At times it is hard for people outside of our home to understand some of what we do as caregivers for my mom. One topic that we get quite a few comments about is how we, in their opinion, "force" mom to do things. Go out to lunch, go to parties, go to church, exercise, eat healthy, go to dementia groups, etc... In their opinion we are not listening to Mom and forcing her to do things she does not want to do. They think this because sometimes that is what Mom tells them we are doing. Which logically would lead most people to believe that we are indeed forcing her, and that is a bad thing.
Dad and I were just talking about this the other day and he was wondering why people do not understand that while Mom often says she does not want to do things, she does enjoy the time out of the house. What people also don't realize is if we did not get her out of the house, she would sleep almost 24 hours a day, and that would be terrible for her body, mind and spirit. Dad wonders why people don't understand that socialization is one of Mom's treatments, and that even though Mom says she does not like it, when she is out with others, that is one of the only times she is actually happy and engaged, like yesterday at TimeSlips, our storytelling group. She had a great time and was excited about participating, but when we asked her about it later, she said she was also miserable. People don't understand the complexity of this issue, because many people do not understand depression.
I completely understand where Mom is coming from, and I understand why even though she enjoys things, she is still miserable, which is all the more reason not to allow her to sit in bed all day. Mom is depressed, as happens with many people with dementia. I understand how she feels because I am often depressed because of my bipolar disorder. I do the exact same thing she does. I blame those closest to me and whatever we do together for my misery because that is part of my illness. I never really understood that this blame was actually a symptom until I did a lot of reading about mental illness. Due to my treatment, I have done a lot of work to be able to recognize and stop when I am blaming others, but Mom is unable to do such processing, and that is fine with us.
For both Mom and me, one of the best treatments for our illnesses is socialization. In the moment it gives us a bit of happiness in the midst of depression. It shows us we are loved and cared for. It brings light to our life. It won't fix us, and we may still feel miserable when we are done, but some joy is better than nothing. It is nourishment for the soul which should not be discounted.
I wish others could understand that us involving Mom in life is actually a very compassionate and caring thing to do. If not, she would stay depressed in bed instead of having some enjoyable time of the day. For those wondering, we have tried to treat the depression with many medicines, and none have worked. Apparently this is especially common in people with dementia as written about in this article which says Alzheimer's patients are not helped by antidepressants.
The treatment of many diseases of the brain means normal, rational rules and assumptions don't apply. We have done our research, talked to Mom's doctors, who say socialization is essential, and we are doing everything we can to help Mom have the best quality of life she can, because she deserves nothing less.