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Moving On

At some time in the future the person with dementia will not be with you. People cope with the loss of a loved one in many different ways. For some, the experience may lead to personal growth, even though it is a difficult and trying time.

He or she may be living in a hostel or a nursing home, or may have passed away. It can be difficult to prepare yourself for this time, but by thinking about how you might feel and doing some planning you can make this a little easier.

The grieving may start when the person is diagnosed, and continue after the person dies. As the person with dementia changes, you lose the person you know. While this is happening, you have to deal with your emotions as well as caring for the person.When you care for, live with, or care about a person who has dementia, you become aware of the changes in the person as they lose their abilities, their personality and even their spirit. It may creep up, or it may be an incident which suddenly makes you aware.

How a person copes with grief is affected by many factors including the person's experience with the illness, the way the disease progressed, the person's cultural and religious background, his or her coping skills

"Grief work" includes the processes that a mourner needs to complete before resuming daily life. These processes include separating from the person who died, readjusting to a world without him or her, and forming new relationships. To separate from the person who died, a person must find another way to redirect the emotional energy that was given to the loved one. This is not to say that they no longer care for or loved the person. it coming to terms with the loss and commitment that person required. Because dementia is a progressive condition, many caregivers find that the feeling of loss remains with them throughout.

There can be many losses for the carer:

  • Loss of relationship
  • Loss of the person they knew
  • Loss of career
  • Loss of friends
  • Loss of freedom.

For many carergivers, acceptance of these losses doesnt come. Grief may remain long after the person dies.

Personally, I believe that at times, these losses are replaced by blame, which takes additional thought and actions to disspell.You can be overcome with sadness for the person you once knew who is gradually slipping away from their body. You grieve for the person you have lived with or known for so long who no longer remembers you. You experience many feelings during the time you are caring for the person with dementia.

Most carers experience a mixture of feelings. For example you may feel sorrow, you may feel miserable, you may feel numb. When you are grieving, you may experience all these feelings as well as many others.



Something to think about

In 2000, during Alzheimer's Awareness Week, my father was invited to speak on behalf of Caregivers, by the Alzheimer Association in Australia at the National Convention. In attendance at the National Conference were many dignitaries including the Prime Minister of Australia at the time (John Howard) and several federal ministers. As part of his closing he included the following statement to the politicians and guests in attendance at the National Conference.

“PLEASE REMEMBER that anyone here could be next – either as a sufferer or a carer! ... I can assure you that it will be a devastating experience for you in either role”.

What Others Caregiver's Have Said

"At first you don't realize you are a Carer. It sort of just evolves.
You just battle on

(Carer, Victoria, Australia)
"You don't have to be alone; accept and keep realising that there are others who can help"
(Carer, South Australia)
"If you are doing your best for the person then you are not a failure. It is a very tough road and only your fellow Carers really understand what you are going through."
(Carer, NSW, Australia