I'm open to
suggestions via EMail.
Updated 01-23-98The Toughest Job You'll Ever Have
I'm open to
suggestions via EMail.
Updated 01-23-98
I'm going to tell you about a really difficult job, probably one you'd never choose to have.
The hours really stink, your boss is extremely degrading and demanding, the pay rate is well below scale, you are always on call, there's absolutely nobody who can relieve you of the burden, and you can't quit it. You must be a physician, pharmacist, accountant, chauffeur, personal shopper, handyman, electrician, office manager, booking agent, housekeeper, insurance agent, social worker, estate planner, attorney, stockbroker, and psychologist, all at any given time. You must have an EXTREMELY high threshold for taking crap and never let on that it bothers you. The customer is always right even though they don't have a clue.
You wouldn't want to quit it, either.
I'm talking about caring for chronically ill senior parents. My father is presently housed at the Masonic Home Nursing Facility, after we made two abortive attempts at home care that resulted in hospital stays. He has senile dementia, chronic obstructive pulmonary disease (probably as a result of being a lifelong smoker) requiring oxygen, and prostate disease. Mom has senile dementia, and has had 4 strokes; she is mobile but doesn't exercise good judgment and becomes confused easily. She is also prone to bouts of serious pneumonia.
Mom can be a help and a hindrance. She has a medical background, but is woefully out of date on her training; she doesn't realize this, and tries to tell the nursing home personnel what to do. She thinks she can care for my father, but fails to realize that she'd be on call 24/7. I took away her car after she drove off one afternoon and couldn't tell me where she had been, I'd been looking for her for 3 hours. I had to have their mail sent to a PO Box after I didn't get the checks or bills; she was hoarding them in her bedroom, and many became late; I wasn't going to permit that to happen any longer. I employed my dear friend Amy as a live-in housekeeper through much of 1996, and nothing she did was good enough to suit Mom; for that and reasons relating to my inability to realize that my transgenderedness was going to kill me if I didn't face it and come to grips with it, Amy quit in frustration. Needless to say, Mom can be petulant and mean to me, thinking I'm the cause of her problems. She does not seem to realize that the son who is looking over her shoulder is also watching her back.
Much of the frustration of parental caregiving comes from financing the necessary care. Nobody, but nobody can afford nursing home care on their own, that is about $3500 monthly for skilled care. Medicare and Medigap insurance can't pay for it, so you are forced to apply for Medicaid. Problem is, they want to know everything about your parents finances, details I wasn't able to find in my father's files. I had to contact many different companies, insurance underwriters, financial institutions, and other assorted places is search of the necessary data; some were cooperative, and some were obstructive and obstreperous (Churchill Downs was a pain in the ass, and I will not ever grace their gates with my presence or money as a result). You can place one parent on Medicaid without losing their house, but the second one will result in loss of EVERYTHING to the federal government, so that has to be arranged artfully with the help of legal counsel to protect their assets for the medical bills and expenses to come in the ensuing years. You can't sell the house, or the amount you make on the deal will put you over the liquid asset limit, so you are now in a very elegant trap that requires you to take out a mortgage on a paid-for house to get any money out of that asset. You'd better hope that your power of attorney is clear, and expect it to be challenged no matter how ironclad your lawyer says it is. If you have a contentious family, this could be even worse (I'm an only child and don't have to fight anyone for control). Now, I manage a business that grosses $700,000 annually, and know a little about finance and bookkeeping, but this was a complete eye-opener for me. I feel sorry for the poor sadsack who doesn't have Quicken 5. Government caseworkers have been personable but intrusive, and have intruded at inopportune moments. At the point Medicaid becomes involved, you are now open to surprise visits by Adult Protective Services, and when they make suggestions, you'd better take them as orders. If you're going to work when they drop by, you will be late for work, they don't give a damn.
Now you have to switch roles and become the parent. Problem is, they won't necessarily switch roles the same time you do. You will have to become the parent, and they the children, except they won't abdicate control that easily. They will reassert power, or attempt to, unpredictably and with unforseen results. You may find, as I have, that Mom may commit you to things you can't deal with, or bad ideas. You may have a nursing home ready to dismiss your father on your mother's sayso, over a doctor's objection, because she told them that was what you intended. It was what she intended, not me. You have to be discreet, suggest that people call you at work rather than home, and by all means maintain a PO Box and get the government checks direct-deposited, or they won't get to the bank; they'll just sit on a dresser and collect dust, not interest. You learn to circumvent and work around Mom to protect her interests. A funny turn of events.
I didn't know what I was in for when this started, and it's taken therapy to deal effectively with it. I knew early on that I was the only child of older-than-average parents, and would have to deal with their health degradation, but I still didn't know what awaited me. Yet, i wouldn't trade this experience for the world. I've learned things about my parents I didn't know previously. The pain and pressure that almost caused me to end it all made me get therapy, which helped me come to terms with my crossdressing "hobby". I'm careful and circumspect with money, and invest well. I owe little money, and have few debts. Most of all, I have the confidence of knowing that, no matter what anyone might say, that I'm doing the best I can do for my parents, no matter if they realize it or even appreciate it. I now realize that, in this world, you must appreciate the things you do that are good, pure, and right; nobody else can be counted on to do so. The sooner you realize this, the better equipped you are to deal with the slings and arrows of the real world. I guess, after what I've been thfough this past 14 months, being read while out shopping or partying "en femme" doesn't matter too much; the fact that I can get out and have some fun on my own terms is the important part. I also have made friends who have been great sounding boards, and who give me the respect that I crave, and who receive it in kind from me. We all know each others' dirtiest darkest secret, so this is easy stuff.
January 1998 Update
My mother is also now in the Masonic Home, following a rather scary battle with pancreatitis, a blocked bile duct, and a diseased gall bladder in October 1997. Her mental confusion is certainly no better. She was first taken ill right before I was committed to attend the East Coast Video Show, and Southern Comfort, and I ran up a $200 cellular phone bill keeping in contact with the hospital and her while on the road. I intend for her to stay there permanently, where she can simply walk down the hallway to visit my father. The bill is about $2200 per month: bad, but not too bad when you consider the food, utilities, and laundry is all dealt with in that. It's a small price to pay for my own peace of mind and the ability to do my job as I have to. Good thing - my stores are a thorn in my side due to unreliable hired help. At this writing, it's an average 70-hour work week. Mom hates the nursing home, but it's the only practical idea, and I've pretty much given up any notion of being able to make anyone else happy, least of all myself.
So, here's Anne's "TIPS FOR PARENTAL CAREGIVING"
1. Talk to your parents now, before they get sick and can't, about the family finances. Find out who their lawyer is, where they bank, where the wills are, living wills, where the money is invested, the deeds on house, titles for cars, insurance policies, stock portfolios, etc. Have them show you through the files.
2. Discuss the wills, living wills, health-care surrogate papers, and powers of attorney, and have them checked by an attorney if over 10 years old. Do this while they're still well.
3. Get to know their doctors, lawyers, etc. I was caught with a family doctor I couldn't trust and that didn't treat my father appropriately, and it wasted a lot of resources and caused him to suffer unnecessarily. I don't believe in malpractice suits, but I probably would have a good one.
4. Check after them periodically. Things fell apart before I knew there was a problem.
Don't hesitate to take over the finances, guard their good credit, you may need it!
5. Have a life - BE SURE YOU DO THINGS FOR YOURSELF, DON'T LOSE YOUR OWN IDENTITY TAKEING CARE OF THEM. Spend money for sitters and nursing services if you have to. Be sure to not lose your own lifestyle maintaining their well-being.
Consider this to be a bulletin board for transgendered people who are caregivers. If you have suggested additions, or your own story,
Email
it to me, and I'll add it to this here.
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