You can call me “autocratic”.
I prefer to think of myself as “independent”.
As I wrote about in an earlier post, “Send me no flowers“, being unwell is hard enough without giving hostages to fate.
I’m more like that Sandra Dennis character in the original 60’s film, “Sweet November”. I enjoy the company of others. I have long term relationships. But I like to shut the door and exist in my own space at the end of the day, without the need for diplomacy or other compromises that are the part of daily living when one is part of a couple, or part of a same-household “family”.
To be the person requiring care, one must surrender some level of autonomy in exchange for the sacrifices of the caregiver. Usually.
I say, “usually”, because it’s absolutely true when sharing a household with someone requiring assistance. I did that with my Mother, moving into her home ~3,000 miles from here, because she made it easy for me to help her. Easy for me to respect her final wishes in her last year of life. Sometimes, however, despite everyone’s best intentions, a compromise cannot be reached, and the household must break up.
In my case, I pulled my Auntie out of FL for her own good, after 3 failed suicide attempts, because I thought she’d do better with me than on her own or at the mercy of the State. I first met with her eldercare lawyer, and he agreed that bringing her back to CA was a viable alternative to staying in State and applying for Guardianship (which he agreed he would not fight). This was 5 years after my Mother had died, and during a time when my brother had been diagnosed with brain cancer, and at a time when I was just coming out of the fog of being a caregiver.
I had just returned from a quick trip to China before the first suicide attempt, and did not yet know that the China trip would have lasting impact on my own COPD quality of life between then and now.
Being a long-distance caregiver for my Auntie, who has since been diagnosed with “Frontotemporal Lobe Damage”, I was in the trenches for dealing with someone who was angry at the world, angry at their own body’s failings, and railing against fate.
Through my mother, I had it impressed upon me that, regardless of one’s good intentions, it takes two in order to have a healthy caregiving relationship.
With Auntie (her sister) ours could not be healthy in close quarters, as Auntie has a type of impairment that causes the breakdown of social conditioning, and pits us against each other in terms of tit for tat warfare in the home.
So, after our 5,000th fight over dogs pooping and peeing in our new apartment, and the geriatric care manager’s decree (along with that of social services) that she move to her own place or be institutionalized, she ran away to Las Vegas with help from other elderly friends. Our relationship managed to survive, and I continue to check on her as a long-distance caregiver about every 3 months or so with in-person visits, and otherwise monitor what’s going on via the computer / facebook / the phone. When the State comes for her again (as happened in FL), I won’t intervene. She needs more help than I or anyone can provide as her personality deteriorates.
Having survived a year of caregiving with a difficult loved one, I want none of it for myself. I plan to willingly enter an institutional setting, or act upon my rights under the “Death with Dignity” law now available in California, but I will not willingly enter a hostage situation for caregiving in exchange for love. I don’t want to be a live-in girlfriend or a wife.
Despite a very healthy ego, even I don’t love myself so much that I would willingly sacrifice another to my own needs. I know I’m just not that nice when I’m having a difficult day, or am in the midst of a pity party for myself. Honesty about one’s own failings and shortcomings is a must if one is going to deal with aging in place realisticly.
I also had a mostly reasonable upbringing, despite spending most of the first 5 years of my life in and out of hospitals due to health issues. Luckily, I still enjoy hospitals. I look upon them as hotels, and have no fear of being in one. Fear of the expense and the myriad of paperwork involved to pay for such care? Absolutely. Fear of the care? No.
This is a clarification of the unmarried stream of thought segment I included in another blog for why I remain unmarried, as well as an explanation as to why I think caregiving is the hardest thing anyone can do, but especially when they can’t walk away from the person they are caring for as it’s family and not simply a job.
Caregiving as a profession is one of the hardest things anyone chooses to do to make a living, and I thank them every day that they are on the clock. Having done the job, I appreciate being in a position to have outsiders impose time limits on how much each day professional caregivers spend caregiving so that they aren’t overwhelmed.
It’s a special person that becomes a professional caregiver, usually, and I look forward to the tender mercies of whomever comes to aid me at the end in hospice care if I’m not successful in going peacefully in my sleep before we reach that part of my life.