Open, honest, heartfelt communication has never been a thing in my family. Especially with my dad. He's always been very honest and direct, but never touchy-feely. When I was young, he was emotionally abusive and I was very scared of him. There are times even now when I am scared of how he will react to something and am not truthful with him because of it. He's 72 and I'm 45. I thought I'd be over that by now, especially with nearly ten years of therapy off and on.
All of that is so you'll understand what a big deal this story is. My dad is my mom's primary caregiver. I'm her secondary caregiver. She isn't currently diagnosed with dementia or Alzheimer's, but we've been helping her care for herself for about five years now.
The other day I was finally able to sit with my dad and have an open, honest, heartfelt discussion about how my mom is really doing! I'm so proud of myself for that. It was very difficult, but I did it. For me! Because I needed it.
I worried that he didn't think she was as bad as I do (and everyone else does). I worried that he still thought if she could just get off all the meds she takes she'd be okay.
But that's not the case. He did not flinch when I said I thought she was in the early stages of dementia. (Trust me, if he disagreed with me he would have said so and probably told me I was stupid to think so.) He is an old cowboy and really doesn't get stressed. He just rolls with things. He suggested the best way to deal with the situation is to just take it as it is and not be sad about it. Wouldn't it be wonderful if I could do that like him?
The last time he left town (for a much needed respite, a golf tournament with my brother, which I fully supported), things were the worst they've ever been with my mom. My adult daughters were supposed to stay with her and take care of her. (Before that week, all that would have meant was driving her around, helping her get food, and maybe doing some laundry or shopping for her.) But she was in severe pain, needed an MRI (which I took her to) - which made her pain worse because of the way the technician adjusted her, and tried pain pill after pain pill to get some relief while waiting for her appointment for an epidural injection. Her anxiety was through the roof. Because things got so bad, my girls were not enough. She needed me, like a scared toddler needs her mom. She was clingy and scared. All of a sudden I needed to be with her 24-hours a day, including having her take over my bedroom and sleep in my bed because she emotionally couldn't go home (she has some PTSD issues with that house which flare when she's bad). It was a horrible week that broke me time and time again.
Because of our lack of open communication, I never told my dad how hard it was on me. But someone did, because during our open conversation I could tell he knew and is doing what he can to not leave her again.
I was able to tell him, very honestly, that I think I could do it without it being nearly so bad now. My perspective has shifted. First off, it wouldn't hit me out of the blue. Now, if he has to leave town and leaves one of my daughters in charge, I will schedule my life knowing I might have to take over at any time (including always having a bag packed, ready to stay with her for a couple of days at the drop of a hat). But most importantly, I've learned to see the things she does as the illness, not her. She isn't the one making my life hell, the illness is. She isn't the one yelling at me, the illness is. She isn't the one refusing to cooperate and follow through on the things she said she wanted to do that I worked so hard to make happen, the illness is. That really helps.
Thinking of myself as her caretaker has changed things. Choosing to be her caretaker, because she's my mom and I want to help, has made all the difference.
She may not ever be diagnosed, as long as my dad is alive and fully able to care for her. He said he doesn't see any point in it. He doesn't want to know what's coming; he'd rather just face it when it does. Why spend more time worrying? I'm a planner. I would like to know what's coming so I can be ready. But I can honor how he feels. All the testing would be so hard on her. She really struggles when she has to have any kind of testing done or make it to doctor's appointments. And I understand what he's saying about just living where we are in the present moment.
So he can stay there, and I'll do my research. I've joined a group on Facebook for people with dementia and/or caregivers of those with dementia. This group is about information and support. Mostly support. And sharing their stories, which help me and others find possible solutions for those moments that leave us frantic. And answering questions of those who are now where they've already been. I read what they write and try to remember it for the future. I can see so much of what they say in my mom. This group has already helped me so much. They strengthen me through the dark times. It helps to understand more what it is. It helps to see some of what may be coming. It helps to hear them speak with concern for their loved ones when I'm just feeling put upon. But mostly, it helps to know I'm not alone.