Me, Mom & her Dementia
I want to start by saying I am not a doctor, nurse, therapist… I am just a daughter whose mother had dementia and I want to share my trials, tribulations and lessons learned with you.
I was too busy living my life to pay attention to my mom when she first started showing signs of dementia. It’s not that I didn’t see my parents ~ oh no I saw my parents at least once a week and talked to them almost daily ~ I just wasn’t paying attention ~ I had 101 excuses for her actions. As I was going on with my life justifying mom’s actions, living in a state of denial, she went on forgetting little things…
Calling 2 or 3 times a day
Forgetting she already called
Repeating her conversations 2 or 3 times
Forgetting things, we did that week
Forgetting things, we planned to do the next week
I thought it was just part of her getting older and in some ways it was. When you think about it, we have this work-life routine that we have lived for years and once we retire our mind no longer has all these things to remember. So, we go from having so many things in our heads to remember that we forget, to having so few things in our heads that we lose track and forget.
I reached a point where I felt like I was sitting on a seesaw. One day I’m in excuse, denial mode and the next I’m thinking… maybe it’s more than being forgetful.
A side note: My mom has severe arthritis in her leg, limiting her movement, sometimes she would fall, and my dad couldn’t pick her up anymore. So, at the age of ninety, they decided to move into an independent/assistant living facility where they would be able to receive the care they may need.
And as it turned out, my dad passed away first and that is when I realized that he had been a buffer between me, my mom, and her dementia. Without him there, I got off the seesaw, I could no longer deny the fact that my mom had the early stages of dementia. I am not going to lie and say we figured things out and all was well because that is not the way it happened.
At first, I would try to ignore it. Then I would try to make her remember things the way I remembered them.
Me: Remember when I was a kid and…
Mom: No, I don’t think that happened.
Me: Yes, it did! Just think and try to remember.
Or
Me: What did you have for breakfast?
Mom: Nothing, they didn’t feed me.
Me: Yes, they did, you just don’t remember.
Mom: I remember they didn’t feed me.
Or
Me: Do you want to go down and play bingo?
Mom: I don’t know how to play bingo.
Me: Yes, you do. You used to play bingo twice a week, you know how to play.
Mom: No, I don’t and stop acting like I do.
After these types of visits with mom I felt sad, drained, defeated ~ why can’t she just remember things the way they happened, the way I remember them. I loved visiting with my mom I just couldn’t understand how she could forget playing bingo or some things from my childhood, but she remembered daddy, her sisters, parents and thankfully me ~ it was just some things vanished from her memory daily, like playing bingo. It was all just so sad and depressing, I felt helpless, hopeless ~ I just wanted my mom to be her old self.
And if what I’ve already experienced wasn’t enough they had her take cognitive tests every three months. I get that taking the tests helps them determine the best way to care for her but for me, they were shear torture. I had to sit and listen to mom answer, try to answer, give me that look of ‘help me’ or just tell it like it is. The lady would ask what day, month, or year it was, and mom would say… “It doesn’t matter, I’m not going anywhere, I’m going to do the same thing every day no matter what day, month or year it is ~ so just leave me alone.” ☹
After many tears, that became my beginning breakthrough moment along with the wisdom of mom’s Nurse M. Something else to remember is that it’s okay to ask for help, in fact you should ask for help, but it is hard to ask for help ~ I know. And when we don’t ask for help, we beat ourselves up over the things we didn’t know ~ ‘if only I...’ On this subject I speak from experience ~ I had many days I was black & blue from beating myself up. If only I would have sought out Nurse M’s advice earlier ~ but thank goodness for Nurse M and our many ‘direct’ conversation ~ no sugar coating anything regarding me, mom, and her dementia. From her years of experience, she shared her knowledge and wisdom with me:
With dementia her memory will fluctuate but you can’t make her remember it if her mind doesn’t want to. Constantly trying to make her remember just won’t make it happen. You are making yourself miserable, you’re frustrating your mom, and, in the end, you don’t have an enjoyable visit. Sometimes she remains frustrated after you leave and takes it out her frustration on the staff. That is a part of mom’s world I didn’t think or know about, nor did I take it into consideration at that time. One more thing I didn’t know.
Then she asked me this question:
Would you rather spend your time with your mom trying to make her remember or spend your time enjoying whatever she remembers?
While this is valuable information, it was still hard to change my ways because I wanted my mom to be the mom, not the new mom I was having to get to know. I began to try and implement the wisdom Nurse M shared with me. I had good days and bad days ~ change doesn’t happen overnight. Plus, not only did I have to change the way I interacted with mom, but I also had to learn to not react to her answers causing her to become defensive. I had to also deal with my emotions ~ letting go of old mom and embracing new mom. Here’s the funny thing, once I began to accept the fact that mom had dementia and changed the way mom and I had our conversations, mom would respond more like her old self just minus some of the memory and our time together was much more enjoyable ~ I didn’t leave feeling sad, drained, helpless or hopeless. The conversations I mentioned above changed and went like this:
Me: Did you enjoy your breakfast?
Mom: I think I had a pancake.
Or
Me: Let’s go down and play bingo?
Mom: I’m not sure I know how to play bingo.
Me: That’s okay, I’ll help you.
Mom: Okay, let’s go.
Or
Me: Tell me a story about when I was younger, or you were younger
Mom: Well, I remember this one time…
It wasn’t easy for me to accept that my parents would get older, may get sick, have dementia, Alzheimer’s or one day go to Heaven. It wasn’t easy for me to change the way I thought mom, should respond to my questions nor rephrase the way I asked my questions.
Yet, by doing just that, mom wouldn’t feel like I was challenging her or making her feel like she might give the wrong answer, she responded less defensively more like herself. Which in a roundabout way made me feel better, even though I knew there would always be three of us now… me, mom, and her dementia.💖
Peace & Love