Elder Care - Rights and Responsibility
My 76-year-old mother is a widow who lives alone in a large home on a large piece of property. She has two daughters: the eldest with whom she has been totally estranged for a dozen years and who lives 4 hours away; and me. I live a five minute drive from her home.
My mother has been a life-long compulsive hoarder whose problem has escalated dramatically since she became widowed 5 years ago. When my sister and I left home as young adults, she filled her care giving need by taking her elderly aunt and father into her home (along with ALL of their personal belongings both big and small). After their death my father became ill and she was able to continue in her care giving role until he died. She's appeared depressed to me ever since.
Aside from whatever drives her hoarding behavior, she is not mentally impaired and is in reasonably good health aside from a knee condition that recurs from time to time.
The problem for me is that she is socially isolated (due to her hoarding and fear of having people into her home to discover her 'secret').
Coming from a small family, she has only a distant relationship with other relatives. As a result of this, she expects that I am to be her sole caregiver and 'enabler' of her choice to remain in a home that is unsafe for her (due to the hoard and a stairway she must navigate daily)and too large for her to maintain inside and out (she is technophobic and has no idea how to do outside maintenance -- that was my dad's domain}. She also has a fear of letting anyone else handle her finances and so she does it herself through a large number of institutions that I cannot get her to divulge to me in a list should I be forced to take over her bill payments etc. in a crisis.
She has a fear of her own death and will not make or discuss with me any arrangements in this regard.
I am already overwhelmed with the physical demands of looking after the maintenance of her too-big home. If she has a health crisis and I am also saddled with simultaneously providing personal care and financial management on top of this, I will end up dying before she does. I have told her so. She does not care. Her
need for independence and concealment of her compulsive hoarding is more important to her.
I asked her if I am named as executor of her will and if I have been named in her health care and finance Powers of Attorney. She refused to divulge this to me. I arranged for my lawyer to contact hers to find this information out on my behalf and my mother would not give permission for her lawyer to divulge this to him. Our federal Privacy Laws support her choice. As a result, I told my mother that I would NOT accept these roles if I am named and recommended that she discuss other arrangements with her lawyer. I'm fairly certain she has not and will not because she has no one else she could possibly name besides me.
In order to preserve my physical and mental health, my ability to provide care for my own spouse and children, and to see to the maintenance of my own home and finances, I decided this past fall of '09 to walk away from my caregiver role.
I explained my position fully with my mother (including my concerns about her safety, addressing her hoarding, the impossibility of being everything to her all of the time to the detriment of my own life, etc.) I told her that I loved her but that her absolute resistance to "meeting me half way" by 1) getting help for overcoming her hoarding, 2) by getting rid of the hoard,3) by moving into a safe, one-story home (she is adamant about not wanting to be in a condo, apartment, or nursing home) and, 4) by consolidating her financial assets into one or two institutions under the management of qualified people, has created a problem that is bigger than I am.
I ended the conversation by telling her that my only two choices are: to walk away, or to report her to a local social service agency who will likely force her to do all of the above and will forever brand me (in her eyes) as an evil and disloyal daughter. I walked away and I haven't looked back.
The days and nights since I took this action have not all been easy, but I remain firm in the conviction that her RIGHT to remain independent in her own home comes with her RESPONSIBILITY to make it work without destroying any other person's life in the process.