My brother had arrived to collect my mother. He was in his old Mercedes car. She had spent the weekend at my house. Mam has been writing down bits of trivia on scraps of paper so that she can answer questions that come up in the weekly Elder’s Club quiz, where she attends three times a week. As we were settling her into the passenger seat she turned to my brother and asked him whether he knew how the Mercedes car was named and, without pausing for breath, she went on to tell him that it was named after the daughter of the maker, who was called Mercedes. She then mused that you never see Mercedes cars on the road nowadays. ‘Other than the one you are sitting in?’ said my brother. Mam looked confused and then laughed. ‘Do you remember when I had that stroke thing a few years ago? Well it effected my memory a bit, and it was getting better, but when your Dad died, he took my memory away again with him.’
Mam has Alzheimer’s. She was diagnosed a few years ago but we knew a long time before that. Two of Mam’s sisters and a brother died with the condition. We haven’t told Mam that she has Alzheimer’s because, having witnessed her siblings decline, the knowledge may be too distressful and because she is happy to believe that the memory loss is due to a stroke. Many professionals would disagree, but we are the ones who are caring for her, ensuring that she is surrounded with love, good nutrition and happy experiences.
Between my siblings and myself we have a rota of care. It’s working well at the moment. My sister has taken on the official Carer’s role and covers the bulk of care and she also steps in for others when needed. Mam has never been sweeter, happier, funnier or healthier! She has also lost many of her inhibitions! One of the unexpected things that I am now grateful of, is that I’m getting to know the real person behind the façade of my mother. Due to the terrible experiences my mother endured during her childhood and WW2, she was quite damaged and our own childhood was often marred by her volatile and unpredictable behaviour.
I found it hard and stressful caring for my mother after Dad died until I triggered a change of perspective in my attitude to the task. Instead of caring for Mam, I decided to spend time with her. Since then, we do things together around the household and personal care tasks. We sing, watch films, blow bubbles and laugh. She has travelled, revelling in new experiences. Last year, my brother and sister took her to Italy for a month. She thrived there. She remembers that in Italy one kisses on both cheeks. She also remembers the words of songs. In this phase of the condition, the bitterness, anger and negativity have fallen away from her and I see the pure positive energy that entered this physical realm in the first place. In some ways, I feel that Mam is getting a second chance at the childhood she never had!
Recently I came across a book, which really helped – Creating Moments of Joy for the Person with Alzheimer’s or Dementia: A Journal for Caregivers I would recommend it to any care giver out there. It’s helping me understand my mother’s perspective more and the phase she currently is in. I’m hoping that it will help me make her journey and my own less heart rending and stressful.
I was thinking this morning about how close my siblings have become. The strain of this disease can tear families apart. However, we communicate constantly. We use Facebook messenger to update each other, relay the latest funny or infuriating thing that Mam has done and generally keep everyone in the loop. We notice when someone gets overwhelmed. We acknowledge that we all have our quirks. We also acknowledge that we are doing the best that we can. We also are keenly aware of the sacrifices and support that partner’s, children and extended family offer.
I don’t dwell on what the future may bring – the later phases of the condition. I can’t afford to. There is no point dwelling on if’s and but’s. My mother herself says ‘Take one day at a time and make it a good one’. They call this disease ‘the long goodbye’. I’m now grateful that we have this time to get to know her.