Should I get an aide?

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I've been having minor problems with taking care of myself ever since I left home at 17. I can feed myself, but it's not an ideal diet, and I can't cook except to bake bread and use the microwave. I can take care of my apartment--but not reliably. I can get paperwork done--some of the time--and remember to pay the bills, though they're usually overdue. I keep myself acceptably clean. I don't have serious problems, really; I even successfully take care of two cats (though organizing vet care for them is a challenge). Most of the time this wouldn't be the sort of situation you'd need help for.

But here's my issue: My taking care of myself just takes a lot of time and effort. It's hard. I have to think a lot, and eventually if I try to do all those things, plus go to school--and I'm a senior now, so school is getting pretty tough--I eventually burn out and start having problems with depression on top of everything else.

Lately my advisor/caseworker/wrangler-of-government-bureaucracy at the college has been bringing up the possibility of my getting an aide to help me do some of the organizing that seems to be so difficult and take up so much time--to help me remember to do things. I would still be doing everything for myself--but somebody would help me know what I ought to be doing, and remember to do it. It wouldn't be intensive, just a brief daily or every-other-day thing, to make sure I don't get so tangled in a chaotic mess that I'm eating nothing but ham sandwiches or running up massive late fees on utility bills still sitting in the mailbox from two months ago.

I know I have a problem; I know I need to do something about it; but yet at the same time I'm scared that this will mean giving up some of my independence. I'm scared that this person will decide things for me whether I like it or not. I'm scared that they'll patronize me or treat me like I can't do things for myself. I feel guilty, because I keep thinking there are people who would die without an aide, not just get really disorganized and fail classes. I'm scared I'll lose my privacy. And I'm scared that my mom will find out and make fun of me for it, because she doesn't believe I'm disabled; that my autism is just me being "strong willed" and "rebellious". Or, worse, that she'll find out and believe that I am disabled, which in her mind means incapable of anything, ever, and completely dependent... and pity me for it. I don't want any of that.

Oh, if only this were as easy as deciding to hire someone to fix my bike or proofread my term paper....

Has anybody faced a decision like this? What do you think of it? Is it worth it; or are the benefits just not enough to make up for the drawbacks?

It has been suggested to me, and if I can move out and live somewhere else, I am going to look into the possibility. While I live with my family, I don't really want to deal with that as well - one more person in the house whose presence would largely be redundant.

From what you describe as your problems, I think you can certainly justify having an aide. My mother has worked as an aide for people who weren't in danger of death without one, but they still needed one. If some of your ADLs are taking up so much of your energy you either skip them or wipe yourself out trying to get them done, you almost certainly would benefit greatly from and could easily justify having someone to assist you with these factors.

I think the independence thing is definitely something to discuss with any agency you look into. I'll say that based on what my mother said about her work, that she gave her clients more independence than she took away. She provided transportation to stores, helped them get meals cooked (or cooked them entirely). She didn't control their lives, but assisted them so they didn't have to do more than they could handle. I can't guarantee that it's the same all the time.

If you recall SuperTrouper, I think she had two aides. She might be able to give you some helpful advice from experience. While she doesn't seem to be around here, she does occasionally post on her blog - http://autisticspeaks.wordpress.com/ - and there's a link to a facebook page from her blog. I don't know if she'd be able or want to help you, but she's probably fairly reachable if you want to ask her. Although, reading her latest post, she's had a lot going on.

Simply on the basis of good nutrition I would get one. If I didnt eat well my body would not function properly

Simple crock pot stews and big pots of soups that last for a few days in the fridge, are an ideal starting point

Its sounds as if you have never learnt to cook, rather than cannot cook

From a good diet, many other areas in your life will improve too

I have no experience with aide. Just want to say I often find myself overwhelmed with my to-do list as well. Everything can be stressful. To make them less stressful you have to try to make them into habits and routines. Once you're used to doing some stuff all the time it becomes your way of life and won't add to your stress load.

Are aides expensive? Are they covered by your insurance? If cost is a problem you can probably look for cheaper options. i.e. An iphone or ipod can be used to manage all your appointments and remind you of everything on the to-do list. You can order those frozen meals delivered to home at pretty reasonable price. (You said you can use microwave, and that's all you need.) They usually aim to serve seniors but anybody can order them. When I was working full-time I used those a lot. Loads better than frozen dinners from grocery stores and you don't have to go to stores.

*Learning cooking can be frustrating to aspies, like many other skills. However once you become experienced enough, you build a cooking confidence and knowhow. Then you don't need to rely on recipes or directions any more, you just know what to do even with things you never cooked before.

I haven't experienced having an aide but I do often finding managing household chores, running my life etc hard work alongside college work and/or having a job, it's a strain to have to remeber to think about this stuff.

Since I share my home with my partner we can share tasks and that makes things easier for both of us.

If we could afford it though, I would happily eat out more (to avoid having to cook) and also seriously consider employing a cleaner so we did not have to handle as much household stuff.

We keep cooking very simple and often east the same dishes 3 or 4 times a week. We do a lot of stir frying of fresh food which we find very easy (and which I think is fairly healthy), we also often just have salads or bread and cheese and also eat an amount of pasta (perhaps not quite so healthy ).

One thing I did quite early on to make managing bill paying easier, was to set up paying of these monthly by direct debit, so effectively all utilities and rent etc are on a payment plan and we just pay a set amount a month that automatically is deducted from a bank account we've set up just for bills. We then make sure there is enough money in this account to cover these bills (this done by another automative transfer just after payday to this account). This means apart from odd credit card bills we don't have to remember to pay bills as it is done automatically. The utility companies we deal with automatically adjust the payments up or down if we are paying too much or too little (they write to warn us before they do this) but they are very good at estimating monthly payments.

I don't know if it is possible to do something like this easily outside the UK, but direct debits and standing orders are quite easy to set up here and definitely make life a lot easier.

Callista, would you have any control over who got selected as your aide? Could you interview them and get the person you wanted so effectively you'd be selecting your own part-time personal assistant / housekeeper?

If I could afford it, I'd love to have a PA / housekeeper to organise the routine bits of my life for me.

I couldn't do it...I don't think I would trust someone in my personal space that much unless its like a close friend who wants to help me out. But yeah I have some difficulties with functioning, but I don't think having some hired aid breathing down my neck would help much. But it is really up to you, if you think it would help you could give it a try.

If you are worried about your space invaded or being treated like some incompetent child or something by the aide, why not inquire about the guidelines they would have to follow and what rights you would have as far as getting a different one if the one you get does not work or if you can decide you don't want their help anymore and have the right to tell them not to come back anymore. If it is set up like that you probably would not have to worry too much about that. If they want you to sign anything turning any of your rights over to the aide though then I'd be careful and probably not agree to it as that is where they'd get more control or whatever.

Have you checked your area to see if there's programs for helping teach people with executive functioning challenges? It sounds like you might want to look into one of those too.

I don't know if they're available anywhere else, but its been recommended strongly that I look into LifeMAP. (I'm currently trying to find some way to afford it. Looks like the budget amendment has to go through a longer process )

I understand how you feel. It's some of what I'm going through, except for me its not looking at getting a human aide, but a canine one. If you choose this route you have reason to choose it. You do need help too, even if you feel like others need more help. Either decision would make sense at this point.

Yeah, my problem with cooking is mostly cognitive. I could learn to cook, but it would take time; and then I'd have to spend time cooking. I'd probably lose track of the procedure somewhere, and a pot would boil dry, or I'd start a fire, because I got off-track. I have a hard time just remembering to turn my coffee maker off; I'm not particularly happy about my odds of safely handling a stove. Ironically, I have little trouble baking bread or muffins from mixes, because my stove has a temperature control that also shuts off the stove timer when you turn the stove off--so I set the timer, and to turn it off I turn the stove off. No such thing for the burners.

I've tried a crock pot. It brings up another issue I have with cooking: The smell of food. Smelling food constantly can get so irritating that I can actually get nauseated and get a headache. I don't know why. If the house smells of food, I have to wash all the dishes and open the windows and maybe even leave for a while until the smell goes away.

So, for now, it's mostly microwaved things and sandwiches.

Yeah, I've watched Alton Brown and his show is entertaining. And I did see what you did there.

Not so sure about how happy NTs are to hire in help. I'm NT and I have occasionally thought about getting a cleaner but I think I would end up tidying up for the cleaner so as not to be embarrassed about the state of the place. But I digress.

I'd give the aide thing a try. You sound like you could do most things yourself given endless amounts of time and energy, but no one has those and you may have less energy than some. So it's important to make sure there's enough time for whatever is important at any point in time. From what you say, school sounds very important for you right now.

The pride or satisfaction you gain from being independent are very real of course, but if doing everything yourself at your pace (and at the risk of burning you out) might cause you to do badly in school, or fail, then that may just not be worth it. I'm in no way suggesting that having an aide actually would lead to a real loss of independence, but it's clearly something you're concerned about.

The sort of people who would put themselves forward as aides are likely to be reasonably understanding, and if it frees up some of your time and strength for what matters to you, that sounds like a great idea. I'd say go for it.

Every time I hear an ad on the radio for home health care for seniors ("We can help with meals, light housekeeping, personal hygiene, and bill paying so that your loved one can remain living independently at home longer"), it occurs to me that similar support would be helpful to many people with AS.

It sounds like what you're being offered is more like a "life coach", where they help you plan what you need to do and check back to help you follow through. Why don't you ask for a "trial period" of 2-3 months so you can evaluate whether an aide is helpful or too intrusive?