Trying to help my mom

RE: Trying to help my mom

Submitted by Gretchen on Tue, 2005-03-15 - 01:39

Hello Knorton -One of my daughters and I are emotionally/functionally in your situation. She's read your post as I have. We both want to post to you and devised this post together. We each had a different message to share. Here is me:I'm 56, diagnosed 6 years ago, with epilepsy. In ways I was luckier than your mother because I did have an abnormal EEG, heavily suggestive of epilepsy plus my first witnessed sz was a 2 hour tonic/clonic, I worked at a hospital as a nurse, so from beginning to tortuous end of that first witnessed sz, it was witnessed by informed others. This hospital's ER also had a trauma center designation and were more sophisticated than those without that designation. I then sz'd on and off after that first t/c, more on than off, for 5 days. With all of that activity it was confirming I had epilepsy plus epilepsy is in my family which was immediately known to those taking care of me, which also was suggestive I had contrated epilepsy. I have Jacksonian sz's, among others, and I heavily suggest to you to look up the definition of that type of sz. I am not diagnosing your mother. I don't have that ability. But I have Jacksonians and what you describe sounds very familiar to what I have but I want to add that my Jacksonians don't always follow the total definition, which is common for many seizures, we're all different plus I've witnessed another person having what she called a Jacksonian and instead of the very tight muscle contractions I have on one side from tonic muscles rumbling fromthe bottom up the side of one side, I AM conscious. I remember it all. Sometimes I can talk fluidly right thru it, other times I can barely mutter a word the tonic contractions are so strong and painful. Now this other person I know only had a tremble in her hand, could talk and would say say very casually "look at my Jacksonian", and hold up a trembling hand. She though is highly suspected of "producing" sz's when it would benefit her so I'm not even sure why I'm mentioning it. But? Look that sz type up. See if it fits what your mother is experiencing but don't MAKE it fit, which can be a desperation maneuver any of us can make.I'm concerned in something you said because this happened to me when I was first diagnosed and it caused real disaster for me. Basically the problem was too many cooks in the kitchen or you're saying there are many doctors following her which translates to me as potentially she's not getting good continuity of care. Note the operative word there is "potentially". That happened to me at your mother's approximate stage of this, with very uncomfortable results for me. It's extremely important all care givers are on the same page and while it seems impossible that all might not be, it happens. Resident care tends to promote poor continuity in care just because of the resident system and as a result of that? I and my family fight against resident care when I'm hospitalized in a crises or hospitalized. But that is our choice based on experiences I've had as an RN, a patient and maybe random, not often occuring experiences.When I was first diagnosed the game plan was I first saw my internist who put me on two AEDs and I was "controlled" for 5 months, still having problems, but not sz's. I had thought disorganization problems, often momentary confusion, memory loss. Then my internist put me on an antibiotic for an ear infection, contraindicated for my primary AED, cancelled it out which caused me to loose control and I've never gained it back. He sent me to a neurologist and the plan was the neuro would decide a care plan, refer it back to my internist who would monitor it. What really happened was I was blitzed stupid on new AEDs because my neuro was prescribing one kind of AED and my internist prescribing another. In fairness to all I'm also intractable because of my extreme side effects to most AEDs. We didn't know that then. We assumed they were communicating between each other - they weren't. I was too bombed to even think this out, my family was new to all this and I sometimes (sometimes?) expect how I feel or what I'm thinking to be mind read by those around me. Which of course doesn't happen. I couldn't be an advocate for myself, therefore couldn't accurately assess what was going on and what was happening unknown to anyone. Partially this occurred too because I was being given samples of medicines by both doctors resulting in double dosing AEDs and the devil antibiotic was a sample that started all of this loss of control, so the pharmacist didn't pick it up either. I now refuse to even pick up an over the counter drug unless I have taken it through at least one pharmacist. I DO believe pharmacists know their drugs, have many compuerized programs with a lot of information no one else has and that IS their business and I've gotten to a point they are central in my epilepsy treatment. Also pharmacists always seem to want to help, advise. Anyway, back to the fiasco. I was being double doozied by two doctors on AEDs PLUS during that period of time I had wailing headaches from all the sz'ing, a drug for that was added and then I really went into mindless orbit. THEN someone decided I was "depressed" and put me on an SSRI which made all of this worse. IOW I became very ill because - I had very poor continuity of care, too many cooks in the kitchen and the lack of communication from that harmed me, instead of helped me. My doctors were all concerned, baffled about what was happening to me, and I still to this day wonder why they didn't communicate between each other effectively - but they didn't. If all that wasn't bad enough I was then scheduled for a neuro psych eval, which is commonly done with a new diagnosis of epilepsy and the pardon me but stupid psychiatrist who tried to administer it saw how totally blitzed I was and he? RAISED my dosages. Yeah, right, that really did not help the situation plus he didn't tell any of the prescribing doctors. He did mean to though. Some snafu happened, and he didn't. I can still remember that period of 4 months as one of the worst experiences of my life. I have some typing I tried to do during that period of time I thought was legible enough to read, recognizing there were "some" errors and in reality? It's nearly illegible.One of my daughters assigned my epilepsy problems to herself as my partner in the wonderful bizarre world of epilepsy, as it seems you are wonderfully doing, to me and is always very concerned about my well being. She wants to be there for me, be an active participant, my advocate when I can't be, and has explained to me for her well being and her needs, to not be left out, yet often I feel I'm doing her a favor now by keeping her in the dark. Also my husband has been supportive, gone through a lot with me, and both of whom I've realized as I think I've hit a higher level of awareness just lately about what epilepsy has done to both of them, what a horrible toll this has taken on them surely and in actuality many times, particularly starting at that time I lost control and had multiple doctors treating me. THEY didn't know what was going on and I certainly didn't/couldn't know. Just an interesting thing to stick in but the way we all finally figured out my mind was definitely on perma-hold from too much and/or conflicting medications was when I saw my own arm resting on a table, jumped back in alarm because I didn't even KNOW - that was my arm. I thought it was someone else's arm, in a room I knew only two of us were in, and it scared the cr** out of me. It was that incident that caused my husband to take a step back, investigate with all doctors - what's going on here? And then we found out I wasn't getting good continuity of care - I was being literally overdosed on AEDs and conflicting other medications, but no one knew it.Also you should know that EEGs don't always pick up sz activity. Now that is ALL I know about that. I'm not an expert on EEGs. I gained that knowledge by reading posts, and reading about EEGs long ago. I also know people who are obviously sz'ing, their EEG remains normal, or maybe it's normal enough, I'm not sure, and have to have my non-medical term of wires put deeper or closer to the brain. I THINK, don't go on this whatever you do, that there are several methods used to do this. I tend to zone out the minute I hear testing procedures that scare me. One of the many reasons I'm so glad I have a daughter like you who is usually with me during appointments, un-fun testing, periodic crises, is because non-epileptic clearer minded her takes notes, writes down her impressions and observations, and later helps me understand what all was said and/or went on. When I'm ready for her to explain all the doctor explained to her, or describe sz activity she observed to me I wasn't totally aware of, it's much easier for me to understand all things when my mind is clear and I'm not actively having problems. She's witnessed me through many things and learned. She's my advocate when I can't be, tells me things I tend to forget or was unconscious at the time and can't remember. You are being your mother's advocate is my point, and from my side of the bed? That's an irreplacable gift. Honestly? I love you for it. My MRI in the beginning was normal. So was my blood testing and when they finally got my head clear so was my neuro psych eval. BUT? My EEGs are always abnormal, still I had wires placed into muscles around my jaws and up my nose which was a dreadful experience to me just because it was icky and felt so abnormal but also gave my epileptologist a lot more information about my sz's. I was put to sleep briefly while they were placed BTW so I got to skip that little joyful experience but the ones up my nose.....oh well who wants to hear about THAT! Use your imagination I'm sure you can reach an accurate conclusion how - weird that was. One of the nurse's said don't move around too much and dislodge any of the wires or whatever they called them and I swear for 3 days I think it was, I held my bladder until near bursting because I didn't want to move around, get out of bed, and I didn't move my TOES I was so afraid of dislodging one, but still? My doctor did get some good information from that test that was more comprehensive than a regular EEG. I hope he never misplaces that information because I don't want to go through it again. It wasn't that it was so painful, it was unnerving. Many people with epilepsy have normal EEGs BTW. It is a good tool, but I've read, a limited tool. I also firmly believe that any testing done is just as good as it is applied and interpreted.I go through this constant emotional struggle personally, as the epileptic, of feeling like a burden. My daughter has a very active, productive life and she interrupts it to be by my side, has invested in me, and I wish I could say I don't need that but honestly? It's extremely comforting and it's needed. I love her for loving me. What I do though out of concern for her, guilt for me? We're just discusing this too, again, is I "wall her out" because I don't want her to know if I'm going through a bad period. I don't want to interrupt her life, burden her. In many ways her life is really taking off in the last year or so but in other ways in that same period of time she's taken some real hard knocks I'm well aware of and I don't want to be one of her hard knocks. So I "hide" things from her, but not successfully. This is very exasperating to her and I'm maybe finally understanding why that is and why I do her no favors dummying up, trying to say everything is fine as I slurp, drool, and slur it out--"I yam yust find hunnee." SHE KNOWS. Who am I fooling? As she says to me it is much harder on her not to know what's going on with me, if something isn't going right. She's invested in me out of choice, and it's cruel to cut her out. As she's explained to me she resents that I'm making judgments about what she can do and wants to do or doesn't, about helping me with my health problems. It is her decision, not mine, unless I really don't want her there. SHE'S RIGHT. And I? Am very lucky. AND - so is your mother. You, darling, impress me. Your mother, like me, is very lucky to have you.I have one other suggestion. Don't catch a doctor "on the fly" with important questions. Approach Dr. ____ and say something like - I have concerns and questions. When would be a good time we can talk uninterrupted when you have time. We've learned to do that and get far more comprehensive information from a harried doctor who is then put in a situation with questions when he doesn't have the chart and is too busy to give you adequate attention. Doctors I've found universally appreciate your courtesy of respecting their time also BTW. You'll be able to sit down with him/her without all the cacophony going on, and the doctor can concentrate on your mother's situation and give good methodical answers. Make a LIST of your questions and concerns. There is always a little anxiety with meetings like this and you might get anxious, forget all you want to ask and say. What we do? We make two copies of our list of questions, concerns, give one to the doctor, keep one for ourselves and makes notes by our questions which facilitates communications but it also nails a doctor down to his word which tends to make for a much more thoughtful appointment. This is one of my daughter's important functions for me because I tend to "zone out" the minute I hear certain buzz words that scare me. Later when I'm not zoned, she and I will discuss her notes, my questions then get answered too. I also can be post ictal when a doctor is, what seems to me, indulging in fast firing off diagnoses, test results, further recommendations, status, many things that are sailing straight through my mind and right out the "door" because I'm PI but don't appear to be PI all the time, but it's hard for others to detect my condition at times. As a result a doctor is giving me his time, but I'm not necessarily "there", which no one knows, including me! So a very important thing my daughter does for me, you could now be doing for your mother, is with your clear concerned mind start making notes now. She'll appreciate it when she recovers from this. Your mother no doubt like me will want to know what happened, in detail often, and your written observations are things you can both discuss once she is fully recovered and for me? That is very important and allows me to feel I still do have some control over my world. In later years some of my daughter's notes have been important when disussing further treatment based upon history that was not put in my chart or no one wants to, neither would I, dig through the foot or more of a chart I've now accumulated.Don't assume your mother's mind is clear either just because she sounds clear. Since she's going through all of this, she's going to take some time to recover cognitively and emotionally from it, and neither of you might be aware of the fact that all her faculties are not yet in place. This has been a common casuality for me. I have written very legible, well organized emails to friends, my family whose content is - well, quite interesting. Often there is no clue to anyone around me, including me, my IQ hasn't risen yet to it's full potential but we're recently learning that - I'm "not home" all the way when they judge how intact I might be by the literate, well organized email I sent, and ignore the import of the often rather bizarre content of what I say. I can also appear to be intently listening to someone, interject all the right oh's, and okays, and thanks you's but I'm on automatic pilot and I not only have no idea what was said to me, I don't care either. I haven't recovered yet. Awhile back I had a very long sz. When I had recovered for maybe about an hour, guesstimating, the doctor came in to talk to my husband and I. I have become quite good I think, and it appears so by other's reactions to me, that I'm taking it all in. Not so. I have no idea what all this caring doctor was explaining to us. My husband said I was watching the doctor intently talking to us but my gaze kept veering off, which they all exected and is frequently done by anyone in any conversation so it wasn't noted as important. I interjected a few confirming words I understood what he was saying I'm told. And what I was really doing was studying how much my dog had shed on my new winter coat but wasn't it great I got a grey coat and the dog hair didn't show up so much as ait did on my older black coat and right in the middle of whatever the doctor was saying - I started discussing shedding dogs and grey coats! EEEKKKSSThat's primarily all I wanted to say. I had my daughter read this post. She hasn't signed up here yet as a member but plans to. She did want me to tell you that if you need moral support her addy is: robinsretreads@yahoo.com and hopes you will write to her if she can help at all. She is not a medical person but a person who has been there, done that and a LOT. I am not the easiest patient to be around either. That's just factual. I wonder often if nurse's draw straws to see who is assigned to me. YIKES! She's been on YOUR side of the bed and I know - it's not easy because not only do I have epilepsy but so did my father, then my son, and now his daughter. So I've been on both sides and it is not easy - either way. I hope I've given you suggestions though to help you gain some tools to ease both of your (dare I say it because my daughter detests it when I do say it) burdens. Your caring, roll you've chosen is difficult. I admire you for the love and caring you have for your mother. Believe me and I know, you might think your mother doesn't know you are there all the time, or may seem to be oblivious to the importance of your concern and all you are doing if even just being there, but she does know and that support you are giving, concern you have, is immensely reassuring to me and I know it is to her. Pat yourself on the back and give yourself a big hug, you deserve it.Gretchen