QUESTIONS AND ANSWERS

QUESTION:

Mum and Dad have been loving, active, interesting, independent and successful parents. We as family had a great upbringing and feel that we are a close family, dealing with our own ups and downs. They appeared to always cope with changes in life that came their way - losing jobs, moving home, weddings and travel.

Since Dad was diagnosed with HD the situation has been slowly and steadily changing. Mum and Dad appear less involved with the world around them and they are keeping more to themselves at home. We suspect that Mum is not coping and has started drinking. What can we do?

ANSWER:

Firstly it is good news that Mum and Dad are remaining within their marriage and family. Secondly it is good news that Mum and Dad have a history of coping well with life prior to HD. Thirdly it is good that you and your family are concerned and wanting to help. Fourthly it is good that you are seeking advice.

These family situations usually develop slowly and often imperceptibly until there comes a moment when some one gets a wake-up indicator. Some situations may have arisen along the way and been accommodated or dealt with quietly by a range of problem solving solutions or "in-house" methods. Such positive adaptation is welcome and endorsed as maintaining one's independence and freedom of choice.

When situations lead to the concern of offspring it could be time to consider initiating a "frank and meaningful" family discussion with your parents. The old adage of a problem shared is a problem halved may apply provided that each family member has mutual respect for each other. If the family are unsure about getting together or are unsure of their capacity to cope with such a discussion, then it may be wise to invite a person to be present as a facilitator. This could be a friend, church leader, field officer or counsellor and perhaps the meeting could take place away from the home for added neutrality.

Perhaps some analysis of how things are like for each person, the concerns and feelings being experienced, the caring and the practical help available would be a starting point. Together a way of sharing responsibilities and the many life roles each has will be identified so that an action plan can be agreed upon if needed. Parents feel an extra responsibility of not burdening their HD at-risk children with HD related matters and may continue to struggle with being overly self-sufficient.

Sometimes a simple gift of paid home help or garden maintenance may take the pressure off. A holiday treat for Mum and/or Dad might alter the cycle developing.

QUESTION:

I have recently received my genetic test results and am now facing all sorts of mixed emotions and upheavals in my thinking and decision making. When I got the news that I was gene negative I expected to be over the moon about knowing that I would not get HD. But, it has not been that simple. My brothers and sisters either have the

gene or don't want to be tested. My parents are really happy for me, but we really cannot shout from the rooftops.

ANSWER:

Congratulations for taking the courageous and serious step of undergoing the HD Predictive Testing Process. Each person who does this, in my opinion, needs to reward themselves for finding out such personal genetic information regardless of the result.

Yes, you are one of many who receive a negative result and are unable to really feel the relief, joy and positiveness one would expect. This may be because of the fact that you are only one member of your family and therefore your HD experiences are interlinked with those of the rest of the family. And the emotions you feel and the decisions you make are not necessarily for you alone. You may have intertwining feelings about other family members which emerge post-test.

If you feel unable to talk within your family and friend it is OK to seek a counsellor for a couple of sessions, during which you can ventilate your feelings, express your thoughts, reflect on your decisions and talk through your experiences. In so doing you will regain your perspective and endorse your life values. Alternatively you may wish to write to yourself in some form of letters, diary or journal and read that in six months time.

Well done, you deserve to plan for a meaningful and long life.

The following letter is in response to one of the letters which appeared in an earlier Newsletter.

Dear Married Partner of SP

I am in a similar position to yourself and felt I would like to respond to your letter.  Like your husband, my SP stopped work seven years ago and gave up driving three years ago.  I also am the main carer, part-time worker, and organizer of everything else that needs to be attended to in our household!

 Before his symptoms SP used to take care of all the outside, i e car washing, lawn mowing, hedge trimming, weeding, etc.  He did more than his share of vacuuming the house, laundry and best of all ironing.  Over the past 6-7 years SP has lost the forethought of doing most of these chores, particularly the ones outside the house.  I understand that this was because of the cognitive breakdown he was experiencing and SP has told me on different occasions he can feel ‘things happening in his head’ (that he is unable to think as he used to).  These years are a grief process for my husband, people with HD can remember that they used to be able to function and cope as well as anyone else.  It is also a grief time for me (and you) as we are losing the personalities (and helpmates, and financial contributors to the household) our husbands were.  I feel it’s important that we understand and recognize this and that the husband and wife talk about the grief with each other.

 However, the work still has to be done and you and I (and every other carer) are only human.  After stewing for a couple of years over the fact that SP seemed to be oblivious to the tasks needing done, I asked him one day “will you mow the lawns sometime over the next couple of days”.  They got done.   I now ask him to wash the car, put the vacuum over the living areas, etc. and he does.  He is still very good with the laundry and hanging out of same and also good with the vacuuming of the house.

 SP and I are on the married Invalid’s Benefit.   I also work a few hours each week.  I increased my hours this year to meet financial needs and I found it did not have as big an impact on our benefit that I thought it would.  Don’t hesitate to phone the WINZ information line if you want to know how much the benefit is, and how it would be affected if you worked part time (you need to give them an hourly rate and number of hours per week for them to give you a dollar figure).  They will give you the information and I have always found them to be very helpful, informative and non-judgmental.

 Another thing we have found to be very helpful to us both is a medication called Amantadine.  A Neurologist put hubby on it a few years ago and the improvement to his balance, movement and especially his mood are amazing.   We both found our life far more harmonious because of Amantadine.  A few weeks ago he did a trial to see how his symptoms were by coming off the drug, and within 3 days his moods were awful (and balance and movement).  He went back on Amantadine and things are much better again.

 I hope some of the above is of use to you – you’re too important to ‘go crazy’.  I have also found that I CAN “put off till tomorrow what doesn’t really have to be done today”.  Best of luck.