Tactile Therapy from a Residential
Perspective by Alison Ball
Chapter 13 of "Caring for Huntington's Disease: A Handbook
For Healthcare Professionals", Second Edition Edited by Dr.
Edmond Chiu, A.M.
In the 1980's and early '90's the best care for people with Huntington's
Disease was still a very new field. I was asked to write this Chapter
for the Second Edition of the handbook because although I had moved
away from the field I did still provide some massage for some people
who had the disease and also I had, by then moved into the field
of Somatic Psychotherapy
This chapter will examine the benefits of touch, primarily by way
of massage, for the person with Huntington's Disease who is living
in a residential setting, and will examine the experience of a massage
programme at the Arthur Preston Centre.
TOUCH DEPRIVATION
Any person placed in a nursing home or hospital for any length
of time for whatever reason is commonly deprived of usual and ordinary
physical contact with those with whom they are close. They are also
often deprived of other sensual stimulation such as baths, time
in the sun, exercise and the contact possible in other leisure pursuits.
In his book, Touching, Ashley Montague (1971) has set out the vital
significance of tactile stimulation to the growth and development
of infant human beings and it is clear that, even for adults, tactile
deprivation can mean not only diminishing contact with the reality
of the world and other people, but also gradual loss of contact
with the reality of ourselves as feeling human beings.
For persons with Huntington's Disease, this is exacerbated by the
effects of the disease. Perception of their own bodies is diminished
so that they have increasing problems in locating their bodies in
space and with the feeling connection between body parts and volition.
Another effect is the frequent perception that they are less physically
attractive and that many people are no longer willing to touch them.
The person with Huntington's Disease, particularly in a residential
setting, has therefore often been deprived for a long time of any
touch other than that which must be given for the practical purposes
of hygiene and dressing. This adds to the person's many losses and
epitomises the sense of no longer being a person of value. A person
in this situation, particularly if confined to bed, will often be
suffering a living death rather than living until they die.
Alexander Lowen, in his book, Bioenergetics (1975, 54), says:
Mind, spirit and soul are aspects of every living body. A dead
body has no mind, it has lost its spirit, and its soul has departed...
When your body loses some of its aliveness...you tend to withdraw
... illness has [this] affect ...[you] sense the world as at a distance
or see it as through a haze.
Regular massage could make a significant difference for people with
Huntington's Disease.
BEGINNINGS AND BENEFITS
The original physiotherapists at the Arthur Preston Centre set
out the benefits obtainable for people with Huntington's Disease
through relaxation massage in a group setting (Chiu & Teltscher,
1985, 95). They listed benefits ranging from sheer pleasure to improved
self-image and body awareness, a reduction of physical and mental
tension, improved breathing patterns, decreased involuntary movements
and a fuller range of joint movement. Additionally, massage stimulates
and vitalises the muscles and the skin, thus improving circulation
and the general condition of the skin - an important consideration
for immobile people. Massage provides not only relaxation, better
sleep, comfort and sheer sensual pleasure, but also a deep and critical
connection between the person, the world and other human beings.
Of prime importance is this deep connection it can give with one's
own self and the possibility of intimate relationship with another
human being.
Very early in the life of the Arthur Preston Centre, the physiotherapists
instituted regular group sessions where residents received a gentle
stroking massage from staff and volunteers. No particular expertise
was needed to give or receive this massage, only a willingness to
participate in a quiet setting where light was subdued and pleasant
music was the only sound. Residents remained fully clothed and lay
on small rugs on the carpeted floor. The volunteers or staff members
would move around the group gently stroking arms, legs and faces.
It soon became evident that, during the massage, involuntary movements
almost totally stopped and residents who participated became calmer
and happier in their daily lives. Nurses, especially, valued it
and quickly became keen to introduce the more difficult residents
to this relaxation massage group. Since then, there has been no
doubt in the mind of anyone at the Arthur Preston Centre, whether
staff, volunteer, resident or family, that massage for people with
Huntington's Disease, particularly those who live in a residential
care setting, is highly valuable
At a later date, a further development took place when students
from the Melbourne School of Tactile Therapies (MSTT), as part of
their training in massage, began to come to the Centre to offer
massage. As each student was required to complete six hours of voluntary
work in a community setting, the proposal was that the director
would accompany a group of students to the Centre and would give
the students some understanding of the Centre and of Huntington's
Disease. Staff were happy to ascertain which residents were interested
in receiving a massage and there was no lack of willing recipients.
It was determined that after the evening meal was a suitable time,
that residents would usually remain clothed, and that in the absence
of massage tables the residents would usually lie on their beds
for the massage or perhaps receive a head and shoulder massage while
sitting in a chair.
CURRENT HAPPENINGS
Now, about seven years later, the joint operation continues. In
the words of one volunteer who began four years ago as a student
from MSTT and who has continued to come to the Centre since then
on a regular basis, the experience of massage seems to allow the
person with Huntington's Disease to reconnect with another dimension
- one they feel they once had but now have lost. This volunteer
now always massages the same person, although in the past he has
massaged others. He believes that massage from an outsider also
allows for the passive release of frustration without any fears
of repercussions. As well as the time spent on the actual massage,
he finds it essential to spend time really listening and endeavouring
to understand what the person or persons he massages is trying to
tell him, for they will always have some particular items of news
or information that they have been saving up for him. This volunteer,
who works in what must be considered an almost ideal way, has a
professional respect for and acceptance of the person he massages
and will always ring the Centre if he is unable to come as arranged.
SOME CAUTIONS
The professionalism of the volunteer mentioned above is worthy
of note and is of great importance in the success of his work, but
because his level of involvement is rare it is worth considering
whether it is reasonable to rely on volunteer programmes. Ordinarily,
most people would arrange a massage by paying, from their own funds,
for an independent professional person, of their own choice, to
give them a regular weekly massage. In this way, the receiver makes
a free choice and maintains a sense of independence and pride in
being able to pay for a service. The person then need feel under
no other obligation and has the great benefit of being able to form
a one-to-one relationship with the giver of their choice. The person
with HD deserves nothing less if at all possible.The experience
at the Centre is important in this regard. It seems that any difficulties
that have come about in the joint programme have been mostly related
to the fact of Huntington's Disease itself and because the programme
is a voluntary one - and involves massage!
To receive a massage is to open oneself up to another person in
a very personal way. Massage is best received, therefore, in a very
safe environment and ideally received from the same person on a
regular basis. The greatest benefits will ensue when a trusting
relationship is built over time between the giver and the receiver.
The giver gets to know the receiver as a person and gets to know
his or her body. The giver will learn to better understand the speech
of the receiver so that the two can engage in important conversation,
and will come to understand the receiver's idiosyncrasies and what
sort of massage is particularly beneficial. The receiver learns
to relax as trust in the giver grows and can learn to indicate particular
likes and dislikes which, in turn, will make for more satisfying
contact for both.
On the other side, giving massage in any conditions is an exhausting
occupation. Not only is a fair degree of physical stamina required
but, of even more importance, it requires a giving of the emotional
self. One cannot massage another human being without, oneself, being
touched by that person. The usual social boundaries are transcended
just by the fact of the actual touching required. If the masseur
does not allow himself or herself to be touched in this way then
the massage will be mechanical, and that will be picked up by the
receiver as a lack of care and caring. The giver, therefore, must
also inevitably open himself or herself up to the receiver. In this
instance, where the receiver has a distressing illness, the giver
can be in double jeopardy. Being emotionally open, the pain may
be too great to bear if one is not used to being with HD persons.
These requirements for successful massage can lead to problems,
especially in a voluntary programme. Over the years many students
of massage have come to the Arthur Preston Centre. They have come
with good intent and many have fulfilled their "contract"
and given their six hours of massage in this community setting.
As the example of the man above shows, many of these students have
returned again and again, becoming very attached to particular residents
and giving their services voluntarily for many months - even for
years in a couple of instances. But others have become frightened
and have either decided not to come to the Centre at all or, after
short contact, have been unable to return. Those of us who have
worked for many years with people with Huntington's Disease tend
to forget what impact is made on the ordinary person when confronted
by the reality of such a devastating disease.
If one is being paid professionally to offer such a massage service,
then one has usually made a clear decision about the field of work
in which to be involved. But when a service is given free of charge,
then it is very difficult to continue to put oneself through emotional
trauma. This becomes of crucial importance when the service being
given is massage, for all the reasons outlined above.
Other more obvious cautions pertain to the need for some degree
of supervision of the programme. Someone attached to the organisation
must be aware of what is happening in relation to the massage of
residents. That person needs to be aware of who is actually coming
into the Centre, who is being massaged and how both parties are
responding. Care must be given to the giver so that he or she feels
appreciated and any insights regarding the overall care of the receiver
are given credence. Care must be given to the receivers and the
prospective receivers. Of absolute importance is to ascertain whether
residents really want to be massaged, and if so, are they happy
with being massaged by a particular person, especially if the giver
is someone of the opposite sex.
Lastly, it is important to be aware that work with disabled people
will inevitably attract an occasional person who will consciously
or unconsciously want to exploit the vulnerabilities of clients.
This applies in all areas of staffing and with any volunteers, but
is of particular importance in the area of massage. The guideline
is for staff to have an awareness of what is happening and to take
note if there is a feeling of discomfort amongst staff or residents
in relation to a particular person. This will mean that discussion
must take place among all parties so that concerns can be checked
out.
The above concerns aside, for a person confined in a residential
setting any personal contact with another adult on a one-to-one
basis is so worthwhile that, on that basis alone, the voluntary
massage programme at the Arthur Preston Centre must be counted a
great success. All the benefits seen by the original physiotherapists
are clearly evidenced. Relationships are vital even in the lives
of those of us who are not ill, and massage given in the context
of a caring, professional relationship such as that which exists
between the voluntary giver and the receiver outlined above is crucial
if the quality of life of the person with Huntington's Disease is
to be enhanced. For them, no less than us, such contact is the essence
of maintaining connection with the world and with themselves, and
brings with it a continuing sense of their worth as human beings.
REFERENCES
Chiu, E. & Teltscher, B. (Eds) Handbook for Caring in Huntington's
Disease Huntington's Disease Clinic, Melbourne, 1985
Lowen, A. Bioenergetics. Penguin, 1975
Montague, A. Touching: The Human Significance of the Skin. Perennial
Library, Harper & Row, 1971
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