Mary Jane is a selfless caregiver of her husband and daughter. She shares some of the struggles she has encountered on this journey. Daily she demonstrates what a hero looks like. I hope her story will inspire you.
Fear of getting unwell
Written By: Mary Jane
Keeping on alert all the time can be exhausting and tiring. My husband was officially diagnosed in 2010 with Systemic Lupus Erythematosus and our daughter was diagnosed in 2013
They both suffer badly and daily from this terrible disease my husband stopped working Christmas 2013 after being hospitalized due to the lupus attacking his spine this has created stress but also is easier as now I don’t worry about him driving he has since had a number of TIA‘s and neurological problems has spent 7 out of 12 months in hospital he is no longer able to drive as he forgets where he is gets very disoriented easily, also his medication does not allow him to be able to drive safely.
Our daughter was able to get an extension on finishing her schooling she has been in and out of hospital due to kidney problems also caused by the lupus but she is able to do her college degree from home when she feels she’s ready. The lupus for her has changed her but also changed her relationships with her friends, as a lot of people in their early 20s are able to do their own thing without thinking twice.
We have two other children that help out a lot but they also take on a lot more than children their age which as mum I worry about as its not normal for people their own age to be concerned about dad falling or their sister being able to get through the week without her kidneys being unable to function.
I also home school our younger two children as God lead us to do this 4 years ago and now I understand why as it actually is easier for me, that way I can stay home more and watch over my sick husband and daughter. It also makes it easier for our children as they see what happens on a daily bases and when they have to go to hospital its easier for them to keep the daily routine going they also take it in turns to look after Daddy by doing their days worth of school in his room where he is as hes unable to be out of bed a lot also if he is in hospital they take their school with them to do and it helps him to not feel left out.
As a care giver of two with Lupus it is difficult to balance the daily things that need doing but also not being to busy to not have any compassion and care.I now notice that I do get tired but I will never tire of looking after them as I married in sickness and health.
The health is the easier part the sickness is the test part I miss my husband hes my best friend but his memory is very bad now and I have to try not to be offended of feel rejected when he doesn’t remember anything that we did together or I did for him. He gets very anxious when I’m not around or if I have just gone to the chemist and he wakes to the children here but me not which makes him very anxious.
Also as a mum I must always remember that my daughter relys on me to be mum but also to know what to do when shes unwell, or a doctors appointment, or when someone is putting pressure on her like a friend wanting something from her that’s just not possible as her friends have been able to get engaged or go out as a young person I know shes watching it all wondering whats going to happen but I also pray that she is able to trust me and know that I will always protect her.
And for our other children they are fabulous at helping but I always have to keep in close balance that they need mum. It’s a lonely road for a carer your constantly putting fire out and constantly watching for things that never had to before it puts a strain on everything.