Time is our enemy now. How long can we really go on with the same repetitive torment? Day after day, hour after hour. How is this going to end?
This is a question I find I ask myself often these days. I once looked up the life expectancy of those diagnosed with younger onset Alzheimer’s but it wasn’t any help. There seemed to be an average of ten years, but with the range running from 3 years to 20 years. Then there is the problem of the starting point? Most people who have experience of loved ones affected by dementia seem to agree that the starting point was way before the initial diagnosis, so where do we start counting? My mum got a very early diagnosis; she went to her GP early on, he listened to her fears and referred her to a specialist older persons psychologist for testing (this is not a typical response in my experience) which meant my mum’s initial diagnosis and treatment began at a very early stage, which should mean she lives an above average length of time after diagnosis, right? Well, the other factor in this is that my mum has never had an A-typical Alzheimer’s presentation (whatever that would look like?) which means that all bets are off in terms of looking at what her life expectancy is. So, who knows how long this current impasse between living and dying will stretch out for. At least we know the outcome, death always wins, in fact death is miles ahead in the game; it feels a bit like my cat tossing her latest mouse victim about. Some days I even feel like the mouse. I just want it to be over.
Some people might read this and think I am a heartless bastard for wishing my mum was dead. I cannot be clearer, I don’t wish she will die, I wish she died months ago. As a therapist trained in the therapeutic arts (joking here), I try to be rational about these types of things, so I accept wishing is pointless and try to remain either a) hopeful that relief will come and/or b) grateful that most of the time she seems so oblivious to her reality that her existence doesn’t bother her as much as it pains me. There is no joy in seeing someone you love fade away, lose motor skills, lose cognitive function, lose the ability to communicate in any meaningful way, and lose the ability to experience pleasure. That is nothing to say about the obvious memory issues, but let’s put that to the side for a second. If Alzheimer’s was just about memory it wouldn’t be that bad. The person affected would lose a part of their existence, but if they could still move about, enjoy life from moment to moment etc it wouldn’t be too bad. For the first 7 years after my mum got her diagnosis, this is what it was like. She still had an excellent quality of life, it may have been a different life than the one she had before, but we had fun, we got about, we went places, she did things that she enjoyed even if the memory couldn’t linger. Here we are, almost ten years after her diagnosis, nothing is fun anymore.
Some days it just feels like a struggle. A struggle to be around her, a struggle to be in the care home, a struggle to manage the guilt I feel. Today, I am sitting in the day room of the care home. Mum is only able to speak a few words now, mostly random phrases with certain words stuck on repeat. She is having partial conversations with persons unknown and I am a bystander. We both use language to communicate; she can’t hear mine and I don’t understand hers. I try to give her a small piece of cake. I do this by breaking it up, putting a piece into her right hand and depositing another piece directly into her open mouth. She begins chewing and swallows. 3 minutes later she lifts the piece in her hand up to her mouth and we start again. The cake is a fairy cake made in the care home. It is small and brown and inoffensive. It would normally take me a couple of minutes to finish, maybe three or four mouthfuls. We started in on this small brown puzzle nearly 45 minutes ago, there is still at least a quarter of the cake to go, it will remain uneaten. I try to give mum some coffee in a children’s ‘sippy’ cup, the type of cup with the little plastic spout. Sometimes it works, today the coffee spills up and out of the spout and onto her neck and cream jumper. She doesn’t flinch. When I apologise she says she never felt a thing, which is a rare moment of clarity. I dry her off and sit down. 2 minutes after I sit down she lets out an exaggerated ‘Ooowwww’ and I am not sure if she is experiencing a delayed reaction to the spilled coffee from earlier or there is some new antagonist hidden from view? It really is impossible to tell. Throughout this whole time her eyes are closed, her head tilted back, her mouth open slightly. She looks frozen in mild agony, a picture of minimal terror, like a bad actor in a horror movie prohibited by their range so unable to portray the full horror they are trying to convince the audience they are experiencing. Of course, this is just her resting dementia face. She isn’t actually in pain, because when she is she lets everyone know about it. Today, this is just my mum’s face. It’s different from her old face because she is living a different life now. It’s a new chapter in a complex book. I hope we get to the end soon.