Pandemic happens and my Mom who was previously independent crashes and burns with dementia and physical ailments and has been in my home since. She is not diagnosed yet but next step is neurologist and geriatric doctor. I have been trying to get her other physical issues addressed first. She has a heart blockage that I am hoping we are getting fixed in a couple of weeks. 

I have read a lot about dementia and how to care - one great book is Dementia with Dignity by Judy Cornish. It is not difficult for me to take care of my Mom's physical needs. I have incorporated it into my routine. I think so far I have done a damn good job considering my husband and I work full time (at home right now). 

My husband and I are both caring, open, intimate people.  I will state what I have done that works, and what doesn't and my frustration with the medical community so far. 

First of all - this is a learning journey. You are put into the most challenging position you may have experienced in your life.  And I am reaching out because I realize that you cannot go it alone - BUT you need resources of others that KNOW and have experienced this. 

What you don't need. Negativity, pills thrown out you from doctors, people who have not had this experience telling you what you should do when THEIR biggest inconvenience in life is perhaps having to listen to you. Most people are NOT comfortable talking about this because it is shoved under a rug. I do not think I was comfortable talking about it before with people going through the experience. Why? Because it is horrific and they don't want to think (and I didn't want to think)  it could happen to them. Well we need to change that.  

My mom's dementia is at times classic and at times not. Once she is (if that happens) properly diagnosed I will have a better understanding - maybe.  She can have a coherent conversation with you. No problem! Short term memory is gone though. She recognizes her family. However she goes from being happy and grateful, to psychotic, being caustic and screaming (horrible things). Day in and day out. Hour on. Hour off.  I know this is a disease. But when your loved one does these things it eats at your soul. I don't know how else to say it. It eats away at your soul bit by bit even though intellectually you understand it is the disease doing these things. Strangely, my mom is self aware enough to describe the fact that when this happens it is not her. She says, "This is not me, but I can't stop it and I don't know where it is coming from".  When she smiles and says she is grateful, I am healed. When she cries, I cry, when she screams I internally scream. She is very very aware of your mood. If you are not smiling and cheerful and talking to her like a doctor or nurse taking care of her in a hospital, she goes bonkers. When she is coherent I want to reason with her, be open with her, show my concern, talk about our next steps and our hopes, but honestly this is impossible and unfair, yet it is what you do. Hope. You hope.  My insides want to talk to my Mom, and I can't tell them otherwise. This is MY dementia!  My insides need to be talked to in the same way I have to treat my Mom. So let me tell you right now. Dementia does not listen to reason. It doesn't care what you feel. Dementia is a difficult teacher that points you to what is important and  real and what is not important and what is just wishful thinking in life. Dementia is the Marines. 

You go to Facebook and see the happy posts of families doing normal things. You do not post your own selfie of your mom in a chair in the background.  Well maybe I should. Because Dementia is authenticity. It is what is real in this world, not the fantasies. It shows to you in bright outline where we as a society are not setup to deal with this. And you see your own future. It is a wake up call. 

Yesterday I had a freak out. My mom has not been eating and she sleeps all day. I wonder if these are the "end times". I call her doctor. Nurse tells me to go to the ER. Nope. She wakes up, is fine and eats. I internally crash and burn thinking that she is maybe going to die in the next week or two all while the medical community hasn't done a damn thing except make her worse so far.  (Which is why I need a good geriatric physician - going to find one I hope). AND a holistic doctor.  Not just for her but for all of us.  Dementia is a communicable disease. Like virus it psychologically damages all who it touches. The care givers need care as deeply as the sufferer. The caregiver and the sufferer are tied at the hip. 

I meditate. I do deep breathing exercises. I have a room where I can be alone to do these things and I use them. It really helps me. I also ask dementia what it is trying to teach me about myself, about reality about our personalities and how fragile everything is.  But there are no silver bullets. 

Dementia is another planet. It has it's own language and it's own rules that do not match ANYTHING you were ever taught about life.  It WILL destroy all of that.  Dementia is like the Coronavirus. It forces you to wear a mask over your feelings when around others. 

 I think either you rise as somebody completely different or you don't.