You have very good reasons why she can't stay with you. And there is no guarantee that it won't become permanent. Anything could happen when she is with you and then you find yourself caring for her. Take the job. You need to look towards u future. You get that knee done so you can visit in Sept. At that time brother can take a break.
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You might want to consider grief and caregiver therapy so that you can handle your feelings of depression when you are with your mother. Talk to her doctors and ask them about her prognosis. Is she going to get better? Should she be considering hospice? Get connected with a local social worker who can tell you about your mothers options and those of you and your brother. Perhaps she is eligible for additional help from aides, people to do housekeeping, etc. Caregivers can learn to create enough distance to maintain a positive and helpful attitude to help take care of her needs without the guilt and depression about what you cannot do. You are entitled to take care of your own health and needs, and to take jobs if you need the money. If you don't, who will? Is there any way you can help your brother remotely? Talk to your brother about what he and you are capable of doing at this time and try to find ways to help that you are capable of doing. In life, things are not always divided up equally. Be sure to thank your brother for what he is doing. Talk to your brother and mother about simplifying your living arrangements. Maybe it's time for her to downsize and live in a place that is more convenient for all of you to handle.
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