It is hard to describe the dread that I try not to feel when getting Anthony home for the day. Despite the regularity of medications, advanced Parkinson’s disease (with a bit of dementia thrown in for good measure) can rear up in all sorts of unpredictable ways, minute by minute, hour by hour, day by day. For example, I never know if Anthony will be able to walk or not, talk or not, eat or not, go to the loo or not, understand or not – and the list goes on.
The other dread is of Ming’s plummeting mood when Anthony comes home. A relationship between an 18-year-old son and a 76-year-old father is not necessarily easy even without the addition of PDD so, when Ming tries to communicate and Anthony either doesn’t understand or doesn’t respond, Ming gets terribly hurt and wants to withdraw. I understand this and rarely try to manipulate the situation in order to make everything okay. Instead I let Ming go to his room and do his own thing because, to be honest, I too, want to withdraw from an Anthony who is mostly silent and unresponsive and often asleep.
Of course there are beautiful moments of mirth and joy and love, but they are few and far between now because Anthony has become very hard work. Walking him across a room can take forever if his feet aren’t working, conversation is staccato with miscommunication rife because Anthony often doesn’t ‘get it’. Ablutionary situations are very difficult, both physically (me lifting) and emotionally (Ants having to be helped).
The other thing I dread is Anthony’s inevitable question: “Can’t I stay here for the night?” where I have to say, “I can’t – you are too heavy and you need two nurses to help you in the night.” I have tried to deal with this question via humour, honesty and sometimes anger, sometimes tears, but he keeps asking me, over and over again, during every visit here or at the nursing lodge, during every phonecall. Sometimes I yell at him to stop torturing me but mostly I handle it calmly because I know he doesn’t understand/accept how ill he is, whereas I do.
This afternoon, we are doing something different. Most of my family – my mother, brothers, multiple nephews, nieces and various partners are gathering at my mother’s house for our traditional (but belated due to geographical distances) Christmas Eve dinner. I wasn’t going to get Anthony because it’s late in the day and I wasn’t sure if he’d be up to it and am still not sure. Then I thought I have to try. So the wheelchair taxi is picking him up from the nursing lodge at 5pm with an arrangement to pick him up and take him back at 7.30pm (at which time he is usually in bed).
Anthony is very close to my mother, brothers, sisters-in-law and their children so I hope it works out but, yeah, I do have a bit of that awful dread about the logistics.I am also excited! Of course it won’t all go perfectly – nothing ever does – but, on the other hand, you never know!