No help from epilepsy association for something so needed

Hello, can you please tell me how is it when you call the epilepsy association itself, and explain you have epilepsy and ask for help to find a residence or nursing home, you are told they do not help cos they do not deal with it, due to having epilepsy does not mean you cant live a normal life. And this was after explaining me having had to give up my job, own flat, car, etc, that I had, as my parents are late as well. And I also had the surgery just 3 years ago.

More so, I wasn't even asking for something free. I have been medically boarded, so I do have a monthly income as well as my own medical aid. I am also involved in volunteer work, such as care clowning at the Groote Schuur Hospital with the seriously ill children that are admitted in the hospital.  So I am able to do voluntary work. However, recently there was a change in my medication and I am now having my seizures in the day as well, therefore I am searching for something soon. What's most silly is the epilepsy association does not help in this matter, since memory is the worse and with the actual seizure itself, we are not meant to be alone. I would really like to be more involved. But for now can I please be helped with a residence for myself. I am 42 years old, single, with no kids and have a monthly income and my own medical aid. Thank you, Saloshini Chetty

13 Replies

  • Hi Saloshini, 

    Please note Epilepsy Association cannot cater for everyone that has epilepsy. You are one of the lucky ones that has a salary and is on a medical aid... Most of those with epilepsy have neither. It is not the duty for them to find you a residence... They are there for advice and moral support for the one in 100 people in South Africa that have epilepsy.  Many are not medically boarded and have to survive on a Disability Grant through the local Govt. if they are lucky... This does not happen for all. 

    Good luck. 

  • Wow! Lesmal, here again your reply shows how awful and rude those in the epilepsy association are being. I wasn't asking you to cater for me. I was asking for help! Something I was not able to get. Something that I was searching for, for so long. More so, I may be one of the so called "lucky ones" that has a salary, however the prices of residences out there are ridiculous. My monthly income is nowhere near the prices I was seeing. That is why I was asking people involved in the association for help, hoping they would know of homes and in that price range. There are definitely many homes/residences out there. And Its not me being picky and choosy either. I did mention my parents are late. So its not as though I have other choices. The last person I spoke to in the association doesn't even have epilepsy. Perhaps try to include those of us that do have epilepsy and can understand and be more kinder to those with epilepsy.

  • I have had epilepsy for over 35 years and I do not work for the Association or connected to them in any way. My comments are from a personal opinion. Thank you. 

  • Hello, so how can you reply for them in terms of them not helping every person that comes to them.  That's what an organisation is about.  Even with you mentioning my luck with cash and medical aid. My parents were not able to afford me going to a college when I finished school, but it didn't stop me from working hard enough to be in the position to be medically boarded when I was diagnosed with epilepsy.  Motivation that is now being given to all spoken to.  I am also involved in volunteer work. Not just saying I have epilepsy and sitting down. And I get my help in getting about.  However, with living on my own being a no, I have been searching for a residence. I was/am able to afford to live on my own, but is not a choice. There are others that have the help of their parents. mine are late. So please be a little more understanding when you are going to give replies. 

  • The site is for everyone to respond... Whether personal or not, and whether with the Association or not.

    Thank you!

  • Kindly leave me out of your discussions. 

    Thank you.

  • I definitely will.  Cos if you read your first message to me all mentioned was how lucky I was  how unfortunate everyone else is.  Not something as simple as sorry I am not able to help you or not reply at all. 

  • Please leave me out from your side. 

  • Dear Saloshini Chetty

    I am not quite sure how application to such homes work. You may need to apply directly to one. I assume you contacted Epilepsy SA in Lansdowne directly - Who did you speak to? They should at least have given you some guidance on where to go.

    You may email the Director Epilepsy SA Western Cape directly - Wendy Nefdt: tel: 021 7039420. She may be able to advise on where/how you go about looking for accommodation. I do know that there are PWE living in homes that earn disability grants and also earn money on the side.

    You appear to be fairly able bodied - how frequently do you have seizures. Maybe consider looking for a self catering flat type accommodation in a secure home environment. Even a retirement village such as those run by Faircare, Communicare Group, etc. Huis Nuweland, Cle du Cap. Communicare hasa very large place off Myburgh Road, Diep River - bachelor type units, with care centre.

    It may take some searching on internet. 

    Regards Tim

  • Dear Tdevilliers, I have contacted Epilepsy Western Cape directly since and mail with Wendy Nefdt. I have sent in my application and always had delays. I was once asked for all of the information as there is a room available. I did not get any replies. when I contacted them again, really excited that a daily job in a working setting was being done and I will be doing it. When I asked again about it just the other day I was asked for my ID and told they will get back to me soon as they have a few other ladies applications to look at as well. I did have my own flat, but I had to give it up due to the number of seizures a day. And me not being aware when I was having one. Last year I was in an old age home in Durban, when I needed to quickly find a residence for myself. The residents there were so old that they were in nappies again. Therefore communication wasn't so easy. So please see that I am trying really hard. What's also always being mentioned is the amount of money I receive every month compared to the others who Only receive a disability grant. It is something I worked really hard for. When I finished school I could not afford to go to a university or college. I started working in a shoe factory. In the factory itself, not the office. But it did not stop me from moving forward. I went overseas, but as an aupair. No money for just a holiday. Before being diagnosed I was with a large company for which I qualified for these benefits. Once again something I worked really hard for. Starting off in the call centre and moving up. When I was first diagnosed I did not give up and just enjoy the benefits. I asked to go back and was tried with data capturing, that didn't need my memory so much. There again I was not able to cope and therefore had to leave again. so the company is also aware of me trying really hard. The residences I have contacted so far have such huge prices. I received one today asking for R13000 per month. I can afford up to R6000 per month comfortably, as I did mention my parents are late and I have to compensate for all that I need for myself by myself. Therefore, I was so grateful for the price at the Cape Karoo branch as well as so seriously being involved in the day, with things that are necessary and not just to be active in the day til it ended.

  • Dear Saloshini

    Please can you make contact with the Epilepsy SA Western Cape Branch.  I know you have problems with memory.  National office have provided assistance and due to your request  National office than referred you to the Epilepsy SA Western Cape Branch and they have provided you with information. 

  • Dear Chetty

    We have communicated before and I have given the best advice possible. Epilepsy SA just simply does not have the means or capacity to take care for everyone's needs. You know how little the Govt supports NGO's. You are in a much more fortunate position than most others in that you have an income and relative balance in your condition. ESA does not have a residential care facilities in the region and offer support where possible in many other ways, such as workshop, skills development, counselling, etc. Most people do only have grants to survive on.

    Residential care homes are not easy to get into because they are pretty much occupied by people who have very little. Us, who have an income, need to fend for ourselves with the guidance of family, communities, etc.

    You need to get involved with a social/community activity group i.e. anything that interests you and get to know people, who may be able to assist. I belonged to a Church and I also joined dance classes, where I made a lot of friends. I had the benefit of a supporting family and a full time job, but having a circle of friends made a big difference to my life. You may find people there that may have contacts. All about networking. My wife and I joined a cycling club as it is one of our sports and we have met a lot of people.

    Best advice is to put yourself out there and start networking - don't wait for Epilepsy SA to do it for you as they do not have the capacity. Unfortunately, there is no longer a support group in Cape Town.

    Have you considered starting an Epilepsy Support Group - I often receive request from people looking for one. I founded and ran Epicare for 26 years, at a time when I still was quite negatively affected by epilepsy and at a low point in my life. I closed the group as I no longer had the capacity for it and attendances dwindled. I had my own monthly newsletter offering up to date developments from across the globe, personal stories from members, etc. It was a huge turning my life in developing confidence and self esteem. A group does not need to cost much and Epilepsy SA will offer guidance and support and will be happy to have association as it will be an arm of support to them. Starting a group is creating a plan, discuss with ESA (if you wish their support), placing an advert in the local paper, asking ESA to circulate the advert as well.

    I can go on, but am in office and need to get on with my work.

    All the best Tim de Villiers

  • Hello Tdevilliers, please read my request from the beginning. I have done all of what you are saying I must do. I mentioned my parents are late. I did have my own flat, car, job etc. Also with the monthly income that all of you are going on about how lucky I am to get it, I am not able to use it for my own flat anymore. I would love more than anything to get completely involved with the epilepsy association, as all of you go on about how poor assistance they have etc, but are not accepting help. The biggest problem of mine is getting from point A to point to point B. As I mentioned I had to give up my own car. I then got around with the train quite content, until I had a seizure on the train and ended up with a broken nose and front tooth. So the train on my own is no longer a choice. I also mentioned I am involved in volunteer work. We go care clowning to the seriously ill children that are admitted in the Groote Schuur Hospital. You have the support of a wife and family. my parents are late and I am single. All that you say you accomplished was for you to be able to get to what you had to do. Apart from being involved with The Upliftment Programme I do care clowning with i also had Spirit Sisters who does Simcha on SABC give me a chance to join them to keep myself busy. So I do know how to be active and get involved in. You also went on about me having a bigger income than those that only get a little income and therefore I can get more. If you look at all that you are capable of doing and have been doing, how much did you have to have /earn in order to live so comfortably? So please think about all that before you give some answers. If I am able to afford all you joined and is doing it will be as simple as me getting a live in nurse. I also need to leave now. So please offer help and not just find negative things to pick on. Thank you, Saloshini

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