Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

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Bracken
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Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by Bracken » 30 Apr 2013, 22:38

[Dear Readers,

Our friend Hennie has asked me to post the following seminar on his behalf as May's Speakers' Corner.

Thank you, Hennie.
Love, Bracken.]




Dementia
Bringing home the child



Autumn day

Lord, it is time; the summer has been grand.
On the sundials your shadow cast
and on the fields the winds be sent.

Command the last fruits to refine;
for two more southernly days they strive.
Urge them to completion and drive
the last sweetness into the heavy vine.
Whoever has no home now, will not built one anymore
Whoever is alone now, long alone will he remain.
Will wake, read, write long letters,
and through the avenues back and forth,
wander while the leaves are drifting
Rainer Maria Rilke
© English translation by Philipp Kellmeyer

1

It happens to people, mostly older than 65, but sometimes still in their late 40's, to a little bit more men than women. Sometimes it sets off suddenly, in another case in bigger or smaller steps, still another person just slowly slips away.
The memory staggers, at first one can't quite remember what happened about an hour ago, in a more advanced stage you have forgotten what happened one minute ago. You just can't learn new things, something is really wrong with the imprinting. Often the character changes, people become more aggressive, or even softer, more complaining, more talkative, or more quiet. The body also gets affected, a foot, a hand, the mouth has weakened. Talking becomes more difficult, in the end you lay on the bed, in need, until one day you can 't even swallow anymore. But often one has passed away, before reaching this stage.
Dementia. A collective term for brain diseases with the above mentioned visible and noticeable characteristics. Doctors discern more than 80 types of dementia, but they can only be sure about the right diagnosis post mortem, and sometimes there even can't be found a cause. There isn't any real therapy, although blood thinning substances seem to have a tempering influence on the process of dementing. In the early stage of the disease physiotherapy helps regaining some strength and maintaining as good a condition as possible. Logopaedistic aid is given to improve speaking, breathing and swallowing. In the long run this therapies won't keep the patient from becoming immobile and the nursing home has become his residence.
Again I was awoken by the cold, early in the morning, one December day. 'My quilt is much too short.' I call my wife and rage against her, that my quilt that I have for five years already, is much to short, it isn't 2 meters, 1.80 meters at best and she has lied to me about this for all these years. I keep on ranting about this all morning, until she has had enough, takes out her measuring tape and measures the quilt. 2 meters long. I pick up the quilt and hold it in front of me and see that it is much longer than my height and I am 1.80 meters. I am convinced. Later on my wife says that you can't buy any quilts shorter than 2 meters. She is right, I remember. She buys me a new quilt, 2.20 meters. I feel ashamed and I am happy with the quilt.
A dementing person in the early stage often has good insight in what is happening to him. In some people brain functions seem to restore themselves quite a bit, there doesn't seem to be much wrong with them, in other patients these functions disappear permanently. Some of them can live quite reasonable with their disease for 10 or 20 years, but most of them deteriorate more quickly. On average the a person dies 6 or 7 years after the diagnosis has been made.
To my wife life in worrying about me is far from easy. She misses the sexual intimacy, but even more the emotional intimacy we used to share during many years. I often don't get anymore what it is all about, I am somewhat lost in my feelings. And then there are of course the worries about practical things : I still take care of my pills myself : Do I take the right ones at the right time? Sometimes I am not sure about this myself. My wife suggested that she would take care for my medication, but I am not ready for this yet. Sometimes when I take a stroll she is afraid I will start to wander, especially when I have a bad day. And she fears the loneliness if I will suddenly die, or when the disease will have crippled me that much that I have to stay at the nursing home, no longer able to communicate properly. I once heard somebody say about dementia : "He had the disease, she suffered from it."

2

I merge in spirit whit my core tree. It is January and fairly mild. I can feel how happy he is, he sucks in my soul. I feel warm and it is pleasantly quiet in my head. I feel that I am looking around me from a great height. I am long and slim, and rigid, hard but flexible and full of life. Slower than human beings, Whitebeam I am called, my berries are floury but sweet after they have been cooked. I call him Jacob. I have called him by that name since I met him after I "saw" where I could find him. After we spent some time standing and lying in this way I want to detach myself from Jacob and return to my place in bed. He won't just let go, calls me back, we are one again, again I say goodbye, but he takes me back. After this third time I come to myself , more clear than before this going together, more relaxed. I give thanks to Jacob, not longer tied to him now.


Solo Ritual of Timely
Needed : a candle and matches or if you don't trust this an electric light ( e.g. a torch on batteries)
Prepare by taking some time of rest and placing your candle
Light your candle; speak / sing Awens
Open your circle
Say a prayer if you feel that is the right thing to do now
Bring light to the directions
Do the Light Body Exercise
Take a point from your memory, about 1 hour ago
Try to remember what has happened since that point, you needn't be very detailed, until you come to the moment where you are now in your ceremony
Stay a while here and now; enjoy the relaxation
Imagine the things you are going to do in the coming hour
Become aware of your body and gradually let the Light Body fade
Give thanks
Close your circle
Put out your candle / lamp

3

In line with the processes going on in my brain, I begin to remember my childhood more and more, the time in class, the time in kindergarten and the time before that; day and night at home except when I am staying with granddad and -mom. The memories are very vivid, I am there again, I am again who I was during the event that I am remembering.
The child in me comes alive and threats to take over. In the old days this state was know as "grow childish", not to be mistaken for "acting childish", which means that someone keeps hanging on to a simple view, where he knows better or "being childlike" what indicates someone who has never become an adult. It is very tempting to give in to the child. Still I feel that it is better to lead the child to the big world, in the end I am an adult, and not even a young adult for that matter.
Sometimes the child is happy,playful with weird thoughts and jests; one can laugh with me, although some times it gets out of hand. On other occasions the child is sad and cries about the most futile things happening. And sometimes it is stubborn, nagging, a nuisance. It acts on impulse, it is pedantic and it is quarrelsome. And it forgets quickly and swiftly changes moods. On other days it slumbers; I am my almost old self again and I wonder... The loss is big, hard to bare. The other day, my wife said to me : "I think now I understand how you were as a boy scout." I used to tell her stories about the things I experienced when I was a boy scout. She could never relate to that very much but now with me behaving like I do she suddenly understands how beautiful these days were to me. My wife gets to now me still a lot better, although much to her grievance.
The child and I are getting closer and closer. I fall over every now and then and it is difficult to me to keep my balance. They give me a walking aid and I am no longer allowed to take strolls without company. Communication is messy, I can hardly understand what is being said to me. My speech is difficult, my wife often doesn't grasp what I am saying, also because my articulation is bad and my voice is that soft that it can hardly be heard. The child (but is it a child?) and I live huge adventures in our head, but we can't share them anymore. Sometimes I am very exited and strangely, in these moments I can make myself reasonably clear.

4

Ritual of Timely

Needed : a candle and matches or if you don't trust this an electric light ( e.g. a torch on batteries) Something to eat and drink.
Prepare by taking some time of rest while your wife places the candle
My wife lights the candle; she speaks / sings Awens and invites me to join in
Open the circle; my wife supports me while we are walking around the circle
My wife speaks :
May I find peace at the core of my being
May I find peace in the Grove
May I radiate peace throughout the world
She lets me say every single sentence together with her
I am seated or lie down on the bed
My wife greets the North and stretches out her hands while saying : "May peace reign the North"
My wife greets the South and stretches out her hands while saying : "May peace reign the South"
My wife greets the West and stretches out her hands while saying : "May peace reign the West"
My wife greets the East and stretches out her hands while saying : "May peace reign the East"
My wife turns to the center, making a giving gesture while saying : "May peace govern the World"
The last words I say with her
Do the Light Body Exercise
My wife says the body parts out loud, from foot to scalp, and I repeat her words
We are quiet / meditate for some time
We eat and drink, while trying to talk about what keeps us busy
My wife lets us get aware of the body and lets the awareness of the Light Body slowly fade
We give thanks
We close the circle
My wife puts out the candle / lamp

One day I am being taken to the nursing home. I can hardly stand and only shuffle a little bit with support. It isn't very clear if I do understand much of what is said to me. I don't know if I miss myself or other people.


Ritual of Timeless
When my wife visits me, she kisses me, she talks to me about all day life.
She does the Light Body while she softly moves her hand over the quilt that covers my body.

small

on such a day I want to die
in the softness of night
just wander off
in the shimmering morning light

in such an hour I want to live
just a bit loos from sadness
awaiting a new love
forgetting fear for a moment

now I want to hush
be simply simple
to get no more thoughts
light and lighter, small at last

6
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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by skydove » 02 May 2013, 21:45

Oh Hennie, that is so beautiful and tragic and human and contains so much love and understanding. I have a dear friend just beginning to suffer from dementia. I must not forget she is inside how she appears even if sometimes she forgets, I will remember for her. Thank you for writing this.
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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by Heddwen » 02 May 2013, 22:12

Hi Hennie, your seminar is eloquent, beautiful and honest. It certainly has the personal touch which I like very much indeed. You've certainly given me a lot to think about here.

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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by katie bridgewater » 02 May 2013, 22:12

I effing love you Hennie. You are the best. Never never change - oh, and your poetry sends ripples round the world.
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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by Hennie » 03 May 2013, 05:42

Hi Skydove; isn't it strange to see someone go forlorn just like that?

Heddwn, hope it will help you somehow

Thank you Kate! (language! :)

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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by Lora » 27 Aug 2013, 16:16

I'm terribly late on this, but thank you for writing this, Hennie. As the others say, it is beautiful and eloquent.
The child and I are getting closer and closer. I fall over every now and then and it is difficult to me to keep my balance. They give me a walking aid and I am no longer allowed to take strolls without company. Communication is messy, I can hardly understand what is being said to me. My speech is difficult, my wife often doesn't grasp what I am saying, also because my articulation is bad and my voice is that soft that it can hardly be heard. The child (but is it a child?) and I live huge adventures in our head, but we can't share them anymore. Sometimes I am very exited and strangely, in these moments I can make myself reasonably clear.
This part in particular was helpful to me. My mum has vascular dementia and I have seen her change a great deal over the past couple of years. So often we read about dementia from the perspective of medical staff or the relatives who care for them. We do not often hear the voice of those who have dementia. Over the last few months I have seen my mother becoming more childlike, and when I would visit her she would come and show me her favorite toy, which she would keep tucked up neatly in bed in the guest bedroom. Increasingly, it is hard to hear what my mother says, because her sentences cut off halfway and she speaks so very quietly now. Much more so since she broke her hip a couple of weeks ago. She has been out of hospital for a few days now and seems listless now, tired of everything. I hope that she too finds some adventure within her mind, even if she can't always share it with us readily any more.

Wishing you and your wife peace and comfort.

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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by chaldeonmenthe » 28 Aug 2013, 00:34

Thank you from deep within Hennie. I work as a carer in the field of advanced dementia, and your writings are so true and eloquent as to what I see on a daily basis that it made me cry. It is so easy when you see dementia day in and day out to forget the very basis of the disease. This is such a timely reminder that even when frustrated and pressed for time in a work environment the emotions and reality of my dementia sufferers must come first, and all else second. May I please share this with some of my work colleagues?

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Re: Hennie's Speakers' Corner Seminar - May 2013 - Dementia.

Post by Hennie » 28 Aug 2013, 05:20

Hello Lorraine, I hope your mother still has something to dream of. Good to hear this text helped you, thank you.

Chaldeonmenthe, may I please first offer you my respect. Although I am not in a 'home' , I can imagine how hard this work is. Please, share, sharing is why I wrote this in the first place. Don't be so hard on yourself, people suffering from dementia can be a pain...

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