It was certainly not the case that my dad had an easy ride with his dementia during the 19 years he lived with it, and as a result neither did we. For the majority of that time he was a strong, imposing man who could move independently, speak very loudly and be abrupt, rude or even offensive. When he entered a more passive stage of being completely dependant on others and lost his conversational ability, we would spend many hours together that were characterised by me observing him and trying to work out what he was thinking, wanting or needing.
As a family we felt the sadness, anger, desperation and complete bewilderment that all relatives feel at having a loved one with dementia. However, what I never saw when I looked at my father was stigma; indeed I never even consciously thought about his dementia, dad was just dad. Very different to the man he had been prior to developing dementia of course, but still dad.
If you see stigma you feel fear, the two are intrinsically linked. Many public opinion surveys now tell us that dementia is the most feared disease in the world. Cancer and HIV were once where dementia is now, but with improved treatments for both people feel that there is hope, not just fear. Where dementia is concerned, they can only see fear: the terror of developing it themselves and losing the life that they know, or the pain of seeing someone they love living with dementia.
Fear breeds fear – for so long people with dementia have been locked away, segregated from society, breeding fear of the disease though a lack of understanding or exposure to what dementia really is. Even though the disease is now coming out of the shadows, it is impossible to predict how long it will take for people with dementia to be accepted within society rather than ostracised and shunned as many still are.
When someone’s own relatives feel too fearful of their loved one’s dementia to spend time with them you know that stigma is alive and well and living in our communities. It is also the case that many people like their own ordered lives, and dementia is the ultimate in being disorderly. It is unpredictable, and relatives can wonder how to approach their loved one, talk to them or engage with them. My best advice to cope with this is also the simplest advice – see the person.
However changed someone appears to be, they are still the person you love underneath. You may need to be very imaginative to discover that, but I have never met anyone with dementia whose true self cannot be reached with thoughtful, loving perseverance from a dedicated family. As a relative you may endure a lot of heartache to find that peace, but giving up could ultimately leave you living the rest of your life with regret.
Having lost my dad to dementia, I can honestly say that I am so very, very grateful for the time we had together. Yes it was time clouded by the disease – it robbed him of so much – but dementia never got in the way of us spending time together. I could have let it of course, there are often times when it is easier to walk away than take a path that you know will hurt you, but it is important to see beyond your immediate feelings and emotions.
Dementia only gives you so long with your relative before time is up. Allowing your fear of the disease to keep you from making the most of that time is something that one day you will not be able to remedy, whereas fear can always be conquered. Being self-conscious about how you should act around someone with dementia, or fearful of what they might say or do is so very unimportant when you sit and think about the bigger picture of life and all that it brings.
If I ever had a fear with regard to my dad, it was a fear for the day when he would no longer be there. It was never a fear of him not recognising me, not answering me, not responding to me hugging him or bringing him his favourite food, it was a fear that one day I would no longer be able to just sit and have a cup of tea with him. Believe me, when that day comes, you wish more than anything to go back to any amount of ‘awkwardness’ just to live in the moment, breathe the same air and know that you love that person so much you would do anything for them. My dad has passed away, but for everyone who still has their loved one with them, take in those moments, pour as much life into them as you possibly can and never let fear win.
Until next time...
Very well said Beth. I think many people are fearful of what they will be faced with if they visit their relative or friend in a care home situation too where there are others maybe further along the dementia road whose behaviour may be unpredictable. They are missing out on seeing how their own relative is cared for and on the many genuinely joyful and warming moments that happen spontaneously during the course of the day. I feel fear every time I walk up to my Mum in case there has been a catastrophic change and she doesn't know me but that fear is dispelled instantly when her face and eyes light up and she says my name. One member of my family will visit my mum at my house but will not enter the care home where she spends the bulk of her time. I am sure fear plays its part in this reluctance.
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