[auralpoison]

You know, I just came back & re-read what I wrote. I am a HUGE fucking crybaby. I need to get the fuck over it. Suck it up, buttercup. You'll live to see a better day.

[auralpoison]

I am FUCKED. FUCKED, I say.

Ya'll know I have a . . . contentious relationship with my mother. We've only spoken a handful of times in the past year. This last time, I found out she was deathly ill, so I came home to help with her care. It's only been a few days & I already want to start putting ground glass in her food.

How does a grown, fifty year old woman let herself fall so far so fast? A few years ago I melted 100+ pounds off of her, got her exercising, got her off prescription pain pills, & helped renew her self-esteem. She was a bloated, alocoholic, drug addict before I put my foot down. I whipped her into shape, she found a new man & immediately started slipping. She's right back in that place, but WORSE.

Today she couldn't get off of the toilet. Seriously. She's so fucking fat that she couldn't muster the energy to haul her beef out of the loo. I got out a hoist, wrapped it under her arms & tried to lift her, but the momentum of pulling her forward nearly brought us both down. Her boyfriend came over to help. She toppled them to the floor, we turned her over, she crawled down the hall into her bedroom where after three attempts we *finally* put her back in bed. She looked up at me & said,"You didn't expect it to be like this did you?"

"Yeah, yeah, actually, I did."

Dumbfounded, "You did?"

"Yeah. We already went through this once before, mom. I expect we'll be here again if you don't get it together."

"Oh. I'm sorry."

She says she's sorry all the fucking time, but she's not. She pulls a lot of this shit on purpose. She *knows* how to take care of herself, but her being sick gives her control. For example: Today when we called her BF, he was hanging out at the bar instead of babysitting her. To get back at him, she toddled into the kitchen to help me with dinner. Then she couldn't get up. She sat there for two hours making me feel bad because she couldn't move, even though I stayed in the kitchen so she wouldn't be left alone. She started calling him & leaving bitchy messages so he would come home. When he got here she badgered him relentlessly. "What was the last thing I said to you before you left the house? Huh? What was it?"

And don't even get me started on him. He's a big part of the reason we're in this mess. He coddles her to no end. He knew she had to watch her weight, but that didn't stop him from bringing home cookies, candy, & ice cream. Plus, he's an ignorant redneck with no class & he brays like a donkey from behind his big, ugly, yellow teeth.

Not to mention that I'm now an indentured servant. She can't clean up & he won't. It's just *assumed* that I'll clean up after everybody. Nobody asks, nobody says please. Today I cleaned two years worth of GARBAGE from the fridge. It was FILTHY. The only food left in it was the food I bought on Sunday. No 'hey, thanks for the initiative.' Just, 'why didn't you clean the crispers, too?' Because I couldn't get them out, asshole!

Then there's my grandad. I stayed up all night Saturday/Sunday morning caring for my mother. I took a two hour nap between noon & two pm Sunday. He called during it, mom said I was asleep & it prompted an impromptu lecture. He drove all the way over here to tell me that when I was living on my own I could do what I wanted, but that my mom needed me right now, so I had to coordinate my schedule with hers. No shit, Sherlock! I was awake for thirty-six hours, caught a two hour catnap, & was still fucking nicey-nicey to everybody.

Basically I am seething bucket of rage, but nobody knows it. I smile, I crack jokes, everything is lighthearted. The closest I have come to smartass-ery was tonight after dinner. She wanted an apple & some salt. I asked if she wanted a paring knife. Nothing wrong with her hands, she could cut a goddamned apple, right? She told me to just cut it into to fourths for her. I asked her if she wanted me to chew it for her, too. No sarcasm, no bitterness. But I still had to say it.

ARGH!

[hellotampon]

Oh! Totally didn't know this thread existed. I was looking for it in Working Grrls. Thanks, Sixelacat.

I just started taking care of an 87-year old woman named Dale. She has Alzheimer's, dementia, asthma, osteoporosis, and diverticular disease. At the end of this month I'm going to start working part-time at another elderly woman's house. Her name is Emma and she's physically and mentally healthy, so my job is mostly to hang out with her, cook, and do housework.

I've never done this kind of work before, and I really like it! I've even decided that I want to get a CNA/Health Aide certificate and put myself through school that way, rather than the horrid cashier job that I've had for years. I'm kinda having issues with the family member that hired me though. I was hired to work for Emma in July, but wasn't supposed to start until October 29th. Meanwhile, I got this job taking care of Dale, who lives with her son Jim. My mother takes care of Dale as well, but she also has another job with set hours, so I was hired to work on the days that my mother's at her other job. The hours at Dale's conflict with the hours I'm supposed to be working at Emma's, but it was only supposed to be like that until Jim hired a 3rd person. And he DID hire someone last week, so I thought I was all set.

But Jim is making it really difficult to get things squared away. He doesn't want to have to take care of his mother EVER, and he always ends up conning you into working 16-hour days. He's a schoolbus driver, so you need to be there at 5am when he leaves for work. In the middle of the day when he's home he always has random "stuff to do" and then when he gets home again at 5pm, he always wants you to stay till 8 or 9 so he doesn't have to put Dale to bed.

Anyway. My mother said that I could work from 5am to 2pm and Nancy, the new lady, could work from 2-9. This would solve the scheduling conflict between my jobs and Jim wouldn't have to take care of Dale at all. I'm thinking I'm going to have to get hold of Nancy and talk to her myself because it's impossible to schedule anything through Jim. For instance, I told Jim 3 weeks in advance that I have an all-day committment at school on the 18th, and he said, "Well I can talk to Nancy about it, because I hired her for this sort of thing, but I really don't know if she's going to be willing to come out here at 5 in the morning because she's not a morning person, so could you come here and work in the morning and I'll see if I can get her for the afternoon?" Or if I can't stay late to put Dale to bed because I have a class, he whines "Maybe I can get Nancy to come out for a few hours, but I don't know if she'll be willing to drive all the way out here for such a short amount of time." So I end up feeling guilty that I'm making Nancy waste gas, wake up early, and submit to my every whim, and then I talked to my mother and she said she met Nancy, and that while she prefers second shift, she's pretty easygoing.

So I still don't know what's going on! I hate being bamboozled like this, haha. I'm still working at the gas station too, and I need to get my schedules all cleared up so I know if I can afford to quit the gas station altogether.

[i_am_jan]

((((((all my caretaking sisters)))))))

[silverhalide]

Wombat--I can relate to some of what you went through--are going through. I lost my mother in a little over a year ago to a devestating brain tumor. It was awful, she was only 50 years old when she was diagnosed. She passed away when she was 52--I was 26. I was very close to her, and not a day goes by that I don't miss talking to her, her perspective, her personality. I agree, I think people really don't understand how hard the loss of a parent can be in their 20's. Especially, a long terminal illness. While she was sick I was in college in Chicago, and about the last year of her illness I was going back and forth between Chicago and Michigan. On top of this I was going to school, and not able to work that much. I felt that I was the only who could really help out, or maybe wanted to in a way. Due to this, it upset my situation financially and job-wise so I moved back in with my Dad after I graduated. I was jobless and just lost my mom, and I just recently found a good job three months ago. On top of all of this, My Dad started showing feelings for my mother's sister (my aunt) like two months after my mother died, so that has been a source of tension--and I feel like I don't have a lot of people I can talk to who can understand this situation. Also, my Dad pretty much lost his job, so there was that as well. Losing my mother has really made the family dynamics very weird, and now I am suspicious that my Aunt might move in here because she is struggling finacially. Nobody really talks about this either. I certainly need to draw the line as far as what I am comfortable with and if she moves in, I'm moving out, only I still am not in the best place financially yet for that. A lot of grief is often about how much it can really create a sort of crisis situation.

[sixelacat]

*bump* for hellotampon. A lot of busties have been caretakers, and/or have had a lot of contact with professional caretakers. It helps to scroll waaaay down first.

[wombat]

Hi, all.

Yes, we need to be free of guilt about not care-taking. I want to clarify that I'm not "blaming my parents for my failures" or something, because I succeeded in my school, jobs, and relationships to a reasonable degree in my twenties, and would see my folks now and again, and was very loyal to them -- they were not wanting to move in with me or burden me financially.

But just as I got a well-paying job, and even published some of my writing, my mom got ovarian cancer and was dying, my dad had another breakdown episode and called up my work and home and said weird things, my roommates and co-workers were jerks to me about both situations because they wanted "the power" and figured they could take advantage of me, and my father and sister conspired to take the house away from me that had been awarded to my mom in the divorce and had been left equally to my sister and me.

The amount of stress this caused made me perform poorly in the job where I had previously gotten promotions and raises and I was fired. So, at 28, it's as if they reached out from the past to knock me brutally down.

This on top of dealing with cleaning out my childhood things from the house, trying to force a sale, talking with lawyers and psychologists to find someone I could trust, and dealing with a parent's death in the face of people in their twenties who just wanted to party and who went around telling mutual friends that I didn't like them and I was a big weirdo, upset about things all the time. I think now if I talked to them, or other older people, they would realize how devastating a parent's death is. What happened to me in my late twenties doesn't happen to many people until they are in their 40s or 50s.

Yeah, I shoulda been dancing and singing my way through the days. Isn't that the normal way for a girl to react when her dad is crazy, her sister is a sleaze, and her mother dies? Gawd.

Luckily, my mom had social services to bring food, cleaning, and a cheap hospital bed, medications and nurse visits, etc. I can't imagine doing all of those things myself. Hellish.

I feel guilty for abandoning my father, he was such a sweet person in many ways, but later in his life grew mean and sleazy, and, as I said, had no sense that he should not call my workplace or roommates. I could not take him living with me or even calling or visiting, and many people I consulted supported me in that decision.

Oddly, my boyfriend's sisters are the ones that left the family and moved far away, and made sure they had careers, and not careers in the helping professions. My boyfriend is the one that was there when his mother died, and who is the guardian for his father. His father luckily had good pensions and is in a nice nursing home, but it is still sad to see his physical and mental deterioration. I made a pdf-photocopy book of his old albums, and brought them to him, and take great care to see him and bring him flowers and hugs and kisses, and, when he was well enough, took him for trips in the car to the beaches he went to as a child etc. Actually, his sisters did a lot of work as well, as far as getting him an aparttment and taking him out to dinner sometimes, and I have no intention of guilting them about anything.

Helping my guy's dad helps me feel a little better about abandoning my own. As the fact that I just can't be a masochist that way and live to serve others. I, like the men you mentioned, would refuse to do it. A long time ago I was working in a machine shop with a great tough old woman with a forties hairdo and all, and she said about that situation, well, if she chooses to be a doormat, tough for her. I've lived by that since. This was a woman who had struggled mightily through the Great Depression of the 1930s and all.

***

Finally, I feel I should apologize to doodlebug for being inadvertently clumsy and making assumptions about fibromyalgia -- I have done some research since, and I definitely understand your need to have control and definition of your own life and your own experience and handling of a difficult condition, and every situation is individual. I am sorry to have gotten defensive or resentful, because you handle things well and are honest and kind and have accomplished great things. I understand, doodle, that if you ever said "depressed" you meant it in the more colloquial and limited sense of feeling burdened in specific ways, and were not mentioning that as a diagnosis, and I am sorry I misunderstood that. It is an important distinction.

***

I worry a bit, in relation to this, about the current generation. My mom met all of the symptoms, pasted below, from headaches to um, bowels, and, you could say she felt "stressed" but doctors she saw assumed that "nerves" were the whole problem, and even I assumed that after awhile, because -- partly because women are always written off this way, because women are more burdened with stress in general, because women have less money and less social support usually -- etc. and partly because the medical research had just not progressed far enough in the 1970s to have benefitted her. Just in case this applies to any of you or to people you know:

*****

Fibromyalgia?Adapted from these Arthritis Foundation publications: Fibromyalgia brochure, Guide to Good Living with Fibromyalgia and Good Living with Fibromyalgia Workbook. 

What Is It?
Fibromyalgia (fye-bro-my-AL-gee-ah) is an arthritis-related condition that is characterized by  generalized muscular pain and fatigue. The term "fibromyalgia" means pain in the muscles, ligaments and tendons. This condition is referred to as a "syndrome" because it's a set of signs and symptoms that occur together.
Fibromyalgia is especially confusing and often misunderstood condition. Because its symptoms are quite common and laboratory  tests are generally normal, people with fibromyalgia were once told that their condition was "all in their head." However, medical studies have proven that fibromyalgia does indeed exist, and it is estimated to affect about 2 percent of the U.S. population today.

In 1990, the American College of Rheumatology, the official body of doctors who treat arthritis and related conditions, finally legitimized fibromyalgia in the medical community by presenting its criteria for diagnosing it. It is diagnosed when the you display the following symptoms:

FMNET NEWS COM
SYMPTOMS AND ASSOCIATED SYNDROMES
Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.??Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.??Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it. ??Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).??Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients. Acid reflux or gastroesophogeal reflux disease (GRED) also occurs with the same high frequency.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of FMS patients and can pose a major problem in coping for this patient group.??Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.??Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.??Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.

Coping with fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) is particularly challenging because the symptoms are invisible and chronic. A person can't simply "get over" FMS/CFS with the passage of time or wishful thinking. Fibromyalgia Network assists patients with a solution-oriented approach to handling difficult situations. Each issue features at least one "how-to" coping article on topics that many patients struggle with, such as:

• More effective, guilt-free communications with family and friends about symptoms
• Avoiding frustrations at the doctor's office, which may range from discussing symptoms to requesting specific therapies
• Handling demands on limited time
• Keeping up with job duties or household tasks without causing a flare-up
• Striving for and maintaining a better quality of life—one that makes you both happier and healthier
• How to respond to hurtful comments from others

****

Treatment mayo clinic. com
In general, treatment for fibromyalgia is with a combination of medication and self-care. The emphasis is on minimizing symptoms and improving general health.

Medications?Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
• Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Anaprox, Aleve) — in conjunction with other medications, but NSAIDs haven't proven to be effective in managing the pain in fibromyalgia when taken by themselves.
• Antidepressants. Your doctor may prescribe antidepressant medications, such as amitriptyline (Elavil), nortriptyline (Aventyl, Pamelor) or doxepin (Sinequan) to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline has also been found effective. Sertraline (Zoloft) and paroxetine (Paxil) can help if you're experiencing depression.
• Muscle relaxants. Taking the medication cyclobenzaprine (Flexeril) at bedtime may help treat muscle pain and spasms. Muscle relaxants are generally limited to short-term use.

Prescription sleeping pills, such as zolpidem (Ambien), may provide short-term benefits for some people with fibromyalgia, but doctors usually advise against long-term use of these drugs. These medications tend to work for only a short time, after which your body becomes resistant to their effects. Ultimately, using sleeping pills tends to create even more sleeping problems in many people.

Benzodiazepines may help relax muscles and promote sleep, but doctors often avoid these drugs in treating fibromyalgia. Benzodiazepines can become habit-forming, and they haven't been shown to provide long-term benefits.

Doctors don't usually recommend narcotics for treating fibromyalgia because of the potential for dependence and addiction. Corticosteroids, such as prednisone, haven't been shown to be effective in treating fibromyalgia.

Cognitive-behavioral therapy?Cognitive-behavioral therapy seeks to increase your belief in your own abilities and teaches you methods for dealing with stressful situations. Therapy can be provided via individual counseling, audiotapes or classes, and may help you manage your fibromyalgia.

Treatment programs?Interdisciplinary treatment programs may be effective in improving your symptoms, including relieving pain. These programs can combine a variety of treatments, such as relaxation techniques, biofeedback and receiving information about chronic pain. There isn't one combination that works best for everybody. Your doctor can create a program based on what works best for you.

*****

[stargazer]

do we have a thread that talks about the health care system? it would be interesting. i think what chacha and doodle say contributes to the majority of caretaking being done by women. or, even healthcare professionals being in employed by women. and we get underpaid. hello nurses!

back to the caregiving...

annelise-i'm with chacha...just start where you feel would be more comfortable for you. does your boyfriend live with you? do you rely on him to take care of you 'cause of your chronic illness? vent when you are ready in here.

[chachaheels]

Doodle, that's a wonderful intro to your report. I really hope the matter gets the attention it deserves. I can't see how such devastating abuse can actually help individuals or society, in the long run. I have a feeling that the more we can shine a spotlight on this phenomenon, the more women who are involved in exactly this kind of work will realise what's being imposed on them, because until that happens I don't think things will change (I have a feeling so many women doing this kind of work are isolated from others in general).

I hope we haven't chased off Treehugger, AuralP, anyone else who's got something to say on the matter. Annelise, I encourage you to just "start anywhere" and vent, if you want to.

[annelise]

i don't even know how to talk about my own personal worries on the subject...both because i'm chronically ill with dependence issues, and because my bf is seriously depressed (among other things), which can be a lot to contend with.

so instead i'll say that the funding cuts that chacha and doodlebug are talking about are really appalling. the report sounds great, doodlebug. it's really important to raise awareness of these issues.

[doodlebug]

Ok, I'm toddling off to bed at...4:30 in the morning. But I'm finished my report. Here is an excerpt from what I wrote, based on the discussion here! Yay for BUST!

"In recent years, the phenomenon of working women coming home to perform the majority of unpaid childcare has been popularly called 'the second shift.' The Government of BC's insistence on relying upon the unwaged work of women to alleviate the cutbacks to health care and community services has amounted to another phenomenon for women: that of 'the third shift.' By expecting women to perform for free the work funded by taxpayer dollars, the provincial government has placed a huge burden on the backs of BC's women. And in an economy that is constantly said to be 'booming,' with budget surpluses in the billions, this exploitation of women by the BC Government is shameful and indefensible."

[chachaheels]

I know it's taking place now where you are, Doodle. When it happened here I was sure we would all get a first hand look at how disastrous those cuts were to become, in a short time (and now we're really seeing the decline and the extreme rise of poverty, everywhere). A Royal Commission here just published the results of a study focused on why public health and the health care system in general failed during the SARS outbreak (which, learning from everyone I know who worked in hospitals during that time, was actually very minor, but super hyped--which caused massive abuse of the (mostly female) workers in hospitals...) and the conclusion was that the health care system was so decimated by these cuts and so many support staff jobs were eliminated (the staff which helps the nursing teams by making sure beds are cleaned, supplies are stocked, patients are looked after re meals, etc.) and so many nursing jobs were eliminated that basically you had a small number of nurses and technicians doing all the housekeeping and all the nursing work, shift upon shift upon shift. Women to the rescue again, huh? For a fraction of the pay, with no time for their own health care, rest, or their own family concerns. Again and again it's quite clear that the neo-conservative governments in Canada intend to shift quite a lot of work down to women to do, with little or no pay, whatsoever. Eventually, that alone will cause the entire economy to cannibalize itself, but what the hell, right? For now, it's immensely profitable if they shift the income that would have stayed in the social network from something like state-owned liquor stores and put it right into the gaping, deep, and magnetic pockets of their own (and their friends') bank accounts.

In the meantime, more and more women are spending more and more of their lives picking up the slack. And you're also right about another thing: the only stories I seem to see documenting this change are usually focused on a man who is left to look after an aging mother, and never on the multitudes of women who are doing it. It's a real problem and a massive effort is being made to make sure it isn't being brought to light.

Part of it is that women know the situation is really unfair but so many are willing to take on the responsibility anyway; I've actually known men, who, faced with the same situation, found it much easier to say "no" to the duty. I'm counting among these men a good friend, my brother, and a cousin among my immediate circle--all with schedules and jobs which would have accomodated them to a certain extent, and all with the means which would have made access to supports possible. In my Aunt's case, my female cousin gave up her income and her home to look after my aunt full time, but her brother has only taken part on a remote level (he sees her once in a while). He considers himself busy with his relationship, he owns his own house, and he has work at a very lucrative job (which is seasonal, by the way) when he can. Not only does he not feel like he's left all the responsibility to his sister, he refuses to help her out by contributing financially while she's looking after mum, and even begrudges her access to his mom's house (he and his sister are part owners--my cousin's moved into the house because she could no longer afford to pay rent and commute back and forth to look after her mother there). I know he's just one example, but he is rather like the norm out there. It seems to me that we're much more socialized to accept this responsibility where men feel as though their "own" families and lives come first.

[doodlebug]

chacha, we are experiencing those same cuts in my province now. I am in the middle of writing a report about cutbacks, which includes details about the burden of health and community services falling onto the unwaged backs of women.

It is truly shameful that our governments refuse to understand that they they can no longer rely on the slavery of women to do the work funded by taxpayers. Our provincial government is raking in surpluses in the BILLIONS. I am crunching the numbers right now. $92 million, they cut from social services, and now they've got a surplus of $3.6 billion (and you know that's underestimated). Not only have they privatized liquor stores, they just announced they'll be subsidizing them with enough money to have funded all the women's centres in the province for 11.5 years. Women on welfare are getting less now than they got when I started doing this work 11 years ago. And WHO is picking up the work that still needs to get done? Women. The "sandwich generation" is not just an article in McCall's.

It used to be common to say women who worked outside the home and then came home to childrearing duties were doing the "second shift." I think now we are seeing women forced to pull the "third shift," in terms of continuing to prop up health care and community services with their own personal time and volunteer time.

Ooh, damn, I'm putting that in my report.

I remember working with a group trying to get a news story out there, a few years ago. It was about family members providing care to relatives, and having no choice but to do it themselves, because of health care cuts. The news always likes "real life" stories, of course...so you know what finally made them pick up the story? When the "real life" person willing to come forward was a man looking after his ailing wife. And he was ALL OVER the local news. But women have been doing this work all the time, all over the town, for years and years, unrecognized - assumed as if it is our natural, god-given duty to shovel up after everyone and everything.

Anyway. I shouldn't be in here. I should be writing!

[knorl05]

*wow* yuefie, you are the epitome of a strong woman! i couldnt imagine going my whole life taking care of others to that degree, while still trying to maintain a 'normal' life. i hope things have settled down for you as of late. i'm sorry that your mom passed, and i hope you know you really made the quality of her life so much better. -hugs- to you and thanks for sharing your story

(--oh--- because i'm such a dork. i feel the need to say, i dont mean to negate the struggles or hardships of other strong busties by the previous comment!)

[yuefie]

((((stargazer))))) I could just squeeze you for starting this thread.

(((((Aural))))) you rock even harder than I ever imagined. seriously tho'.

((((doodle)))) (((((chacha)))) (((((treehugger)))) ((((sinfullysmitten)))) ((((knorlo)))) ((((wombat)))) you all do.

I've been debating on whether or not to throw my hat in the ring here. Sometimes I feel like it's uncool of me to discuss it, but I do realize that's untrue. It just makes me feel *selfish* if I complain or sound like I'm complaining. But holding it in is not healthy either. I realize that this is a place we can all support one another, and I must say that sure sounds good to me. So... warning: long, rambly post ahead.

Care-giving is indeed a very difficult thing. It is both my livelihood and who I am in my family. I've always been the one taking care of everyone else. My mom was sick and in and out of the hospital for most of my life. when she was not in the hospital, it was my brother. He developed hydrocephalus when he was only 2 yrs old and had to undergo brain surgery and endure a very long recovery. Then there were the frequent hospitalizations for seizures and high fevers. Between him and mom I spent more time visiting hospitals then anything, save for attending school. My mothers family was never very supportive of us, so a great deal of responsibility fell to me, being the eldest child. At sixteen, instead of hanging out with friends or giggling about which boy I would like to go to a dance with, I was grocery shopping and forging my mom's signature on checks to make the bills were paid in time. If mom needed to stay in the hospital for a few days to get her lungs clear I would be the one to make sure my brother had his five different medications, was fed, bathed, had his homework done and made it to his bus on time for school. All while maintaining my own grades and keeping the house clean. I believe this to have much to do with why I felt like I was an adult and ready to be married at 18. My dad was always around, but was more like a good time weekend dad than an authority figure. That had much to do with my mom's strong nature and my dad's weak one. I love my dad, but mom was the ruler of my world. When I was 19, my dad suddenly got very sick. So sick he could no longer work. His memory was awful and he had frequent seizures. They could not give us a diagnosis, only "epilepsy and dementia, etiology unknown". My dad was exhibiting symptoms matching Alzheimer's and was only 48. The same age my mom was when she finally passed away. I thought I should take care of my dad seeing as I am his only family besides his brother who could give two shits less what's going on if it doesn't involve something being done for him. So I moved him in with my husband and I, while living next door to my mom and brother so I could still help take care of them too. I also, in my sheer brilliance, took custody of my two yr old cousin who's mom was severely neglecting her. I guess I thought I was super-girl or something. I took care of my cousin for about a year and dad for two years, until one day he freaked out on me and I was so afraid I had to call the police. It was a reaction to a new medication, but that was enough for me to decide he needed more care than I could provide. It was very hard, and I still suffer tremendous guilt, but I had to find someplace for him. It was around this time, about February of 94, that my mom took a turn for the worse and had to have emergency surgery resulting in her getting a tracheotomy. At this time I dropped out of all my classes on child development to be moms full time caregiver. This caused much strain on my relationship and we divorced in August 95. It was then that I found a house and moved us all, mom, brother and myself, in to it. When my mom had recovered and adjusted enough to her new circumstances, I returned to my classes. I took on a job at a preschool, working my way up to teacher. I spent most of time working or at home, care giving. Eventually my mom began to do very well to the point of her telling me I needn't live with her any longer. She wanted me to get out and live, so I did. I never lived further than a five minute drive from her though. In 97 my brother had graduated high school, been seizure free for five years and was doing very well. Sadly, mom was not. She was back to being in and out of the hospital frequently. I started spending most of time at her house or at the hospital with her. We had a big scare and almost lost her. It was then that I quit my job and moved back in to take care of her full time. This lasted until she passed away in 2000. Around the time of my mom's death, my brother began having seizures again. So I persuaded him to move in with me. He's lived with me on and off, but we both decided it's best for both of us, if we just stay close. I sleep better at night knowing he is okay and I think he does also. Codependent? You bet. But it's the only way I know how to be. I still fret about not being the one caring for my dad, but I know I *really* can't. So I try to spend as much time with him as I can and be as involved in his care as I can manage. My current job, naturally, has to do with care giving. While I am not a direct care provider for someone as ill as my mother was, I am still, and always will be a caregiver.

I know the games you all speak of. All too well. For me, those come from other family members. I've learned to distance myself so I don't get caught up in them again. Fortunately for me, most of my family has sinced moved out of state. The ones I have left here keep the BS to a minumum! But there was day I fell for every song and dance and would take the shirt off my own back for them, in their drugged out/drunken stupors. Thank the gods I managed to pull my head outta my ass and I was blessed that it wasn't my own parents playing those games. That is some unfair shit, yo! My sis, she suffers that crap with her birth-mom all the time. The phone calls & messages laced with guilt and contempt. The manipulation, the calls from other family asking her to please check on her *mother* because her phone has been off the hook or the phone calls from the shrink saying "what your mother needs is your support". Sometimes I wish that woman would succeed in her half hearted attempts or, more truthfully, her cries for attention. Then I feel like an evil person for even thinking that. But hell, why does my sis get punished because her birth mom is whacko?

[knorl05]

omy! i love it. i just found this thread. cant wait to read through it and share my own stories.

[wombat]

I am loving chachaheels and auralpoison. Big loves! Suppot to stargazer, treehugger and doodlebug as well! and sinfully smitten

Yeah, and I gotta say, in my family, our lives revolved around our dads never-entirely named dementia, and my mom's stress about it, which made her lash out, (possible fibromyalgia for her? and it is REALLY COOL they have named it and legitimized it since 1990, but that wasn't soon enough to help my mom. I am truly happy this generation does not get as much doubt and stigma and gets a positive -- kinda -- treatment and prognosis).

Endless tension, petty bickering, criticism, and control in our household. "You should never MENTION this."

"You should never speak about it to others"

Resulting in our isolation.

Having the money go wildly up and down. Having to learn and do all the same things the other kids did in our affluent, competitive suburb, in front of them, with them, with no supplies, encouragement or other resources, trying to not feel embarrassed.

I left home when I was 17, but I had to leave my family entirely behind when I turned thirty, because they dragged me down and no guilt or love was going to change it. They would wreck things with my roommates and co-workers.

Now, if I complain to other adults about making sure I avoid people with chronic illnesses, be they mental or physical, ***unless**** they are motivated to find cures, they do as well as possible, they are nice to people, and they are not mean, domineering etc to me expecting me to put up with it because "you should feel guilty cause so and so is just ILL when they do that" and can always talk about it honestly and not go "hush hush" -- I am accused of being a "bad" person, with no compassion, etc.

Ever see the little pins on peoples clothes after a blood drive: I gave.

Well, that's how I feel.

I gave till I can't give any more. I have to have something of myself.

People that try to guilt me into enabling illness with concurrent domination of the well -- all I can say is they must be "first generation" of their families. The way my parents were with my grand parents.

We're second generation, and we know how much it sucks.

Casual observers who have never had it in their families and have never had their money and future threatened or harmed by it can try guilt-manipulation, shame shame, charity, understanding all they freaking want, and enable the sadistic bully to hurt others.

But, when a social worker tried to guilt me into seeing my father, I cut off all contact with both.

Way to be self-righteous when it's just a job you leave at the end of the night, and you will only do it for a few years, probably, and you have no idea of what's really involved, d00000d. You probably didn't have to work your ass off through school and graduate school, either. There was no way I could even DO graduate school.

At least my parents were not violent, we lived in the same house growing up, they had some good points like the love of gardening, the woods, books, animals, camping, the ocean etc., so I can take the good that was there and move on.

But I feel very streetwise and experienced and get sick of people that don't know what they are talking about trying to make me take another adult's shit. Shit and games from a total stranger! They can hurt themselves if they want to, with their fluffy naievete or their odd little neurotic feelings of secondhand revenge, but me, I will walk away and they can't stop me.

I just thank god (truly) that I did not inherit my father's mental illness or my mother's physical illness and that I managed to be okay, and that I do have knowledge and compassion for the "imperfect" people in my current life that really are honest and tough and fight it off and talk about it, we just have fun times together and tell each other good things about each other, and that is freaking awesome.

/end rant o the day!

[chachaheels]

AuralP, you are amazing. No one could blame you for that resentment and anger, and I bet you felt it after telling yourself a million times that your mom's behaviour wasn't all personal, either. Caregiving is really, really hard work and it does hurt to do it.

It used to shock me when people would tell me they looked after their ailing parents and fantasized about/actually carried out plans to euthanize them, more than one of them for reasons that had more to do with finances than anything else (the "why" usually depends on the area the patient lives in, ironically--hate to say it but many people were terrified they'd lose their ability to pay for their expensive cars, huge homes and second mortgages because they'd have to quit working or spend their money on an ailing parent). Many people carry around a huge guilt because they cannot bring themselves to carry out their loved one's request to be euthanized. At least one person who's come to me for cancer treatment ended up having the disease after a being pressed into looking after a close family member who suffered from a traumatic health change--a stroke, a car accident which left the victim paralyzed and furious, or a case of alzheimer's suddenly becoming full blown. It is a massive burden, usually put on someone who isn't in a position to request and gain support, isn't "trained" in any way other than they are able bodied and feel a responsibility to provide care, and isn't paid to do it either.

In 1996 in the province where I live, the provincial government made huge changes in healthcare provisions which directly impacted people in need of home care and their families. They cut off all kinds of support institutions, such as access to personal care workers who were subsidized to provide care, therapists who would come to offer treatment which the caregiver wasn't trained to provide, people who would come on a repeat basis to offer house cleaning services for care givers, or even just "a break" of a number of hours a week. When all of the funding for those services was pulled, it was done with the idea that women would simply take on the unpaid work of looking after their aging parents or spouses who've been put into the position where they needed round the clock care and supervision. It was assumed that women did this traditionally, and they wouldn't have much choice anyway, so they could balance their budgets on these women's backs. And as a result, a huge number of women have been going through this with little help and support and no social back up to offer any kind of relief. This is huge issue for women that's going to become even bigger. Doodle's absolutely right about not feeling guilt for not choosing to provide the care--we do live in a wealthy society and there is no reason why this work should have to fall on women, who are once again expected to provide it free of charge. It really bothers me that our health as women is considered negligible in the whole scheme of economics, when so much of what we do in our society is unpaid already.

And that's my rant about it.

[stargazer]

(((auralpoison))) i'm glad you were able to get that off your chest. wow. it is amazing all of the stuff you went through with your mom & gran. amazing. caretaking takes a toll on people emotionally and physically.

(((sinfullysmitten))) uh, games. i hope you hear from your mom soon. i know about the worrying feeling too much.

co-dependency is a bitch. my father is an alcoholic. after not speaking to him since i was 23 (i'm now 31), i sent him a christmas card. surprisingly, he sent me one back. strangely, my father lives in the same town as my mom and stepdad. my mom will occasionally see him at the grocery store. he won't even ask about me. he has too much damn maschimo pride. so, if anything happens, it will be me reaching out to him. just like i have since childhood. i don't have a dad, but a child. it is stuff to take care of parents when they are ill.

treehugger~i know you've been hit with alot of feedback. i hope you are doing well.

[auralpoison]

The games, the games! Almost as hard as a game of Othello!

I do it, too. It's the least path of resistance.