Dementia: A Personal Journey

Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior (U.S. National Library of Medicine).

Dementia is sometimes called “family diseases” because all family members are affected.  I have spent many hours in prayer this week about this subject.  It is hard to write this as my Father has dementia.  We provide the best care we can afford, we have a caregiver come in five days a week and my siblings and I take turns on the weekends caring for our dad.

It’s hard to see my dad decline the way he has.  It is hard because of the changes we see in our dad.  It is a heavy burden for all of us. 

My older sisters are the ones that make most of the decisions when it comes to our dad.  To be honest, it is hard to sit back and wait for them to make decisions.  Lately, dad has taken it upon himself to take a walk to my house.  It’s not a far walk, about three blocks.  However, we live in the country, on a county road and people speed up and down the road.  My fear is one of those cars speeding will one day hit him.  Because I am home most of the time, dad knows I will be here.  So, he just gets it in his head to come down, as he always has, and visits.  However, this has been taxing on my emotional state of mind.  I inform my brother and sisters about this and as I said, it is sometimes nerve wrecking to wait for them to do something.  And, sometimes that stress comes out in anger.

Accepting the fact that we will never have our “old” dad back is difficult.  We have accepted that fact.  The fear, however, is still there.  We have found that in most cases, as his dementia progresses is what worked today, may not work tomorrow or next week.  When a parent develops dementia, the roles reverse.  The parent becomes the child the child becomes the parent.  This has proven to be hard on us all.  In all honesty, watching dad decline is almost like seeing a slow progressive death.  We know one day that our dad will not know who we are.  That thought alone is enough to cause anyone to go into a depression.

The level of emotions will run the spectrum.  We do our best to be patient with our dad and to have empathy.  We try not to beat ourselves up for the feelings we experience, from anger to intolerance.  As dad becomes more difficult to care for, more demanding, or diminished, we understand that it will not be abnormal to have this feeling increase in intensity.  The important thing is we, as a family, allow ourselves to feel these feelings, and to understand those feelings are normal without judging or accusing.  In the end, we, as a family, must call upon each other and ourselves to imbue the experience with as much dignity, empathy, understanding and generosity for our dad as we can.