Women and Dementia #3 – DAM2015 Day 3

 

kids and dementiaToday’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!

18 thoughts on “Women and Dementia #3 – DAM2015 Day 3

  1. Pingback: Having an ‘old persons disease’ #DAM2015 Day 16 | Creating life with words: Inspiration, love and truth

  2. Pingback: Women, families and dementia #DAM2015 Day 6 | Creating life with words: Inspiration, love and truth

  3. Dear Kate,

    I wish I could take all your pain, your fears, your guilt and smooth the edges. I wish I could help you focus only on the strength of your love for those around you and for all of us who have come to know you.

    I wish I could help you focus only on your family’s and our love for you. I want to say, “We love you as you are and as you will be. You have given us so much with your perspective and your love, let us give some measure of peace of mind back to you in exchange.”

    I am barely able to type this for the tears from your video as they help me to begin to understand what Gregory must have gone through but was unable to share with me. His inability to share was due to his loss of language.

    Also, I believe that the Dementia/Alzheimer’s blessedly put up a buffer to the reality of what he was going through. In addition, the safe zone in every day living which I was able to create for him gave him peace.

    So I love him with all my heart, more each day, and say it was and is my duty to be there for him as he always, even today, has been for me. He is not a failure, he owes no apologies, he is love. He is my life.

    I have no control over the details so I will embrace him always as he is, as he will become. I love him More Than Ever (the name we together gave our trust and educational foundation.)

    Gregory knows, and I often tell him, how much I love him and I hope he knows that there is nothing in our relationship, in our 40 years together, in the world that he needs to apologize or feel guilty about.

    I also know he has forgiven me my trespasses and I do not feel guilty. There are some things I would have done differently during our journey with Dementia/ Alzheimer’s but I did the best I could, and everyday I learned anew, and I did it with love in my heart.

    My “Intuitive” described the hole that has been torn out of my chest, around my heart; with its pain and loneliness and tears; as the sacred place where Gregory and I can still be, and always will be. together. I will not try to fill that hole, I welcome it.

    Kate, may you find peace and comfort in your great love of family and of life and may you be reminded that all things are impermanent and this can be the joy of life as you quietly sit with it today and then tomorrow. I don’t “know” you Kate, but I continue to come to fall in love you!

    Fondly,
    Michael
    http://mhorvichcares.blogspot.com

    • Actually Michael… you do smooth the edges, and your friendship and wisdom, and honest sharing helps sooth my soul and heart. Thank you. And I have found great peace, and comfort on this train ride, and my life has become one of intent, purpose and hopefully compassion. x

      • Gregory has held on to part of a poem that speaks of: “Simplicity, Patience, and Compassion.” (Enlightened Heart, A Poem by Lao-Tzu, 571-??? B.C. Edited by Stephen Mitchell.) Every night he would recite those words from the post-it I printed and put on his nightstand. It is now in a frame by his bed at Lieberman. I seek the same for myself.

  4. Kate – I can understand how you must feel because my mum has lost her ability to care for herself and I do miss her advice and help raising my own children but please let all the guilt you feel about the perceived loss of your caring role be cancelled out by the pride you must feel in showing them what a truly inspirational figure their mother is. What an invaluable lesson – and one that some mothers never get a chance to demonstrate in the definitive way you have. Be proud.

    • Thank you… the guilt is not there all the time, or the sadness, but it does tend to ‘loom’ in the background still. It definitely has not stopped me living beyond the diagnosis, thankfully

  5. Hi Kate me again. I have just posted this on Talking Point:

    How Is It For You Maureen?
    I have been following a Blog by Kate Swaffer and this short video is so helpful for me to gain some understanding of what it might be like for Maureen to have dementia.

    Kate writes so vividly and has such an incisive mind.

  6. Give us this day our daily Kate. Your posts continue to inspire me in my role as a care partner. Those incisive thoughts of yours are so helpful in my bid to see the wood from the trees. Look forward to the day we can meet.

  7. As a woman on living on her own with Dementia, great post 🙂 Family still not at the Mum/Gill needs support stage yet so I do feel very isolated, worrying about the fact that I am my daughter’s support still (she is not ready yet for it to be the other way around because she lives with her own struggles). I am trying to ease her into it gently by asking her to accompany me to appointments which I do alone at present.

  8. Inspiring – sadly inspiring. You have a “friend” here across the world. Whatever else is true, you know how to connect with other women.

The only thing missing in this global conversation is YOUR voice... Thank you.

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