Coping with caregiver grief

Coping with caregiver grief

When someone dies, it is normal to experience feelings of grief. It is normal to grieve that you cannot see the person again, that conflicts will not get resolved, and the dreams and expectations connected to the future are lost. When someone you love gets dementia, similar feelings occur, but you might not recognize it as grief, and give it the proper attention it needs.

In research literature, dementia grief is understood consisting of three aspects:

  1. Firstly, you experience a series of losses, small and large, in the trajectory in the disease. This can be in the early stages as communication deficits, to the later parts with declines in the person's ability to dress or do daily activities.
  2. Secondly, grief is a response to the psychological loss of the person, where personality characteristics, memories and abilities decline into something their friends and family does not recognize, despite the person being physically present.
  3. Finally, the losses are unstable and fluctuating, evading finality and resolution. Dementia is unpredictable, where one day differ a lot from the next. In addition, there is no recipe of what happens when. This can complicate feelings of grief, as you might grieve realizing a declined functional status, that on a good day does not apply. The complexity of dementia-grieving can make it difficult to give it the propper attention it needs.  

Recognize grief.

When you are trying to cope with your feelings, try to sort them. What do you experience as a result of stress? What do you experience from grief? You might feel overwhelmed about having to assist the person with dementia to dress themselves. Ask yourself where these feelings come from; is it stressful for you to assist them, or are you grieving that you must help them in the first place? If you recognize any feelings as grief, how do you cope with experiencing the difficult feeling? It is a myth that the pain will go away if you ignore it. Face your feelings and try to name them.  

Understand that your process of grieving will be unique.

Do not try to fall into conform ideas of grieving. Grief can have a variety of expressions and differ from person to person. You might feel anger, sadness, guilt, fear or something completely different.  

Turn to family and friends.

Talk about what you are experiencing and the feelings you have. Talking to others can help you cope, and you might experience that others feel the same way. However, keep in mind that everyone's grieving process is different, so do not expect the same expressions of grief from your friends and family.

Express your feelings in a creative way.

If you have trouble expressing your feelings, you want an outlet or a way to name your feelings, try to express it in a creative way. Try journaling, painting, drawing, make a mind map of feelings, write letters you do not send or whatever feels right for you. The idea of this exercise is not to make beautiful creations – it is a way to express feelings and does not have to be shared with anyone.  

Maintain hobbies and interests.

Keeping a daily living schedule can be difficult when caring for someone with dementia. However, in coping with grief and feelings of loss, keeping a routine can be a good way to cope. Think about what you can do to keep your life as “normal” as possible and seek out for help.  

Look after your physical health.

Mental and physical health goes hand in hand. Look after your physical health, both by taking symptoms you might experience from the grief seriously and keep moving and eating regularly and varied.  

Seek professional help if it gets too overwhelming.

Talk to your doctor about what you are experiencing. Keep in mind that the person with dementia is depending on your health, where you cannot care for anyone without caring for yourself.

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The DemiCare project has been funded by the Active and Assisted Living programme. AAL is a European programme funding innovation that keeps people connected, healthy, active and happy into their old age.

AAL supports the development of products and services that make a real difference to people’s lives - for those facing some of the challenges of ageing and for those who care for older people if they need help.

The project has an overall budget of 2.029.091,76 €, to which the AAL will contribute with 1.477.535,07 €