Things with my mother have been completely insane for the past week. Today, I had the “wonderful” experience of dealing with lawyers for the first time regarding her health situation and trying to make some progress in the area of not having any legal right to assist in decision making about her care, which is important considering she can’t do it. Unfortunately, she also can’t be forced to offer me rights (power of attorney, guardianship) as long as she is deemed to be of sound mind and body (of which she is neither but is deemed as such by our ridiculous medical system).
At our last ER visit after an exceptionally bad fall that she had (due to poor decision making – as in , “it’s a good idea to try to walk three miles to a store rather than call my daughter and ask her to just drive me there.”) even the ER doctors were infuriated by this ridiculous system and code of law, because they knew she needed to be held for extended evaluation and they WANTED to hold her, but she had to agree. Of course, she didn’t.
Well. I’m going to be completely honest with you all right now. When I blogged several days ago about how hard and how nasty caregiving can be, things were bad. Today, things are much worse. Recently, a friend of mine gave me some sound advice on coping with this whole thing but here I am, again, finding myself in a place where I feel like it is all just TOO MUCH. On top of what I’ve been dealing with pretty much on my own for the past few years, now I have the added pleasure of family members (some of whom I don’t even know) deciding that it’s a great idea to tell me what a terrible job I’m doing, try to manipulate the situation in some ways, but mostly try to manipulate my mother.
I’m trying my best. I really am. But I am NOT OK. I can feel my mental health starting to fade. I can feel the depression grabbing on from the inside out, trying to swallow me. I was doing well this past week…I was focusing on things that were far removed from my mother and that situation more than the situation itself, even though I was still in the situation. I had a couple of breaks where I didn’t have to be the caregiver, as a friend visited with my mom. But tonight I can feel myself shutting down. Pulling away from everyone. Building those walls back up. Closing myself off.
It’s all I know to do – I feel insecure and vulnerable and I feel emotionally/mentally unsafe. I am only human, and I’m tired. I’m tired of fighting. I’m tired of fighting with my mom to keep her safe and alive. I’m tired of fighting with the judgments and the interference of others who are only making the situation worse. I’m tired of fighting with the medical system/professionals. I’m tired of fighting a losing battle with my state regarding the laws surrounding how I can (and mostly can’t) take care of my mother. But mostly, I am tired of fighting with myself.
I am doing my best. But, I just can’t grasp – I just can’t understand at all – how that’s not enough (NEVER enough) to keep my mom safe. To keep her taken care of. I can’t understand how I’m expected to do it, I’m told I’m the only one who can as her only living immediate family member, etc., but no matter what I TRY to do to uphold that responsibility, whether because I feel obligated or just compassionate, I CAN’T ACTUALLY TAKE CARE OF HER. I can do all the things – the driving her around like Miss Daisy, the doctor runs, the help with the cleaning, the yard work, the trash pickup, the picking her up when she falls, the cleaning her up after accidents, the turning back on the power and water after it’s been shut off because she hasn’t paid it even though I’ve taken her…I can do all of that.
I can do all of the things. BUT I CAN’T TAKE CARE OF HER in the way SHE NEEDS because I don’t have any legal right to made decisions about home health care and other services. I’m expected to care for her, but I am expected to do it ALL on my own, because she refuses to acknowledge or accept that there is a problem and refuses any help other than mine. And that, my friends, is running me into the ground faster than alcohol or cigarettes or fast food or any other vice that is bad for our health would do.
I know that if Dorie was here, she would tell me that it’s just when you’re about to give up that everything might be about to turn around. She’d tell me to, “just keep swimming.” If my Dad was here, he would just handle it because she’d listen to him. But when I think of Dorie saying, “just keep swimming,” all I can think is that I feel more like I’m drowning, and there’s not a life raft in sight. Everything works against me because I don’t have any legal rights when comes to any of this, no ability to make the decisions that matter and need to be made. And I feel like in my own sinking and flailing I am pulling everyone around me under along with me.
People say that I need to stop fighting and just float. That I need to stop worrying because it will work itself out. And in so many cases and situations in life, that is true. But if I don’t keep fighting, my mother’s literal life is at risk. That is not an exaggeration. So I try – I keep on fighting a broken system and a stubborn, set in her ways old woman who pretty much hates me at this point. But I’m tired.
I’m tired, and I’m fed up. I’m sick of people around me encouraging me to express myself and vent it out and talk it out, then telling me, once I’ve done that, that I’m feeling sorry for myself or I am complaining. This is a woman’s life, and all I’ve ever done was my best to take of her while she’s fought me tooth and nail. When those people have been in my shoes, they can then talk to me about feeling sorry for myself or complaining. But until then, they don’t have a CLUE what it’s like.
Then I have people say things to me – I KID YOU NOT – like, “you have a choice, you choose to care for her.” In response to that, nope. It’s just me. I take care of her or she dies via starvation or getting hit by a car or wandering off and falling somewhere where she’s never found. Then, there’s the response of, “well, you can choose to let her do what she wants and if she dies she dies.” SERIOUSLY? Just let her die? Do you know how much that hurts? If this was someone else mother, and their situation, and I said that to them, I’d expect to be told that I was being insensitive and heartless, and that that was a horrible thing to say.
There are no easy answers – maybe there is no answer at all except to keep going as things are because this vicious cycle never seems to end. So, perhaps it’s just all about warrioring on. I just don’t know how much more warrioring my mental health can take. We all have limits. We all have a sort of “mental cut off” valve that certain traumas or grievances or situations can push to the off position. And that’s where I feel myself heading.
I NEED HELP to keep going – help taking care of my mother, so that I can take care of myself and my own family, and animals. I’m tired of warrioring on. And, I don’t want to end up being killed by this battle… That’s the scariest part of the depression creeping back out of my gut and into my mind and spirit again. But without some help with my mom – without some rights and some meeting in the middle and some serious healthcare help to go along with the antidepressants I’m on and the therapy I’m working so hard in for myself (and some of my own behaviors I’m already working on changing for my own good), well – truth be told? I do fear for my life as much as I fear for hers tonight…
I have spent a lot of time thinking about this in the last couple of days: At this time in my life it’s not even about ups or downs or moods…it’s about bad days and good days. People say that you can choose to have a good day just by having a positive thought when you wake up, or by praying or meditating when you wake up – all sorts of different things like that, usually involving gratitude for something, even just life itself. I find that extremely difficult some days, and completely untrue on those days, as witnessed by my past couple of posts.
I don’t think that the power of positive thinking is always enough. There is nothing I can EVER do to change things with my mother. I can not cure dementia. I can not change her. I can not change the situation as it is at this time. Same thing with grief – I can not change the fact that my father and my best friend are dead. They are not coming back. In those instances, people will say it’s down to acceptance and that is true. I can get behind that, to some extent, although as most of you know I don’t believe in such a thing as an end to grief…
I was listening to music earlier while I was folding laundry and this song came on called, “Breathe Me,” by Sia. It hit me in my gut like a bad piece of chicken. We can take responsibility all we want to, we can take action all we want to, but sometimes it just hurts. Sometimes we are just lost. Sometimes we are just hurt. Sometimes we are just afraid. Sometimes we are all of those things and more, all at once, and we are completely overwhelmed. That’s where I’ve been.
Yesterday a friend of mine told me, “Now I’m gonna say this and I just want you to listen to me. I don’t want you to use (anything) as a crutch. You’re STRONG. You walk around with a shaved head because you want to! You don’t care what people think…” She went on… So last night I laid in bed, in my pitch black and freezing cold bedroom trying to stave off an impending migraine (unsuccessful, by the way), and I let all she’d said float around in my head. And ultimately, two things stood out to me.
I do have a crutch. It is alcohol. And it is a waste of time – it doesn’t accomplish anything positive, except momentary lapses in the ability to feel things. And, strength is relative. People see different things as examples of strength. The fact this person, who has been through more than I ever imagined when I first met her, completely rebuilt her life and walks around with such an air of confidence even my shaved head is in awe – for this person to say to me, “you are stronger than this. You ARE STRONG,” humbled me in a way that I couldn’t understand. Of course, that led to more thoughts and more considerations and a whole lot of writing in my journal…but I fell asleep knowing that I did not want to drink today.
And I didn’t.
And I don’t know why. I don’t know what changed.
I do know that by lunch time tomorrow I’ll be craving alcohol like the drought ridden fields crave rain…and I don’t know what I’ll do about that. Probably text or call her, or my cousin, or my therapist…maybe go to the feed store and hang out. I don’t know. But I do know this much – if you really want to make a change, you will do it.
I haven’t smoked in over 24 hours, haven’t had a drink in over 24 hours, and the only reason is because I just wanted to see if I could. I didn’t tell anyone until later in the day today, when I was at the feed store. I didn’t keep it to myself because I was afraid I would fail. I kept it to myself because I only wanted it to be about me and what I wanted.
I don’t know what tomorrow will bring. But I do know that I don’t feel the same way I felt a few days ago when I was battling the suicidal ideation and the complete lack of regard for my life, my health, or my Be-ing. I don’t know what changed… I think mostly, it was being seen, and being cared for, and being spoken to in a way that wasn’t at all what I expected.
I always said I would never allow another “Dorie” into my life – or at least that there would never be another her. I think I may have changed my mind…or my heart… You never know who is going to walk into your life, or when.
Therapy used to be the bane of my existence. Now that I have the best therapist on the planet (for me) via BetterHelp, it’s not so bad. The whole thing revolves around my time schedule – which can be pretty chaotic – and finally finding (or being gifted by the universe?) a therapist who GETS ME is priceless.
That said, it doesn’t change my thoughts or feelings. It helps me to express them in a safer environment than any other, but the reality is that my kind of depression doesn’t ever really go away. It’s up and down, it doesn’t flip but it rises and falls. And with my mom? It’s basically a pit of hell.
I think the thing that brings me down the most is watching this all play out and not being able to do a damned thing about it. Dementia is like that. No matter what you do, it’s gonna progress. Maybe slowly, maybe quickly. Maybe meds help. They don’t if you’re fighting with the person to even take them.
Mostly, the whole situation makes me both miss AND respect my dad so much more. Sometimes I am so angry that he is gone. Most of the time time I’m just sad. Sad at a level that isn’t just melancholy or blue, but at a level that is a thunderstorm – dark clouds and pouring rain, raging winds and thunder in my head. Sad at a level that I can barely breathe through these days.
But here I am. That counts for something, I suppose. Even still, I feel so useless to everyone around me. I feel useless to my mom because she won’t LET me be useful to her. I feel useless to everyone else because, well, depression. I just stay in my room, and read. I cry but I don’t know why as it doesn’t really let anything out. I wish that someday I would be able to find the words to describe this experience just in case I make it past it and have an opportunity to help someone else.
I hope you all have a pleasant weekend. I appreciate your correspondences and your kindness more than you know. You help me more than you know.
All the love,
Today someone asked me a whole lot of questions about different things. The one that stuck out the most for me was about how I felt about dealing with the situation with my mother, and if I felt like a bad daughter. It didn’t take more than a nano second for me to yell, “HELL NO I don’t feel like I’m being a bad daughter – I think what’s going on is that I’m sick and tired of being treated like one.”
It’s triggering many things, from depression and hurt in general, to bad dreams and weird memories from my childhood… Not that life isn’t difficult for all of us at some point in time, and all the time for some people, but that’s the thing I’m feeling the most. It’s just all so difficult. I told my mother’s doctor just last week I no longer wanted to be her guardian (something I’ve been fighting to be named as for over a year) and that I was willing to lose the land and even my horses at this point if it meant that she was cared for. I feel like I just can’t deal with it anymore.
As far as drinking – I shared a while back that I was concerned about how much I was drinking. Truth be told I’ve been using alcohol as a sort of escape for a long time, just not to this level. I had quit for a while but I just picked it right back up because, well, in the simplest of terms, fuck it. I know it’s not the answer and I know it’s not healthy (at a number of levels) but right now I really just don’t care.
I really don’t care about anything right now… I feel very much like I could hide away and stay gone for a very long time and be perfectly OK with that. I really can’t even find my words today – which is also unusual.
I’m angry. I’m depressed. I’m not well. And honestly, I don’t care. I’m ok with not being ok. And right now I’m ok with drinking myself to death. I don’t care if that sounds selfish to some, or if it’s something others can’t understand. Raw me here. I don’t want to walk in these shoes anymore. I don’t really want to walk at all. And I’m not even writing this under the influence of alcohol. I’m also not writing it for attention. I write. That’s it.
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.
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…
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.