Ramblings from the UK on dementia, life and grief

The week I was in the UK I managed the symptoms of dementia on my own most of the time, except when they were noticeable!! Why it is so hard to ask for help, to mention what is happening, rather than to hide it is mostly beyond me, other than the fact I was fiercely independent before the diagnosis, and of course this does not change easily. The symptoms of dementia are actually a pain in the arse, and I’d prefer to live without them, but as I have no choice, it seems better to make the most of life and try to ignore them when possible. One morning, I went into the shower dressed and with my glasses on, the sort of thing no one else sees. Of course my dear husband would have noticed my confusion, but as he was not there, it went unchecked. But it doesn’t really matter as the only issue was the wet clothes. And clothes will dry! Oh, and of course, my pride and respect for myself. Although no one else saw this and the various other challenges that happened, it is still obvious to me, and my pride.

I often wonder why this happens, and suspect it is simply I’ve always had a strong commitment to myself, and as it feels like I’m letting myself down, and it therefore attacks my pride and self esteem. The best way to deal with it is to plod an and get on with my life, to get out of my room when travelling and force myself to paddle harder; it is too easy to give up or ease up on the paddling when I’m alone, at least for now, and I’m not looking forward to the day when no matter how much I want to, paddling won’t work. This is of course already happening, and there are many things I have given up. For example, if travelling with someone else, I’ll leave finding our way to them completely now, in order to save my brain power.

Alone in a hotel room, I’ll spend more time meditating and focusing on the tasks ahead of me; for example, things like reading my notes over and over to make sure when I see people, I get the names correct or the events in order. My notebook works overtime as I plan and replan, read and re-read, listen and re-listen to recordings if I have them, go over twitter feeds and look at Facebook musings and photos, and re-read my blogs. This practise is still working, and helps me function in front of others, assisting with my recall much of the time. It is not unlike preparing for exams.

But there are minor slip ups, especially if I’m tired or get excited or try to speak at the speed I used to. My thinking is still quick, but the ability to get things out in the old way has changed. I’ve trained the inner voices in my head, and if they ever appear, the old television screens that used to work in conjunction with each other, allowing me to function so well, have had to go into slow motion, or be switched off. Much of the time now, they don’t even appear, ensuring I remember the changes in my MRI scans are real, and it is probably true o matter how hard I work, it will get me in the end.

Being born is also a terminal illness, a death sentence, so the trick is not to let dementia make me feel too overwhelmed by the reality it is a terminal illness and I will die. I’ll die anyway, perhaps even from something else before that ‘gets’ me!!

How do we get through life without the ups and downs anyway? The black and white must be graded by the grey, always and without the different colours of life we would be totally bored, would not get excited and happy about something amazing, as we’d not know it was different. I’ve spent many hours last week discussing the fat of life with my travelling buddy, an interesting and insightful young man. I’ve been challenged, and I’ve challenged him, numerous times. We’ve both squirmed occasionally too as we are mildly similar in nature, both quite sure of ourselves and our opinions, but also willing to listen and learn. Fun, confusion and lots of laughter.

And then we’ve shared our different feelings of grief, and the mourning by Michael’s family of his death; they were unable to come to Australia, and so the reality of his death was perhaps tinged with a sense of unreality. Not seeing someone you love in the final days of their life, not attending a funeral or seeing them in a coffin plays on the subconscious and we can feel like maybe it is not true. This is one reason it is so important to involve children in grieving and mourning, rather than hide them in an effort to protect them. Their imaginations of what has happened, or not happened, is far more likely to affect them than the truth. Obviously the truth needs to be told in ways that are us it able to each age group, but nevertheless, it needs to be the truth. We learn so much from death and from grieving, about ourselves and about others, but more importantly, grief is a sign of love, and allows us to keep the memories alive.

Life goes on, the road takes us to lots of places with many bends or forks along the way, we occasionally get to meet our wonderful imaginary friends… and we live until we die, all the more reason to make living be every best we possibly can.

12 thoughts on “Ramblings from the UK on dementia, life and grief

  1. Kate – You write with such elegance yet I understand how you depend on your notebooks and review your blogs over and over before they are posted. I do the same and I still allow mistakes to slip through that I’m convinced would never have fallen through before. Little things scare me more than they used to as I’m also the full time caregiver for my husband.

  2. Just want to send you – what? – my love, my sincere wishes that a bloody enormous miracle would happen, my gratitude that you voice what my mum is going through and it helps me understand more… All the very best to you Kate x

  3. Great post Kate. But I don’t really agree with something right at the end. I don’t want to scare you … but since I know about dementia I’ll just mention it here.

    “we live until we die, all the more reason to make living be every best we possibly can”.

    There are different degrees of living – there real living, then there’s “existing” when a person with dementia has no physical or mental response.

    Something to think about.

    • I’ve worked in a secure dementia unit so have a good idea of what’s ahead… just prefer not to think about it too often! But thanks for your concern and friendship. hugs xx

  4. Just a quick note to tell you I will be gone for a few days as I have company and much to do. I shall return to your world shortly…..Blessings and love…VK

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