Today’s blog is one I am doing with a tinge of sadness, but also with a whole mix of other emotions. As a family we are at a really tough time in our dementia journey and are ‘savouring the small things’ with Bob. Dad has declined further and has had multiple TIA’s (mini strokes) of late and is now bed bound and receiving pain management as he screams out every time he is moved. His legs are locked open (like a frog’s legs) and we suspect a hip fracture even though he has had no falls. So how can this happen?…we will never know, but I would suspect it happened in the lifter.
Our family is starting to rally and we are flying in my brother from Sydney to spend ‘quality time’ with Dad. I am personally watching for every smile and any acknowledgement Dad can give me. He does a little ‘finger flutter’ thing when I hold his hand which is him telling me he is ‘ok’ and enjoying the song I am playing for him (we run his favourite music 24/7). It is amazing how ‘finely tuned’ we have become and our conversations have become hand and eye movements, but we know exactly what we are feeling.
An interesting thing I wanted to share with you is that our family have noticed a ‘distinct shift’ in the demeanour of the carers and nursing staff. They are ‘ultra-sensitive’ to Bob’s ever changing symptoms, have increased their caring regimes, and also shown a new tenderness and kindness towards both Bob and our family. We are witnessing people who actually ‘feel’ their residents change, and they are actually preparing our family for what they know is coming. It is both incredibly comforting and amazing to watch ‘human nature’ naturally unfold.
The staff reactions and their body language are the key indicators I personally use to gauge where we are at with Bob’s decline. They are reporting to us with any new symptoms (no matter how small), offering support, rubbing our shoulders and giving us hugs without notice. This is the ‘real’ side of people close to the action, who are emotionally invested in the resident. The nursing home staff are impacted just like the family members because in many cases they become the residents’ ‘new family’ as they are the ones caring for the person on a day to day basis. We are very lucky to have such kind staff who have looked after Dad so well across a long period of time.
I had a fabulous chat with a long time carer yesterday who opened up to me and shared her thoughts on families. She paid us the ultimate compliment by saying “I really love families like yours, you are so involved and show so much care and compassion and really work in well with the carers”. She also said “ us carers have to cop so much abuse from family members who may have sibling rivalry, jaded views of aged care, their own mental health issues and no idea what care we actually provide for their loved one.” I totally understood what she was saying as the family often only gets a 15 minute ‘snapshot’ of the care offered and can form very misguided views.
The carer talked about how our family’s journey in aged care should be the ‘new standard’ for all families, and should be a collaborative team effort. ….this was music to my ears as it was exactly what I tell people when I do my talks. The carer finished the chat by saying how even though they only earn $20/hour they have personally bought clothes for residents from the Salvos because the families refuse to bring any in. Some carers buy better quality shavers (and keep them in their car) to offer a smoother shaving experience to the resident. She then explained how she has gone home in tears on so many occasions because of how she has been impacted by what has happened to the residents.
This won’t be the last time I say this to the carers (personal and lifestyle), nurses, cleaners, cooking staff, maintenance guys, volunteers and aged care management team but ……“Thank you”…..
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