Thursday, 13 September 2012


The role reversal.

Somewhere along the line, I'm not sure I could pin down exactly when , the role of parenting seems to have been reversed. It wasn't a sudden change , more of a gradual shift in situation, priorities and health.

However, although it is still assumed by most acquaintances  when I say my parents live locally that we get plenty of help with the children, the reality is quite the opposite - I am the care giver not receiver. My Dad and Step mum actually moved into the next street to be nearer to us , so I could help out if needed.

My Dad has Parkinsons.

He gets very confused.

He is not very mobile and sometimes cannot move at all.

He lives at home with my step mum who is amazing and without her he would be in a nursing home. She fights hard for his care and organises his life so he goes places and does things . 

But she needs a break too.

 So, I have my Dad for a day when I can.

 I help with bits of care when my step mum is away .

 I take him shopping for bits and pieces he wants and out for coffee at garden centres ( they have larger aisles for his walker) .I  help when she goes away with the rota of care that she puts together - a combination of carers and family to look after him just so she can have  a few days away without him. It keeps her sane. Sometimes it is as simple as popping in , like today, for an hour to give him lunch.

 But I didn't feel like it.

I knew it would be hard and I was tired.

Sometimes I wish I still had parents who could come and help me - how selfish is that when he is going through so much?

I know it's because I am tired - weeks of demanding children, a husband who is working every hour that he can find, too much to fit in my busy schedule at the moment, children who still need more and I'm stretched. I felt I had nothing left. Everybody wanting a piece of me.

The moment I walked in and forced myself to call out a cheery " Hi Dad" and saw him sitting there drooling, with chocolate all around his mouth, talking nonsense about whether he had fixed the rail for the curtain correctly, I knew he was off colour and it was going to be tough. For the record he won't have been near fixing a curtain rail for the past 10 years. His mind plucks random information from the past and thrusts it into the present making it seem real to him.

But, there are times when I just can't listen to him talk rubbish again.

There are times when I have to hide how I am feeling from him.

There are times when, if I am totally honest, it just annoys me - how bad is that?

 I was so tired I had nothing inventive to say at that moment so I wandered into the kitchen to make sandwiches and a cup of strong tea for him. He had always been very driven and motivated by his own ambitions and I think this illness brings the worst of that side out of him . He focuses only on himself, no one else, but then wouldn't I - it is an awful , lonely walk and I have cried with him many a time. They say to try and separate the person from the illness helps you to cope, but they are so intertwined now that is hard to do.

Don't get me wrong , I love my Dad and I would do anything for him, but I spend hours popping pills in his mouth, manhandling him into the car to take him out for some fresh air, listening to his ramblings that often drift in and out of sense.....sometimes I would like to hear him ask in his moments of lucidity, how I am, but he never does anymore. Sometimes it is much too hard to see your 'Dad' sitting there like that, but he is not your ' Dad' anymore. No one asks me if I am dealing with it alright - I am just expected to.

Somewhere along the line his role as " Dad" changed , but I couldn't tell you when that was, only that the father I once knew isn't there anymore. 

But I can't grieve for his passing because he hasn't died .

I can't give up on him because he IS still my Dad.

The Dad I remember left long ago. I  can't pinpoint when, he just kind of got swallowed up gradually by this disease until there was not much left apart from a vague physical resemblance.

So what do you do?

You sleep.

You recharge your batteries.

You put a smile on your face and you continue to choose to love and care because the day will come when you won't be able to anymore. 

You do that because if you don't, who will?

You do that because deep down you'd want someone to do it for you.

You do that because you do deeply love him.

You do that so you won't one day regret that you didn't.


  1. I'm so sorry that you have to go through this, really sorry.

  2. Oh Claire, My heart feels so heavy for you. I can't pretend to understand what you are going through, but I see this more and more often with friends and neighbors. Your post is so honest and I just know it's going to help others in similar situations. Not enough of us are honest about how these things weigh on us. Thank you for opening up so others can know that their "feelings" are normal.. Please take care of yourself, first. It's not selfish. You need to be well and strong so you can help those who are not. Sending love and light your way today...

  3. I can totally empathise as I'm going through the same with my mother .. it's a horrible, difficult and sad time. But don't be too hard on yourself. You're allowed to be angry and annoyed. It's not easy.

  4. I'm really sorry to hear you are going through this - it can't be easy to watch the ones who were so strong become weak. I think that it is very honest of you to be able to say - many of us often feel selfish but not many will admit.

  5. This is a difficult position to be in. You are officially a part of what sociologists call "the sandwich generation"; caring for children, caring for elder parents. You the 'sandwich' and you are under pressure. As life expectancy continues to rise and the elder population continues to rise along with that, your situation is increasingly common. Don't feel guilty because you have mixed feelings and not all of them are 'good'. Just allow yourself to feel what you actually feel and don't stuff it all down. Please find a support group of caregivers ASAP. If nothing else, you will find people who feel the same way you do and it will be a good place to blow off steam. Build a network of social support and give yourself a place and time to take care of you too. Hugs.

  6. Thank you all for your lovely and sweet comments. I nearly didn't post this as it is quite a vulnerable post, but I want to keep things real and I know I am not the only one who has to step in in this way , caring for relatives. You are right though, it is easy to be hard on myself, thinking I don't do enough, but looking in from the outside it is an impossible situation with no end until death spares him ;(Thank you all for your kindnesses - it helps for sure. Xx

  7. Been sat here for ages trying to think of what to say. Agree with Lisa above - don't feel guilty of your feelings - you're only human and sometimes we all need/want to get off this treadmill and just run away from it all and yours is obviously a difficult and demanding situation - I really feel for you. And don't bottle it all up - just let it out when you feel you can - only you will know the best way to do that - again as Lisa says maybe by finding a support group or by doing something just for you and you alone - maybe play your piano and lose yourself in it - you don't need me to tell you how therapeutic music can be. Sorry feel like I'm lecturing now - just take care of yourself. xx

    1. Not lecturing, just caring and it helps. Thank you. xxxx

  8. Very moving post. It's so difficult when you get that realisation that the roles are reversed and your parents need care. Allow yourself to feel as you do and be gentle with yourself - it doesn't mean you love your dad any less, it's hard. Your dad is lucky to have you. x

    1. Thank you - sometimes it just doesn't feel enough, but I know he knows I love him!

  9. I can totally relate to this very moving and well written post, you have perfectly captured what it is like to care for someone with Parkinson's Disease. In short, it is a nightmare, something that none of us can escape from, including the sufferer. My FIL has young onset parkinsons and has been suffering since he was 48. It is a disease I would not wish on my worst enemy and has stolen his life from him. It affects the whole family including my MIL who is a strong woman but cannot cope any more, at one point she was caring for two parents with dementia as well as her own 4 children and her husband with Parkinsons. xx

    1. How heartbreaking that he was so young when he first had it too. My heart goes out to him and all those around him. It effects so many and the caring is a huge step mum has lots of home care going in now to help as well. It is physical as well as emotional . A day at a time........ X

  10. Wow - that was really moving and poignant. That's a really tough call - not only to parent your parent, but a parent entirely lost in a yesterday world - a world they are glued up in. I think its so important that you acknowledge your feelings honestly and don't feel guilty for any of them. Not one. You are human - and what you are feeling is normal given your circumstances - give yourself a huge pat on the back - here's a hug from me - and know that you are doing the best you can do. XXX

  11. Thank you - It is a hard one for sure. Thank you for the kind words - needed at the moment. X