I recently wrote a post on dementia and how the journey of the caregiver is not talked about. Today I wanted to write about what the experience can be like for a child watching their parent who has dementia. Of course it is a difficult topic to write about since the journey can be so different day by day and even hour by hour. One day your parent may be totally lucid and appear as if nothing is wrong. Those are the days where you are hopeful that things may not as bad as you think. Than the next day the person who has dementia is confused and angry and you watch and grieve quietly as the person you knew is no longer in the body of person you love.
One of the most stunning parts of the dementia can be the personality changes. You have an outgoing friendly person turn into a withdrawn and uncommunicative person. Of course there are many types of dementia and it looks different in each person, but regardless of the type dementia there is a huge grieving process. You grieve when you get the diagnosis, you grieve when the person starts losing their capacities such as the ability to drive, you grieve the first time they forget your name, and you grieve when you look over at them and you see a totally different person from the one you remember.
You remember the person who took care of you as a child and see the person who no longer can do anything for themselves. You feel a constant and aching loss every time you see your parent who is both still your parent and another person at the same time. You want to spend time with your parent while you can, but at the same time it can be difficult to do so. If you become their caregiver you have to deal with the day to day stress of the disease. If your other parent or sibling is the caregiver you might be dealing with old family issues as you try to all cope with this. Different family members may see different things and want to deal with things in different ways. So along with the grief you may have to navigate difficult family challenges.
This is all about the negative aspects of the illness and family relationships. It isn’t always all bad. Family members may be able to come together and be closer than they had been before. Until the end stage of the illness you can have both good and bad days with your parent. Some personality changes can be positive. It certainly can shift your priorities and help you focus on what is really important.
As I have said before, if this is you and your family please ask for help. You can be surprised at how many people will come through for you. This is not a situation you can or should deal with alone. Get support and take time for your self. For it is a journey that will truly test your resources.