Grief and loss is not only experienced with death but can be felt when relationships change, or end. When a relationship with someone you care for or love changes you can experience a sense of loss even if they are still very much part of your life. It is common for families and carers to experience feelings of loss, grief, loneliness and bereavement as their relationship with the person affected with HD changes.

Sense of loss

Depending on your relationship with the person and your individual circumstances you may grieve for the loss of:
• the person you once knew is no longer recognisable
• the future you had planned together
• the relationship you once enjoyed together as partners, parent-child, siblings etc
• their companionship, support and l understanding
• your own freedom to work or to pursue other activities
• finances or a lifestyle which you once took for granted

Loneliness

You may also feel a strong sense of loneliness caused by:
• going home and not being able to share a laugh or conversation with the person you once used to
• seeing other couples or families enjoying time together
• reflecting on times spent together
• feeling on your own

Whilst everyone’s experience is unique, many people who share similar situations to you also experience feelings of grief, loss, and loneliness. Therefore the emotions that you currently experiences is normal and you are not alone in feeling them.

Feelings of Bereavement

Following a loss like those experienced with changes in a relationship and bereavement is a common response. The experience of loss and bereavement can be complicated for those who care or love someone with a progressive neurological condition like HD. Death provides finality and an opportunity to mourn. However for those who care for someone with a progressive illness, that opportunity to mourn may not exist. If you do not confront and come to terms with the changes in your lives you may be unable to mourn and work through your grief. It is therefore important that you identify your grief and find a way that enables you to work through it.

Caring relationships

As the condition progresses, relatives commonly struggle to adjust to changes in their relationship with their loved one, their role and their daily routine. The impact of these changes will differ from person to person. The most noticeable change in relationship is often between spouses however, children and even adult children are also impacted by the changing roles and family dynamics. The losses faced by children are often complicated with their own fear and concern about their future health.

Not all caring relationships are loving ones. You may have had a difficult relationship with your relative before he or she became affected with HD. The illness and the need for you to take on the caring role may have meant that a lot of issues have never been resolved. At some point you may decide that you are ready to confront your feelings. Professional assistance such as counselling can provide a safe and confidential space to do this.

Bereavement

When a loved one dies it is normal to experience powerful feelings which can be a mix of sadness, helplessness, despair, anger and guilt, all of which can be physically and emotionally exhausting. You may become confused at times about your emotions, and the information below is a good starting point in understanding some of the feelings you might be experiencing.

Different Bereavement

As HD is a family disease it may mean that you have experienced bereavement on more than one occasion. This is one of the most difficult aspects of the illness for family and for carers. Each experience of grief will be unique and therefore don’t place unrealistic expectations on yourself on how you ‘should’ grieve or react. Sometimes a new bereavement can trigger memories of previous losses and you may feel overwhelmed by your emotions. There is no timeline for grieving, however if after a while you recognise that your feelings are impacting on your ability to function or perform day to day activities, it is recommended that you speak with a professional for assistance.

Shock and Disbelief

"I can't believe he has gone – I can still hear him...."

Even when you have known for a long time that someone has an illness that they will not recover from, there can still be a sense of shock when death occurs. Some people are surprised by how strong this feeling can be. These feelings will start to fade in days or weeks, although they may return from time to time. When they do, the shock will feel real and you may again feel a sense of sadness by re-experiencing the loss.

Numbness & Emptiness

"I don't seem able to settle down to anything or to concentrate, yet there is so much to be done...."
Feeling a sense of emptiness or numbness like you can’t feel anything at all is a normal reaction. It is your mind and body initially protecting you from the grief that is to follow. You may have trouble accepting that the person you loved or cared will never be seen, heard, or touched again. Your thoughts may become confused and everything may feel like an effort. Crying or shedding some tears is a normal way for people to express their emotional sadness, and this often can leave you physically and emotionally exhausted. However not everyone cries, and you should not be concerned or feel guilty if you don't. There could be a number of reasons why you may not cry and one of these reasons could be because of the numbness that you may be experiencing. You may find that the tears may come later. It may be that you have shed many tears in the past and that you have been grieving for a long time before the person has died. Not being able to cry does not mean you did not care or that you are not sad.

Holding in tears can also be very tiring and it is important that you do express your emotions.

Physical Stress

"I don't feel so well ..."

Losing someone close to you is a major source of stress. Stress shows itself in physical and emotional ways. You may have neglected your own health caring for someone else. Grief can also make you stop caring about your own well being. You can lose your appetite, become forgetful, feel very tired and yet have difficulty sleeping. It is important to try to eat properly and take rest even if you can't sleep. If due to your caring role, you had neglected your own health for an extended period of time, now would be good opportunity to revisit it and make an appointment to see your doctor. Over time, the physical effects will fade and when you are stronger you can start to think about what is next for you. For some people the caring role continues for another member of the family. If you are feeling worn out then it may be hard to grieve and you may need to think about a break.

Emotional Stress

"I think I'm going mad..."

This is a very common feeling among the newly bereaved. Grief can produce strong emotions and you may feel overwhelmed by them. You may feel and behave differently. You may have powerful feelings and longings just to see the person again, to talk to them, touch them and be with them. Even if the person had changed through illness, you may still have strong feelings and the vivid memories experienced may be of them prior to the HD. At the peak of your emotional stress you may be tempted to do things that you may regret later such as clearing out the persons’ possessions. Avoid making major decisions at this time as you may not have a clear head. However .If you have to make difficult decisions talk them over with someone you trust who can help you consider the best course of action.

Making Sense

ANGER "Why me?.... Why us?...."

Anger is a natural and common response to loss; many people have strong feelings of anger which are difficult for them to understand. You may feel angry at the death itself or towards the illness that has caused you and your family pain. You may be angry at a religious or spiritual being or representation for your loss and want to blame someone for all that has happened. You may also be angry at being left alone. It is ok to feel anger as long as it is not destructive to you or those around you. Many people find it difficult managing their anger due to the intensity of this emotion. Requesting support to manage this emotion is not shameful, nor should it be embarrassing. Professionals are available to assist you address your anger constructively.

GUILT " if only?...."

It is only natural to look back and wonder if you did everything right or how things would have been if you had acted differently- "could I have done more...?" There may be regrets for things not said or done or even for things that were said and done in times of stress. We are all human and our lives are always a mixture of ups and downs. Relationships are sometimes easy and sometimes more difficult. Decisions made in the past were made for all the right reasons at that time and it is only hindsight that makes us question our judgements. Just as our own flaws and faults lead us to regret and guilt, others also share these same feelings. If they do persist you need to talk them through with someone who understands.

A Sense of Relief

"I'm glad it's all over......"

When you have been caring for someone who has been unwell for a long time, there can be a feeling of relief when the person dies. Some people say they feel a weight has been lifted from them. If the person was in long term care there may still be a sense of relief, that for them their suffering is over. These feelings are usually temporary and are often then replaced by the sadness of grief and loss, when the reality of what has happened sets in. Feeling relieved should not make you feel guilty.

Talking & Remembering

It is normal and healthy to want to talk about the person who has died. To go over what happened during their illness - the good times and the bad and also to talk about their death. The best way family and friends can help is to listen and share their own memories. Often family and friends are around early in bereavement but then spend less time later on, so it is important to talk to them when you need them. Talking and remembering are a normal part of the process of grieving.

Sometimes it may be hard to remember back to before the person was ill, but encourage yourself to look at old photographs or souvenirs, revisit shared places and spend time talking to others who will have their own memories to share.

How Long?

"No one seems to understand how I feel."

"People say I should be over it by now."

Sometimes we wonder how long we should grieve for. When you have been living with illness for a long time, you may also have been grieving for other losses throughout the illness. For example, when that person lost their independence, lost their ability to speak or swallow, when you felt you had lost your relationship with them. All of these are losses that we grieve for and there is no correct way to do it.

People often say; "time is a great healer" but it doesn't take away the pain or sadness. Many people will say that you don't get over the death of someone you care about, but you learn to live with it and gradually accept that it has happened.

Loss, death and grief are normal, they happen to everyone throughout their lives.

We live in a culture now where everything is a "quick fix". But there is no quick way to deal with grief. For most people it can take many months and even years before they begin to readjust.

There is no right or wrong length of time to grieve; it is a unique experience for each individual.

Getting back on your feet

Grieving is an up and down process much like a roller coaster. There will be times when you feel you are strong and are coping and other times when you feel overwhelmed by different reactions.

There are lots of people who will give you advice and tell you what helped them. It is good to share experiences and some of their ideas may be useful, however you are the only one who knows how you feel and what you are able to cope with. No two people will have the same reaction so not all advice will be appropriate to you.

Chronic Grief

Not everybody manages their grief and a small number people become “stuck” in their grief. The intensity and severity of their feelings do not seem to change and they suffer persistent problems. If your grief is so intense and unbearable then you should consider speaking to your GP who will be able to assist you or refer you on to the appropriate supports as The Australian Centre for Grief and Bereavement.

However you deal with the period following the death of your loved one, remember these is no "normal" way of getting through the grieving process. Get as much support as possible from family and friends and don't be afraid to ask for more professional help if you feel you are "stuck" in your grief. Above all, be gentle with yourself, don't expect too much too soon. All the time you were a carer you were putting other people ahead of yourself, now it really is time to take care of yourself.

Remember to...

• Allow yourself time to grieve
• Accept offers of help from family and friends
• Avoid making major decisions in the early months if you are feeling shocked and vulnerable
• Accept that, even though you are generally coping there will be days you feel sad or upset
• There is no right time to start smiling, laughing and enjoying yourself. There is no right time to cry and feel sad
• Events such as anniversaries, birthdays or social gatherings can be distressing
• Expect to feel tired, even though you feel you have been doing little
• Try to avoid alcohol and drugs to relieve feelings of sadness

Remember grief is normal, but how you experience it is unique. Ask for help if you feel you aren't coping. The Australian Centre for Grief and Bereavement offers a range of services, information and resources for people across Victoria. This includes a specialist bereavement service for individuals, children and families who need assistance following the death of someone close to them.

More information

Grief and bereavement

Death and healing