My story by Samantha Campbell
I am in my late 30’s and my husband is in his early 40’s. I never thought I would ever have to be someone’s carer, especially my husband’s.
I started to have to care for my husband a few years ago. It started of with me helping him up and down stairs every now and then, but as my husband’s health got worse my care role became more. Now I have to help him in and out of bed/chairs, help him wash in the shower, get dressed, etc. Because he’s unstable on his feet I assist him while he uses a stick to walk. I have to help him up when he falls, make sure he’s not hurt, etc, and reassure him when he’s having panic attacks. I even have to restrain him when he’s trying to hurt himself. When he’s having really bad shakes or suffering from muscle pain and/or paralysis I have to help him eat/drink because he can’t hold his knife and fork, cups, etc.
Due to the extreme exhaustion and pain his ME and Fibro cause after even the smallest amount of excursions, its also down to me to do all of the cooking, cleaning, washing … even cutting the grass, etc.
There are several different reasons why my husband stumbles and falls, too many to mention here, but below you will see a list of my husband’s health problems/conditions.
Here’s a list of my husbands health problems/conditions:-
q Myalgic Encephalomyelitis (ME)
q Fibromyalgia (FMS)
q Several displaced vertebrae in his neck
q Dehydrated muscles in his neck and left shoulder
q Cervical Spondylosis (coupled with the above this also causes numbness in his arms with painful tingling in extremities and muscle spasms)
q Thoracic Spondylosis
q Chronic pain in lower back, the cause of which is still being investigated. This also causes muscle spasms and extreme pain in right and left buttock and legs.
q Osteoarthritis in both knees
q Osteoarthritis and limited mobility in left foot caused by his left foot being shattered in a motorcycle accident in 1994.
q The side of the foot was also torn off (replaced with a large skin graft from his thigh), tendon and major artery severed and the big toe partially severed.
The above causes him constant severe pain and his knees often buckle causing him to fall. He also has a neurological problem that makes his head think the floor is the wall and causes him to fall backwards without warning.
He also suffers from Anxiety, Depression, Agoraphobia and gets really bad panic attacks, mood swings and weird attacks that leave him hyperventilating, drenched in cold sweat, heart pounding, vision blurred, dizzy, disorientated and unable to move (these are different from his panic attacks). His ME can cause sudden onset of extreme fatigue and/or muscle paralysis which will cause him to fall very suddenly.
My husband recently saw a consultant Psychiatrist and he added to the list with a diagnosis of:
q Conversion disorder (non epileptic) seizures
q Panic disorder
q Mixed personality disorder
Everyday tasks that most people my husband’s age take for granted, like getting dressed or having a shower, are just a few of the things I have to do for him. Not only do I have to help my husband with these kinds of tasks, I also have to be there for him emotionally as he has mental health problems as well.
I could give you more examples of what I have to do for my husband but I think you all get the idea.
We still have a romantic relationship, but it is different. I can’t explain it, but it’s just different. I don’t know if that’s how it is for my husband, but that’s how it is for me.
Some days it’s like living with a friend rather than a husband, especially when he is having an extremely bad day. Sometimes I think maybe I should not be his carer because I am so protective of him and so close to him. But on the other hand, maybe I am the best person to take care of him because I know him so well and I do and will notice changes in him. This is not to say that some days I don’t just want to walk away and not come back. I think it’s quite natural for anyone forced into this sort of situation to feel like that.
But it also felt almost natural for me to become my husband’s carer. I’m told I have a caring nature to me anyway, but I never thought I would end up being an actual carer. Being a carer has affected me in so many ways; some good and some are bad.
It has shown me that I am a strong person and I am capable of dealing with certain situations, like when my husband is having a seizure. Sometimes when I read through my blog, I almost forget it’s me and think “how does that poor woman cope with all that going on?” and then realize it’s me!
But on a more negative note, my husband’s health and the fact that I’m his carer has taken its emotional toll on me. I have always suffered with depression and seeing my husband’s health get worse and just having to process everything has done my head in a bit.
I don’t want any of you to read this and feel sorry for me. Yes, I had little choice at first in becoming my husband’s carer, but I have chosen to stay his carer.
I want people to know that a carer can be anyone of any age/background and becoming a carer can happen to you suddenly, like it did for me. I also want people to know that, yes, being a carer is hard and you may think you can’t or would never be able to do it, but you can do it because like me you will find an inner strength.