Sister died in her sleep - SUDEP

[caw]

My sister passed away suddenly and unexpectedly on the 5th June this year - I was in my 3rd day of training for a new job when the trainer asked if she could have a word outside. When we got to the door I see my Mum on the otherside crying - I knew straight away it was bad.

My sisters husband had come home from a night shift and found my sister not breathing - he attempted CPR and a community first responder and ambulances got there quickly but it was a while too late. Her little girl (6) had luckily slept in her room all night and not gotten up or gone to see her Mum/My sister.

The cause of death was recorded as SUDEP - Sudden Adult Death in Epilepsy - She got Epilepsy when she was about 14 - I am 2 years younger and witnessed her first seizure - I was awoken in the night by an awful sound which I can still hear perfectly to this day and when I turned the light on it was a very scary sight - I ran to wake my mum and not long after this first seizure my sister was diagnosed with epilepsy.

For a very long time it was nocturnal only - I could not cope with it at all and distanced myself greatly to the lengths that when we went abroad on holiday I slept in the bathroom as I was too scared to witness it again. I never really expressed my fear to my sister or my mum...or anyone.

Now that this has happened I am left with guilt, anger, and anxiety. We were never made aware that she may die suddenly or unexpectedly one day - we all always worried about injury from seizure as she had had some bad injuries this way but we never for one moment suspected this. Some people live with epilepsy their whole life so why would we think that only 14 years after being diagnosed that she would be taken from us so suddenly. I always thought I would have more time to make up the wasted years where I distanced myself - epilepsy also changed who she was slightly in my opinion, her behavior characteristics and mannerisms and this made it harder for us to bond.

I have been burying my head in the sand and I continued to do my training for my new job which I am sure to alot of people looked selfish and uncaring but my body and mind was in autopilot and denial and all the time I carried on this just was not happening. I managed to pass all my training and mentoring and started the job - the job is a very stressful one in the healthcare industry which further highlights to me the danger and tragic events that happen in life and now I cant bare the thought of it - I feel my grief and feelings that I have been burying since it happened are all starting to come out and I dont know what to do at all.

Any advice or anyone with a SUDEP bereavement would be appreciated.

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[ModKonnie]

Caw, I am so very sorry about the loss of your sister. As you know in the healthcare industry, self care is essential. Check with your work (perhaps Human Resources) to see if there is an employee benefit for counseling or an employee assistance program that offers support and encouragement for those in need. Let your feelings come out, and don't be afraid to hide them. It's okay to cry and be upset in the wake of such a profound loss. Others will understand, including your supervisor. Write about your feelings or join a group--you will feel better once you begin to process and deal with your feelings. Feel free to share how you feel here--we will be here to listen. It is very important that you deal with your emotions now so you can heal and learn to live again. --ModKonnie

[pallen83]

My mother passed in her sleep also it will be 1 yr this month she was 46 and it hasn't been easy I can relate to what you are going through and my heart goes out to you and your family.

[caw]

Thank you for your replies

ModKonnie - I took some time off after my post and have been in touch with occupational health who are helping arrange a phased return. They have given me numbers for on the phone counselling however I dont feel ready yet. I am still struggling with all the questions like why then, why now, why her, why werent we there etc etc. More answers than I will ever have questions for.

Pallen83 - I am very sorry for your loss. I hope that you have lots of support within your family and that you are helping each other through. The suddeness of the loss for me is making it so much harder - no goodbye or warnings!!

[Nadia94]

My brother would have been 23 this year he died about 2 months ago from the same thing.

He was autistic and developed epilepsy at around 13 (apparently it's common for kids with autism to also get epilepsy). He always took his epilepsy tablets and he did have seizures every couple if months, like you said it was more the injuries from a seizure that was a concern like sometimes he would be walking around the property we live on and just drop and seizure busting up his face etc. but just out of the blue he had a fit during the night and died. My dad found him the next morning and tried to revive him but there was nothing he could do.

I remember when he first had a fit as well at night time I was woken up by this sound and it was always stressful a stressful an traumatic thing. But I never ever ever thought he would die from it.

I don't even know how to deal with a death that just came so sudden and out of the blue.

I'm just so shocked I came upon your story while trying to console myself on this site.

I'm so sorry for your sister

[Helia]

Dear Caw,

 

I m truly sorry for your loss. I understand in some sense, how you feel. I lost my sister when I was 13, she was 3 years younger than me. I dont know about the health problem your sister had. My sister dies in a fire accident. I completely know this feeling that you tried to bury your grief to be able to live but it is still there and it comes out in different ways and moments.

 

I wanted my sister to live, and to live happily and at the time the accident happened, I was asking myself why should this happen to her? to my parents? I did never find the answer to these solutions. However, I did something wrong which troubled me emotionally to date; I tried to be strong! to make sure my parents do not worry for me and to stop people feeling sorry for me. But now after 19 years, I arrived to maximum capacity of tolerating anything sad. I cry when I hear someone died, even if  I dont know them and I imagine being their family or friend and I grieve! I think to some extent feeling sympathy for others loss is normal but not what I do. I even cry for death scene in animations or comedy movies. I ve become an angry person and very disturbingly, I cant sleep well. I see lots of bad dreams and often wake up with scream.

 

I have just recently started therapy and it is very helpful. I would like to tell you and so many others I read their posts in this website; it is normal to be sad and feel lost after the loss of your loved ones. Dont be harsh on yourself, dont try to be strong; you are going through a lot. Bravo to you to search for professional help and to openly share your feelings and thoughts with others. Do not keep your grief to yourself. 

 

God bless you and I pray that your sister rest in peace.

 

Best,

Helia

[Lousam]

Sorry to hear of your loss. On 20th August this year when going on my break at work I encountered my husband and daughter at our reception I knew instantly something was wrong as family members had being trying to phone me but I couldn't answer my phone. It was about my sister she had passed away during the night from an epileptic seizure. She had suffered all her life from them and it was getting worse over the years. Her doctor had sent her for so many tests and tried so many drugs. She could tell when a seizure was about to hit as her leg would start shaking. Her seizures would happen at any time of the day or night and her children coped so well with it knowing what to do should mom have a seizure in front of them. What I don't understand is her husband was in bed next to her all night could he not feel she was having a seizure. I only hope that she did not suffer. It's being very hard these past 2 months to get over her death.