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Old 10-26-2013, 09:10 AM
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Worried about living alone


I've been on my own for a # of years but I've always worried about it. I'm kind of stuck between 2 situations: My seizures are not frequent enough to warrant being in a CBRF or assisted living home, but I don't have them often enough that the County health Dept. or Family Care (anyone in other States know what that program is?) do not think it warrants use of State funds for having someone around at least part of the day -or even for a few days after I have one (sometimes it can take a week before my balance, coordination etc. comes back to where I can function decent). Thing is, home care agencies can't work on an on call or as needed basis.
There was 1 seizure I had where long story short, not realizing where exactly I was, reached up & knocked the glass chimney off an oil lamp all over the rug (lucky I didn't knock the whole lamp off & splash oil on the heater!) Another time I started having one in the kitchen & laid the knife I was using down next to me on the floor after I sat down not wanting to fall (I was half on instinct then and couldn't rationalize where the best place to put it was -only that I didn't want to drop it). Suddenly I'm instinctively thinking; "OH SHHHHHUGAR! I hope I don't reach over & grab the wrong end of that knife!"
My cognitive level & low seizure frequency do not warrant being in a 24/7 watchful eye living arrangement but yet I don't seem to know of anyone or anything I can go to or obtain to help with the limited time that I WOULD need help after one. (I have no relatives within reasonable distance to call)
Anyone else in this kind of situation?
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Old 10-26-2013, 11:16 AM
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Welcome JaneP.

I've had seizures all my life & I've always been very stubborn about my independence. I've lived alone most of my adult life but even when I've lived with others I've been to stubborn to ask that they be responsible for me.

I have had seizures that were awkwardly timed. Most recent one that I remember is having one just as I'm about to pick up a hot pan with my eggs in it to put the eggs on my plate. I felt uncomfortable doing that so I just turned off the stove before the seizure gained momentum & I just waited until it was over.

I do know how you feel about falling between the cracks of the system though. Where I am in Canada it seems to really hard to get the benefits for someone considered "disabled". Even when I finally did get an affordable bus pass for the city bus & was entitled to the van that picks you up at your door, I had to reserve it 24 hours in advance. Sadly I don't know when I'll have a seizure 24 hours beforehand.

You seem very aware of what can go wrong when you have a seizure so set up your home to accommodate yourself. Have rugs or carpets if you're scared of falling, minimise the amount of glassware in your home and address whatever else it is that might make you uncomfortable.
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Old 10-26-2013, 12:17 PM
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Hi, Jane,

I am disabled and live alone. On days when I'm extremely dizzy, am having cognitive issues, or am having trouble breathing I worry about my safety at home. I did catch my kitchen on fire, and I'm grateful it didn't spread to my whole home, too. I don't receive help from family or an agency.

DSHS often times just doesn't know what to do. Are you insured? An evaluation by an occupational therapist can help get a plan together for your safety and functionality at home. Look for one that specializes in seizures. Once there are recommendations then see if DSHS (or home care through your insurance) can help. Most private agencies can respond with a helper pretty quickly if it's pre-approved by your insurance.

This may or may not be what you are looking for, but it would help keep you safe:
LifeLine has a new service with a pendant around your neck that senses a fall and calls their call center automatically. If you aren't coherent they'll call 911. If the medics arrive and you haven't recovered they will take you to the hospital. They hospital might either keep you or send you to a convalescent home until you are safe to go home.

MedicAlert has a new service where they store medical and legal documents. It might be a good idea to store a plan made by your doctor for your seizures and what to do after until you are safe to be home.

From other websites you can also get medical alert-type labeling on thumb drives to keep around your neck, for any electronic copies of anything you think the doctors must have in an emergency.

If you'd like friends to help out, there are even more options. Chronic illness can be very isolating. If there is anything you believe in, even remotely, join up and attend their meetings regularly. Have fun. Make friends. Depending on what the organization is, and who the people are, you can either ask for their help right away, or later on. The point of it is making friends, though, not just procuring help. I made some great friends through an outdoor preservation club. My mom's neighbor, through a spiritual organization. The point is, there is something for everybody.
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Old 10-26-2013, 12:40 PM
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I agree with epileric's suggestions. Take a careful look around your home and determine if there is anything you could seriously hurt yourself on. Like the oil lamp. Do you have a heavy cabinet that could fall on top of you if you fell into it - then have it attached to the wall. Concerned about sharp knives - have the butcher cut your meat into strips that are easy to bite into a chewable size; you'd have to pay extra but if knives are a concern (which it sounds like they are) this might be an option for you. Veggies can be purchased already cut up as well. Have the max temperature of your hot water reduced so if you fall in the shower you won't be burned.
You are right to be concerned, and you are smart to make sure your home is safe. How long are your auras? That is your key. If they are only 10 seconds, you know to make a safe place that you can get to in 10 seconds. Sounds silly, but I hope you know what I mean.
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Old 10-26-2013, 01:08 PM
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I lived alone before I was diagnosed and having pretty often complex partial seizure's. I'd wander in a zombie style, so I've been told. I have no idea what they actually looked like. I'd go to bed then somehow wake up in the couch not knowing how I got there. I was in a 2nd story apartment. My family worried I'd fall off the balcony having no control of myself. My super put me on a waiting list for a 1st level but I ended up moving in with my now husband when my lease was up. I had surgery and it down graded to them effecting my just senses and I'm alert now but still no control during it. Scar tissue switched stuff.

I had nice woman that lived below me that I trusted and gave a key in case they heard something go on and could get in to check on me. That only happened once because I'd screamed.

Last edited by KatieCoy83; 10-26-2013 at 01:18 PM.
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Old 10-26-2013, 03:08 PM
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I'm not like most people Eric.....I'll admit when I need help & with NO hesitation The # of times I've told myself & others that I didn't feel up to driving that day (or what have you)....
I do know someone who's an R.N. and she as more than happy to stop on over a couple weeks ago when I had one & give me a hand but she's so busy, it's hard to know when she'd be available. I don't like the idea of having to end up sitting or laying on the floor for hours until I'm able to balance good enough to do what I need to after one. The Lifeline thing that was mentioned wouldn't really help me....I can't rationalize what to do with it when I start to have one & certainly can't talk to anyone during one. 90% of the time, the complex partial stops on its own & after a few minutes I can get up again. (There ARE those occasions that depending on the severity of the progression of it before it stops I can end up taking an hour or more to do anything as noted before). But I really don't think the police or E.M.T.'s would be too happy if I told them almost every time; "Oh, I'm OK now. Don't worry." :/
I do a lot of home canning (YES! I always have my mother around with me then! She still enjoys it too anyway.) and RARELY if ever buy frozen let alone store canned food. 1 of my biggest concerns is, of course, being in the tub or shower alone. (I had one in the shower a couple weeks ago). It'id be nice to have someone even just watching TV while I'm in there but again, going back to my original post, there are no family members around, no neighbors that I know well enough that wouldn't look at me strange if I asked them to stay around while I was showering :/ & no home care agencies that I know of that would only be around when I'm doing something like that.
The only thing I can think of is it would be better (although feeling a bit helpless) to have a little MORE help than I physically need if that's what I'd need to do to have someone regularly scheduled helping with whatever else rather than not have anyone at the few times I would need someone.
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Old 10-26-2013, 04:51 PM
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How often do your seizures occur?
Do you not have a warning/aura? It sounds like maybe you do since you drive but won't on an "off' day.
Is there a fairly consistent time between seizures? If so, you can plan around this, and plan for when your balance is not good. I know no one wants to plan their lives around having a seizure, but given you are concerned there are ways to function within this:
-don't do or use anything dangerous during this time eg. don't use knives or the stove (use micro. instead)
-rig up a method to take quick sponge baths using the bathroom or kitchen sink, and use one of those shower wands so you can quickly wash the private areas carefully in the shower. You can purchase a special seat to use in the shower too, to have on days your balance isn't good.
-install bars in the tub/shower and near the toilet for assistance when your balance is poor
-(etc.)

Someone suggested having an OT assist you and I think this is a great idea! Your neurologist or neurologist's nurse should know of someone they can recommend who is familiar with the difficulties faced by seizure patients.
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Old 10-26-2013, 05:21 PM
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It's hard to tell....in the last 3 weeks I've had 4 or 5. There are times I can go a week or more without any at all, there was at least one time I went almost a year without one (that was due to a theory I have).
I've always had plenty of time to get away from any machinery, etc. It's the rationalization I have trouble with: I "know" enough to walk away from the edge of a road and sit on the grass or walk away from the stove & sit on the floor but in my (half focused) mind like I originally said, I "thought" that if I just laid the knife down I wouldn't drop it on my foot or get hurt with it. But then I "realize" that what I just did wasn't the best move & by then it's too late to be able to pick it up & set it in the sink.
I don't have a microwave (another long story). If I don't feel right I won't do or use anything that might cause problems. My main issue is how I behave or "think" after coming out of one or ending up sitting on the floor for who knows how long or what may happen if I try to "go" too soon after one. I guess I was wondering if anyone else has this same situation ever: where you only really need help after one but yet you're having trouble finding a way to get it.
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Old 10-26-2013, 06:09 PM
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I did that with a cup of coffee. I was carrying it to the PC where I wanted to sit down when I had a seizure. I automatically knew to put the cup down so I put it on the end-table. Of course the counter in the kitchen would have been better but you have to realize that the whole point is to keep ourselves safe. As long as we've done that we've accomplished our task. If we start to think that we could have always done things better (things can always be done better) we're just going to get depressed. Stay focused on whether you've achieved your task of keeping yourself safe during the seizure.
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Old 10-26-2013, 07:18 PM
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Yeah, but there's a bit of a difference there....a cup of coffee on the table is better than a knife on the floor next to you.
I don't know about you, but my experience has been that people CAN'T stay focused during one. (play-off your last comment) *giggle*
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Old 10-26-2013, 08:59 PM
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Hi Jane,
Welcome to CWE.
I have lived on my own for 14 years & started taking seizures again 11 years ago after being seizure free for 22 years.

My seizures are currently under control but there was a while when they weren't under control. Most of my seizures have been simple/complex partial seizures, I usually have an aura which 90% of the time is followed by a complex partial. With my seizures I usually tend to just do strange things or stare into space so thankfully I haven't put myself in a lot of danger.

There were a few times where I had a partial in the shower but weird thing is most times after I had the aura I would step out of the shower & would quite often come out of the seizure to find myself either in the bathroom or in my bedroom dripping wet. I don't have a bath tub so only time I had baths was when I visiting my parents & would usually have a bath if they were at home.

When my seizures weren't under control I was a bit more careful when cooking, I sued to mainly just use the stove top & never used the grill (I think Americans call it broiler) just in case I did forget to turn it of.

My parents live 30 minutes away but I have a very good neighbor who keeps an eye out for me & checks on me if my mum is concerned. When my seizures weren't under control my Mum & I had this deal where I would speak to her couple of times a day just so she knew I was ok.
I also have a medic alert bracelet which I wear all the time.

The others have given you some good advice so there isn't much more I can add & I just wanted to welcome you to the forum.
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Old 10-27-2013, 09:56 AM
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Originally Posted by JaneP View Post:
My main issue is how I behave or "think" after coming out of one or ending up sitting on the floor for who knows how long or what may happen if I try to "go" too soon after one. I guess I was wondering if anyone else has this same situation ever: where you only really need help after one but yet you're having trouble finding a way to get it.

HI Jane,

I've had complex partial seizures and tonic clonic seizures for over 30 years and for the past 5 years have lived by myself. I've suffered from 2nd and 3rd degree burns due to a tonic clonic seizure in the shower, lots of bruises and a black eye and broken glasses due to tonic clonic seizures and these all happened while I was either still living at home or when I was married. So seizures and accidents can/do happen regardless of whether someone is with me or not. Ever since suffering from burns in the shower, I've lowered the water temp and am not afraid of bathing or showering. I still go into the kitchen and cook, with precautions. I also have diabetes and have used a MedicAlert System (http://www.alert-1.com/). Sometimes after a really bad tonic clonic, it took days to recover (thankfully I haven't had one for nearly 10 years) and the only folks that were around to help me were my kids or friends. At the time, I had no extended family around to help me, so had to rely on friends. I also wear a MedicAlert bracelet and, yes, 911 has been called on several occasions.

Others here on CWE have given good advice. Have you called your local Epilepsy Foundation for more info?
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