Tactile Therapy from a Residential Perspective Caring for Huntington’s Disease

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