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Hello. I am the primary caregiver for my widowed mother, who has breast, lung and brain cancer. The surgery to remove a tumor from her brain has resulted in what I would call mild dementia - confusion and some bouts of anger.

I have been with her for virtually 24 hours since the surgery on October 16 of this year. She has recovered to the point where she can walk, prepare food, converse, clean, etc. If she used the proper aids (a cane, a walker), she COULD live alone and take care of herself with visits from me and home care aids. When we are not there, she could also have an accident or start a fire if confused (and she does not want to be seen with a walker - I'm going to try to convince her to carry a cane).

I have been living with her (moved into the family home - just me and her) since she left the hospital. She does not want a home health care aid helping her. She was fiercely independent before the surgery and even more so now. Lately, she has fits of anger - unjustified - that come out of her confusion. (e.g., accusing me of mishandling her medication; upset because she claims that I left garbage in the sink (though she actually did), and so on.).

My epiphany is this: I had become so overprotective and yes, controlling, that I gave up my own existence to focus on hers for 24/7. Today, for the first time, I realized that doing this has filled me with resentment, anger, stress and frustration. I want to live my life and care for her at the same time.

Therefore, I decided that I must let her live the life she wants, provide the best care that I can to keep her as safe as she allows me to, and be prepared to deal with whatever may come. This means that, for example, when I have to go to the store or run an errand, I will invite her to join me. If she refuses, I will accept her answer and accept whatever may happen when I am away. She has told me when in a semi-lucid state that she would not take unnecessary risks when I am not there, but there's no way to know what she sees as risky.

If her condition continues to deteriorate, I do have the legal authority to place her where I think she will be most safe (I just hope I recognize when that is), but for now, this is the compromise with myself that I have come up with.

Is this an acceptable solution? All perspectives are welcomed.

Thank you,

Grace

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Grace: You live up to your name. You have the answers within because you are in touch on a soul level. I can only confirm your words.
Blessings to you, xo
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Hi Grace. I read your post and have not room to give any advice because I am a wreck myself - except for one thing: When you feel like life with mom is getting out of hand and your life is getting out of control again which undoubtedly will happen, re-read your own post. And then read it again.
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I think it's great that you came to this conclusion sooner than later. That is what I should have done with my dad over two years ago. Instead, I did not get help, made all the sacraficies for someone who accusses me of stealing, demands all my attention etc. The anger and resentment I have come to feel is overwhelming-- that comes on top of the sleep deprivation, no friends, no social life and literally being with him 24/7 for about 2 1/2 years. I left a job I loved-- took early retirement (at a loss to me), moved from the areas where my only son and all my friends live. But it's not been enough. I know he is sick. He has dementia related to liver failure. He is paranoid and delusional. I gained over 45 pounds. I should have drawn boundaries in the beginning. Now it seems like it would be too little too late. My advice to all... no matter what.. make time for yourself in the beginning-- there are ways to get at least someone to stop by for a few hours a week-- go sit in the car at a park if you have to. By the time you feel like you need help, it's already done the damage. I wonder at times if I will ever be myself again. Originally I thought my dad had months, maybe only weeks to live( at least that's what the doctor eluded to ). Now I wonder if he may out live me-- and that in itself makes me angrier than anything. Good luck to you.
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Grace, why not enroll her in hospice care and have them come out to the house? I used a hospice service that also has a Hospice House, and planned to use the House only if absolutely necessary. As it was, my husband was able to remain at home and die in his own bedroom.
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Hi. A quick update on my situation and a request for advice: My Mom has had two bouts of pneumonia - both resulting in trips to the ER. On the second trip (just this weekend), she experience a marked change in her cognitive abilities. She went from being responsive to basic commands and generally polite to confused, angry and mean-spirited towards me (and even the nurse). I thought this could have been a reaction to the antibiotic that she received, but the doctors said that was not the case (though when I read the medication warnings, increased confusion was one of them).

I also learned that the cancer in her lungs have spread and that she has lesions on her spine (in addition to breast tumors and brain lesions). I do not know her prognosis (have not spoken to her doctor), but obviously, she is not getting better.

She still lives at home (and I live with her), but setting aside the effects of the pneumonia and fever, her hygiene has deteriorated, she expresses intentions to do things - clean a room, drive her car, go to a store - but does not/cannot make an effort to do them due to extreme fatigue.

My questions: She absolutely hates it when I speak to her doctors - this sets her off more than anything - but I need to understand what stage she is in so that I can prepare emotionally and operationally for what is coming. Should I call them in confidence? I think they would understand and not share with my Mom that I called. (I have medical POA).

What can I read to prepare for what may come as her condition worsens? (though I pray that her doctors can stop the spread, but this latest news was a real blow).

What should I absolutely be sure to ask her / take care of before the confusion advances? (I have legal paperwork taken care of for the most part - there is one last document I need to get her to sign this week).

She is super-sensitive to talking about the future and does not like it when I bring it up. Should I wait for her to do so?

Finally, I am thinking about bringing in a home health care aide/nurse soon so that Mom gets to know and trust them if her condition worsens (and so that I have someone to help me manage through this). Does it makes sense to do this or should I focus instead on finding a facility (e.g., hospice care)? She would not want to leave her home, but it may come to a place where I cannot care for her.

Thanks everyone for your thoughts.

Grace
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I understand about not wanting to place her in a facility. However, there are many more options, such as assisted living or even independent living with people coming in during the week. If you know it will work out if your mother moves in with you, I think it is an ideal option. Since you live alone, it will be only your feelings to be concerned about. Sounds like an ideal situation, perhaps for both of you. It is much the same as assisted living, but you'll be the assistant and it will cost much less.
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Hello everyone, and thanks all for your feedback.

When my maternal grandmother suffered a stroke, my aunt took care of her for 13 years while going to school, working and raising a son alone. She hired a home health care worker to stay with my grandmother during the day and then took care of her at night. That experience is the standard by which I have made decisions about my mom's care.

The key difference between these situations was that my grandmother could not care for herself. My mom still can for now, but the potential of her mild dementia worsening is the unknown factor that causes me to be unsure about how to prepare.

I do not have children; I live alone. Resentment, anger and frustration aside, I don't know if I could handle the guilt and stress of placing her in a facility, which is why I mentioned moving her into my two bedroom condo. Thanks to your feedback, I am going to spend some time researching local assisted living facilities and nursing homes so that I can educate myself about this option.

Agingcare.com is a blessing.

Merry Christmas everyone,

Grace
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Grace, it sounds like you went through her convalescent time with her and both of you are ready to move to the next step. I do not know if your mother is ready to live independently, but she does sound like she can spend short stretches of time alone. Since you are there, you will be able to feel what is right. I would have serious consideration about moving her into your home. Do you have other family members living there? How would they handle another person who was prone to bouts of anger? There are other options. It is always best to consider what the better option is beforehand. If you were to move your mother into your home and it didn't work out, it makes for a very stressful situation.

I am glad that your mother is doing better. I know you'll have a wonderful Christmas together. Please treasure her while she is here. You seem to be a very loving daughter.
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(((((hugs))))) Originally you twrote about placing your mum where she would get the best care, then in your last post you mention moving her home with you. Please think about that very carefully. Not everyone is cut out to be a 24/7 caregiver in their own home.

To quote you: I had become so overprotective and yes, controlling, that I gave up my own existence to focus on hers for 24/7. Today, for the first time, I realized that doing this has filled me with resentment, anger, stress and frustration. I want to live my life and care for her at the same time.

Your mum has serious illnesses and her needs will increase. From what I have read, I would recommend that you look into other arrangements than bringing her into your home. Jeanne's question about resources is a good one. Will your mum be able to pay for in-home care? or will you have to apply for medicaid for her? If she is cared for by others, in her home, or in a facility you still have responsibilities towards her and can care for her in that sense while living your own life, as you state you want to. There is no shame in that.

If you are resentful now, you may become much more so havng mum in your home. I know I could not do it with my mum. As far as I am concerned, placing her where she will be safe and well cared for is a very acceptable sotution. Merry Christmas to you, and let us know what you work out. Joan
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I have healthcare and durable powers of attorney for my mom. If she needs a care center, we can cover short term costs, but my ultimate course of action may be to move her into my home depending on the her condition.

Grace
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Grace, I think you have experienced some important insights. Congratulations.

You say that you have the authority to make decisions about where she lives. Does that mean that you are her legal guardian?

If Mom needs a care center, how will that be paid for? Does she have sufficient assets to pay her own way?
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Addendum to epiphany: I would also appreciate thoughts on the proper procedure to have her removed from her home and placed in a care facility. I do not believe that this is needed now, but I want to know what to do if we reach a point where she is a danger to herself. Who do I call? Social services? The care facility staff?

Thank you,

Grace
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