New member whose son has epilepsy

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grcg71

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Hi everyone!

I discovered this site yesterday while looking for information that would help me adapt to the fact that my adult son will soon be living on his own. I am convinced that will be good for him but I still needed to find ways to deal with my anxieties. Reading about the experience of members here who are living independently is helping and I am very grateful for that.
 
I don't know how old he is, how long he's had epilepsy, how many seizures he's had and how bad they are. But your son needs his freedom and it is good for him. Does he work?

When I was diagnosed 11 years ago at the age of 26 I had do move back home with my parents and I was treated almost like I was a baby. I was having a lot of seizures at the time, about 20 or more a month and they were pretty bad ones, not tonic colonics though.

No one wanted me to do anything by myself. If I was going to take a shower someone had to be in the house with me and would ask about every 5 minutes if I was ok while I was in there. They didn't want me to walk across the street to get the mail out of the box. If I went shopping I was surprised they didn't get one of those child leashes for me so I didn't wander off.

I moved in with my now husband about 7 years ago. My seizures reduced, I was having on average 12 a month. He had a job and was not home almost all day. The family really didn't want me doing anything while he wasn't home - showering, cooking, going up and down the stairs, leaving the house and many other things.

It was finally my dad who began giving me some freedom. It was ok for me to get the mail alone. If we went shopping he did his thing and I did mine. If we were away from each other for long amounts of time he would call my cell and check on me. The rest of my family does this now too except for my husband. He doesn't let me out of his sight at any store we go in, which drives me crazy. We could be in the grocery store and I forget to get something and want to run back and get it, but he won't let me go by myself.

Even though I live with my husband I spend a lot of time alone in the house. He worked (recently got laid off) from 5am to 4pm. We started sleeping in separate bedrooms for a few different reasons - sleep schedules were different, he snores and I'm a bed hog. So I'm alone all night. I could be having seizures at any of these times an no one would know.

You could ask him to give you a call once a day just to check in with you. Don't you call him 20 times a day to check in with him. If he does this it may make you feel better to know he's ok. After awhile he probably won't need to do this anymore because you'll feel comfortable about him being on his own.

This site is great help for those with and with out epilepsy. You'll get a lot of good info and answers on here. Nice to meet you.
 
Thanks valeriedl! I suspect he has the same feelings as you with regards to family life. We do, and especially I, tend to fuss over him too much. Although he would never tell us so, I can feel how much he resents that sometimes.

Last week, he had a rather severe seizure around 1 A.M. My husband and I were near him when he finally came out of it. Since he was still groggy, we stayed by his side, also to make sure he does not slide into another seizure. Although he could barely talk and understand what I was saying to him, he managed to tell us to leave. I told him that we would stay a while just to make sure he is alright but he insisted: "I'm fine! LEAVE!" There was so much pain and, yes, desperation in that request that I told my husband that we would leave him for a while; we went into an adjacent room.

Freedom! It *is* a lovely concept. Although none of us are ever totally free, still it is important that we be allowed to enjoy the amount and the level of freedom that we are able to garner in this world depending on our particular circumstances. I know that and I certainly will not be standing in his way.

Yes, he does work.

Kindest regards to you!
 
Hi there, don't have much advice to offer but in a similar situation. My daughter will be going off to live in university halls of residence in September. That was fine when her epilepsy was well-controlled but recently she has begun having absence seizures on a regular basis and I'm now a bit terrified.

The thing is though, we just have to always put them, their wishes and their hopes for independence first. I find being able to share my feelings of anxiety with someone helps (not my daughter obviously), as does trying to rationalise your fears a bit: what exactly are you anxious about, how likely is that thing likely to happen?

I am currently fighting the urge to tell her she will have to text me every day when she gets up, just so I know she has got up. I know I can't say that to her though because I don't want to spook her. It frightens me that we are usually more aware than she is when things aren't right, and I am also anxious about how her flatmates are going to react to the fact she has epilepsy.

I guess it's important to try to not worry about what "might happen", tough though that is. Maybe I need to start taking my own advice.

Hope all goes well with your son, when is he likely to be moving?
 
grg71,
The worst thing you can do for your son is ask him constantly about his seizures.
That's what my mother did when I moved out on my own the first time.Let him bring the subject up or just ask how his health is doing.
 
I am currently fighting the urge to tell her she will have to text me every day when she gets up, just so I know she has got up.

I take my morning meds a 7am. When my husband was working, as I said left the house around 5 am, he wanted me to send him a text letting him know that I took my meds. It was mainly because he wanted to make sure my alarm went off and I woke up to take them. If he didn't get that text then he'd call to make sure everything was ok. I didn't have a problem with this. You could ask your son to do something similar to that but don't insist that he does and get into a fight about it.

How far away will he be moving? If it far will he have any family or friends that will be living close by? If he's having problems he can call you or them to come over.

My parents and grandparents live next door to me and I talk to them often. If I have a seizure, depending on how bad it is, I will tell them about it. They usually just ask me how I was after it and how I am feeling now. They don't get upset or worried about it.
 
I find being able to share my feelings of anxiety with someone helps (not my daughter obviously), as does trying to rationalise your fears a bit: what exactly are you anxious about, how likely is that thing likely to happen?

JaneC, I most certainly understand what you are going through. We were fortunate that when my son attended university, he did so at an institution where both my husband and I worked. There was one time when he had a seizure during lecture and the authorities were able to reach me at my office and I could accompany him in the ambulance to the hospital. Were he in a place that would have been far from home, I would have worried just like you I'm sure.

Still, over time, I have become a bit more fatalistic with regard to life. Things will happen over which we have no control whatsoever. All that one can do, I think, is to try to minimize as much as possible the risks, and at the end of the day, it is up to each one to decide what risks one is prepared to assume. If I am anxious about the risks that my son is assuming by leaving to be on his own, it is *my* problem and I have to deal with it and not make him feel guilty or bad about the choices he makes. In that sense, I think you are doing the right thing about keeping your anxieties to yourself and not burden your daughter with them.

On the other hand, our kids do know that we worry, which I think may be yet another source of stress for them. Hence the need for us to work through our fears and anxieties with them in an honest manner. For example, we can have a discussion over the various strategies available to us for minimizing risks. I know that's what I intend to do with my son. I have found out that the company that provides home security in the building where he will be living also offers a monitoring service for "independent living". If my son agrees - and I am hoping that he does, we will take up that service. If he is in need of help or if he has a fall, someone will contact us. But it will be up to him to decide whether or not he would like to have that safety net.

He will not be living far from us though. Such will not be the case with your daughter I gather. Perhaps then you could enquire whether the university where she will be going provides such a service. I know that the university where I worked did have security services that catered to students with health problems. She could also ensure that a couple of her classmates have your phone number in case she needs to reach you but is unable to do so herself. As well, if she agrees, she could touch base with you at the end of each week. That's what our daughter did when she went to study in another city far from us for three years. She did it willingly and we were all quite happy with that arrangement.

I am also anxious about how her flatmates are going to react to the fact she has epilepsy.

As far as this is concerned, I would not worry too much. I have found most people to be very helpful when confronted with situations where another human being is in distress or in need of help. How her flatmates would react would obviously depend on whether they know about the condition. If they do, I'm sure they will be supportive. If not, then they will learn about the existence of such a condition and that is a good thing.

I wish your daughter all the very best in her studies.
 
The worst thing you can do for your son is ask him constantly about his seizures.

Thanks Belinda5000! I may have been guilty of that a few times. I'll be wary of that from now on.
 
Thanks for all of that. It is good to talk with people going through the same things and knowing they feel the same way. I hope your son is willing to use the monitoring service for your peace of mind - sometimes our kids need to acknowledge and understand our concerns, I think.

If he isn't, I'm sure you'll find a way to cope - we always do.

My daughter is only going to be an hour away, so it could have been worse. We've to make an appointment with the university's disability service in the summer, so will find out then what is on offer.

Hopefully, some of her flatmates will be willing to watch out for her. I just hate asking young people to take on that responsibility. She is going on holiday abroad with her boyfriend in the summer too, so will have to run through a few things with him. He's been great, just wish it wasn't necessary as the poor boy has enough on his plate with his parents' medical issues.
 
we agreed that my Son sends a text to one of us by noon daily, while living alone. we agreed we would not go hunting to see if he was okay before noon. chose to text his Dad daily and its working a treat for us all.....sends a one liner and we all move on happily. Not control just care...this we needed to make clear to each other ;)
 
Hi there! Without knowing any information about your son I can personally tell you as a 27 year old male with intractable epilepsy and who had / has a very over bearing mother who loves me. I can personally tell you that the freedom that living alone provides is fantastic. its also comes with it's price though. I typically hate being alone but I also love the space it provides. I don't know where you son is moving too but I would recommend somewhere that has good reliable public transit. I live in the country and I cannot get around on my own out here and I still rely on my parents and my partner too help me do basic chores which adds additional stress. There are other challenges too especially if your son has drop seizures then it might not be prudent to live alone but rather with a roomie. As far as what you can do to help with your anxieties. Do you see a counselor? If not that may be something you want to look into. I know there is still alot of social stigma attached to seeking those kinds of services but there shouldn't be. I personally believe everyone should see one at least twice a year like a dentist or something. But anyways. you could try meditation , praying , tai chi. In the end there really isn't much you can do except let go and trust that your son will be ok. I know when I was living at home and I would come home late at night from the local diner my mom would still be waiting up for me and she would always tell me "I was just getting a drink" and I would yell at her and tell her she didn't need to wait for me to get home. I think that's just a mother thing. Mothers worry right that's their job =) I think it might actually be better for both of you to have some space. It might strengthen what I'm sure is already a loving relationship. I can speak about the resentment thing and not wanting to be hovered over. I personally still hate it. When my mother takes me places I am always anxious around her cause she has a habit of staring at me, especially while she is driving she is constantly looking at me like she is waiting for something bad to happen. I really hate that and I tell her to knock it off but she does it anyways. In short. There is not real magic wand that makes the anxiety go away. it's something I think every parent has to figure out. I wish both you and your soon the best of luck during your time of transition.
-Ruairc
 
Thanks urza3277!
I typically hate being alone but I also love the space it provides.
He's just like that too! Up till now, he did not give much inkling that he wanted to be on his own. I think he was vacillating between those two feelings of having to be alone from then on, and anticipating the space and freedom that independent living would provide. He seems to be ready to take the jump now.

I can understand his thirst for freedom. I myself, usually a rather calm individual, get extremely fierce when I feel my freedom being curtailed. Therefore, I do understand his resentment and I hold no hard feelings towards him for that. In fact, I would be mortified if I think that I'll be in any way an obstacle in his journey to that place where he finally can enjoy some sense of being his own person. Indeed, I am quite looking forward to his evolution along that path. He is an amateur writer and he writes the most beautiful poems. Up till now, they have been rather sombre and sad.

I thank you for your support. As you wrote, there is no "magic wand that makes the anxiety go away". We just need to learn to cope with it. I am already being helped along that "transition", as you say, by courageous members on this site ... and by the feelings of happiness and hope that I can read on my son's face.
 
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