As I have mentioned in earlier posts such as ‘My Spouse and My Caregiver’, I had questioned whether a spouse could also be a caregiver. I believe that it is possible, but only if the spouse is well aware of what they are getting into.
It was not until well into our marriage that my spouse and I realized many of the problems and issues associated with epilepsy. We were a little naïve about the condition when we got married. When I started having medical issues about two years ago, my spouse assumed the role of caregiver because of obligation not choice. I was undergoing a change in medicine, which took a considerable amount of time to successfully finish. By that time, my spouse was a nervous wreck after witnessing many seizures. We both experienced some trauma as a result. At this point you may be thinking that I’m blaming my condition for what happened, but I’m not. It did not make things easy for either of us, and caused trauma on both my spouse and myself.
We might have been able to deal with the issues related to epilepsy if we had more common interests and goals. In the years we had been together, our interests and goals have slowly changed. It had been so gradual that neither of us really noticed. I found out a lot of information about myself with a gifted therapist assistance, which I consider to be an essential part of one’s care team. The eventual decision to get a divorce was mutual. The relationship that we had at the time was not one of husband and wife, but something else.
I find myself attempting to set up a life for myself that is not too dependent on others. I don’t want a handout from anyone, and want to succeed on my own. However, I live in an expensive city full of extremely competitive people. Would the stress be worth it? Moving closer to family is always an option, but my pride is stopping me. I am currently attending graduate school and want to finish with a degree. I feel as if my self-esteem needs this accomplishment.
(This was posted late due to lack of internet access)
I made it to the airport with plenty of time to spare, but many negative thoughts were floating through my mind including every possible worst case scenario imaginable. However, I was determined to fly by myself and without any help.
So I tried to think of a few positive thoughts. I thought that security would stop me to search my luggage and take away my medicine, but that didn’t happen. I thought that I would have to make an emergency phone call to my neurologist, but that didn’t happen either. By the time that I got to the gate, I was starting to believe that this might go well.
When I got into the airplane, I started meditating almost immediately. It was difficult to maintain because there are so many interruptions on an airplane such as: the people sitting next to you or the flight attendant. I made it to my final destination without any seizures!
Success! A year ago I probably would have been calling my spouse and caregiver for help on the smallest of decisions. I flew to my final destination by myself and didn’t call anyone for help. Being dependent on people is not a bad thing. However, in my case, it had paralyzed me to the point where I was not making many decisions for myself.
What do you think?
According to http://www.engadget.com, it’s a smart phone/wristwatch combination that acts as a motion detection unit. The device is only for those who suffer from tonic-clonic seizures, and it’s not a universal seizure detector. However, the company’s clinical trials with the device are ongoing, and Smart Monitor will submit it for FDA approval as a tonic-clonic seizure sensor later this year. For more information:
I have yet to see how helpful this device will be, but I believe that it is a step towards independence for some people with epilepsy. Soon technology may advance to the point where a similar device will be sensitive enough to detect other types of seizures.
I had several problems over the years with doctors switching me to different medicines whenever I moved somewhere.
Part of the problem was lack of information. I should have been recording the following information: ALL of my medicine changes, hospitalizations, seizures, and any relevant information that would help a neurologist figure out what is going on. Many people who have epilepsy keep an epilepsy diary in order to record this information. I was not doing this and my doctors were having problems with my treatment as a result.
My spouse and caregiver had the brilliant idea of organizing all of my medical records and recording it in a spreadsheet. They were spread out over several states, so this was a massive undertaking. We then organized the epilepsy-related information from my medical records into tables, graphs, and charts. If my epileptologist needs it, I can print it off or email it. (Not being sarcastic, my epileptologist loved the spreadsheet!)
Has my diary been successful? Absolutely! My care team has often used it to find out what medicines I have taken and why I stopped taking them. I have also used my diary to find out other useful information. I feel more empowered when going to visit members of my care team when I bring it along.
Is it possible for a spouse to also be a caregiver? I have talked to some couples and they are able to do it. I have also seen that among couples where one of the spouses has a chronic illness the divorce rate is very high.
The reason why I mention this is because my relationship is having problems. I underwent a long series of medicine changes that didn’t always work out the way I had planned. The number of seizures I was having went up significantly. I lost my job and wasn’t able to find another one until we found a reliable medicine. We had faith that the doctors would eventually find the right combination for me. By the time that happened, my spouse and caregiver was a nervous wreck and completely stressed out.
However, we are both doing better right now. I am doing meditation as another way to help keep my seizures under control by managing my stress more effectively. The rest of my life has started to turn around as a result of my new confidence in myself that I temporarily lost during the medicine change. My new positive attitude is starting to reap positive results in my life.
I have just recently heard the phrase “Care Team” when referring to the group of individuals that help me manage my epilepsy. A care team can involve: your therapist, your specialist (neurologist, epileptologist, etc.), your primary care provider, and most importantly your caregiver as well as other members of your support network. I believe this phrase is named perfectly. Why? All of the people mentioned above should be working together as a team.
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