You’ll never know…

…until you have actually and fully been there.

Until you have actually walked this road in a way that leaves the soles of your shoes worn out and developing holes, and your feet blistered and bleeding twice as much as your heart pumps through you and until you have not only seen but had no choice but to actively participate in the sights and scenes DAILY, because there literally was no one else, for so long that you feel like you’re in a Stephen King novel, no – you will never know what it’s really like.

How it can wear you so thin that it nearly destroys you, the way water seems to work like acid and melts cheap toilet paper.

How it can tear you down to a level that you, as compassionate and kind a person you are or try to be, think, “the next time someone tells me I should smile more, or I should look on the bright side (which is what? That eventually she’ll die and I won’t have to do this anymore?) I’m going to punch them in the face.”

How you start avoiding people because you’re sick of their hypocritical judgments and comparisons, OR the way they pretend to understand when you know good and well they have no clue so you just stop talking about it and pretend it’s easy and everything is fine…

100%. Until you’ve done it, you’ll never understand completely what it’s like. I shared a lot of our journey. Even then it was only a fraction and what I did share was picked apart by completely irrelevant, inexperienced people. But I will keep sharing this until we have real reform and raise the standard of care for caregivers and their loved ones with dementia. (Thank you, Martina.)

When my mom died, it broke me. It wasn’t the grief that broke me, it was the RELIEF that broke me. Because I had no idea what to do with it. And I felt guilty for feeling it in the first place.

Finally being able to breathe and stop and rest after SO LONG of being a full time care giver going between two homes and three people (wait, four – but I never really thought of myself, lol) and dealing with doctors and being sick myself…?

THAT almost killed me.

I’m not exaggerating or trying to be dramatic or draw attention, which is what people always love to say when you share thoughts like this (which reallllly doesn’t help so just shut up because that kind of thing can drive someone over an edge you will never understand when they’re grieving loss after caregiving).

I just finished writing a whole chapter about this. Maybe I’ll share it via my blog… For now, here’s the thing I want you to know and remember:

If you’re in a situation like this or are grieving after a situation like this, know that you’re not alone. Know that there ARE those who see you and feel you because they’re there, too, or they’ve been there before.

I pray not one of you ever has to go through it (or go through it again).

If you are forced to go through it, I pray you get the resources you need (financially and otherwise) sooner than a month before your loved one dies because the only thing that finally saves the day is hospice.

I pray if you do face this situation, you have less people than more coming at you with what you need to do and how you need to act but NEVER actually doing anything to help you do what they think you should do and regularly acting the same way you’re acting despite not being in your shoes and instead having everything they could ever want or need.

And I pray that if you ever find yourself in those shoes, you give yourself grace and you forgive yourself daily, before the day begins, for the fact that you’re never going to be perfect. You’re not going to get it right and keep your cool and manage your emotions well EVERY DAY. You’re just not. Period. So accept it and be gentle with yourself and just keep doing the best that you can. You’ve got this. You really do. You don’t think you do or feel that you do, BUT YOU DO. 🙏💜🙏

And if you’ve never been there at this level and never have to be? I pray you don’t take that privilege for granted. Because you ARE privileged.

💜💙💜

Feeling Old

This past week or so has been so crazy. I know – I’ve already written about that more than once. But tonight I want to write about how old I feel, and it’s BECAUSE of not just this past week (while the majority of it is) but of being my mother’s caregiver in general for the past few years.

In itself, caregiving gets old. But the way it makes you FEEL… Argghh! There are days when it doesn’t feel “like a gift to be able to care for one who once cared for you.” There are days that I don’t feel “grateful for the chance to give back.” Pfft. Let’s be real – it’s emotionally nasty. It’s a nasty, dirty, wreck of an emotional job and it SUCKS a LOT, a lot of the time.

That said, I still push on. As of now, as you all know, I don’t have any other choice.

In updates to my lasts posts about my mom, I’ve gone in to check on her and twice found her in the floor since those posts. There have been a couple of other issues that have come up (financial issues), and all she wants to talk about is going to buy a new computer. She doesn’t even have the Internet right now. She has an iPad. I explained this. She doesn’t NEED a computer, she needs to worry about us getting other issues sorted – namely her CARE. It’s just like she doesn’t NEED, nor can she have, her car.

She doesn’t – she can’t, or she refuses to even meet me halfway and try to – live in the reality that, as sad and frustrating and angering and annoying and depressing and ridiculous as it all is, especially for her, her life is not, can not, and will never be again what it used to be. I know that is awful for her…but it’s emotionally exhausting for me, too…

And you can’t ever make that make sense to them. You just can’t. It’s a losing battle to try, so you lie to them. You tell them, “maybe when you heal from this fall.” Then you say, “maybe we should give it just a couple more months.” Then you say, “maybe once we get the car fixed,” even though the car is not even broken. You make shit up. You LIE to your parent, even though as a child you were beaten for such nonsense. Like, BEATEN. With a hickory switch.

The role reversals are hard. They make no sense to my brain some days. Some days, despite the fact that my mother was never in my life like this for me, I want her to be my mother and hug me and tell me it will be OK and say comforting things like, “we’ll get through this,” or, “your daddy would be so proud of how much you’ve done here, and that you’ve worked so hard to get this back to a working farm.” It’ll never happen. It wouldn’t happen even if my mother didn’t have dementia/mental health issues. But as a child, I DO wish it would.

My life exhausts me. I get up early in the mornings, I take care of mama and the horses and chickens and everything. I come home and take care of my kiddo, we do things, whether it’s school or playing outside or whatever. I do housework and yard work at the neighborhood house. Then, after whatever other running around I’ve done all day (bank, post office, etc.), it’s back to the rinky dinky little farm I’m trying to build and mama’s, to either bring her home or to make sure she still IS at home.

By the time I sit down at dark, I feel like a little old lady who can hardly crochet anymore because of her aching, arthritic hands – and I only have slight arthritis/carpal tunnel – when I try to write or type these things out of myself. I feel like a firefighter who has been battling a blaze all day long in the hot summer sun. I feel like a marathon runner who has been training all day. I feel like a doctor who has been running all day long to go from this patient to that, this hospital to that office to this building to that, trying to make sure everyone is being cared for and check to see how they are and what they need and what changes need to be made, etc.

Yet, I’m nothing so achieved as a firefighter or marathon runner or doctor. I’m just little old me, wearing myself down to the core of my sanity and watching it start to spindle apart backward, one twist at a time coming off the spool and piling up in a big ball at my feet. Then I get tangled up in that ball, and start tripping over my own delusions and disillusionment and exhaustion and the anxiety and panic start to build and then the depression grabs on, you know, just for kicks, and I end up sitting in the pile of sanity that I used to have, having a complete come apart.

Does any of this make any sense? I don’t know if it does or not, if you’ve never been in a situation like this or at least somewhat similar to this. But I have a hunch that most of us have felt this way at least once – maybe more than once – just because…well, LIFE.

Life is a gift. Yes, it is. And I am so grateful to be alive. I just wish I felt it. I do, sometimes…but I fear I’m wearing that escape thin, as well. Perhaps I should just dwell on writing about the life I wish to live rather than chasing after one I can’t have right now…and another one I know I never will have (because some things are just not meant to be and not gonna happen…you know?). I’ll keep making music, and sometimes sharing it. I’ll keep playing with photos. I’ll keep hugging my son and my doggos and my gentle giants. Playing with my chickens, and with fire.

I’ll stay on the outskirts of my own chaos for as long as I can before I let it suck me in. I will make no promises on how long that will be.