From Dancing to Disaster

My mom probably has Lewy Body Dementia. She was diagnosed with Parkinson’s Disease but has symptoms more in line with Lewy Body. My mom often shakes when getting up to walk. Swinging her arms or taking more steps clears it up. My dad has Vascular Dementia. I am the primary caregiver. My husband is here most evenings. My sister comes only if I have a doctor appointment.

My dad has a lot of weakness and has to be helped with a wheelchair. His anger and rage is mostly controlled with meds now.

My mom is very forgetful. She does not remember my dad having a heart attack. She is often mad thinking no one told her anything. She thinks we did something to make my dad be in a wheelchair. She also accuses us of sleeping with my dad since she sees us helping him dress and use the toilet. She also thinks she does all the housework, shopping, and cooking.

She thinks we are there only to boss her. We let her do anything she wants but do remind her to take her pills which she sometimes refuses anyway. We try to get her to shower. She often refuses. We have an awful time getting her ready for a doctor appointment. And now she frequently refuses to eat. I know that not eating could be a sign of her body shutting down; however, not eating is sometimes the result of her being mad about something. I realize it is also a way of expressing she is still in control.

She sleeps most of the day then becomes more awake and depressed, irritable, or combative in the evenings. Sometimes she is up most of the night.

She claims we never do anything for fun. We often take her out to the park or out to eat, but she does not remember later. Friends stop by or call. 15 minutes later she forgets.

She is also very jealous that we help my dad. She thinks she should. She sometimes tries and ends up having my dad yell at her, because she may be doing something that puts him more out of balance.

She speaks very softly, yet she either cannot hear others or cannot comprehend as much.

With her depression, she cries if we even ask her to move her feet so my dad’s wheelchair can get through. She thinks she is worthless and no one loves her. The more we tell her how much we love her and how important she is, the worse she gets. Walking away works the best. She often resets and is very nice later.

Three nights ago, I played music during supper since my dad was agitated. Mom seemed to be in a good mood. She even ate most of her food. While I was clearing the table, she came behind me and put her arms around me. I first thought she would maybe hurt me then she began to sway with the music! I turned around. We waltzed. We danced cheek to cheek and heads on shoulders. When the music changed, she danced the Charleston (minus the footwork)!

The next night she was up all night and even pushed through my barricade to my bedroom to yell at me for two hours until 4:30 a.m. I did not leave the room this time since she was sitting in front of the door.

So she went from dancing to disaster! I wish my husband had a camera handy for the dancing. In my mind, though I will never forget our night of dancing. If I had not put my life on hold (and it has been four years now!), I would not have had my dance. And without my presence, my dad would not have gotten help with his anger issues. And here’s a hint, we and the doctor call the meds blood pressure meds. Keep the course, keep your faith, and remember the dancing.