Heavy one, sorry.

As Abbie was at my parents, cleaning their house today, Dad’s Occupational Therapist met him at my house this morning. She brought along the Speech Therapist too. Bugs was due to leave for work at 11am, so him and I sat in another room together, listening to the Therapists working with Dad.

I find it so difficult to take in. My Dad reading simple words with great difficulty. A man who has indulged in the world of words all his life. Listening to him sounding out words is literally heartbreaking. As his daughter, I thought it was me being sensitive and emotional, but today, I could see that it had the same effect on my hubby. Struggling with function words? I can’t get my head around it, but then, my Dad can’t get his head around the words.

Having the luxury of my Bugsy home for the last three days, really helped me to cope. He gives me strength, as do my children. Just having him there, makes me feel emotionally stronger. Today, I’m not feeling strong.

Until 11th July, 2018, I had considered a stroke to be something that you were sure to recover from. What total ignorance. Yes, people can recover within a few weeks. Some, even a couple of days. However, my Dad has not been that lucky. Until that fateful day, my Dad was Carer to Mum, privately of course, not wanting the world to know she was any different than she ever was. Never did I imagine the ramifications and lasting effects of his stroke.

During a conversation with my hubby on Saturday, we were discussing which parent was most vulnerable right now. I suggested it was my Dad, whilst Bugsy argued that they both were equally vulnerable, but in different ways. I take his viewpoint. Nobody can ever prepare you for the day that you see your parents as anything other than your familiar role models. The effect of the sudden change is devastating. I have spent 44 years knowing who I am in this world, confident that I’m the daughter of strong and pretty amazing people. Today, I feel scared of the future.

Dementia is so cruel. It takes away someone’s identity, their dignity and their life story. I hate it. We are what life made us, but Dementia is like a bomb which destroys all those functioning pathways, which allow us to think and feel. Dementia does not just affect that one person alone, it affects the whole of their family. I already feel I’m a different person to the one I was prior to 11th July. My priorities have certainly shifted. I’ve learnt that it’s impossible to please everyone. You should concentrate on a smaller circle. If you don’t, you’ll burn yourself out.

Repeatedly, I’m told that I should tell the professional services that my parents need help. For whose best interest? Is this so my life can return to some kind of normal? I really don’t know what normal is anymore, but I do know that my parents are my responsibility. They’ve been there my entire life. They’ve always encouraged me, celebrated my successes and supported my failures. As children of vulnerable parents, surely it should be our responsibility, and privilege, to repay that love and support. I certainly think so.

 

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2 thoughts on “Heavy one, sorry.

  1. I agree with you, wholeheartedly, Soph, that we should take responsibility for the care of those who have given their adult years to care for us. We owe them a loving debt, to be repaid as best our own resources will allow. And I’m not talking here about financial, material resources, although they are important, I mean emotional and mental resources.

    I think the key is balance. Rather than thinking that you would be devolving your responsibilities to other agencies to care for your Mum and Dad, and feeling that you are turning your back on caring for them, perhaps think of it as sharing the care? There is no ‘normal’ now, in the sense of returning to who you and your parents were before your Dad’s stroke, but there is a new ‘normal’ where you can be both carer and daughter with the support of others who will allow you to have periods of time, however small, where you can step back into yourself.

    Seeking help and allowing others to join you in caring is not diminishing your love or responsibility, but I think it would make the load a little easier to carry. As I’ve said before, this transitional period of change and acceptance is the hardest and I couldn’t agree more with you about the cruelty of dementia, but the landscape has changed forever and we have to adapt if we are to do justice to those we love and care for. The arbitrary unfairness of it just accentuates the feeling of helplessness, but you are not helpless, you are a strong and determined lioness who will always fight for the best for your family. And right now, I think the best for you all would be to get the professionals working alongside you, to give your Dad and Mum the support they need to continue to live together in their own home for as long as possible.

    It’s not about you getting back to ‘normal’ in order to get back to work, either – that ‘normal’ needs to go on the back burner for a while yet. It’s about finding your balance again on shifting ground, putting agencies in place that will help you do this. I would so love to see you again soon and have some quiet talking time about all this – I know you have the best support in Clive, but I feel your dilemmas and distress very clearly, too. Love you lots, I do. ❤ xxxxxxxxxxx

    Liked by 1 person

    1. Gini, I could not agree more with you about “emotional and mental resources” our parents provide us with. I find myself questioning what my parents would do in this situation and I know they’d be doing just as I am.

      The transitional period of change, as you know from your own difficult experience, is one of pain and uncertainty.

      For fear of repeating myself, I cannot thank you enough for the love and support you give me. I’m so, so lucky to have you in my life. Our friendship means the absolute world to me. Love you I do xxxxxxxxxxxxx❤

      Like

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