Putting up with too much
I want to talk of my experiences and urge others to learn from them. Whether you do as I did, many aspects of which I regret, or whether you do things differently, please hold your head high.
In many contexts where I speak of Dad, I leave it open whether he's alive or dead, but he's in a home, in the advanced stages of VasD.
I have been gradually 'coming out' with people what utter hell it's been. I was too ashamed to tell most people. Let me put it in a context. Dad had a successful career, but he was drifting into dementia before he acknowledged it, then Mum died. It was a while after that before he had a formal diagnosis. However, I had already been helping my parents for a long time and then I just stepped into Mum's shoes. I put up with quite a bit that I put down to bereavement then when the dementia was diagnosed, he stepped down from such business activities as he was still engaged in, and then I was emotionally dragged in.
I hoped that we would become closer and he was still a savvy enough businessman to know how to lull the person he wanted a good deal from into false security, so he became nastier, whilst I felt more and more obliged to help, more and more worried how people would judge me if I didn't.
I excused his treatment of me on the basis of a miserable childhood and difficult early years, ignoring that for half a century he'd had a marriage to a woman who'd given up almost everything for him.
So he ground me down and others around me, and I found myself making excuses for him. Gradually, I felt obliged to warn people such as ambulance crews, doctors and then, eventually, nursing home staff, how manipulative he could be and how nasty he could be if he thought there was nothing to be gained by being nice to them.
The difficult thing is that I still love him. And that's the killer. I also empathise with vulnerable people, not least because of the way he treated me and others in my family, especially when I was a child, so I instinctively empathise with him in his pain and distress.
Like so many people who've been through difficult experiences, I want to say "Do like I say, not like I did, but never feel condemned or ashamed if you don't manage it."
You did not give birth to your parents, they gave birth to you. It is good and kind and respectful etc. to care for them, but you are also entitled to your life.
And a particular question I'd ask that you pose yourself is this: looking back over your life, is what they gave to you as much as they and/or you expect from you, when it comes to giving to them?
If they gave a lot and you want to repay it, fine, give all that you feel able.
If they didn't give a lot and you want to care for them, fine, but ask yourself why, and do it because of who you are, not because of who they are.
And most importantly, please, please don't do as I did and fear other people's condemnation to the extent that I put up with more than I should have done. Don't be scared that if you say you won't put up with something people will think ill of you. You have as much a right to set limits as to what you will put up with when the person abusing you or trying to abuse you has dementia and when they do not. Look around you, you will see people that give less care than you do who are not condemned by others and that you do not condemn.
I don't say don't care for your relative with dementia. It's your choice how much, if at all, you care for them or about them. I say care for yourself as well and don't be frightened of other people's judgement of your choice, whether it's to care 24/7, care less, or care barely or not at all.
