I am sorry to hear you had such an experience with your mother. Of course I made a generalized statement and that can not be true for everyone. There are also multiple types of dementia and dementia like conditions. Some forms do leave the person confused and scared and calling out and in rough shape for the caregivers perspective. But in general the vast majority of the clients I have worked with did not appear to suffer or be aware of their situation. I worked in an advanced stage dementia facility for almost 8 years.

When a population can not express what is wrong yes sometimes health issues get missed like your moms UTI. But with a lot of experience those things get noticed much faster. Having worked with someone for years as many clients did stay with us for years you get to know their routine very well. Suddenly they are using the bathroom non stop you question UTI. They suddenly start acting very strange - check for UTI. The system is not perfect but there are people out there that care and are doing their best to help those. I advocate for my clients and use my experience and knowledge to help these people get into the best situation possible.

When working with dementia patients you are not just working with the client but his family as well. I currently work in a community setting so see people at home and when I see the wife crying or yelling at the client I sit and ask how they are doing. I let them know that they are a good wife or husband and that getting upset does not mean they are bad. I then tell them that it is however important to recognize when they are burning out and getting frustrated. Thankfully for most of my clients there are services that can let the family get a break. We will do respite visits and the family can leave the house and get some errands done or just have lunch or relax. In those upset moments I help them through the situation and then discuss it with my team to try decide how to best help. Sometimes that means increased service. Sometimes it means they go to a respite facility for a week. Sometimes it even means they get placed into long term care facility.

I am drifting off on this post so again I am sorry about your mom. Dementia is cruel. Care is not perfect. But I genuinely feel for the majority of those who have dementia they just lack much insight as to what is happening.