Questions and Answers

As usual we have included a Question and Answers section. (Supplied by the Auckland) We hope you are finding these helpful. As always we welcome your questions that will be answered by a Social Worker/Field Worker. Your questions can be sent either to your local Social Worker/Field Worker or to the Editor. Strictest confidence will be maintained. Please indicate if you wish to remain anonymous. Editor

QUESTIONS and RESPONSES (SP indicates special person with HD diagnosis)

Question One

For me the recent weeks have been the most difficult in my life. One of my children (aged 24) told me and SP that their genetic test result was positive. This news has really affected me more deeply than the news of SP’s Huntingtons diagnosis. I am worried sick about all my children and how I will handle them getting tested, if and when.

Response

Having loved and nurtured your “child” for 24 years and your other “children” for their life, you will have developed different “parent-child” relationships. These differences are important and will influence how each of these relationships change over time and in response to new circumstances. At this post-test period you will want to strengthen the “parent-child” bond for the mutual benefit of each other. And you will probably want to strengthen all the “parent-child” communication, particularly if SP is having difficulty in these areas.

But, first, allow yourself to share your own reactions, feelings, hopes and role options with a close friend or minister. You may wish to write yourself a confidential letter about how you are feeling and in that way “let out” your mixed thoughts and emotions.

Also, if you feel the need, allow yourself to seek short-term counselling to help prevent a build-up of unresolved grief reactions. You could also treat yourself to some time-out: to reflect, renew and prepare.

From an information perspective you can ensure that you keep up to date with genetic and medical scientific developments. The future is looking more hopeful. Also keep clarity about the differences between children “living at-risk”, those like your 24 year old who are “gene positive” and the actual “onset of disease” as with your SP. It is also advisable to keep clarity about the usual changes all people face and cope with, which are not HD) related. All “parent-child” relationships change as each person ages or experiences new stages of living.

There is the saying knowledge is power, so try to apply this to your lives.

Question Two

SP has been living in a private hospital for two years now. When SP was in the rest home, we were able to enjoy visits and drives out. We talked, laughed, ate and enjoyed each other’s company. But now SP is in a wheelchair, has great difficulty talking and is messy when eating. I want to keep visiting but do not know how to enjoy the visits or what to do when I am there.

Response

When two-way conversation is limited, self-expression lacking the usual spontaneity, and depth of discussion near impossible, then all interactions are compromised. You can discuss with staff at the hospital about the techniques and strategies they adopt and also identify what still works well for you. That is how to phrase conversations so that SP has time to process the information and to respond either by gestures or short sentences.

Using “props” will also help create “talking points”. That is the newspaper, magazines, letters, mail received, photos, jokes, poems etc. Hopefully you have provided a photo album (with photos dated, labelled and people named) for SP to share with others. A Visitors Book or Diary can be used by all visitors to record things, which SP might want to be telling you about. That way everyone has a single reference point to catch up on events (past and future). A “This is Your Life” book is also a great “prop” and if one has not been done, then this can be a “project” you can perhaps do together.

Between visits you may wish to send a postcard, letter with news clippings, word games etc and this helps create conversation. And do not forget to write about family news and local “gossip” or whatever you always shared before. If SP receives the information in writing before your visit, you will be able to more easily elaborate using this as reference.

It may be important to think about where your visit will take place. For SP it could be the opportunity for a change from the usual sights, sounds etc of the hospital. Simply sitting outside in the garden or at the front gate will provide non-hospital stimulation. If the weather is against outdoors, find a quiet spot where you can bring in your hobby or interest for SP to watch you “doing”. Creating a continuation of your roles