Loss and Grief

Everyone experiences feelings of loss and grief at some point in their lives, and those who are impacted by Huntington’s disease are no exception. Fortunately, there are many coping strategies that people can adopt to help them deal with those overwhelming feelings in a productive and healthy manner.

In the publication "Loss & Grief" written by Paul Klodniski, Director of the Huntington Society of Canada’s Eastern Ontario Resource Centre, “grief work” can help people come to terms with their loss. Not everyone needs to go through these types of exercises, but for those who are having difficulty dealing with their feelings, these techniques can be helpful

.• Reach out to others and ask for their support after a loss. Discuss your feelings, review the incidents surrounding the death with family and friends or, at the very least, spend time with other people to avoid feelings of isolation

.• Years of caregiving or working long hours to support the family financially may have caused you to restrict your social contact with people outside of your family. Now it’s more important than ever to set aside time for socializing with friends – people who aren’t coping with the same loss that is affecting you and other family members.

• Don’t hesitate to accept any and all help from extended family, friends, home care services, respite programs for both inside and outside of the home, and HSC camps

. • Don’t be discouraged if friends behave oddly or withdraw from you. Death can make others feel anxious or they may be afraid to cause you pain by talking about a loved one who has passed away. It may be up to you to let your friends know how they can help you.

• If you’re not receiving the social support you need, it’s important to reach out and ask for help. That might mean asking a friend to run an errand, cook some meals, help you sort through your loved one’s belongings or just lend an ear

.• Support groups can be an excellent resource when dealing with grief. You can gain a lot of comfort from people who have gone through a similar experience and understand what you’re feeling. In addition, most support groups are run by leaders or facilitators who are familiar with healthy grieving and can offer advice that’s geared to all members of the family.

• Lean into the pain. Avoiding the pain of grief can cause long-term physical and emotional problems and that’s why it can be beneficial to confront your loss. That might mean talking about the death, writing about it in a journal or visiting the gravesite. The immediate but temporary pain this might cause can help you progress in overcoming the long-term grief.

• Reaching out to art, music, poetry or drama can be an effective way to deal with your feelings. Be careful to avoid alcohol, drugs or excessive work hours in an attempt to avoid or dull the pain of grief.• Rituals can be very helpful because they provide structure at a time when your life has changed abruptly. Attending visitations, funerals or memorial services, or setting aside commemorative anniversary dates are rituals that others have found useful.

• An experienced counsellor can help you get through a difficult stage. Whether you opt for counselling immediately after the loss or seek help if the grief seems long-lasting, professional help can be beneficial when feelings of anger, loneliness or grief aren’t subsiding.Many of the techniques used in grief work can be applied to feelings of loss, which are not uncommon among people dealing with HD. Losing the ability to walk, talk, work and eat has a dramatic effect on both family members and the person living with HD. Starting grief work at this time can help you gain invaluable social support and open up the lines of communication between yourself and the person with the disease.Do’s and Don’ts about Grieving• Avoid making major life decisions during periods of intense grief

.• Avoid driving during this time and if you must drive, concentrate fully.• Ensure that you get adequate rest since fatigue is a very common reaction of grief

.• Go for a complete medical check-up approximately six months into your grieving to make sure your health is in order.• Eat well. When you’re depressed or have no appetite or desire to cook, it’s very easy to overlook your nutritional needs. Proper nourishment will make you feel better both physically and emotionally.• Don’t build a wall around yourself for fear of being hurt by a future loss. It just makes it more difficult to deal with the current loss

.• Don’t expect your grief to follow a predictable path or schedule.There are certain times when it’s imperative to seek professional help. If you experience persistent thoughts of suicide, are unable to provide for your basic needs like showering or eating, or experience one particular reaction to grief (such as depression or apathy) for several weeks or months, seek out help from a counsellor, making sure to mention that you are going through a period of grieving.