It's 3:09 am and I have had a bad night's sleep up until now. I've slept maybe 1/2 hour to 45 minutes at a time, then up to the bathroom, roll around in bed uncomfortably, and drift off only to jolt awake again. I think that the stress of the past several weeks is getting to me, and it's also combined with not feeling well and an attack of Fibromyalgia. I'm going to take some Tylenol right now. I'll be back in a minute.
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Ok, I'm back. i wish I could sleep. Insomnia is the enemy of those of us with autoimmune issues. That's why my doctors dispense sleeping aids so easily to me, but sadly the Ambien that served me well for so many years finally went awry and I was reduced to Clonipin, which does not work as well. Lately, I've added a Xanax back into the mix (I used to take a Xanax along with the Ambien); the combination works better, but it is still not consistent and tonight is a perfect example. I am tossing and turning and worrying about Eric and Anne and my own Mother who is not doing anything different than normal but being a bitch without even realizing what she is saying and doing and causing me agony on top of stress.
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Back in the summer of 2006, I was desperately ill. In lieu of being hospitalized, something that I just hate, Dr. V- arranged for a home health care nurse to take care of my immediate needs in my condo. She was supposed to visit me daily, setting me up for steroid injections and giving me IV fluids on a regular schedule, but she chose to only show up every few days if that, rarely answered my calls (and even ignored calls from my doctors), and I ended up terribly dehydrated and unable to communicate well. Somehow I had the paramedics in my home, Adele was involved, and they thought - because I was rambling on making no sense and they found my vast supply of untaken meds - that I was a drug overdose. Adele set them straight, thank goodness, I was transported to Tarzana Emergency Room, and admitted into the hospital for treatment, rehydration, and testing of my heart to see if the situation had caused permanent cardiac damage. I was lucky; it had not. The nurse got away with what she had done, or more correctly had not done. I turned her in to the California Nursing Board for review, but years later, in fact in 2009, the entire board was fired and replaced for not following through and doing their jobs. But that's another story for another time.
For now, let it be said that before this incident, Mary - a dear friend and neighbor who has since passed - and I - who was on disability - would spend hours in her condo discussing our various maladys and whether it was worse to lose one's body first or one's mind. It was a difficult discussion. We were both failing physically, and were acutely aware of what was happening to us. But if we lost our minds first, would we be aware of our failing physicality and still suffer for it, or would we be oblivious. After the incident in 2006, I called her. At that point, she was in a senior living center down in San Diego, and told her that I finally had the answer. It was much worse to lose one's mind. I knew what was going on around me, I knew what was being said and how they were misinterpreting both the situation, cause, and what would help me, but instead of being able to converse with the medical personnel, I was only able to mumble incoherent statements which they ignored. It's terrible to know what will help and not be able to communicate it.
I spoke to my Therapist about it later; he told me that this is the experience that early Altzheimer Patients go through, and that's why they're so aggitated all of the time. They know, they know that they're failing, and they cannot find the words anymore to communicate what's happening to them. They know that they should know - that part is even worse, and they know that they are not taken seriously anymore but are subject to warehousing. Later in the process when they've completely lost their minds, it's easier for them to just go with the flow, but the early-to-mid stage process is agonizing.
Anne, Eric's mother, is now going through those stages. It may or may not be classic Altzheimers. More likely, it's a series of small TIA strokes that is causing her diminished capacity, but whatever the reason, the progression has been relentless and an extraordinarily intelligent woman has been losing control of her world. About six weeks ago, she experienced a fall in her apartment at an independent living facility, was sent to the hospital, deemed fine from the fall, but through a series of serendipitous events of the most awful kind, found herself interred at a Convalescent Home.
At this convalescent home, they restricted her to bed and a wheelchair. They do not let any of the patients ambulate on their own. And because of this restriction, we have seen her body go from vital, active, and physically fit to weak and a danger to herself.
She fought the restriction, which is characteristic of her personality. They first tied her into her bed and wheel chair, but did not aniticipate her ability to escape. She does not have the use of her left arm from birth, and has always used her mouth to help her with tasks and situations that "normal" people would not have been able to figure out. In the end, they have been drugging her - in my mind only for their own convenience - to keep her quiet and in place. Even now, she resists, but only feebly, and her memory has gone from early stages of dementia only a few weeks ago to what looks like an advanced case of Altzheimers. The home insists that this is the normal course of events for demented patients; I do not agree nor does Eric. We know what state she was in six weeks ago and don't recognize the woman who we are presented with now. We fully admit that we don't know what part of this has to do with the progression of the disease vs. what this home has been doing to her, but we also agreed that we needed to get her out of there and quickly.
Yesterday, we visited a place that specializes in Elder Memory Care. It's a drop-dead gorgeous place where Anne will have her own studio apartment which will be furnished with her own possessions. They are well versed in dementia in all of it's forms, and will provide her a home with escalating services as she needs them for the rest of her life, barring any physical complications that they cannot handle. Eric put a deposit on the room; they are evaluating her at the convalescent home later today, and I will meet one of their staff at Anne's current apartment early next week and with their guidance on what should be brought along vs. left behind, will coordinate the movement of her home into this new setting. Then Eric and I will figure out what to do with the things that will not fit and dispose of them appropriately.
I was intensely relieved. Eric, I think, was also relieved although he is horrified at what is happening to his mother. He is also dealing with what could be a catastrophic health issue with one of his children - over which I am also upset - but with the kids like his Mom, I love them an awful lot and will do anything I can to help and provide for them, but they are not my immediate family and it's easier for me to react in a more clinical fashion. Also, I have a history of going logical in the face of catastrophy. That's how I got Dad's mechanically breathing corpse released out of Canada 10 years ago so that he could come back home to die. Typically, I do what is necessary at the time and then fall apart later.
Is this what's happening now? Am I unable to sleep because I am starting the falling apart process over Anne early? It's too soon for that; we don't have her situated in her new home yet. I am going to take the lead in that process because Eric needs to focus the majority of his attention on Miles and his problems. I can't afford to have a stress reaction yet.
And if I am having the typical post traumatic stress reaction I have to family crisis, who is going to pick up the pieces? Eric can't. He's engrossed in Miles's issue, has Garrett coming home for another visit in a month which he is intensely worried about, and his other kids, although doing well, are challenging. What I need is going to take time and effort and Eric doesn't have it to give. I mean, he promised me a ring last November - the only extravagent thing that I will ever ask out of him - we got the process started and I took care of finding out what i needed to so that the artist could make it, but in all of the following months, he has never found the 15 minutes or so needed to seal the deal. Even though he knew how much this meant to me and how much it hurt not to have this singular need met. It just never got done and I am now at a point that I realize that I am never going to see that ring and have given up any hope on it, so I have stopped stressing about it.
But if he can't give me the 15 minutes that the ring would have taken, he can't find the time to see me in more than a passing way; we don't have dates or time to ourselves anymore. I am not an important priority but instead just somebody who he does errands with. I know that this does not change his feelings towards me; he loves me intensely, but I know also that i am still on my own in a fundamental way and cannot rely on him to be there in a way that I fear I am going to need soon. I am feeling like I am falling apart and am completely on my own. He is falling apart and I am doing everything I can to make his situation easier. But I am paying the price even now with the continuing insomnia night after night after night, and it's going to get worse once Anne really is in a place that is conducive to her needs and I can relax on that front and focus on Miles along with Eric.
Will it ever be my turn to be able to just relax and fall apart and have somebody there to pick up the pieces? I have a feeling not. I have a feeling that I will always be subjegated to other crises which I will do my best to mitigate the effects of, and that I will always get the short end of the stick.
This is what Richard was afraid of; what he warned me about. And I responded to him that I was no prize either. I am sick, desperately ill more so than he even understands, and Eric loves me despite this and many other failings. But as I am up again tonight, in a lot of pain and stressed to the max, I wonder if love alone is enough. Eric and I make a perfect team. Our strengths and weaknesses compliment each other and i know that together, we can move mountains. But what of us as individuals? Am I meeting any of his needs on a basic level? All I am doing is reacting to his crises and helping where I see fit. Is this enough?
And is what he able to provide for me enough to sustain us for the long term? Anne is not going to get better. She may improve, she will be in the right place to be cared for appropriately, but she will never be able to be left independantly alone again. Miles may or may not have serious illness that will require constant vigilence. Garrett certainly is in a bad way and whether he is in another theraputic school next year or allowed to live at home again is anyone's guess. Ethan is addicted to the electronic equipment in his home in a way that is beyond what most teenagers experience, and I forsee a big problem with that in the future. Gabby is a fantastic girl, but she is a tween and will soon be a teenage girl with all that it implies. Eric doesn't have a clue what that is going to be about, and it's trouble.
My own mother is mentally unstable, bipolar with a vicious tongue and doesn't understand what she is doing to herself and those around her all the time. She is isolated and alone, mostly due to her own personality, but does not understand it. I am the only one who interacts with her and every interaction I have, she causes me great distress and pain. And when she is finally at the point where Anne is and I have to take care of her affairs, then I will be saddled with Lisa, a nightmare beyond belief which I will not expound upon here right now, but she is the sister who isn't, a psychotic horror who weaves stories so compelling that people believe her until they get to know her and how crazy she is, and I don't want to see her or have anything to do with her for the rest of my life, but she is my future. I am stuck traveling down a path that I did not ask for and do not want here.
Can I even do all of this? I don't know. What I know is that I am up and sleepless these days night after night after night. That this is the first time I am putting my fingers to the keypad and expressing my worries, and don't even know if I am making sense or not. But even if I am not, what I am feeling right now is a terror of what the future holds. I don't see it as one of sunbeams and lollipops. I see it as something where I am only here to hold other's problems at bay or react to crises in the best way that I can, and that's about it.
It's a very dismal prediction of the future, maybe something that only a sleep-deprived person at 4 am could dream up, but no, I have a feeling that it may be the truth. The lack of a ring on my finger or even one in progress is a materialistic warning of my fears.
28 posts in 28 days. It's too early in the morning for me to even know what day this is. So what?
1 comment:
((((love you)))) GET SOME SLEEP!!
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