Mom's dementia and my own
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.
You are one heck of a writer - you told such a profound and informed journey with your Mom. I don't have any answers really as my husband and I have been roommates only for 20 years and then about six years ago I noticed something was odd but just ignored it. Then about 3 years ago he started forgetting everything, 5 minutes ago, plus he can't hear because he CHOOSES not to, even with hearing aids. Doesn't think he has a problem of any kind, won't let anyone help him, takes a shower maybe once a month and won't take his meds. I find it frustrating to do everything (actually always have) but as soon as Covid slowed down I got him to two wonderful Neuropsychologists and they did tests with him in the room only and I was literally shocked at how far he has gone downhill. Mid-stage Alzheimer's but since I am 66 and he is 74 and the roommate thing, I just can't help someone that thinks they are wonderful (part of the dementia) but is mean, never talks and when he does it's scary, cannot carry or initiate a conversation and has bitten me twice. He is so thankless, no gratitude because I really don't think HE thinks something is wrong yet leaves me to do everything. I almost died in mid-November of a small intestine rupture; in hospital during Covid for 18 days and he fed my dogs "kids" the wrong meds, called me in the hospital to yell at me constantly (his cell bill was over $1,000) - it was awful to be running the house from my hospital bed. Worst, one month later I mentioned the hospital and asked him what I went there for and he not only didn't know but didn't bother to ask. I feel so lonely, kind of dead plus I have dealt with severe depression for decades so I take what he says personally some times because I'm human. It hurts, like you said. Trying to stay focused on my care and my two dogs that I love and live for. I have adopted rescue dogs for 48 years and that is everything that matters to me.
Stay strong, I'm glad you have a husband to help you emotionally and I wish you the very best. No pearls of wisdom to offer.
Thank you for the kind comment and sharing your experience! You are an amazing person to have been able to survive what you are going through. I can't imagine having to run your home from a hospital bed and fearing for your fur baby's health as well as being constantly screamed at. The fact is, I think we become survivors in situations that most people simply cannot imagine. It is torture! It is actual torture that would probably be outlawed as a war crime were it to be bottled and used to get information from prisoners. Yet here we are. Trauma on top of trauma. Physical and mental. This is why I am reaching out to others because it is not like this just appeared out of no-where. Family stories. My mom, "Grandpa used to sit in a corner. He never said anything. He would just sit there". My husband. "Yeah I remember Grandpa, who had a stroke. He was just in a bed in the back room". I saw a documentary that stated many elderly just went to poor houses or mental institutions and then this morphed into the big business of nursing homes. This vast underbelly of pain that is in our very genes. Did my mom ever talk or question why her Grandpa just sat there and never said anything? Nope. It was like the thing that shall not be said. Pearls of wisdom. I get you there. There just are no silver bullets. Just hour by hour strategies. I have found that deep breathing really helps physically and emotionally. Last night I did 6 sessions. Each breath hitting the emotional pain inside my chest. It felt good.