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
Blessings to you, xo
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
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
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.
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
Grace
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?
Thank you,
Grace