The term ‘caregiver’ is relatively new to me and I am not quite comfortable with it because it has always seemed so weird when various professionals (doctors, nurses, nursing home staff, receptionists) have asked me if I am the caregiver/carer. Whenever this question was asked in front of Anthony, over the many years of his various illnesses, I always used to say, “No, I am his wife.” The caregiver/carer identity always seemed somehow insulting to him so I found it hard to accept.
I had to accept this new facet of my identity of course because eventually I had to apply for a ‘Carer’s allowance’ so I could get paid a little bit of money to make up for all the leave I was taking from my job at the university. This was because it became more and more apparent that I could not leave Anthony alone as he was prone to falling over, nobody could get the Parkinson’s medications quite right (a common dilemma), and sometimes Silver Chain staff couldn’t come when I needed to go to work. After two years of this tenuous situation it all culminated in my resignation, Anthony’s admission to a nursing home and Ming’s first scoliosis surgery.
This was around the time I began this blog and, even though I know I can go back and look at what I posted during these difficult times, I don’t want to until my own memory of putting my beautiful husband in a nursing home kicks in. Of course I remember the trauma of this happening and Ming’s impending surgery but I don’t remember a lot of what happened between then and now.
Now, I only know the joys and anxieties of each single day; today I brought Ants home for awhile, then took him to lunch at my mother’s, then took him back to the nursing home where ‘goodbye’ was fine because he knows he will see me tomorrow. Ming can’t understand why I go in almost every day now when I didn’t used to and he even gets a bit jealous, so I have to be quite careful to divide my enormous love for both of them evenly – ha!
I used to see people wheel-chairing their loved ones around supermarkets or down the street and I would think, oh how can they bear it? Maybe, when people see me (still relatively young), wheeling Ants into a cafe or shop, they think the same. I don’t know. But for the moment I actually find these outings great fun even though it probably looks like an OMG-how-ghastly-for-her situation.
Today, on the way back to the nursing home, I stopped at the grocery shop and left Ants in the car (too hard to get him out and back in again) and as I approached the car with the groceries, I saw him smile a little bit.
Once I got back into the car, I knew it would only be a few minutes before I would have to leave him at the nursing home and say goodbye and I was feeling a bit crappy until Anthony said, “You really are very beautiful, Jules.”
The caregiver/carer role can sometimes be reversed in such a way that is SMACKS you in the face and makes you glad, makes you think, makes you wonder. Thanks Ants – you made my day!
jmgoyder 