Someone has just posted a very interesting comment on yesterday's post talking about how we change and why, what makes us who we are, whether circumstances make the difference or whether we don't change but instead hidden skills come to the fore when we need them. So lots and lots of things to think about but there was a light bulb moment in there for me and I really can't believe I didn't realise it before. I've been at Ash's side through all of this and at no point since that diagnosis have I thought of leaving. Even in the days when I felt as though I was hanging on by my fingertips and that if I let go even for a moment I'd go into free fall, even when I felt as though I was in the middle of a pinball machine ricocheting every which way off the posts, even when I felt my life had narrowed to the point where I thought I'd lose my mind, I didn't consider for one moment that I might abandon him but when I tried to reason it out I couldn't uderstand why. People have said I'm a saint which is so far from the truth I can't even bring myself to think about it; they've said 'you must love him so much' but how can I when I don't know him? So why I wonder has it never occurred to me to duck out from this responsibility, to live the life I want, to abandon this stranger who now shares my life and then I read that comment which talked about loyalty and I realised 'that's it'. Loyalty to someone who brought joy into my life, who taught me how to have fun; who made sure I didn't take myself too seriously; who worked and worked to make sure we had everything we needed; who never said no to anything I wanted to do and who moulded me into someone capable of dealing with this very thing. That one comment made me realise that there isn't much that's stronger than loyalty and it explains everything about my commitment to this new way of living. The commitment to stay doesn't get in the way of my dreams for the future however so that's still a discussion to be continued. Watch this space and keep the comments/emails coming. I find every one of them more fascinating, comforting and helpful than you could ever imagine.
Hindsight is a wonderful thing the actual dementia diagnosis is only fairly recent. The three years prior to that was mild cognitive impairment. The six years prior to that was trying to convince family and the medical profession that there was something wrong. My husband denied there was a problem. Intelligent people are very good at hiding problems from others for a short time but the changes were obvious to me.
The mild cognitive impairment diagnosis came after my GP got sick to death of me badgering and ordered an MRI. The results of that showed several mini strokes and vascular damage since then things have got a lot worse, but he is healthy not overweight no heart issues low cholesterol but his brain is still deteriorating. He hasn’t been allowed to drive for 4 years, he hasn’t been able to comprehend documents or read properly for longer. So my future planning has consisted of hoping that if he has to go into care I won’t have to sell the house yes I have done all the appropriate legal stuff but on the days when he gets lost in his imaginary events or the random incontinence strikes, or as I help him dress or listen out while he is in the bathroom or bring the chair to help him up with the frequent falls the urge to run is sometimes quite overwhelming. All the relevant agencies have seen him now speech therapist for the stammering the falls team, the stroke specialist but despite their help they say they can’t do anything else but come back if things get worse. My GP reminded me that I made marriage vows. My family and friends tell me I am strong but you know what sometimes I wish afterwards was now!
A nights sleep might help too
I dream of the “afterwards” Jane is planning, but I wonder if it will actually be as I imagine. People who are released from their caring role, however that happens, are often bereft and lonely.
I think you said everything happens for a reason in a previous post and I must admit the decade I lived alone after the breakup of my marriage has been really good for me because I not only learned a lot of DIY skills during those years but I developed my own interests which I have continued as a single person rather than a couple . Hopefully I can carry on with these interests and it will stop me from viewing myself solely as a carer and help support my own mental health.