Being a Carer to my Husband.
Blowing on the pureed food to make sure it was the right temperature, I bend down to place it in my husband's mouth. I remember the first time I had to do this - on the one hand, I was ecstatic that he had moved from being peg-fed and was now onto pureed food, on the other hand, I remember how desperately I was trying to block out the act of the enormity of what I was doing lest it shatter me completely.
I was feeding my husband.
I was feeding my husband because he wasn't capable even of doing this for himself anymore.
Overnight our roles had irreparably changed, I was a carer for a profoundly disabled man who I didn't really recognise anymore in a husband capacity. It was all too much. Who was he now?
I feel the heat of something wet on my cheeks and I realise it is the tears of my silent acknowledgement that I was scared, so, so scared. I didn't know how I was going to do this, be this person, look after him and single-parent our 4 children. These tears flowing - scalding my cheeks as I wipe them on my sleeve - were telling me I was as vulnerable as he was, just not outwardly, and I would have to carry him now regardless.
Spoonful-by-spoonful I continue feeding him, I observe the total dependency and vulnerability of my barely recognisable husband who once stood so strong, held his arms out for the 4 kids to dangle off like a tree 'testing his biceps'.
We are 8 years in now. Alex comes home 48 hours per week (not including our visits to him or all the appointments). Home time consists of trying to balance going to places he’ll love, maximising sensory experiences, therapies he will benefit from that I can facilitate and the usual routines for 4 kids, having extra people (i.e. carers) in the house and life in general. It’s a challenge. It’s exhausting. But just to see the happiness it brings him, that serene smile of peace on his face that he’s where he belongs lights me up. The other day the girls asked him for a word so they could write antonyms and synonyms - he said (and yes we had to spell it out using the alphabet and hand squeezes) “antidisestablishmentarianism”. These moments are beyond precious. witnessing the children facilitate his role as father.
So yes, for many reasons, some I won’t go into here as there are many factors influencing my particular personal situation, I find it extraordinarily difficult being a carer to my husband - but it’s taught me that I have to trust, I have to feel flow rather than fight for it. Fighting for it acts as resistance that therefore pushes against the current. I am often knee-deep in fatigue, busy-ness, routines, keep-it-togetherness, I-can’t-do-it-anymore-ness! But I silently breathe words into my heart that heal, I hold onto certain phrases that steady & ground me, I ‘notice’ to keep me in the present, and my gratitude pills I swallow morning, noon & night!
Being a carer to Alex is a privilege. But it has been a long time reaching the place I have. I find it unbelievably hard for myriad reasons - but my time with him, being able to be the person I am for him is both an honour and a joy.
Being a carer, and not by choice, is hard - I want to send out peace & gratitude to all those in similar situations - YOU ARE INCREDIBLE!