Epilepsy is increasing among seniors as the baby boom generation reaches retirement age. More than 570,000 adults age 65+ have the condition. This group is for them, their caregivers, and loved ones.
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
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17 days ago
So Epilepsy just really sucks.
My husband cannot drive, work or do many of his hobbies right now. For 2 months they have been trying to get his seizures under control.
He is depressed and lonely.
I am driving a lot. We live an hour away from the nuero and he is seeing a counselor too to try and deal.
We have lost his income and I have no more paid time off. I had emergency surgery earlier this year and used most of my time in the weeks after.
Of course he can't get private short term disability because this was a pre-existing condition and in order to get social security the doctor had to think he will be out of work for 12 months or more. We all certainly hope that will not be true.
So in the meantime we are stuck and he is feeling trapped.
But underneath all of that I am just grateful. Grateful that he is alive. I mean I know I should probably freak about the money and all of that but he seizures were so out of control, I didn't know if he was going to make it through some of them.
I am thankful that they finally found a medicine that got them mostly under control.
This is a lot for a human to deal with. So to ask of my fellow caregivers out there, hang in there. You are not alone.
6 months ago
Hello, I;m an only child caregiver to my elderly mother. She has epilepsy and no drivers license, and she lives alone. Im very thankful that she is still pretty independent that she remembers to take her own medicine, bathe and dress herself, prepare small meals, and do light housework. I'm still in charge of paying all her bills, scheduling and taking her to Dr appts, calling in medicine refills and picking up medicine, buying groceries, and hair appts. My father is passed away, and I have no siblings to help. My husband helps sometimes, but he still has to work full time, so I'm mostly on my own. I have no social life because of being a caregiver. I worry about my mother getting worse and the future of caring for her.
about 1 year ago
I've been in a relationship with my boyfriend of 3 years who is epileptic. He does not seize very often, only once or twice every two weeks, but the effects of the medication and depression have compounded and created a great hopelessness in his life. He has basically stopped caring about everything, and is bordering on suicidal because he feels he cannot work, and of course has to deal with normal limitations of being epileptic. He moved in with me to continue our relationship but says that he is miserable and just spends his days very bored and stressed over his lack of ability to control anything in his life. Despite all this I am very much in love with him. He is incredibly intelligent and I just feel that it is such a waste for him to not be able to work or live his life to the fullest. But doing so is not easy for me to figure out. We do not live in a metropolitan area where he has access to public transit and an abundance of jobs. Though between his mother and myself there would be transport available to him for anything he needed because she doesn't work and I work third shift. The main problem is that he has given up and that he does not feel that he has any options. I don't know how to inspire him. I can talk myself blue in the face and nothing seems to work. Sometimes I see a smalll breakthrough and he gets interested in work again, but he quickly reverts back to hopelessness. He has little pleasure in his life because he puts so much of his identity into having a job. He also has a chronic pain condition that he developed after having a couple of very devastating grand mal seizures. I am bipolar and I have benefited greatly from support groups, but I can't get him to go. I have tried finding work at home opportunities but I can't seem to find legitimate ones or any that he would be interested in. I always tell him that he's not alone, but he is self-isolating because he is so unhappy with himself. I think about it constantly, this is the person I love and as much as he can give up on himself I can't give up on him. He deserves a better life and I would give anything for him to achieve it. I would love to hear from any of you in a similar situation with any solutions that you might have found or any options you have discovered as a result of having epilepsy. I am open to nearly anything at this point and I need support as well. This is a difficult road for both of us. Thank you to anyone who takes the time to share a comment.
concerned ex said...
over 1 year ago
Another question for the group. Home health nurses are now coming to my ex's house twice daily to give him his medications. I helped set this up with the doctors and social workers at the VA hospital; I spoke with the manager prior to his discharge and arranged the first eval. Now, I'm being told the nurse can't talk to me because my ex--for whom I still serve as medical poa among other responsibilities--doesn't want her to. Is it really legal for the assigned nurse--who didn't show up until 4 days after the original first date of service-- to refuse to talk to me about his case? Especially as my number was the only phone number on the doctor's request for service?
An anonymous caregiver said...
over 1 year ago
My ex, for whom I'm still responsible, has very severe epilepsy compounded with dementia and an underlying personality disorder/depression. He's only 66, but for the past two years has been hospitalized over 8 times--one of which was 3 1/2 months as part of an induced coma. The problems are compounded tremendously by his falls, his temperament, his confusion, and his unwillingness to accept help in matters where he desperately needs it. Now he's home from the VA hospital again--I picked him up a week ago--and living with a caregiver whose plan is to marry him. She's known him for just 6 months and moved in as a renter. Because of his dementia, he forgets the careful protections of his finances I struggled to put in place as his DPOA, and with whispers from her, strides into the bank demanding to take the money out. So now, a confused, completely vulnerable man is walking around with a great deal of money in a cashier's check in his pocket. Due to her promptings, he no longer wants to talk to me; I can't reach him and all calls must go through her. I need help; I can only do so much and I also am the primary caregiver for my mother, but I feel certain this woman--and the young man living in the house not paying rent who seems to be working with her to keep me away--are planning something that will leave him without assets or even his house. Yet, the police have told me they are helpless to stop a crime that may or may not happen. What can I do?
almost 2 years ago
There is a really good legislation in California for access to epilepsy medications. Marie Waldron is the legislator that suggested this legislation. She has a family member with epilepsy. She needs emails or letters of support so that other legislators will vote to make this legislation a law.
Please call or email Marie and voice your support for Access Bill 68.
almost 2 years ago
I am 65 and have had petit-mal and drop epilepsy since I was a child, I don't take medication for it, the meds that was prescribed , when I was diagnosed when I was 16, did more harm than good, I only had/have seizures occasionally when stressed or very tired, sometimes it seems like certain foods bring it on. I have learned how to control them with out taking medication. when I am having a seizure I start having a stomach ache/cramps, go to the bathroom before I can have a movement, I will break out in a sweat from head to toe, get very nauseous and pass out, I have crashed into the sink before leaving bumps and bruises on my head, when I feel like I will pass out I just lay on the floor, when I come to I have a headache and am very exhausted. As I said earlier I have learned how to stop this, it may sound strange but I read somewhere, to flex a muscle, I do this by pinching my thumb and index finger together as hard as I can, the cramps pass while I do this and the seizure will pass also, I hope this can help others. When I was a child I would just pass out any time, also had the blank stares. I have been very lucky and only once had to lay down on a public bathroom stall floor, not very sanitary, but better than passing out all the way. When I pass out it is a horrible feeling, it may only be for a few minutes but it is the worse few minutes of my life and I pray that it never happens again. by the way I am a caregiver by profession and have lived a pretty normal life in spite of the occasional seizures .
almost 2 years ago
I have a 24 year old son who started having seizures at age 14. At this point I want to know how I can help him transition into a situation where he is independent. I am a single mom and his father does not help. I have to work and I want to know if there is a program or adult daycare where I can take him daily so he can be safe.
about 2 years ago
iv been dignosed with petite mal grand mal seizures when i was 7 i started having them when i was 2 since age 7 i have had seizures everyday some sent me to the hospital two of them sent me into a coma they are still not controlled with meds i have my nurology apoinment feb3 wish me luck i could really use someone to talk to
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