This last week was the third funeral of a younger person with dementia. I only knew Deb in the mid and later stages of her disease, but have become very close with her husband Fred, who has been one very amazing husband and BUB for his beloved. Sadly, Deb had to live in aged care in the last few months, but I believe it was a positive experience for everyone, which is always wonderful to be able to report. Her daughter and brother gave truly beautiful eulogies, and spoke very openly about her dementia, how it affected her, and how it affected them. They were raw, and honest, and brave. We all openly cried with them, for their and our loss.
My husband was unable to attend the funeral, and so my youngest son came with me, partly because I can no longer drive, and partly to support me. Part way through, he was crying as much as I was, and we both hugged and held onto each other tightly. It wasn’t until afterwards when we went out to lunch together and discussed our feelings that I heard he felt it was like attending my funeral. I too felt it was a more than a glimpse of what is ahead, and it affected us both deeply. Of course we cannot live in fear every day, but it was and is confronting and occasionally makes me very fearful of what is ahead.
When I was first diagnosed, this same son said; ‘But mum, I thought dementia was a funny old persons disease?‘ He said it casually, and with humour, and we all took it that way, but the reality for my children is they have a mother who is very slowly deteriorating in front of their eyes. And, it is not funny. My other son held me tightly after the funeral of our friend Michael, with the same sense of fear. Like all young people, they get on with their lives, but lurking in their subconscious virtually all of the time is the fear I might one day be in an aged care facility, and will probably die much sooner than we all would want. I changed the word from Grandma to Mum in the image, to highlight the difference. It is desperately sad for everyone, whether it is your grandma, or mother, or friend, if they don’t recognise you.
Wayne Dyer said something like, ‘We are born because of a sexually transmitted act, and being born is terminal; we will ALL die.’ We live like this, as if every day is our last, and we are trying to make sure we spend more time together, but sometimes ‘living’ gets in the way of quality time together. We always hug and tell each other we love each other, every time we connect. When my father in law entered high care with Lewy Body dementia, the fear of the possibility of one day having to visit me in one, was so intense, it stopped them from visiting their granddad during that time. Then when he died, they both felt incredible guilt for not having been here at all for him. This is another negative effect of having a mother with younger onset dementia.
Whilst neither of my children are technically ‘carers’ for me, they do have to be with me sometimes, as well as provide transport. Their lives don’t completely revolve around this, but there is a sense of ‘being on call’, in case my husband is not able to help when I need it. It is probably difficult for them to express their feelings or fears with their own friends, as almost none have a parent with dementia. Many do have grandparents with dementia, so at least there is a common thread of experience. But it is not an easy topic to discuss. Talking about the abilities that have ‘gone into hiding’, and are slowly getting worse, feels like a betrayal of their mother. Accepting the repetition of conversations, and my increasing forgetfulness is also hard for them; as they don’t live with us, it is easy for them to forget about dementia.
Eventually, it will be like having a parent who is absent, and they may then also have to take on the role of parent. I read about the effects of this on adult children, who care for their elderly parents, and know many feel like their elderly parent has become the child, and they have become the parent. They write about the intense sense of loss they feel at not having a mother or father capable of fulfilling the roles they had for their whole life. The sadness and grief of not having a parent ‘there for them’ or to ask for advice from, and the burden of having to become their ‘carer’.
I don’t feel desperately sad or fearful today, but there are times when I do. I’m sure these feelings wrap themselves around my children too, and impact their lives and hearts. The best we can do is support each other, and work on being at peace with ourselves and each other, and whole human beings. Love will get us through, it has before, and it will again.