I have no idea who I even am anymore…nor, who I wish to be.
The last few years culminated into feeling like a dream for the last several months – I have literally survived, I realize now, by living in a whole non-reality, on autopilot, and there are very few everyday experiences and mundane daily tasks that I do now without being in an almost confused state. Like, “what is this?” or, “how did I ever do that…I don’t remember…”
I am beginning to realize that I actually exist – and can exist – as a being separate from continuous worry and fear about/for my mother, and I have completely forgotten how to be that person. I still wake up some mornings, if I’m not already at my moms, with this programmed state of, “I have to go check on my mother,” being the first literal and conscious thought in my head. Even if I stay there, which I haven’t been able to peacefully do yet, I find myself in the mindset that I have to get up every few hours to check and feel guilty when I wake up and think I forgot to set alarms to wake up.
Everyone says, “it’s got to be such a relief, though, since she died…” It is, in some ways. But in others, it is the same, just different, level of stress to readjust to “normal,” which is difficult now anyway because WHAT IS NORMAL in a world of COVID? I focus myself on cleaning and doing what needs to be done before anything else (music, photography, etc.) when the things I used to do I was only able to do mindlessly, really – just as a distraction from insanity.
I don’t know if this will make sense to anyone who reads. It has to sound like the ravings of a lunatic mind – but as I’m remembering my intelligent, creative, indulgent, passionate, and subconscious mind I find myself feeling everything from confusion to guilt to elating freedom to even complete blankness and emptiness.
It’s not the grief. Well, it’s partially that but only about 3/4. I don’t know, in this moment, WHAT the word or feeling or experience is. I remember going to through it to some extent after Dorie died and I had been such an integral part of taking care of her, but it wasn’t the same as this, nor was the care.
24/7 worry and anxiety about someone for years, and then 24/7 for months – even to the point of every single daily task they needed to do and then to the point of helping them through every moment of their death…it’s a completely different experience to readjust to existing without that task attached to your back when it was there for so long.
So yeah, you’d think it’d be lighter, more peaceful existence…but it’s actually more like a feeling of chaos. I hope like hell it doesn’t last long. I have too much to do – and, too much I want to do. I assume it will last through and a bit beyond probate because that limits me on the speed at which I can chose to move forward and move on… If it were up to me, I’d snap my fingers and life and the “me” I was “pre-Alzheimer’s parent” would click right back into place.
We don’t get into any state of being in the blink of an eye and we become the next version of ourselves even less quickly, I suppose. That’s been my past experience. So trudge along and get it done, I guess… ((Yawn.))
**Edit: my mother passed away 26 hours after I posted this.**
About five months ago, my mother was mentally bad and had wandered and broken her arm. Three and a half months ago I brought her home from the hospital. For years before this, from about six months after my dad died, I had struggled and fought for her and tried to care for her but she didn’t want to let me. I heard, “I am FINE,” at least 72,000,000 times. We had all made jokes about her condition – jokes about “NaNa” – jokes about how bad she was getting, “but there was nothing we could do…” Yet, I still fought…and I know those battles, and they’re why I’m here tonight.
I wish we hadn’t done that…made jokes, because it’s not funny. But I’m glad I never stopped fighting, even if we never had the mother/daughter relationship I always wished we’d had and even if I didn’t get her the help she needed WHEN she needed it because of a broken system that doesn’t correctly diagnose dementia/Alzheimer’s until it’s too late to really slow it down. It shouldn’t be this way – not with the research and the knowledge we have, medicine we have, and resources we have in this country.
I am at peace with the fact that I did my best – that I did everything I could. I don’t need to be externally validated for that…but it makes me feel and have almost a need to validate others who are or have been or will be in my shoes. All these years…they’ve culminated so quickly – in just a matter of weeks.
Three months ago, my mom looked like this (first photo) when I picked her up from the hospital. Tonight, she looks like this (second photo), grimacing and clenching in pain, almost choking on even oral liquid Ativan and Morphine, and her own phlegm and fluid, coughing like a weak squirrel, moaning and crying out in pain to the God that she believes in and still praying incessantly (again, quietly like a weak squirrel, but in pain all the same, barely able to verbalize it).
Dementia and Alzheimer’s are considered mental health issues and illnesses. Don’t tell me you can’t SEE IT because “it’s a mental disorder.” You CAN see it, right there on the MRI. Don’t tell me it’s not real or difficult or physically painful because it’s JUST a “mental disorder.” That’s what I was told for so many years – she’s just getting older. She’s just getting forgetful. She’s just having “mental problems” because of age. No – not just mental problems. A DISEASE – and a terminal one at that.
And you know what else? Especially if you’re a doctor? Don’t pretend to care when you don’t. When you belittle. When you get annoyed with children who are fighting for a better life and end for the parents. Don’t pretend to advocate because for the moment you feel sorry for someone. Don’t pretend like you’re Gucci just because you give to this or that charity or “buy your way” out of having to actually GIVE CARE.
You know what means even more than your charity checks and your “honest opinions” to families struggling with ANY illness or disease or end of life process when you follow up your explanations with the words, “we care?” When you SHOW THE FUCK UP for them.
I am showing up, mama, and even when you don’t want me here, here is where I will be. Too little too late to heal all the old wounds, but not too late to SEE that bygones can be bygones, and despite all of our bad times, all of the good you’ve done for me.
I’m so sorry for the hell, all the chaos I brought to you. I’m sorry for all the hurtful words and for all the times I fought you. I’m sorry I’m not the daughter you’d always hoped I’d be, playing the philharmonic or writing novels or preaching the gospel…but so many of the good things I am are things that you taught me.
“I didn’t carry you in my belly for nine months, but I carried you in my heart for a lifetime,” is what you’d often say to me…and that “to do your best and leave the rest,” was sometimes the only way to be. These words I’ve never forgotten and these words I’ll never forget.
I will soon, again, be an orphan, a fate you once saved me from…and with these fleeting last moments I am sorry. I know I was wrong. I’ll always be a daddy’s girl, and this always broke your heart…but the reality I thought you lived in was creating jealousy into art. But I always had a mom…
I understand your love tonight and what made you who you are…and that even though we aren’t the same we aren’t that far apart. I want to say, “it’s ok, let go,” though it truly breaks my heart…because I understand after all these years who you really are.
Rest now, precious woman, I know you did your best…and your best was really always enough, though I often put you to the test. I thought you didn’t love me, but you just loved me in your way…and, “rest now, precious woman,” is all I can seem to say…
I can’t, and that’s ok to know and to accept and to feel and to express. That’s what this post is about. I know I haven’t really updated here and none of you will know what is going on in full but basically my mom has been living with me and… Well…
There comes a point where you have to accept what you can not do and stop letting people keep trying to convince you that you can do in their “motivational” ways. Sure, they’re trying to help.
But when I say I CAN NOT DO THIS BY MYSELF I need people to understand something: i am doing this BY MYSELF and it’s not working – and it’s not about not wanting to. It’s not about not believing in myself. It’s not about the inconvenience. It’s not even about my own mental health (though it should be). It’s about LITERALLY not being able to care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this. And…she’s not really even my mother. Never has been, by blood or otherwise.
It’s about debilitating migraines. It’s about health issues I had long before this ever started.
It’s about I PHYSICALLY am not strong enough to help someone who refuses to help me help them – lifting dead weight every five minutes to go to the bathroom? Nope. Can’t handle it. Especially with a migraine. Getting her in the tub? Impossible. So we improvise with bowls of water and a tub chair OUTSIDE the tub. Getting her to eat? Also impossible. Which doesn’t help with her strength issues. Getting her to get out of the bed and sit up without arguing and telling me how disappointed and ashamed of me my dad would be that I am trying to make her do something she doesn’t want to do – on his birthday yesterday, when she knew how upset I was – because she KNOWS what she’s doing and she just wants to hurt me.
This is not the dementia. This is just her being hateful and stubborn, naturally. Does she even have dementia? No. Not according to the doctors. She checks out fine. So this is just an angry, bitter, mean, frail and weak old woman who needs help with physical things 24/7 and is being verbally and emotionally abusive to the only person who can keep her out of the one place she doesn’t want to go – the nursing home.
Can I even get her in a nursing home? I don’t know. But I’ll tell you this much – I’m going forward with trying because the few people who have even dealt with her for a half hour at her home or dealt with her at church or even the beauty shop over the past few years have straight up told me that she is faking a lot of this and how she acts when I’m not around.
When my helping you hurts me to a point where I am literally sick all the time? I can’t help you anymore. And I will no longer try. This is my honest, heartbreaking statement: if she wants to do it her way, I will take her to the hospital and leave her there and refuse to care for her. They can’t put her on the street. I don’t know what they’ll do with her but it’s not my concern – I have NO binding, legal obligation to be responsible for her. Why? Because she won’t LET me – and maybe that’s been a blessing in disguise.
She’s already getting bedsores because she won’t move and wants to lay in piss diapers and fights me to change her. It absolutely ridiculous.
I don’t care about how it looks if I do take care of her or if I don’t. It’s not about that. I don’t want accolades for doing it, and I don’t give a damn if people think I’m horrible for not being able to do it. But I can’t do it. I can’t care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this.
It’s always going to be a never ending battle I’m never ever going to win. I have finally accepted that.
Now. To take more meds and pray my head quits and I can fucking breathe for five minutes without feeling nauseous and debilitated.
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.
I got tired of
fighting my demons.
I embraced them instead.
I am me,
and that is more that enough,
just as I am…
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…