Who Cares?

Until my Nan went into a Residential Care home in 2013 my Dad was the person who looked after her, going round to see her every day of his life.  She had Social Services Home Care workers go in 4 times a day to help her get up, bath her, feed her lunch and dinner and put her back into bed at night, but my Dad did everything else including all her shopping, washing, paperwork, taking her to hospital appointments (which were numerous) and, when she deteriorated, regularly being called out at all hours of the day and night when she fell and couldn’t get back up.

The strain was immense but my Nan was lucky that my Dad at that time was fit and well and able to manage.  He was, however, flagged as a Carer and had an assessment of his needs as a Carer.  He was regularly monitored to see how he was coping and offered the choice of attending support groups to chat and socialize with other Carers because it’s well recognized that taking on a caring role is incredibly stressful and exhausting and can affect both the Carer’s physical and mental health.

I am now in the same position as my Dad.  My Mum is very physically disabled: she has half a lung, is in heart failure and kidney failure.  On top of that she’s an alcoholic so spends most of the day drunk and confused.  My Dad has been suffering with the symptoms of Dementia for 2 years now and is becoming ever more child-like in his ability to cope with day to day life.  As yet they don’t need care to bathe or feed themselves (well, actually, they do and Mum only showers once a week now as it nearly kills her) but they need help with everything else.  I do their shopping, all their paperwork, look after their home, do most of the driving and take them to all their hospital appointments.  I speak to them every day, sometimes several times a day, and visit them 4 days a week.

The difference between my Dad caring for his Mum and me now caring for my Dad is that I’m not fit and well, and actually need help and my care myself.  Which I don’t get.  In fact during my 22 years of chronic illness I’ve never got.

I took my Dad to see the Older Person’s Psychiatrist yesterday for the results of his CT scan.  We were there for a good 45 minutes discussing my Dad’s issues and the amount of care both he and my Mum need and not once did anyone ask me how I’m coping.  Dad, Mum and I all have the same GP who is perfectly well aware of the situation but again has never once checked on me or referred me for an assessment of my needs as either a Carer or someone who needs Care.

How have I manged to fall through the cracks all these years?  Is it simply because I’m young and it’s assumed that young people have husbands, partners and families who will care for them?  But then old people usually have families that will care for them yet they still get state care.  Yes I could refer myself and fight for a Carer’s Assessment but my Dad didn’t have to do that – help was offered to him as soon as his role as a Carer was recognized.

Without sounding like a moaning minnie, my whole illness journey has been underpinned by abandonment.  My entire family, apart from my parents, have abandoned me.  My boyfriend abandoned me.  The NHS have abandoned me.  The care system has abandoned me.  And both my private insurance company, and the welfare state, is currently having a pretty good go at financially abandoning me.  Every penny and every ounce of help I’ve ever received has had to be fought for – and I do mean fought for.  I gave up fighting to keep my relationships with family and friends because I do have some pride and am not about to beg to be loved.

Yet this hasn’t been the experience of many of my friends.  One of my mates who has had ME for roughly the same length of time as me lives with her parents both of whom need care and she’s had a Carer’s assessment.  She has also had 6 monthly appointments with her GP simply to check her progress for the whole 20 years of her illness.  The state has paid for various aids and adaptations to their home, while I’ve been left to fork out for my own despite being on one single low income.  I don’t know why I’ve been left to fend for myself and she hasn’t.  Maybe it’s because I’m so strong and capable and on top of things.  But I’m that way because I’ve had to be, as I’ve had no-one to lean on or help me out.

When I ask myself the question “Who Cares?” my answer is no-one.

Advertisements

4 thoughts on “Who Cares?

  1. Glo

    You’re right. It’s because you’re strong you get left to do things on your own. Same thing happens to me and I just can’t be whiny about it.

    Liked by 1 person

    Reply
  2. artfulblasphemer

    There is nothing like bureaucracy to make a person feel invisible and immaterial. Add to that having chronic illness and a life AND A LIFE (they are so unprepared for you to have that, yes? What? You don’t sit in a bubble awaiting our whims?) and it’s enough to make a person want to lie down and give up. I think many of us develop a sort of bureaucratic and/or medical PTSD, and it gets harder and harder to go through that rodeo instead of easier because we’ve been let down so many times. I’m going through a patch right now where the specialist’s office that is a 10 hour drive away has acted as if I am the most irritating person alive for having questions about the procedure that has been scheduled for early August and trying to set up my legal protections for the work I will miss. And when that’s piled up on every single other time the system has acted like I am the least important piece of the puzzle, well, it’s enough to make me wantonly offer to take the whole bottle of Xanax and be done with it. Which I wouldn’t, but it feels that way, like we are just that inconsequential. It doesn’t help that *I* care about you, because I can’t care *for* you, but I do care, l and I feel and echo your feeling of abandonment and loneliness. I am sorry it is the way it is. I truly am.

    Like

    Reply
    1. Jak Post author

      Thank you for that lovely comment 🙂 I agree that dealing with all the professionals you do as a chronically ill person is often more stressful, exhausting and depressing than having the damned disease to start with. I totally empathise with being made to feel like you’re a “difficult” patient or that God forbid you should have some kind of input in your own care and not just leave it to the “professionals” (who usually know less than you do!). And you’re so right – how dare you have a life outside of being sick, it’s simply not allowed!! Jak x

      Like

      Reply
  3. Teri

    I understand what you are going through. If you’re out of bed many people assume you are fine & dandy, when in reality you are very fragile. Just know you are stellar for all the devotion to your parents and don’t neglect self care ❤

    Liked by 1 person

    Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s