Today’s blog is more personal and my rambling thoughts about my perspective as a wife and mother, of what it is like living with dementia, and the impact it has on me in those roles, and on my husband and children. When I was first diagnosed, the thought of not being there to see weddings, grandchildren, and so on, took me to a place of sadness I had not known before.
The anticipatory grief remains, although not as intense as it used to be, due to the fact I have not progressed downhill as quickly as we was told would happen.
But then, who knows what tomorrow will bring…
The first few weeks following diagnosis still seem surreal; much of the time was spent crying, and wondering what the hell had happened to my brain, hence the name of my book.
It was confusing, but not due to the symptoms of dementia, and all-consuming, so much so that I in retrospect, I now know that my children did not get enough support. No doubt the fears they felt about their mother having ”a funny old person’s disease (Charles, 2008)” and what changes this would bring were far from my mind. The guilt I feel about this continues…
I’ve given a lot of thought to what, as a home maker, wife, and mother, dementia has had on me, and the impact on women in general.
Most women in a family situation have been the force behind the meals, the housekeeping, the cleaning, often the gardening, and certainly the raising of the children, their schooling, their homework, and their sport. Yes, many fathers are involved these days, but still, it is often primarily the ‘work’ of women, and I know far more women who have given up careers they loved, to make way for the man to keep his career, and for them to become the main ‘carer’ of the children. As a mother, I had no qualms about that ether, and wanted to be the primary carer of our kids.
That is not meant to be sexist, but simply, as I have experienced and seen it.
Fathers get involved with sport and some child care, but that is more likely to be on the weekend when they are not working. They tend to be the main ‘bread winners’, even today in most homes where both parents are residing, and if both aerobes are working full time, I see that most often, the woman is still the main ‘worker’ at home. Women still are managing most of the ‘family stuff’. And, we are good at it, and most of us love doing it, especially bringing up our children.
It was not until after my husband was retrenched from a corporate job, that he had any real idea of what I was doing, even though he had been a FT single father for a while before we met. When women separate from a marriage with children, often they get no additional support. But when a man is the person looking after children in this situation, often their own mothers and other women step in to help them. Again, this is not sexist, just what I have often seen.
So, the thought of not being able to fulfil what I believed was my role as a wife and mother, and especially my ‘duty’ as a mother, was devastating. The thought I would not remember them one day was (still is) devastating. Whilst I can at least for now, rationalise that it is not my fault and the changes that will take place ultimately cannot be prevented, I feel like I am failing my children, and failing my husband. They have never said this although I can occasionally see the load or toll the changes are taking on them. And so far, I am still reasonably functional, so I am not caring too often to think ahead!
And for women without a partner (male or female), they become even more isolated after dementia, and miss out on the help of a BUB. Whilst there will be many challenges ahead for us both, I feel very lucky to have one!
The impact of not being able to ‘care’ for my husband and children, in the same way I have for all of our lives together before dementia, is significant. and the feelings of being a burden, and of guilt are never far from my reality. Not to be able to ‘provide/ that same support, and then, to become the one needing support at such a young age, is also difficult for someone who has been fiercely independent, and as well, who has always wanted to, and been able to be the mother-wife ‘caring’ for them.
Loss of identity. loss of self, loss of feeling like I am a ‘good’ wife or mother… these thoughts all come into play and never quite to go away.
As their mother, I had always thought it would be me who was always there to support my children and their children.
As a wife, I had always thought we would grow old together supporting each other, but that is changing, as my BUB takes over more and more things that I can no longer do, almost every single week.
Perhaps, after all, the ‘twilight zone’ as some people call the latter stages of dementia, is going to be a fun place to be?
Anyway, I have run out of words… I made this short digital story a few months after being diagnosed, and think it probably says it better than I have managed to ramble on about it today!