Yes, that is what it is sometimes like. I have lots of gay and lesbian friends, and some have talked about how challenging it was to come out about their sexuality. Their stories and feelings of despair in some ways parallel those of mine coming out about dementia. There are many people who still believe sexual preference is just a choice, or it can be fixed, and is something to be feared. Thinking about this and then relating it to dementia is easy. The stigma, the prejudice, the WALL OF SILENCE, the myths, the people telling you it is not true, or it is not as bad as you think, or saying you are really just like them, likening your memory loss to their own normal forgetfulness, make it more difficult to live with. Many just don’t seem able to get past their own fear of what is happening to me, and therefore to them. My blogging about dementia is about coming out; it is not just about recording my world for me and others to remember, but it is also about breaking down the stigma and that dreadful wall of silence. Coming home from the shopping this morning, following our longer than usual coffee session where we had been talking about how the dementia symptoms are getting noticeably worse, the tears flowed as we started to talk about the possibility of me going into an aged care dementia unit. My husband is adamant he will look after me right through to the last post. I then wondered what if I don’t remember him, and won’t want to live with him anymore. These and other thoughts and possibilities are flowing through my veins today. They are more often taking over the easiness of life, and make it harder to keep fighting the good fight. I said to a friend this morning, life is like being at sea, some days it is calm, some days one hell of a storm, other days just a few undercurrents. Grief is like that too, and dementia just adds more components to the storms, an extra battering and pounding upon our hearts. It was not only a strange experience, but a very painful one not to have remembered a girlfriend’s wedding, but the thought of not knowing my husband or children is far worse. I am forever grateful and thankful to everyone who is helping my coming out about dementia less painful or lonely, and more meaningful. What goes around comes around and for me this circle of life is far better shared together. Thank you for your love, and for your willingness to share in my journey and be part of my world.
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Kate talks about being on a dementia train a train she can’t get off of. I’m riding on the same train because all you can do sometimes is to provide some company on the ride. When the train stops at a station I could get off but Kate cannot. I choose to stay holding her hand and staying close offering what company, friendship and help I can.
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The parallel that you create of ‘coming out’ being similar to revealing to the world your sexuality is a powerful metaphor Kate. Your willingness to come out early, in the face of potential loss of face, standing and friends acts as a beacon to us all. In a world where little shocks anymore, what intrigues me the most is people’s fear of difference and diversity. It is through exposure to difference that the wider community can learn to embrace diversity and deny fear of that which is different. Dementia aint ‘sexy’ – most see it as scary – and it is that fear which maintains the context of misinformation. On the topic of your personal fears about your future, you act as a voice of many people who live with dementia and those who love and support them. Your honesty in the face of a speculative future allows others to feel supported and less alone. All power to Pete – it can be done, mate. I’ve seen it done. The person you love will be there until the end and you can be there for her.
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Oh Kate, Peter brings tears to my eyes. What love, what devotion. What would you do without him? But then you’d do the same for him, would you not? I can’t imagine what life is like for those without that support and companionship.
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Brilliant piece Kate. Thanks for speaking it. That silence, it’s hell.
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I love you and will never leave your side. I could never leave you strapped to a chair in front of a TV. What we face maybe awful and confronting but it will be better than that.
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No chance of a seatbelt for me, I’d just lose enough weight to slip out from underneath it!!! And thank you for your love. I for one am hanging onto Jeff’s belief I won’t forget you or our amazing boys. xx
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Hi all, My story is different, yet similar… My Mum had bipolar, schizo-affective, schizophrenia disorder but we followed a similar process. To talk, or not to talk about our experiences. Mum would say to me, ‘don’t tell them that’ and I would reply, ‘but if we don’t tell them, how will they understand?’. Kate and I met and Uni, and she and another friend helped me through some really difficult times. I hope you remember Kate, and I hope your family knows that if I can help, in any way, they can call on me. Cheers Elizabeth
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Hi Elizabeth, yes, I do remember you and some of our chats with Sam at uni. Thanks for sharing, and for joining in on my blog. I hope all is going well in your world, especially your mum. Kate x
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Hi Paul and Jeff, I hope I don’t offend by replying to you together? Thank you both for following my journey on the dementia train, and for sharing your own particular insights, both in depth, both with real meaning for me. On the topic of being advised to ‘come out’ that was not the case, just my very direct way! In a memory loss group, only 2 out of the 5 people there with dementia had ‘come out’ straight away, and we both learnt there is a price to pay either way. Regarding making tea or coffee, I’m still okay at it, but it almost always takes the kettle a number of times to boil now before it is hot enough!! And then if my family or friends end up getting thirsty before I eventually get the job done, they make it for themselves. That is the wonder of love.
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Dear Kate,
Your thoughts amaze me, and I thankyou for sharing them, which gives me some comfort in knowing where my wife has been.
“Coming out” to me is a truly significant step, and your Diagnostician deserves much praise for leading you to an acceptance of Dementia, enabling you and your family to understand what you are likely to accept.
My experience is that you will remember your husband right thru to the last glimpse.
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Thank you Kate. Hearing your ups and down and the emotions that go with them, is a wonderful insight.
Your husband being adament that he will be with you to the end, sounds like my Mum with Dad. In reality it wasn’t possible for her to look after him. There were many times when he literally needed 24 hour care, he had unpredictable periods of 48 hour wakefulness. But without the ability to cope.
My Dad was always making pots of tea when friends arrived, so as dementia started to impact him, it was one of the fall back things he could continue to do, until he started to lose the ability to do things in sequence, eg, boil water first, rinse and empty the pot, warm the pot, add the tea, etc. Some guests tea turned up as milk with cold water. Then the opportuntiy for scolding himself and others became a real safety concern.
The need for micro level care, meant she couldn’t do basics for herself, like cook, dress herself properly, do the household chores, unless he could be present and controlled.
My mum one day turned from being his wife to his Mum. I don’t know how that would work for a husband, as Dads didn’t play the care roll, so would a husband easily switch to Dad, if not doing dad type things?
Children became a constant source of confusion, eventually just familiar faces without a real history, and certainly not his children.
Sexual activity can be very difficult, emotionally, physiclly and ethically. You both need professional advice for that. For example, if you, Kate, become conceptually, you as a young teenager, what is appropriate? You may return to being ‘asexual’ but what will happen to your husband, and how many years might that last?
Paul
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