Invisible Illnesses and Special Treatment

Two kinds of posts endlessly circulate on Facebook.  Both of them are quite whiny.  This one popped up yesterday and is representative of the Type 1 post, INVISIBLE ILLNESS and is presented with odd spellings and punctuation exactly as everyone else posts it:
"Ignorant people can be so cruel!! I'm posting this because recently I have been mocked and laughed at for things beyond my control... I have three of these illnesses as does some of my friends.... Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there for me no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, AS, ME, , Epilepsy, hereditary angio edema , AUTISM, Borderline personality disorder, M.D.,D.D.D., CFS, Histiocytosis,O.D.D, A.D.H.D, RSD, PBC,RLS etc.) Never judge!
I would add Alzheimer's to that, as early stage AD is also "invisible" (honestly, what does that even MEAN)?
And then we get the Type 2 post, the I'm not special enough one:

So first you are complaining that you have an INVISIBLE disease (or your child does) and then you are complaining that your invisibly diseased child (or self) isn't getting special treatment?  Honestly it's one or the other.  If I see a kid screaming and losing it in public, I don't worry that the kid has an invisible disease, I assume the kid is a brat.
In my dad's early stages of Alzheimer's, he appeared perfectly normal and most of the time he acted that way.  We didn't say anything to anyone about his disease unless he started at act weird.  We didn't want people pitying him for no reason.  But once something kicked in and his behavior went a little sideways, we'd simply explain, "he has Alzheimer's" and most of the time people were understanding.  Is it embarrassing for your grown up father to throw a temper tantrum in a restaurant? Of course it is, and of course people stare, and what do we do?  Not get pissed off and passive aggressive toward those people--we removed my father from the situation.  We never expected anyone in public to simply "deal with" my dad in a full-blown Alzheimer's rage.  We also did not want anyone trying to "help" except if they were calling the police (although one time we asked someone to call the police and that person flat-out refused).
I guess I don't understand the combination of "invisible" diseases and the sense of entitlement it seems to entail.  If your disease is invisible, that means no one knows you have it (unless you are trumpeting it in every passive-aggressive status on FB), so why should anyone have to be "understanding" or "kind" to you?  Is your disease manifesting in some way that requires you to need special treatment? If so, it's not INVISIBLE. 
What I'm trying to say is, pick one.  Either you have something wrong with you and you need no special treatment, or you do need special treatment.  You can't have it both ways.  You can't also expect the general public to be able to diagnose your "invisible" disease at a glance and know if you need assistance and provide whatever it is you think you are entitled to.
I will always offer to hold the door for someone in a wheelchair or who is using a walker or cane (I was raised right, after all) or to help an elderly person put groceries into their trunk but I can't read your mind and know you can't open the door yourself because of your invisible disease and if you're going to get pissed at me because of that, that is your issue not mine. 
This weekend I had a party and my new friend came with her husband who is in a wheelchair.  We were able to easily rearrange things so he could be comfortable and yet still be part of the group.  I had food without wheat for my gluten intolerant friend, meat without salt for my friend who just had a stroke, grilled chicken for friends on high-protein diets.  Because I knew about these things in advance, it was simple to do. But if my friend had arrived with her wheelchair-bound husband with no warning and gotten angry that the party was up several steps on the deck, is that my fault or hers for not telling me her husband is handicapped? 

Think first?! (reaction to a negative comment)

(begin rant)
I've been writing this blog for a LONG time, and I know I often talk about things that might make people feel uncomfortable--that's the road I've chosen to travel.   I have other blogs, on other subjects, and I often get negative comments on those.  But on this blog, NEVER have I had anyone say anything bad...until now.
(I'm not talking about spam--I'm talking about rude.)
I recently did a post about what Alzheimer's cost my family in terms of Social Security income.
This is what someone commented:   
"Some people don't think about their retirement thoroughly. And they take important steps before thinking about it twice or asking an expert."
WHAT?!  My dad retired because he had ALZHEIMER'S.  Did you miss that, jerk?  And my mom retired to be a CARETAKER for my dad, who had ALZHEIMER'S.   
There is nothing to "think about thoroughly" when you are sick with a fatal illness, or your spouse is. 

And if you are implying they should have had investments, I didn't even get into that in the other post.  But I will now.  My mom had a nice 401(k) and some other savings.  But there is a thing called a SPEND DOWN where the government makes you spend ALL your money before you or your spouse can go on Medicare.  So the retirement she did plan for instead went to $10k a MONTH on a nursing home until she ran out of money.  How do you plan for that, huh?  You got an extra $120K a year just lying around waiting to be spent on nursing care?  Good for you, I hope you live a LONG TIME and suck up all that money and someone comes along and tells you that you should have planned better and died quicker.
(end rant)

My father’s ghost

I had one of my rare dreams the other night—a dream that I am in (as me) and involving people and places that actually exist. It was a long and complicated dream and I’ll spare you the details. But as part of it, I was hanging around with a bunch of ghosts. Not scary ghosts going “whooo” and rattling chains, simply spirits of dead people. One of them was my dad. And at first (in the dream) it was cool to have my dad’s ghost around—not much different from having a flesh-and-blood Alzheimer’s dad—there but not there, you know?

But as I spent more time trying to communicate with my father’s ghost, I realized something horrible. Something that stayed with me when I woke up, even as the other details of the dream faded away.

My father’s ghost still had Alzheimer’s.

How unfair is that? In the dream, and now, awake, I raged against that. That is not how it is supposed to be. If you have dementia, when you die, you get everything back. You have to. You die and you go to the Elsewhere bar and have a drink. Whatever it was your soul was supposed to learn (or teach you) by stripping away your memories and your personality, you learn it and have a good chuckle, and then you hold the door for some newcomers (8 per hour, just from the US).

You don’t come back as a sad, demented ghost.

I don’t know what in my psyche triggered that dream and I can only hope that it was wrong.

(cross posted to my Shamanic Musings blog)

Anniversary & Hopes, plus more death

It's been a year today since I saw my dad. Tomorrow it will be a year since he died. That means, somewhere around the time I was putting Nutter to sleep, the anniversary of the last time my dad seemed to know who I was passed. It seems so far away, but I know that's because I spent so many years saying goodbye to my father and missing him when he was right there in front of me. One good thing about a long goodbye is that your mourning is totally different.
When my black cat died in 2006, unexpectedly, it was like part of me had been ripped out. I spent months crying and it was a year before I got another cat (not a replacement cat). I spent 18 months saying goodbye to Nutter, and although it was awful to take him into the vet and have the needle put in his leg and see the light go out of his big, pretty eyes, I didn't cry for weeks or even days. I still have my moments (like right now) when I miss my silly white kitty, but I'm okay with the fact that he died. He was 15 and he had cancer and he was done. He told me he was done and I honored that and let him go.
By the time my dad died last year, he was done too, and watching him die was like a battle. I can't even go back and re-read that section of this blog. It was horrible to have my cat killed (and face it, even though we say "put to sleep" and it was a gentle, painless act, at the end my cat was dead and I signed the paper making it so), but it was more horrible during his last days to watch the cat suffer, and to try everything to fix him and not be able to make it better for him—except to offer him that final needle. It really did stir up memories of last year and watching my father suffer with no hope of recovery.
I know I've said it before but why is a human allowed to suffer yet we can easily end the suffering of an animal, a lesser creature? If there was the slightest chance he could have woken and been my father again...oh how I would have fought for treatment. Instead the only treatments prolonged his pain. I can only hope that long before his body gave out, my father's mind and soul had fled to the Elsewhere Bar. No one should have to live for weeks in a body with a fever of over 100, with a broken and bleeding mind, burning up from an untreatable infection. I can't imagine how much physical pain he must have been in. Maybe that's why I was so intolerant of Nutter's final days. We took him to the vet and tried a last ditch treatment, which didn't work and left my kitty sprawled on the floor crying in pain, still unable to eat, hardly able to breathe. The very next morning, I made the call for his final appointment. No way was I letting that go on, as they say, "until nature took its course." I spent too long last year watching Nature's ineptitude with my dad.
I have so many wishes about my father’s death. I wish that he had died from that heart attack the year before (the same heat wave that killed my black kitty, in 2006). The hospitalization for the stent implantation sent him on a long spiraling journey to his death. We would have ranted and raved of course, saying he had more good years left in him, but he didn't. He had maybe 6 months (that next spring is when he started getting really violent) and "good" is relative. I wish that when he hit his head at the nursing home and the doctor told us he wouldn't survive the night, that he hadn't survived not only the night, but the next 6 weeks. His true, horrid suffering started then--with the seizures, the massive brain damage, the ongoing bleeding from the heart drugs (for the damn stent), and of course the lovely MRSA that finally did him in, although it took its time doing so.
I wonder if the resentment and anger over how my dad died will ever fade. I can get over that he had Alzheimer's, even though he got it way too early and his life was cut short. But the actual manner of his death, how he looked…I haven’t been able to put from my mind. The nursing home did the best they could keeping him comfortable and I hold no blame in my heart toward them. I hate that hospital though.

---

A new interview with Terry Pratchett, the author I like so much that got diagnosed right after my dad died, just came out. He says he has Alzheimer's but it's actually posterior cortical atrophy (which is some kind of weird variant, I guess). He's having trouble getting dressed and driving but he's still writing. I just read his newest book, Nation, which isn't part of his Discworld series. He was diagnosed partway through writing it. I didn't count how many times the book made me cry. It's not about someone with dementia--it's about two children from different cultures coming together to rebuild civilization after a tidal wave--but it has themes of social isolation, and descriptions of being a grey ghost in the world, unable to communicate with anyone. I wonder if he wrote any of it consciously as a metaphor for his condition? It also has a rather unhappy ending, in that what you WANT to happen doesn't. Rather like how Stephen King ended the Dark Tower series--the only way it could end, but not the happy and desirable outcome. Pratchett claims he has a few more books in him before the darkness takes him, and I hope so. Although the Discworld books don't have an overarching plot like the Dark Tower did, I still want to read more of them. Maybe Pratchett will try to come up with an ending, but I hope not. I hope that when his mind does leave this world, it goes there, to the back of an elephant standing on some turtles (or is it the other way around?) and he becomes a living part of Discworld and for him it goes on forever.

I guess that's all anyone can hope for, whether they call it Heaven or crossing the rainbow bridge or going to the Elsewhere Bar, that it goes on forever and no one's in pain anymore. To quote Kurt Vonnegut: "everything was beautiful and nothing hurt".
(screenprint of Terry Pratchett interview)

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Since I last posted, saying I was putting Nutter to sleep, I also lost Zeebo and Onnie, two of my parrots. Zeebo died a couple of weeks after Nutter, with no warning. He was a hybrid and they don't live long--his sister was ancient at 16 and he was 15. A couple of weeks later, Onnie left me too. With no job, I can't afford necropsies, so I don't know what killed them, only that I feel very, very bad. My pet cemetery box has grown to be a pet cemetery shelf, I have so many tins of ashes. Ironically, on that same bookshelf are all my Discworld books.

181 obesity ups AD risk by 80%, and some personal stuff

Obviously this is something that concerns me greatly, as I am morbidly obese and had 2 relatives with Alzheimer's:
Obesity may boost dementia risk by up to 80%
Researchers at the Johns Hopkins Bloomberg School of Public Health have found that being obese can increase the risk of Alzheimer's disease by as much as 80 per cent.
Their analysis of published obesity and dementia prospective follow-up studies over the past two decades shows a consistent relationship between the two diseases. ...Based on a pooled analysis of their findings from 7 of the studies, baseline obesity compared to normal weight increased the risk of Alzheimer's disease by 80 percent on average.
The team further concluded that being underweight also increases the risk of dementia and its subtypes. ...from "Obesity and central obesity as risk factors for incident dementia and its subtypes: a systematic review and meta-analysis" was written by M. A. Beydoun, H. A. Beydoun and Y. Wang. (PMID: 18331422) (article screenprint)

---

80%!? 80%!! Just shoot me right now. My father was overweight until he was diagnosed, but he wasn't obese by any standards--he had a big beer belly kind of gut. He had thin arms and legs.
Supposedly just having a 1st degree relative with AD gives you a 50% chance. Increase that by 80% and I might as well invest in long term care insurance right now. Totally depressing.
I'm having a bad week, of sorts. Tuesday at 6:45 a.m. someone hit my parked car and took off, leaving it pushed 6 feet forward with almost $2,000 worth of damage. My husband saw the truck, but didn't get the plate. Yesterday we drove around in the area and guess what? Found a truck--two blocks away--of the right size, shape, color, and brand, and it had a big old hunk o' damage in the front. The police will be knocking on his door, as they've already inspected the truck and seen that the damage matches my car. Jerk.
My grandmother is being a brat. My mom invited one of my friends over to her house for Memorial Day hot dogs and hamburgers. My grandmother barely greeted her and sat all through the meal with the "puss" face on, not talking to anyone. She was angry because my mom went to the Peabody Museum to see the Mexican art exhibit there, and had lunch with me and my friend, leaving her alone. She is really back on the "you can't leave me alone" kick. My mom dealt with being a caretaker for 3 years with my dad. My grandmother doesn't need a caretaker. She doesn't want to LIVE alone, fine, but that doesn't mean my mom can never leave the house. My mom can't get a job. Hell, she can't even take a walk without my grandmother bitching. It's totally not working out, and of course my grandma's apartment and her furniture and car are all gone so there is no going back My grandmother wanted this arrangement and all she does is complain.

Monday was the 6-month anniversary of my dad's death. I did not realize it until Tuesday. I'm glad. Is that awful, to be glad I forgot to be sad on that day? I've been sad so much for him. I want to think of him in the Elsewhere Bar, hoisting up a glass, maybe with some veterans. I hate that I have to drive by the nursing home where he died every day on the way to work, but I guess that's one way to numb myself, right?
(I've got some spare time tonight, so I'm blogging like mad! Enjoy.)

151 fever & it's all about me rant

The nursing home called my mom at 2:30 last night to tell her my father's fever had spiked back up to over 104 and they HAD to bring him to the hospital (yes, the same one I told them yesterday not to bring him to!) for emergency hydration. They have no one on staff who can set an IV and couldn't find anyone to come in and put one in.
My guess is it's the MRSA. It's obviously not under control.
I was going to bring the dog up today to see him, but the dog is still sick. So my original plan was if the dog was sick, I'd go to the gym today and bring the dog tomorrow. But now I've got to go up there and find out what the hell is going on.
(now begins the rant)
Last night I went to a writing meeting for NaNo and did terrible. This is my worse year ever. I didn't even write a thousand words yesterday. I am feeling really discouraged about my life in general. I've got to stay strong, support my mother, support my grandmother. My husband works full time and goes to school so I have to be a good wifey-poo at home, and I suck at that, I'm not domestic, I don't clean or cook.
But who is supporting me? I think I've got a pretty sad life when the only people who understand me are strangers I've met online. I have one friend whose sister died of dementia in her 40's (from complications from "successful" brain tumor removal surgery when she was a child), and another whose grandmother is stage 7 with a MRSA infection, and other than that, people just don't seem to get it. And they don't want to talk about it endlessly with me, or really at all.
I'm feeling whiny and selfish and childish. My father is dying and yet I have to go home and wash the dishes and feed the cats and pay the bills while my husband plays World of Warcraft. I still have to do everything for myself as well as everything for everyone else. When does the help come, when do loving people start to support me and take care of me? Where are the offers of food so I don't have to cook (and make more dishes to wash) or go out to eat (and run up my credit cards)? There is an inverted pyramid of support going on and I am the bottom point. Eventually I am going to crack, or the weight of my responsibilities are going to drive me into the ground.
I haven't got much more left to give. I can barely drag myself out of bed in the morning. But I am selfish for asking, how dare I ask, because my MOTHER needs me, my FATHER needs me, I can't ask for help for myself when they need me. But if I go to the gym, if I go to a writing meeting, how could I do those things when my father is dying? Why am I not at his side?
I don't know, okay? I don't know anymore what to do, what to think, who to turn to. My friends have pretty much all taken off. They have their own lives and their own problems and they don't want to deal with mine. I have no brothers, no sisters, no cousins. I have a husband who has no time for me, and that's it. I have a low-paying job with no sick time and no compassionate leave. I can't take time off or I lose income, I can't rearrange my hours to make up lost time if I do leave early or take a day off.
I am drowning, I am choking, I am lost. My father is dying but if I leave work early to go to him, that's almost a hundred less dollars in my pocket. My mom's got no money left anymore to help me out because she's got to spend down to 1600 ridiculous dollars so my dad can go on Title 19 but she can't just GIVE the money away, she has to account for where it goes--she was going to buy me a new car (mine is 14 years old with 135K on it) and the lawyer said no, that wouldn't be allowed.
Everything is such a mess. There is no help for me anywhere. Kind words from strangers online, silence from so-called friends. It really is true that if you laugh the world laughs with you and if you cry you cry alone. If I dare to laugh, how could I be jolly in such a situation, when my life is a mess. Crying is understandable, but no one cares, no one wants to hear about my childish selfish problems. They say you are strong, you can do this. But my strength is gone and I can't do it anymore.

125 death is all consuming

My mom and I finally met with an elder-care lawyer yesterday for advice on how to proceed with the inevitable; putting my dad in a home, having him die, what happens to the house and my parents' life savings.
It's not pretty.
I am so ANGRY about this. My parents worked hard their whole lives, saving money when they could, making their home nice (it's no mansion, but it's a decent place, bigger than mine), only to have everything consumed by this disease and the slow way it is killing my father. It's not fair. It's not right.
It's not about me, either. Yes, I did have it in the back of my head that some day my parents would die and I'd get their house, which I could sell for a nice chunk of change for my own retirement (given my mom's family's longevity, that's truer than you'd think--my grandma's still going at 89 and my mom's barely at retirement age). Of course that would be great, not that I ever want someone to die so I can get their stuff--that's just morbid. And my parents wanted me to have everything they worked for once it wasn't necessary to them anymore.
But that's all gone now. There will never be an inheritance for me. Just documents to sign, information put into my brain that I don't want to know. I don't want to make medical decisions for my parents, I don't want know anything about living wills and medical powers of attorney. I don't want to plan and pre-pay for my parents' funerals. I want to be an ostrich with my head in the sand. I don't want to be told that once I have these powers that I can't leave the country because if I'm not available the power that I don't want in the first place will be taken from me if there's an emergency while I'm gone, and my parents' wishes won't be respected if I'm not right there to force someone to listen. So this goddamn disease is not only stealing my father's brain and life, my mother's peace of mind and her home, but my experiences swimming with sting rays in Grand Cayman and climbing pyramids in Mexico.

The cost of Alzheimer's? Everything you ever owned, everything you ever thought you would get, and things you never even thought about.

122 so sad

My mom found a piece of paper on my dad's end table. He writes himself a lot of notes--I saw one where he had written my mom's name in big letters and propped it up so he could see it. Yet he still calls her "hey." He has other ones with his address and birthday.
The note she found made her cry and when she told me about it made me cry too. If I can find out the full text I will. But basically my dad had written "My name is Bob Rizza. I am 66 years old. I can't drive a car. I can't talk. I can't remember anything." It continued with a list of other things he can't do anymore.
How can ANYONE make jokes about how when you have Alzheimer's you make new friends every day and it doesn't matter because the person with AD can't remember he has it, etc. My father knows.
How fucking sad is that note? And he wrote it to REMIND HIMSELF that he doesn't know anything. It wasn't addressed to anyone.