Hi all, I met my wife Jayne 30 years ago and she had Uncontrolled but manageable Epilepsy, mainly absences and Complex partial seizures. She commuted to London and was an AA in the Civil Service. I thought I knew about E as my Nan had it. She was offered medical retirement and accepted as the department were unwilling to dealb with a crisis with every med change.Over the years the Epilepsy became more severe with over 300 seizures a year the highst and severity with Atonic secures adding lots of injuries including 5 back fractures, broken jaw, brain hemorage and severe leg scolds needing skin grafts.
As the medications increased so did a mood disorder which has had several name changes including Bi Polar, Scitzoid Affective Disorder. Eventually an attempted suicide led to Jayne being in full time care, several sections in the 1st year and only weekend and holiday visits home for the last 16 years.
Amazingly our relationship has remained strong although changed, as I almost feel like I am a father at times as she seems to be losing in her ability to maintain personal care. Also this year after a stroke in March she has gone down to 55Kg after almost stopping eating.
I guess over the years we have had lots to learn and as a carer I should be an expert by now but it keeps me humble, as just when I have cracked it there is something new to learn.
I guess if the average person read all this they would thinkI would want out, or we would have already split however, I really appreciate the little gestures of love, a touch on my hand while I am driving or the look or welcome I get when I go to collect Jayne get. The way Jayne shares how we met to everyone she meets. She makes me feel like her hero nearly every day.
Hi John
Welcome to the forum.
I certainly don’t feel you should have split from your wife! Love is love after all, even if rose tinted glasses fade. You have a lot to cope with, and Im wondering if you get to do anything just for yourself?
My situation is different to yours ( in a way) as my lovely husband is in a nursing home because of strokes and vascular dementia. Sadly, I cannot take him out, have him home, even for an hour. He doesn’t remember our home. I have some lovely greetings at times, very often he wants to know how on earth I found him! So far, he never rejects a kiss, although he doesn’t ask for one now, as he did sometimes when first in the nursing home. We’ve been married 50years.
So do keep posting, as the forum is very supportive, different issues with each one of us, all painful in there own way.
Roll call is a good place to have a read, and take part, as it’s a bit like a chat over the garden fence.
You sound like your experiences may help others too.
Hi John, welcome to the forum.
Your love for each other shines through.
Do you get any help at all? Have any electronic gadgets to alert you to a seizure?
Someone else here was asking about such devices, and it strikes me that you must count as one of the most expert carers in the country on the subject?!
I’m sure this is, to you, a dubious distinction!?
Thanks for reply, yup I do some things for myself like running, volunteering and some courses, also going to work helps sometimes. Congratulations on being married 50 years, I will have a look at Roll call thanks.
Thanks for reply Bowlingnun, Thanks so much for your comment on me being an expert carer, its easy to forget how amazing we are as carers, especially when things not going so well.
Because Jayne is in care for most of the week I don’t have any extra care, actually its a pleasure to have her home. I get moral support from Jane’s family and my family.The previous care home had bed alarms but they are not much good when Jayne has a fall out of bed. The new care home has an intercom and her bed room is nearest the office so they keep an eye and ear on her.
