I worked in the disability field for several years and in the elder care field for a lot more years. In both of those jobs I found that a lot of people simply ignored the truth - we are all going to get older, most likely we're going to get sick, and we're all going to die.
I suppose that many of us hope that we're going to be just fine and very functional and then one day we'll just keel over and be gone. The truth is it hardly ever works that way. Most of us are sick and need help for awhile before we finally kick the bucket. And in this day and age of prolonging life with technology, that period of sickness can get to be very, very long.
Family members of people with disabilities rarely have made legal arrangements for them for when their caregivers get sick or die. One family member said her plan was to outlive her son with disabilities. The only problem with that plan was that she was 40 years older than he was. Almost no one I met with had made a plan for what they wanted their family members to do when they themselves got sick and needed help. It's just stuff us human beings don't want to think about. So we just pretend it isn't true and wait until there's a crisis. Then everyone rushes around to take care of the problem without time to make good decisions.
It occurred to me the other day that although I knew exactly what I was going to do under what circumstances, I probably needed to put it in writing so that my family would know what I thought. I've told them, but people can forget - especially when they don't want to think about it. I do have an advance directive and a will. But that's really not enough.
So... if I have brain damage and am not able to take care of myself, I recommend that my family members take me straight to a nursing home and skip any guilt they would have about it. During the time I worked in the elder care field, I visited every nursing home in my area and a lot of them around the state. They are all pretty much the same. The expensive ones have prettier furniture and surroundings, but they are the ones that cost almost double compared to the others. Plus the expensive ones are short of care staff just like the less expensive ones.
So my advice to my family is don't make a big deal out of it. There aren't any good nursing homes so don't spend any money. Do what you can to get me eligible for Medicaid (which will mean you'll have to sell a lot of my stuff) and pick a nursing home that is close to you or whatever. I've been low income for virtually all my life so I think using Medicaid is perfectly appropriate. In the final analysis, though, if I'm out of it, I hereby give them permission to do whatever is best for them. It's not going to matter to me anyway.
When I get to the point where I shouldn't be driving - and I plan to take the AARP tests regularly to be sure that I am capable - I will move into an inexpensive place that will provide me with meals, some housekeeping and a little transportation. I've already looked at some of those places and I could almost pay for one with my Social Security income.
I don't have a lot of money and I don't get a lot of Social Security so I supplement the Social Security with savings. If I run out of money, my plan is to get a reverse mortgage. My house is small so its value isn't that great. But it would tide me over for awhile. If I have to move, I will sell it and use the money for living expenses.
I am blessed that I am never lonely and am quite happy living alone. I am blessed to have friends that help me if/when I'm sick and not able to get out. I have alarms on my doors to scare off burglars. I carry my cell phone with me so if I fall, I'll call somebody. If I have a heart attack or a stroke and can't call somebody, one of those "buttons" wouldn't help me anyway. Usually I talk to someone every day so if I were out of touch for a day, someone would check. On the other hand, dying from a stroke or a heart attack isn't that bad a way to go.
To clarify regarding the advance directive - I have absolutely no fear of death. I'm not in the least bit interested in living longer if I am dependent on someone else's care because my quality of life depends on my independence. That might not be true for everybody, but it's true for me. If and when I get older than 75, I'm going to sign a "Do Not Resuscitate" because 75 plus years is plenty long enough to live. I don't need to be brought back from near death - it's time for me to go.
I've had a lot of deaths to deal with in my family and in my work life I've dealt with many of these issues. So, I don't really have denial. I've watched many people get old and have admired how some of them did it and been appalled at how others did it. I don't plan to sit around and feel sorry for myself as I get more and more decrepit. My objective is to live until I die rather than wait to die.
I am taking good care of myself. I eat nutritiously. I work constantly at keeping my weight down. I exercise. I do what I can to be useful to other people. I ask for help when I need it. I do little bits of service as part of my recovery program. I have an active program of spiritual growth - prayer, a meditation practice, study. So I hope I will remain independent and functional as close to my death as I possible can.
Since this is a public blog, although this is written primarily for my family members, I hope it's useful to someone else. I'm putting this here so that it's easy to find - it's online and in my data base. If I change my mind about any of it, I can just update.
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