Everything feels so upside down. Today’s doctor’s visit with my mother didn’t go well. I’ve just about gone crazy, and I’m pretty sure that trend is going to continue until I do.
People will tell you not to worry and that things happen as they are meant to but when nearly your whole life is at risk, plus the literal life of someone else if you don’t risk your own situation (in my case, my little farm), it’s really hard to keep your sanity.
It’s really hard to keep your faith in a Creator that doesn’t seem to be paying attention and in a system that has proven over and over again it doesn’t give a single fuck.
It is becoming very clear to me just how emotionally draining caring for someone can be when you’re doing it on your own – and by that I mean not a finger of help from anyone else being lifted, including so called medical professionals.
Caregiver depression is a very real thing, made much more difficult by being invisible not only to those who know you but also by the one you are caring for. I truly don’t know how long I can continue on like this mentally…
My daddy raised me. This means I’m kind of…extreme. Whether it be on one end of the spectrum or the other, it’s what it is. No in between. I work hard or I don’t work at all. I cry hard or I don’t cry at all. I feel the way I feel and own it or I don’t feel at all. I love hard or I don’t love at all. I clean all the way or I don’t clean at all. People living in my house could take a few notes from that one.
It’s not a character flaw. At least, I don’t think of it that way now. I used to. What I think now is exactly what my Daddy taught me growing up:
Always jingle all the way. Nobody likes a half ass jingler.
Basically, if you’re gonna do something, do it. If you’re not gonna do it right, to the best of your ability, don’t even start.
Seriously, though. There’s that line between trying something and not being able to do it “all the way,” but in those moments I tend to recognize and quit before I waste my time going any further if I can’t do something to up my performance in whatever game it is I’m playing.
In the general, big picture, though? I’m one of those people who says, “go into anything with the intention to give it your all and do it right the first time, or don’t do it at all.” Because? Otherwise, really! What is the point?
It’s funny that I saw this this morning because this has been on my mind in a “kinda sorta” way as I’ve been writing writing writing the last few days, trying to decide whether to post the tidbits, or just let them pile up.
I think the thing I’m taking away from this is that sharing bits of it is part of my process. It’s part of organizing, it’s part of creating, it’s part of processing the words and the meanings behind them, and the feedback is always incredible. So I guess if I’m gonna jingle ALL the way, I’m gonna share bits of it as I go along… Sometimes a little at a time IS giving your all.
See, I’m realizing now that the reason I’ve struggled not only with my words the last day or so, but also with whether I’m doing the right thing with them, and my mom, and so many other things, is because my words might come from inside me but they’re not about me. They’re about sharing with others. And that’s why (and when) I always get stumped…when I try to make them just right – perfect – before I share them. It’s not about them being perfect. It’s about them just BEING – even when you think others won’t or can’t understand.
Love y’all… Thanks for your encouragement and kindness on my post about my mom. It means more than you know…
5:07AM. It’s been two hours since I opened my eyes. We have a guest staying with us for a few days, and I don’t want to wake them by going to get coffee. My eyes are beginning to feel heavy again, because I barely slept to begin with. But, I can’t go back to sleep. There is too much to do.
Very soon I will have to shower and get ready. I will feed the horses, let the big chickens out, and wake my mother. I will help her shower and get ready to go. At 7:00(ish)AM we will embark on the insane rush hour journey to her primary care doctor’s office for the emergency appointment I managed to schedule.
I will take extra medication so that I don’t panic and lose my mind on the way, but I will regret doing so once we are in the exam room. Taking extra anti-anxiety medication will create a passive me that will not raise the hell that needs to be raised.
I fear I will be too calm – that I will fail to say the things that need to be said. I will probably cry, having one of my emotional breakdowns, as I explain the situation.
Instead of being firm and saying, “THIS IS NOT WORKING, YOU HAVE TO GET ME SOME HELP WITH MY MOTHER,” I fear that I will say something stupid like, “I don’t know what to do anymore,” and just accept whatever is said in response to that.
I will explain that my mother refuses to take her medication. I will be told that somehow that is my fault. I will explain that my mother refuses to eat. I will be told that somehow, that too, is my fault. I will explain that someone needs to explain to my mother that her driving days are over, but even if the doctor does this, she will refuse to listen, and in her mind that will be my fault.
The drive home will be filled with a never-ending rant about how, if she could only have her car back and drive, she would be better, because she doesn’t realize that having her car back and driving will not fix anything and will really only make things worse.
She will sit there and pray out loud when she is not fussing about her car, because she actually believes that praying will change things. Prayer will not change any of this. There is no miracle for this. There is no cure for this.
I will help her in and out of the car at every stop, but I will not be acknowledged. No, each time she successfully enters or exits the car, she will thank Jesus. Because CLEARLY Jesus is the one doing the work. CLEARLY Jesus is the one who is lifting and holding and driving her.
Yes, I am becoming bitter. And I think that it’s fair… I do not want or expect thanks from my mother for what I do. But I DO feel insulted and invisible when each time she needs help and I help her, and even when she leaves a voicemail for me she ends it with, “thank you, God,” or, “thank you, Jesus.”
NO. See? No. Because God and Jesus are not helping you – maybe it’s possible that they are, THROUGH me, but I am the one struggling. I am the one losing sleep. I am the one doing the work. I am the one dealing with the tantrums and the soiled clothing and linens. I am the one taking care of the cats that she doesn’t even allow in her room and therefore doesn’t interact with at all. I am the one who is exhausted but continues on, despite the venom that shoots from her mouth because she blames me for her life not being the way she wishes it was.
I have issues with all of this. Why? Because where IS God? She is so convinced that God will take care of her but where was he when she made the ridiculous decision to try to walk to the store and fell on her face on Saturday? Where was the protection then? Sure, she wasn’t hit or robbed, but where was God when SHE ACTUALLY FELL? Where was the guardian angel to magically float underneath her and raise her back up instead of letting her fall?
In fact, where was God when my dad went into a diabetic coma? Why didn’t he “speak” to my mother and wake her up and guide her to find him sooner, so that he wouldn’t have seized and stroked out and gone brain dead? Where was God when I hit my knees begging for my father’s life? Where was God when I screamed out to him for my best friend? Where has he been when I’ve asked him to help my mother?
Worse than that, where has my mother’s church family been? Where have they been, aside from in the mailbox in the form of a card saying, “We missed you at church, let us know if you need anything,” and then no one ever being available (with the exception of only one person, that I know of – but that person is also taking care of a husband who has cancer) when my mother calls? No wonder she has given up on even asking them for help.
Yet, she still believes God will help her somehow to magically be ok, or change the situation, even though she does nothing to try to change it herself? And the doctors do not see this as an issue? As a sign of at LEAST early stage dementia? Everyone who knows my mother and everyone who is around my mother for any length of time beyond that of a doctor’s visit can see it. They know the reality. And for as many doctor’s visits, ambulance rides, and hospital/rehab stays as we have had, the doctors SHOULD see it.
I am frustrated. I am exhausted. I am becoming faithless when it comes to both God and the majority of people. The only thing I can manage to believe in in this moment is myself, and that stupid, tiny, yellow pill that will keep me from losing my mind for one more day. I am trying to be positive – I am trying follow the heart of my last post… I am trying to stay afloat…but I am drowning.
But unlike my mother, I have the sense to know that the only person or entity that can save me is myself – if the battles ever end long enough for me to catch my breath.
People think I have it all together. They see someone I don’t see – and they don’t see the me that exists in the middle of the night, or is shaking within the majority of the time. I am not sure that I am strong enough or conditioned enough to stay afloat, or to keep swimming. I used to believe I was. But things wear out and people wear down and that is just that nature of life, isn’t it? Isn’t that the reality?
I don’t know anymore. I’m not a pessimist – not by a long shot…but I do consider myself a realist, and I know how I’m feeling and thoughts that go through my head (some of them on a loop).
It is now 5:46AM, and I just can’t do it by myself anymore. And, that really pisses me off.
Whatever it is you’re going through right now I want you to know you aren’t alone. And it might feel like you are. It might feel like a million things are piling up on you and you don’t know if it’ll get heavier or how much more you can bear.
And you might not know who to turn to or even where to start.
Because suddenly all of this just hit you at once.
It’s like you’re floating on the surface but below no one can see you are flustered and kicking for your life just to stay afloat.
You look fine.
You smile when you have to.
When someone asks, “how you are?” you say, “good.”
But part of you wishes you weren’t so good at faking it. Part of you wishes someone would call your bluff and say, “I know you’re lying, what’s wrong?”
We’ve been told the best thing to do is lie. So we lie to ourselves saying everything is fine. We lie to everyone else saying we can handle it. Whatever that it is.
Then it just becomes too much.
I’m here to tell you it’s okay if things aren’t going well right now. It’s okay if you’re hurting. It’s okay if you want to fall apart and scream at the top of your lungs because things outside your control are happening that you don’t understand. You’re trying to find clarity in moments of confusion. You are trying to put a band-aid on the pain you’re repressing hoping it heals, but you know you’re just covering it up. Then something else comes out of left field only to hurt you more.
You go to bed at night and you’re just laying there not sleeping, and you don’t want to play the pity card of “why me?” or “why did this happen?” How much worse can things get, only to watch it play out even more?
You’re trying to piece yourself back together but you’re cutting your fingers in the process, and honestly, you don’t even remember what it feels like to be whole or completely happy.
You hate that being happy is so hard to achieve right now.
But more than that you hate that no one sees it.
You’re holding back tears and putting on a brave face because it isn’t socially acceptable to start crying in the middle of a workday. Not when people need you. Not when people look up to you. Not when people are watching your every move like your life is a show for their entertainment.
Just when something starts to shift and there’s even a little bit of light, someone has to come and ruin your day. It’s a snide comment. It’s criticism. It’s one little thing or conversation that almost puts you over the edge.
Like everyone in the universe is out to get you. And it isn’t like you to be this negative or pessimistic. But everyone has those days that turn to weeks and sometimes months where nothing seems to work in their favor.
Despite being given every reason to be mean to others and treat them the way they have treated you, you don’t. You replace their unkindness with silence. You replace disrespect with being the bigger person. You replace someone going after you with keeping your head down and mouth shut.
And they judge you for the things you do and they judge you for the things you don’t.
It’s like they have a target on your back, watching your every move waiting for you to mess up. So every step you take is a little more cautious. How quick everyone is to judge you for the little things you do wrong and they forget what you did right.
I know what it’s like to feel that way.
I know what it’s like to not understand any of it.
And you just keep trying. Trying to make them happy as well as yourself only to learn whichever way you change, someone isn’t going to like it.
You want to trust people but every time you have, every time you’ve let your guard down, they’ve gotten close enough to hurt you. So you learn to expect the worst of people, while still trying your best and giving your best to those who don’t deserve it.
Caring deeply about others is both your greatest strength and weakness.
It’s that strength that everyone seems to rely on, even though you don’t know where it’s even coming from.
It’s the energy to never let people down and constantly say “yes” even though you’re tired.
It’s the light you shine in other’s lives and the compassion to look at someone and you can tell when they’re having a tough day because you know what faking it looks like. You ask them how they are doing, even though no one has asked you lately.
It’s keeping it together when someone else is falling apart even when you want to, you still manage to be the arms holding them.
It’s admirable to be like that.
And even though people don’t give you the credit you deserve or even utter the words “thank you,” you keep being exactly how you are and you don’t change.
As hard as it is to be someone like you, you realize how rare it is too.
So when the world gives you every reason to change – every reason to treat others the way they treat you, every reason to hurt others because maybe someone broke your heart – you don’t. I want to thank you for being that type of person.
It’s people like you we need most in the world. So whatever pain or confusion or difficult life situations you’re going through, I want you to know you’ve made it through everything leading up to this and there’s strength within you, you don’t even realize.
Don’t be afraid to fall apart if you have to.
Don’t be afraid to cry if you need that.
Don’t be afraid of any of this.
Because it will get better. Sometimes though, things get worse before they get better. But on the other end of that is something really great waiting for you.
Keep fighting for everything you know you deserve because you will get it.
Yesterday was the worst day. I don’t know why, but life always seems to implode (or explode) with everything at once. Yesterday I battled with my own body and began to battle again with my mind and my thoughts. I laid down in the afternoon to nap and I missed a phone call from my mom.
About two hours later I was awakened by a phone call from the hospital. We rushed up there and were told that she had been wandering again (not so much wandering as making more poor decisions, having it in her head that it was a good idea to walk 3 miles to a store, which she has attempted to do several times since the beginning of this year). She has so far not fallen on these little escapades but this time she made it about two or so miles before she did fall.
I believe that she passed out because she refuses to eat properly and she’s also very weak and feeble to begin with, so I am not surprised. I have begged her not to do this, making that very argument and explaining how dangerous it really is. In fact, the last time, a neighbor picked her up around the same place she fell yesterday and she was walking IN THE MIDDLE OF A TWO LANE ROAD with curves and fast traffic.
I also believe that she hit the pavement so hard that she had to have knocked herself out because she hit the pavement hard enough to bust her chin all the way across and knock all of her teeth out of line as well as broke two teeth. She has a major swollen bruise on her temple and severely bruised ribs as well as scrapes and contusions on her hands, arms and legs. Today she looks like she lost a fight with Mike Tyson.
I’m not sure how long she laid there before she called me because, again, I don’t feel like anybody could take a blow like that without being knocked out for at least a short period of time, but eventually she tried to call me and I was asleep. #guilt Three people passed by to offer help – she refused help so the first two just drove on without even calling an ambulance, while the third person refused to move her and called an ambulance but then left before the ambulance arrived.
There was at least a 40 minute time frame between the time that she fell and the time that an ambulance arrived which means that she laid on the side of the road (possibly in the road for a period of time) for that long miraculously not getting hit, robbed or otherwise hurt.
This is the final straw for me and I can no longer accept the fight that I have been fighting for so long to prevent her from living alone. I will no longer allow – regardless of the fight to come with her – her to live alone. I will be raising hell with the doctor and I will sue on my own if I have to for guardianship. I have had DHR on my mother‘s case for over a year and two months and still have had no appointment with a lawyer – nothing.
The state is a waste of time and the American medical system is a waste of time. The doctor at the ER understood my concern and tried to find a way to hold my mother for at least 72 hours whether it be a psych eval or a need to be monitored physically but because she answered three or four questions correctly like “what is your name,” “what year is it,” and, “who is the president?” and because her vitals were good and her test results were negative for any breaks or internal damage, she could not be held against her will.
Now, go back and read this story again and tell me why, just because she says “I’m OK,” she could not be held. What kind of decision making and what kind of serious ridiculous danger does a person need to put themselves in – she is clearly a danger to herself and needs to be evaluated – yet there is no ability to hold her? She needs to be given the proper care and I do not have the power to make that happen because I have no legal power when it comes to my mother.
She refuses to offer me any leniency or cooperate with me and I am done with being put in the position of a doctor telling me “you need to take care of your mom” and me knowing I need to do certain things to take care of my mom, but yet being pushed away and out of the picture by my mom and the doctors – it’s a total cluster fuck and I am about to lose my mind.
If I thought I was losing my mind a year ago, well I had no idea how bad it could really get – and I know it’s only going to get worse.
Hello depression, extreme and uncontrollable anxiety and overwhelm. Welcome back.
It is 6:19AM. I opened my eyes to a faint light beginning to creep through filmy windows and as I began to awaken, I awakened to a realization that I have lost all faith in the what we call “the American healthcare system.” It is willful blindness to believe in it.
There are great people who work for it – people who care and give their all to make sure the sick are well attended and made comfortable. But they work for the system – a system that doesn’t allow them to follow their heart, only the money trail. A system that doesn’t allow them to make decisions based on their gut but forces their hand to do what the rules say is allowed and not what is right.
Now it is 7:06AM, and the light is bright enough to make the film on the windows seem to disappear. The film over my eyes, however, has not, and will not. That said, I am too tired and too weak to fight today.
The pain in both my heart and my uterus hold me down. I don’t mind being here. It’s the place I’ve spent the most time and it’s gotten pretty comfortable. So now, as my eyes grow heavy again, I bid my faith and my life as I know it a bittersweet goodbye.
Over a year ago, I did something I never thought I’d have to do. Because doctors were not helping me with my mother (who has dementia and is getting worse), I contacted adult protective services on my own to beg for help. The state came through, albeit an extremely slow process. They sent a wonderful man by the name of Mr. Hardin out to my mom’s home to evaluate things and he immediately agreed, upon meeting my mom and seeing the state of what I was dealing with (alone, as an only child), that I needed and deserved help in dealing with her.
That day back in January of 2018, I started a process of trying to get guardianship of my mother. Not something fun. Not a responsibility any human being really “wants” to have, but one that I knew in my heart was necessary. Now, we have reached a point where I need conservatorship, as well. And this is posing a problem at a number of levels. Alas, the doctors have all finally come through and given the state the information, documentation, and support that was needed to start a court case and here we are.
Except, today I found out that there is a thing called a “conservatorship bond,” and it’s something I have to not only pay for myself (which is hilarious because the reason for filing for legal guardianship and conservatorship for my mom is mostly financial – or the lack of finances, rather, for being able to put her into a better living situation with round the clock care or even in home care) but also something I have to qualify for based on my credit history. My credit history is not perfect, I’m not ashamed to say, because of student loans (which I have recently managed to get out of default, but still…). This could easily put a cramp in things, depending on the judge who hears the case.
I am anxious, I am stressed, I am worried, I am just almost at a loss. I have fought for so long to be able to legally care for my mother in the ways in which she needs care but refuses to allow me to care for her on my own, and in ways that a simple POA will not effect. And here I am, at risk of not being able to receive the legal help I need because of student loans and credit history and my disabilities due to mental illness (major depression, PTSD, extreme anxiety, etc.).
I just want to be able to take care of my mother and the law says, “you may not be competent.” Well, I’ve been competent enough for the last three years since my dad died to do so. And nothing has changed about that, except I am stronger and have learned so much about taking care of someone with her issues and illnesses. I don’t know what to do anymore.
I just want it to be over.
Hopefully within the next month I will FINALLY hear from a state appointed lawyer. Hopefully by the end of the year, I will be given my day in court with my mother to plead for the ability to care for her properly, make decisions she can’t, and make sure her bills are being paid (which they are not, at least not regularly, now).
If anyone reads this and has been in this situation or has any words of wisdom, I’d really appreciate reading them. I’m slowly coming to an end with my ability to see any positives about any of this, except keeping my mother alive…