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Coping with Bereavement

For many people caring for someone with Huntington's Disease, it will be over a long period, anything from 5 to 25 years or even longer.  Whichever way you look at it, it will usually have been a significant period of your life; long enough for your routines to become ingrained, for your ideas and priorities to have changed since your caring role began.  In short, when your loved one dies, your world can look a very different place to the one you belonged to before you became a carer.

However relieved you may be to be free of some of the day-to-day practicalities, you are facing the loss of a close caring relationship and the loss of a role which, even if you found it difficult at  times, you were at least familiar with.
When your 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.  This section aims to help you understand some of these feelings.

Different Bereavement

The nature of Huntington's disease may mean that you face, or have faced, more than one bereavement. This is one of the most difficult aspects of the illness for family and carers.  Just as you have different relationships with individuals, so your grieving will be different for each person.

Sometimes a new bereavement can trigger memories of previous losses and you may feel overwhelmed by your emotions. People around you may find it hard to understand just what you are going through. It may take longer for you to work through your bereavement and you may find you need more help and support to adjust to your loss.

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 and will die, 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, you may feel you hear or see him or her again and the shock will be fresh again and a feeling of sadness when you realise the truth of the loss might return.
You may dream of the person who has died. If you have lost your partner some of these dreams may be sexual. All these feelings are normal and do not mean you are going crazy.

Numbness & Emptiness

"I don't seem able to settle down to anything or to concentrate, yet there is so much to be done...."

Your mind only allows you to feel your loss slowly and following the death of someone you have been close to may leave you feeling numb, empty and unreal. You may have trouble accepting that he or she is really dead and is not coming back. Your thoughts may become confused and everything may feel like an effort. Most people cry a lot when someone has died and this can leave you exhausted. However not everyone cries and you should not be concerned or feel guilty if you don't. Not crying may be because numbness delays emotional reactions to loss; 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. 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 you have been putting off seeing your doctor because you were a carer, take time to do it now. Gradually the physical effects will pass 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. It may be tempting to think things would be easier if you moved away or cleared out the person's possessions, but this may not be right for you just now. Don't try to make any major decisions at this time as you will not be able to concentrate. Don't make any sudden changes, stick to things that are familiar and simple routines. 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 God or the world for your loss and want to blame someone for all that has happened, even the person who has died. You may also be angry at being left alone. There is often a reasonable cause for your anger but nowhere for you to express such strong feelings, you will need to speak to someone you trust to let them know what you are feeling; it might help to write it down. It should get easier in time, it is normal to feel angry.


" 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 good times and bad. 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 judgments. Just as our own flaws and faults lead us to regret and guilt, others have their own regrets too and guilty feelings are often not justified and will pass in time. 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 there own memories. Often family and friends are around early in bereavement but less so later on, 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. Talking to other people can make you feel better, for some people, it may be a release for the emotions that you feel to be expressed. Sharing your experiences with others, can be helpful for some people, others may be helped by quiet and private reflection.
  • 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 living with chronic illness. There will be times when you feel you are strong and are coping and other times when you feel the whole world is against you and you are 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.

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 and drugs may interfere with a normal but painful reaction to grief, this is the reason that your GP will discourage medication but may prescribe something to help you sleep for the first few days.

  • You will be more vulnerable to ill health yourself, so take care of yourself and if you feel unwell then speak to your GP.
  • Later on don't be alarmed if some small, almost insignificant, event takes you back to sadness and tears, often it is the little unexpected things that catch us by surprise.
  •  Ask for help if you feel you aren't coping.

Chronic Grief

Not everybody manages through the different stages following bereavement, a small number of people become stuck in their grief. The intensity and severity of their feelings do not seem to change and they suffer persistent problems. If grief is so intense and unbearable then it needs to be treated and you will need to speak to your GP or counselor.

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.

For More information see Loss and Grief In HD