I have just returned from a week in Italy with Hubby.
Just him and me, wandering around lots of old ancient monuments, churches, wine, pizza, more wine, more churches, 35 degree heat, which meant more chilled wine, more wandering, more churches, a castle, gondoliers, pasta, weird custard-filled croissants (like croissants aren’t bad enough for you!), uneven cobbles, more wandering, ice-cream….oh and did I mention wine? We’ve had it planned for over a year; my wonderful mum-in-law and the equally fabulous auntie Shelley were booked in and very kindly and lovingly took care of our rabble whilst we were away. The flights have been booked for months, the guide books pored over, the internet trawled for the best things to see and do….and we did it! We did it all and it was ‘stupefacente’ (amazing)!
It has meant I have neglected my blog though and it has meant I have also had a bit of a break from worrying about my mum. But my dad assured me all was well and for the most part I was able to put my mother and her decreasing mental faculties out of my mind. It was difficult at times though, as I noticed ladies of my mum’s age wandering around the streets of Rome; tourists who resembled my mum in their smart shorts and linen blouses, small handbags slung over their shoulders as they calmly and respectfully explored the Colosseum and the Vatican. I had to try hard to not feel envious of their health and their enjoyment of life. I watched as women who looked like my mum queued in the heat for a chance to see inside La Duomo in Florence, delighting in their cultural exploration, their devouring of ice-creams and history equally greedily. I enjoyed chatting with a lovely couple from Edinburgh in our queue to check-in at Venice airport, who were a similar age to my parents, who lived only 30 miles from them and who knew people from my parent’s home town. I tried not to feel cheated and sad as they talked about their sons and their travels abroad, about their fun-filled retirement and future travel plans.
It was a lovely week, despite Black Tuesday!
Before I recount the dark day that occurred last week, I feel I should mention “wandering” in a dementia sense. When you read about dementia or Alzheimer’s you will often find that the people with dementia have a need to wander. They wander around their own homes, they try and get out their homes and are found wandering around their local neighbourhoods, or some travel further. I have found a number of people on the internet, fellow bloggers as well as people who make a living out of talking about dementia, authors and lecturers who advocate allowing a person with dementia to wander. That to keep them locked in, or to try and prevent them from wandering is unnatural and unkind and as long as they are safe then it is simply what they would be doing had their brains not started to succumb to the destruction that is dementia. They would be up and about, mobile and active, walking around the house to find something for example, the only problem is they forget what they are looking for or where it has been left. The argument seems to be that to try and keep them enclosed in a house, a room or a care home is like imprisoning them. They have a human need to walk around, filling their days with activities and following what their confused minds are telling them to go and find or discover.
In theory this all sounds lovely and I see my mum’s need for wandering all the time. She never sits still and is constantly searching for something. Up and down the stairs she will go, looking in every room, her eyes vacant, her hands clutching at her handbag, searching for something, but most of the time she is not sure what. She also tries to leave the house frequently and I know Dad sometimes follows her at a distance, to make sure she gets to her destination safely. She seems to know he is there though and sometimes complains to me about how she is not allowed out of “this place” on her own. That she is followed and that the doors are locked and there are men guarding them (there are no men, just for clarification…just my dad) – she feels imprisoned. So, I read eagerly about this theory. This seemingly new and modern idea that we should allow people with dementia to wander freely. That it is their right.
Then Black Tuesday happened:
Mum got lost. Not like, “I couldn’t find the milk aisle,” or “but, this isn’t our house – that one over there is!” lost, but properly lost. For hours.
The police were called, the nurses came, the social worker came, the bloody heat-seeking helicopter was scrambled. The local farmers were out searching, neighbours were on high alert and after about 3 hours, she was found, stuck in a fence, her shoe tangled in the wire and the wooden fencing like a piece of fly-away litter. She’d tried to make her way home across the fields we think. Tried to climb the fence, fallen and gotten her foot stuck and then she had been forced to lay there for a few hours, cold, frightened and with goodness knows what confused thoughts swirling around her diminished brain. The thought of my beautiful, proud mother there, incapable of crying for help, incapable of undoing her shoe to disentangle herself, the thought of her crying, lost and alone is so incredibly sad. The thought of her having to try and cross a mile of farmers’ fields to get home, because her mind couldn’t work out how else to get there is heart-breaking and makes me worried about other people with dementia who are allowed to wander. My dad took his eyes off my mother for a short time and she’d gone and the outcome could have been very different. As it is, we are lucky and she is well and after being checked by paramedics and assessed she was home the same night. She has no memory of her escapade, thank goodness, but then the downside of that is that she will not be discouraged or be fearful of doing it again, so my dad’s role as carer just got harder.
I don’t know what the answer is to the wandering issue. I certainly never want my mother locked in anywhere, trapped physically, like a prisoner. Oh don’t get me wrong, I know the irony is that she is already trapped in a dark prison, her mind locked away, unable to escape and find its way back out into the light, but locking her away physically and taking away any freedom to roam might be the only thing she has left. But, then what about her safety and those of others around her? How do we tackle this? How can she wander safely and feel free?
I really don’t think enough has been done to understand dementia, to understand the best ways of helping a person with dementia, to understand their individual needs as a whole person, as well as their individual, dementia-specific needs. My mum can clearly not go wandering on her own, but having my dad with her at all times agitates her and annoys her and makes her feel like she is being watched, guarded and imprisoned anyway. Dad is on the cusp of getting some help through the week, with a day centre able to take Mum and look after her with different activities to stimulate her for a few hours, giving him a well-earned and needed break. Perhaps that in the short term is all we can do?
I spoke to her yesterday, told her I was back from Italy, that I had visited Florence, a place her and my father visited and loved some years back. I told her it was beautiful that she had also thought it beautiful. I asked her if she remembered visiting a few years back. “Who am I?” she asked me. “I mean, who are you talking to?” and with that she said goodbye and hung up.
As I stood in my kitchen, the phone screaming its dead tone into my ear all I wanted to do was reply quietly, “I have absolutely no idea Mum! Not just now. I know who you were and I know that you’re in there somewhere, hidden from view, behind a thick mist of fog and confusion, shrouded in darkness, desperate to escape the bars of your internal prison. I know you are scared and I know you are missed – painfully so. Because you are in there somewhere, we keep trying, trying to reach you in there, trying to connect, trying and hoping that we are making a difference, trying to understand how you are feeling, how the wandering helps, how trapped and afraid you feel. Hoping desperately that on some level you know you are safe and know you are loved and that though sometimes we fail, we will keep trying.”
But she is gone. There is no one there.