This is one of my favorite photos of my mom.
I had one of the roughest visits with my mom yesterday.
She’s been in a pretty good mood the last few times we’d seen her, so I wasn’t expecting anything too upsetting, but it just goes to show that with Alzheimer’s no two days, no two moments are the same. I try and go in each time with no expectations, and I’m generally good at it, but this time each moment took me by surprise.
For the record, I am my mom’s power of attorney and her medical power of attorney. From the outset of this, she has viewed me with disdain. She views me on some level as the person who controls her life. When she falls at the facility she lives in or has a medical issue, she begs them no to call me. She’s even told them I’m out of the country and can’t take calls. Then I get calls and the doctor will say “Sorry, I know you’re in China, but I did need to speak to you.” I answer, “I’m actually right here at the hospital” and he comes out to the waiting room to talk to me. My mom hates that I’m the person they call, because of what I represent in her life.
I’m also, for now, the person living closest to her and so I visit her the most, I help her out when she needs it.
Recently my mom needed a new phone. Her old one stopped lighting up in the front and was acting weird. The ringer was low and she couldn’t hear it. So we bought her a new cordless phone for her house. It came with two handsets, one for her living area and one for her bedroom. I made a joke to my husband, “I wonder how long it will take before she hates this phone and blames it on me?” I jinxed it. She’d had the phone for less than a week and yesterday evening started in right away, wagging her finger at me about how she hated this phone Why did I get that phone? It has extra buttons on it and I didn’t show her how to use it! It doesn’t work! It’s all my fault! I looked over at my husband and made a joke, “I wondered how long it would take? Well, now we know.”
At one point my mom even got up and walked over to my chair and stood over me yelling at me for how I don’t help her. “I don’t want you to have anything to do with my phone anymore. You don’t care about helping me and you just get me these things and then don’t show me how to use them.”
I tried to say something, but she was on fire. She went so far as to say I hate her and I said, “I don’t hate you, but I don’t really want to talk about this anymore.” That’s pretty much the state I get to, I just don’t want to talk about it, so I change the subject.
I’ve had plenty of practice at changing the subject because my mom has been upset with me over plenty of technology items. The original cell phone that I got her (at the time I didn’t know she had Alzheimer’s), the Kindle my sister and I got her, the iPad I got her (thinking if a two-year-old can use it my mom with dementia can use it – wrong!), the TV remote, and then she moved into other random items. She bought a flip phone cell phone on her own and she got mad at me when that didn’t work. She was given a cell phone by a friend and, you guessed it, I’m to blame for that one not working, too.
And so last night should not have been a surprise to me, but it was. My husband kept trying to change the subject, but my mom kept coming back to the phone and how I don’t help her. When my husband showed my mom how to work her VCR and her new television, she thanked him and then looked at me and said, “See, at least he helps me. You don’t care.”
I grabbed my coat and told her the snow was falling outside and we had to go. In the end, as we were walking to the stairs she said, “Should I get somebody else to be in control of me? Somebody else they should call in an emergency?” I said, “No. mom. It’s fine. They can call me.” Right now there is no one else (soon there will be). So, for now, I just have to take the brunt of all the confused anger my mom has.
My mom and I always had a tense relationship. There were times when I was a kid that I can remember happy feelings and calmness, but for the most part, it was tense and we just didn’t see eye to eye on most things. When I became an adult and had kids of my own, I saw my mom less and less and sometimes went a year or more without talking to her.
The irony that my mom’s least favorite daughter is caring for her during this precarious time in her life is not lost on either of us. She hates it and I am trying to learn a lesson from it, but most days, I endure it. I want to do better at it, but a lot of the time, I feel like I’m failing. Failing her and failing me.
Alzheimer’s is just the worst possible disease. My mom was a force to be reckoned with. This disease is taking her one piece at a time and sometimes she is aware enough to know what is happening to her. Then she cries and holes up in her room and won’t come out, too embarrassed by what is happening. All the dignity and grace she had is crumbling away and deep down she knows it.
I know she loves me, she just can’t show it anymore because she’s too worried about holding on to the thread of her old life and she sees me standing in between who she was and what is happening to her. To her, I have all the control and she is so worried about that, she can’t feel the love I have for her.
I’m not going to lie, there are days I wish it was over so that in whatever heaven she goes to she is whole and happy and wearing her red hat. But I don’t get to decide that.
Right now, she and I are on this particular path together. We will walk it together right to her very last step. And I will try my best to give her the grace and respect she deserves as she walks toward the end of her life. She will be gone from me by then, the shell of my mom, but I will be there at the end with her because it’s what I’m meant to do.
I am currently raising money for the Portland, Oregon Walk to End Alzheimer’s in August 2018. I raised almost $900 last year and this year my goal is at least $1000. This badge tells you where I am at right now in my efforts. If you feel so inclined, please donate. Thanks.