Drawing back the veil over My Hyde

Drawing back the veil over My Hyde.

I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…

……

BC9B6263-995A-4BF6-B7C5-126B31B82403

I’ve got brain disease, I’m told.

My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.

You meet me at a conference or a small meeting and you probably think “really?”.

Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.

So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.

And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.

But you don’t see me at home.

I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.

When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.

4002B1F7-3188-4736-A9C9-C774A565F91A

I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.

Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.

In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.

And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.

I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.

Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!

I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.

I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.

A79D69DC-2FF5-4D8A-868B-42D37352BFD3

So here comes Christmas. Lah de dah.

Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.

Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.

I’m not the person I once was, and it’s hard to accept.

8269A749-068C-4B50-8C8C-DACEDBC17618

I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties. And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.

It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.

The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.

I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.

There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?

When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?

In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.

What about the memory service people? Their risk aversion is stifling.

I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!

It has happened several times. So I don’t have any real faith left there.

I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.

And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.

Because that’s what makes life worthwhile at the moment.

In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.

57969A35-C9DE-4CF2-BF99-CFDE23AD3BC1

 

 

9 thoughts on “Drawing back the veil over My Hyde

  1. Hello George,

    I’m glad you posted this blog. This is a particularly tiring time of year for us all and your insight into what tires you will be informative for your readers. Could I re-post your blog on our blog at http://www.daughterlycare.com.au with an attribution to you and a link back to this blog ?

    We specialise in providing enabling care for people living with a dementia. I think it would be helpful for our clients’ adult children and partners to read how you are feeling and it will help them understand their spouse of parent better, on many levels.

    Kate Lambert, CEO, Daughterly Care

    Like

  2. Thanks for sharing. It is really helpful to know. I find it tiring too when somebody talking to me goes off track and cannot stop relating their experience. I wonder if huge headphones will help with the noise. It will block the noise and signal to others you don’t want to be disturbed at what you’re doing, cooking or whatever.

    Like

  3. George I wrote a longer comment yesterday but managed to lose it. Your comments are really worthwhile, they don’t come over as anything other than a great factual insight into what you and many others have to contend with. It gives people a glimpse of life with this unforgiving and poorly understood disease. People do still have a life but are robbed of elements of independence and the system too often leaves them to flounder with a little medication and assessment visits. There needs to be better progress and a positive push in combating this and your comments shine a light on the conditions which need to be understood. Keep up the very good work, this condition affects us all and we need to understand that questionable behaviour etc are not a matter of apportioning blame. Somehow we’ve got to work with this or lose partners, family or friends from our lives. Your blogs are worthy of more so think about having them published. They’re not dreamy stuff of TV, they’re the real thing. We all need to learn more. Best regards Les

    Like

  4. George it felt as though you were writing about my Mrs Hyde. No patience, exploding easily , biting back the critical comments,and especially the taking things personally . I really lashed out at someone in the AS recently because I thought a perfectly reasonable set of guidelines he had been asked to do were a direct criticism of me. As the person involved also has Alzheimer’s it was unforgivable to have hurt him so much. Thankfully he accepted my apology because as he said @ You have to have this disease to know what can happen. I dread how much this type of response is going to hurt those I love in the future. Bloody Dementia. Shelagh Robinson

    Like

  5. Really thought provoking post George! I find myself thinking back to the way my mother reacted when she had a mixture of Alzheimers & vascular dementia. Christmas time was particularly bad. Continue writing so honestly about how you feel, it is very insightful and SO valuable for those who need to understand from a place of non-understanding!

    Like

    • Thanks for your comment. I sometimes worry about being a bit too introspective in blogs, but I do it to increase understanding and insight for others. God knows, there’s little if it around!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s