The Carer’s Emotional Journey of Dementia: Coping with Grief and Loss.
When you come out of the consultation and the doctor has told you that someone you love has dementia it is extremely difficult. You will feel anxious and devastated but you have to stay calm to support the person you care for. Everyone responds to these challenges in different ways. I am in awe of the carers I meet and how they manage.
Here are some of the emotions you may go through
Denial is a coping mechanism. It gives you time to adjust but you can’t stay like that forever. At some point the carer, which is what you are now, has to start looking at the practical implications of what is happening and get the information that is needed to work out a plan for the future, working alongside your loved one. But that doesn’t happen in the first stage. You just need to be together.
Anger is understandable. Your frustration and concern about how unfair this is may build up so much that you want to express them, but you need to find a place where it is safe to do so. In the heat of the moment, it is possible to say things that you will later regret. You may have worked hard all your life, looking forward to a leisurely retirement, which now looks like being stolen. Of course, you are angry. You may already be burdened with work and younger family members. It’s hard not to react angrily because of panic.
Grief will arise from the sorrow you feel for what the other person is losing, and what you are losing yourself. To begin with you will have difficulty in thinking about anything else. You may lose yourself in sleep and then wake the next morning to feel it flooding in again. You need rest and distraction from it. This intense feeling, which is natural will become less painful with time. But recognise that it is still there, even when pushed to the back of your mind.
Resilience is the ability to recover from setbacks. You still feel the anger, grief, and pain, but you can keep functioning. To do this you need to take care of yourself and not be afraid to ask others to take care of you. Your resilience may be knocked but you can recover. Many people have travelled this road before you.
Isolation is an issue when dementia strikes. It is very important to understand that friends are not a luxury - they are a necessity for maintaining your health and sanity. You need friends in order to be happy and you may need to tell them overtly that you need them. If you give them specific jobs to do for you it will help them know what do you need from them.
Anxiety about the future is a common problem for carers at the time of diagnosis. The best antidote to this is to get as much information as you can about what support is available to you and what common problems you might face you can get help and advice from your local carers organisation, from Age UK, the Alzheimer’s Society, or any of a range of organisations listed at the end of my book Dementia the one stop guide.
