Jan 5 2007, 09:04 PM
so, i started a thread for place for Busties to seek support, advice, and a place to vent if you are a caregiver or have a loved one/friend/family member/SO/partner/spouse dealing with an illness of any kind.
Jan 5 2007, 10:47 PM
Where was this a few years ago?
I took care of my ingrate mother for four years after my dad died. It was hell.
Jan 6 2007, 07:15 AM
Whenever I go to visit my mom, I think I should bring her to live with me. She has alzheimers and is getting to the point where she's pretty confused all the time. But I don't know if I'm just seeing her at her worst, because when I'm there, of course, her routine gets disrupted.
But I'm looking forward to some insight from Busties, on the possibility. I don't know if I could handle the responsibility, especially since I don't have a partner living with me.
Jan 6 2007, 09:10 AM
Does she live on her own, Treehugger? It is really, really hard to look after someone with alzheimer's, even if you have a partner to help you. I'm looking after my mom, who experiences some difficulty with memory and mobility, but generally she just needs company and attention when she's got appointments to keep, so she isn't much of a demand on my time or resources (she's got her quirks, but she's really just old, nothing more). Her sister, on the other hand, has advanced alzheimer's disease and my cousin and her partner had severe difficulties looking after her, especially when she exhibited some of the more extreme forms of the condition (restlessness and wandering around in the neighbourhood; violent delusions that her husband was trying to kill her, exhibiting violent behaviour to people, such as kids she'd encounter in the neighbourhood whenever she went wandering).
When she was in these violent states she often had to be physically restrained from hurting my uncle, because she'd go and find a knife and try to stab him with it, in her fear. He tried his best, and my cousin and her partner also helped with looking after her with him, but it was still really difficult. It is so hard to be around someone 100% of the time if you've got other responsibilities, like work or other family members who need your attention, and in my aunt's case I know her increasing illness really hurt my uncle emotionally as well. He wasn't in the best of health himself, but he really hated being terrified of her, and not knowing when she'd suddenly feel threatened enough by his presence that she might act on her fear. My cousin had to quit her job to be near her mom and dad instead; finally, she and her partner ended up moving out of their own home and into her mom's home because it took too much time to commute back and forth between work and the house and then their home. My uncle died last year, and my aunt went into a nursing care facility full time; now my cousin and her partner see my aunt every day but they don't live with her anymore. It just became impossible for them to look after her full time in the home anymore.
There are other factors involved that are immensely stressful. Legally, you have to arrange for power of attorney to be transferred to you, or granted to someone else your mother would wish to look after her affairs. This means hiring a lawyer, drawing up papers, contacting her doctors, financial institutions she's been dealing with, anyone who has any kind of binding arrangement with her (regarding her housing, money and investments, contracts for service provision, etc). This brings up all kinds of issues with other family members that you've got to be prepared to contend with, and it can sometimes get very difficult there. You might want to make provisions for her to receive support care if you take her in with you, so you get some extra help looking after her, and if this is the case, depending on where you live, you may have to deal with an accountant to arrange her financial affairs so that she doesn't have to lose everything in order to pay for this. Where I live, when you make these kinds of arrangements you should be entitled to arrange for their payment via your parent's monthly pension, but sometimes an institution will want you to liquidate your parent's assets to provide payment as well--that's often impossible to do, particularly if there is a spouse who still needs those assets. There are ways around this! But you have to find out what has to be done to protect your mom, and again that may involve hiring an accountant or lawyer to help you with any changes you have to make. It's a lot of work that can't be put off and it's a real disruption in your life, not just at the beginning but also as you go on with the work of looking after your mom.
It always falls on the girls to look after the ailing parents, but if you have siblings who could share in the work it would be good to find out before undertaking any of these changes what they are willing to do to help--financially, you won't be free to work as often as you want to; physically, it helps to have someone be there with you, if not to at least give you a bit of a break if you need to be "spelled off". A lot of the changes she may go through may have a personal impact on you, and as much as you know her behaviour has nothing to do with you personally, the way she acts on those impulses can definitely erode your own mental and emotional health, so you need someone to give you a lot of support there as well. You need someone to help you with the extra financial need you'll incur as well as the need for rest and support you'll encounter. It doesn't have to be family, but if they are there and they can help, do get them involved and hold them to their committment as well. My aunt has been sick with Alzheimer's for over 5 years now, and she may live quite a while yet. It's impossible to foresee what kind of changes you'll need to make in the future as your mother goes on, but you have to know that it will take a huge amount of your time and effort.
Have to quickly tell you another thing: my husband's grandmother started to exhibit signs of alzheimer's in her 70's--all the ones that are considered common, such as the restlessness, the loss of memory, the delusionary behaviour about persecution or of suspiciousness, etc. Her doctors told her family to move her to a home where she could get round the clock care...and it was there that another doctor realized that she'd been misdiagnosed with Alzheimer's, that she actually had a tumour in the brain which was creating the symptoms she was exhibiting. That Dr. arranged for her to have a surgery to remove the tumour, and when she came out of it, she was her old self. She moved back home and lived well into her 90's, when she died with full intellectual and mental faculties, no sign of any of the symptoms she'd exhibited before. I'm putting this out there on the hope that there might be a chance she was misdiagnosed, and that it often pays to have a second opinion if it means something can be done to help the patient restore her health. There isn't much to be done, in conventional medicine, but alternatives like homeopathy can often help particularly if there hasn't been a lot of drug use or surgery in the case. Also check out any possibilities for treatments such as Chelation, which is often practiced by conventional medical doctors now--it can make a huge difference in your mother's health. I always say, try everything you can, if you can.
Sorry for such a long post, and I hope I didn't put you off with it. Wish you all the best in this, it's tough and I do hope you'll have as much help and support as you can find, whatever you choose to do.
Jan 6 2007, 04:12 PM
No, I'm not put off by a lengthy post.
She DOES have a brain tumor but it's been diagnosed as being unrelated (it's a very slow growing one that affected her hearing...pressing on the auditory nerve? Something like that. She's on medication for the Alz. She also has macular degeneration which makes things worse.
My older brother has power of attorney...he already takes care of her checkbook and stuff. The deal is, he lives in Colorado and none of the rest of the family does. She doesn't want to go live with HIM because she'd be too far away from the rest of the family. But I sort of suspect that if I asked, she'd be willing to come live with me. She'd be closer to the rest of the family, with me.
I live alone though, and work full time. I feel like, right now, what she needs is somebody there in the evenings and overnight. I think she's okay during the days.
But, you're right, it won't be that way forever.
Dad's gone; she lives in the house alone right now. She's got a HUD loan that makes things complicated. We saw an attorney a couple years ago when she first was diagnosed and (I'm not very good at these things) but I think the house is basically reverting to me and my brothers names....but she has full rights to it.
Part of me thinks she could come live with me oh, maybe a year or so...until it got to the point I couldn't take care of her; then maybe assisted living? I dunno.
It's very confusing and troubling to me. I saw her over Christmas and found myself caretaking quite a bit. I had to give her a bath...
(not to say she doesn't get baths when I'm not there; she has nurses come in and one of them gives her a bath twice a week. But she missed a couple because she went to a different town over christmas).
It's weird taking on a mother role, with your mother.
Jan 6 2007, 04:28 PM
treehugger~i worked with many alz. patients. the hardest part was to see the stress family members went under taking care of their loved ones. chacha made alot of good points. are there alot of levels in your mom's home? does she have stairs? it sounds like safety is a concern, which makes sense. i don't know if there are senior living centers near you. many allow seniors to live independently, but offer other amenities. plus, there is other recreation. or assisted living. there are different levels of assisted living depending on your mom's level of care. i'm sure any decisions made in your mother's care would need to be discussed with your family.
Jan 6 2007, 08:11 PM
Hey treehugger. (((((treehugger)))))
My dad was senile during his last years. We were never sure if it was a combo of Alzheimer's and Parkinson's, or just the product of spending most of his life drinking...or both; there is some thought that alcoholism and Alzheimer's may be connected. Anyway, that's not my point!
My stepmother had to step away from all paid work outside the home to look after my father full-time. He couldn't be trusted alone at home - he reached the point where he would, for example, set fire to things in the ashtrays...not out of malice, but out of childish curiosity! They could only get coverage for a home support worker to come in twice a week, for a half an hour each time. The worker would not even help with stuff like lifting my dad, or changing the bedding when he soiled it, or getting him bathed. My stepmother did all that herself, day in and day out. It is very much like having a child at home full-time - except one who is very big and heavy, and who may be rebellious due to consciousness of his/her rights over you (as an adult and a parent/spouse) from time to time. Also, not to put too fine a point on it, the lack of safety in the average home can be a huge, huge problem for people with mental confusion and mobility issues...my father tripped on a carpet and broke his hip in his own living room...in the hospital, he got pneumonia and never came home.
Looking after an ailing parent full-time is a lot of work. I've known a lot of women who've had to give up huge chunks of their lives to do it...I met a number of those women through the women's centre. In the cases of single adult women, a good number of them had to give up or reduce paid hours in high-paying jobs and careers to do this care work. Many wound up taking on low-paid work (often home-based), or were dependent on public assistance (but only if they qualified, which was only sometimes), or living off savings and/or credit...or some combination thereof.
Anyway, chacha has said a lot of what I would say, so I won't repeat it. Not trying to talk you out of looking after your mom, but I hope you don't feel guilty if you don't take her into your home. We live in a wealthy, medically-advanced society, and caring for the ailing should not have to automatically fall on the backs of unwaged women. I realize sometimes there's no choice, but if there are other options, please don't feel bad about taking advantage of them.
Is there a local Alzheimer's society or senior's organization that might have a counsellor you could talk with? We have an Alzheimer's society in my small town, so I think they must be just about everywhere. Anyway, they can provide a lot of support and information about your options.
Good luck, treehugger.
Jan 7 2007, 01:10 AM
Crazy long post ahead with much bitterness, resentment, & anger.
Wow. It's so hard to deal with somebody going through dementia. I worked as a nutritional aide at a nursing home one summer in HS. It made me sad to see how families would just dump an elder, but I understood why eventually. It takes such a toll on family life/financials/emotions when grandma has to be restrained so she won't fling poo, wander away from home, or start a fire. Professional care is needed, but sooooo expensive that a lot of families can't handle it. And when people can't afford it/mentally wrap their heads around it, you hear on the news about the authorities finding a malnourished 85 year old grandparent wasting away in their own filth.
My situations were completely different than most of yours. First my mom's recovery/rehab & then my Gran died of cancer fairly quickly.
This is going to be a bitter, resentful diatribe, but I need to get it out, so if you wanna skip it, please do.
My mom was a pill fiend & was (is) an alcoholic. After my father passed things got worse with her. She weighed a good three hundred fifty pounds, got no exercise, lived on junk food/pills/booze/pot. I visited once & found her in the full throws of an overdose in the middle of the night & I couldn't wake her. When I asked her what she had taken, she of course lied to me. This happened several times because she would drink/get so stoned that she couldn't remember when she'd taken her last dosage & would wind up quadrupling up on things like Soma, amytryptiline, etc. She had about eight diff prescriptions for hardcore pharmaceuticals that she took willnilly & had almost unlimited access to because she had a junkie friend that enabled her so she could get her cut of the drugs. Even if I doled the meds out, she'd have them hidden in her socks, jewelry box, old purses, the car, etc. She even kiped the antidepressants that were prescribed to the DOG! I quit my job & moved home for two months to take care of her after she was so fucked up one night she fell into the bathtub & crushed her left arm/hand. She denied being drunk/drugged, insisted she'd only had a few drinks & smoked a bowl. Which was bullshit if her tox screen was even close to being correct. At that point, I cut her enabler off at the knees & because I was there she had zero access. The woman was very spiteful/manipulative, but I wasn't afraid of her. She sent letters, cards, cookies, flowers, etc & I had them all sent back. Anyway, I cared for my mom full time after I cut off & completely controlled the drug flow. I bathed her, clothed her, hauled her out of bed, & on more than one occasion had to stick my fingers up her ass to administer suppositories. I had to go to the bathroom with her because she was so fat that she couldn't pull her pants up/down without assistance. I washed her pussy. I had to take her to the ER about four times because she was so overweight that the cast on her arm would slip off because it had nothing to hold on to & it put her in excrutiating pain. At that point I said fuck it & moved her to live with me in civilization, which scared the hell out of her, but she got decent medical care for a change. We found her an AMAZING ortho who basically made her arm/hand functional except for two fingers on her non-dominant hand. After that, she had to have surgery on her gall bladder because she had a hernia that was essentially a third breast. Ordinarily this is something that requires laproscopic surgery, but she'd let it go for so long that it became invasive. Once she had healed from that I realized that I didn't want to spend the rest of my life taking care of her when she wasn't even fifty & I was only twenty-eight. Thus began a strict regimen of diet & exercise. I cut down on her booze & pot (The only things I still allowed her in moderation.) & took complete control of her diet. We did a sort of South Beach/Zone/Atkins thing that stressed good fats, lean proteins, whole grains, & veg, veg, veg. I took her from Cheetos, cereal, & Coca Cola meals. I cooked fresh, organic everything & made it palatable to her sensitive stomach. I made her walk her own dog & got her signed up at Curves even though I disagree with their political agenda. I made her cry once over eating a piece of bread, but it was for her own good. Once she'd lost enough weight, I started on her self-esteem. She wore Roaman's 5X pup tents & *stretch pants*. I took her to a Lane Bryant & insisted that she buy some fashionable clothes. It sounds dumb, but if you *look* pretty, you feel pretty. She headed straight for the stretch pants, but I cut her off, sat her down, & found many garments in the hippy dippy chic she liked. After two years she felt normal, human, & attractive again. She found herself an ignorant redneclk to do all things for her that I refused to do. She wanted us to go back to being mother & daughter, when she'd already ceded me the mother role to me & tried to dictate over my life like she was my mommy again. Not that she was much of a mommy to begin with. This is when my grandma got sick.
Some backstory: Undertsand that my Gran was a complete OCD control freak (She lived in a place I like to call Grandma Land. Everybody was rich, white, & Republican & Ozzie & Harriet were alive & well. In otherwords, a completely alternate reality.) that had insisted on taking care of her second ailing husband no matter what. He had been an incredibly vibrant, amzing person that had led a life that blew me away. He'd typed the screenplay for the Hollywood film Mr Roberts because he'd been there, was a founding member of the Ancient Astronauts & had seen Machu Pichu & the Nazca Lines, & was an all around a kick-ass guy. I had my issues with him because was in fact, a dirty old man, but I loved him nonetheless. Old age did not do him right. They had him circumsized because he could no longer take care of his own penis. Gran drug him to the Mayo clinic, etc, etc, etc. They went to a Chinese herbalist that prescribed some $40 an ounce tea that was supposed to save his life. She was deeply, deeply resentful & angry at him for getting sick & that she had to take care of him. Gran grasped at straws & was just plain MEAN to him. It made me feel bad, so I acted as a facillitator, no matter how mad she got at me. The guy could only take one pleasure in his life: smoking. My gran thought that if he just quit smoking, he'd be fine & live forever. We almost came to fisticuffs when I took him out for a smoke the day before he died. "He's gonna die! Let him smoke!" She wouldn't let me throw out the Chinese tea even after two weeks after he died when it had an iridescent sheen over the top. Denial isn't just a river in Egypt.
Then she got sick. My mom, my mentally challenged auntie, I took shifts (My auntie couldn't last more than a week, neither could my mom. To this day, my mom insists that she took primary care even while she was off fucking her white trash boyfriend & I was changing Gran's colostomy bag.) care of her. I almost think my Gran was so angry & unhappy that she willed it to be so. She *wanted* to be sick so that somebody would finally take care of her. She was MEAN. She got off on being mean. "That nurse told me I couldn't have such & such & I made her feel BAD," delivered with great relish. Often. We'd take her out to dinner & she'd abuse the servers to the point that I'd slip 'em a twenty when we left. MEAN-NESS. She spent her end days watching Fox news & getting her war on. By the time she'd died, she'd been dead for months to me. It was just routine. I had tried to keep her comfortable, but no go. Keep the bitch off my back & wait for her to die because that's what she wants. She felt she had nothing to live for, no matter how much we tried to disabuse her of the notion. In the end she begged me to shoot her in the head. Her elder care nurse helped her along I think with an extra dose of morphine.
Jan 7 2007, 01:24 AM
My mom is going through a divorce [after being married 25 years]. She became an alcoholic and abused prescription drugs a few years back, and basically became a totally different person than who my dad had married.
In the past two years, she has attempted suicide 4-5 times by trying to OD on her prescription drugs. She has been to hell and back several times over this past year, and at first, I wouldn't go with her. And then, I realized how much I loved her and wanted to *try* to take care of her, so I helped her find a place to live [after she was kicked out from my dad's house and after being kicked out of friends houses as well]. Even though she has been court ordered not to drink and to attend treatment, she still drinks, she's still miserable, and I have realized there is not a damn thing I can do to help.
It has sucked the complete utter life out me me this past year.
I don't know what to do anymore. I've become numb in a way.
And I've been trying to call her all day today, but she hasn't answered, which means a] she's passed out, b] so distraught she can't talk, or c] who knows.
Jan 7 2007, 02:03 AM
Sinfully, I PM'd you. You need me, I'm here. Fer reals. You need to talk at three am? I'll get the fuck up if I hear the phone.
My mom plays this game where I have to call five diif people to get her to call me back & inevitabley I have to have somebody go to the house to get her to speak with me.
Voice of reason.
Jan 7 2007, 02:12 AM
Ah yes, games!!!! I can see right thru my mom when she's plays them, so I just play along with her, to avoid any unessessary drama/fighting that would add to the already tumultous[sp?] ordeal. *sigh*
Jan 7 2007, 02:16 AM
The games, the games! Almost as hard as a game of Othello!
I do it, too. It's the least path of resistance.
Jan 7 2007, 08:15 PM
(((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.
Jan 9 2007, 07:48 AM
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.
Jan 9 2007, 09:53 AM
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!
Jan 9 2007, 10:53 AM
omy! i love it. i just found this thread.
cant wait to read through it and share my own stories.
Jan 9 2007, 01:02 PM
((((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?
Jan 10 2007, 12:11 AM
*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!)
Jan 10 2007, 03:05 AM
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!
Jan 10 2007, 05:58 AM
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.
Jan 10 2007, 06:01 AM
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."
Jan 10 2007, 06:11 PM
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.
Jan 10 2007, 08:55 PM
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.
Jan 10 2007, 09:17 PM
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.
Jan 11 2007, 08:13 AM
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.
Sep 23 2007, 02:46 PM
*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.
Sep 26 2007, 03:10 PM
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.
Oct 5 2007, 02:50 PM
((((((all my caretaking sisters)))))))
Oct 7 2007, 10:33 AM
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.
Nov 12 2007, 10:05 PM
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.
Nov 12 2007, 10:31 PM
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.
Nov 12 2007, 10:56 PM
((((ap)))) this space is for support and venting, which you did. you are not a crybaby.
Nov 13 2007, 03:01 AM
Thanks Yuefie. I still feel weak, though.
A line has been drawn in the sand. Since I've been here, my mom's creepy-ass BF has been staying at his own place. Which I thought was dumb. He LIVES here. I'm thirty-two yrs old, I know what live-in slap & tickle is like. So he stayed tonight. BUT. BUT. She started bellering a bit ago & had me let out her dog. After five min or so, she started bellering for the BF cos she was stuck on the loo again. I did not know this, & went to fetch said animal. I almost saw him nekkid. It took a bit of convincing to get the dog in, my mom was hollering the whole time for BF to help. He couldn't get out of bed because I was in eye sight of his johnson. It happened again a short time later. Is it wrong for me to demand that he wear shorts to bed? I mean, I usually sleep raw myself, but out of respect, I sleep clothed here. Is it too much to ask that he sleep in some draws? I do not want to see redneck dick. I think it's only fair . . .
Nov 13 2007, 10:34 AM
Short answer AP: Yes, he should put on some boxers, preferably PJ bottoms or similar. I hate wearing a dressing gown, but I will when people visit. Common courtesy.
Longer answer: I'm sorry for what sounds like a stressful situation, to say the least. You may have covered this somewhere else, but isn't there anyone who can help you look after your mum, on an ongoing basis? I can see why you may not want to leave her in the hands of the redneck BF, but honestly, it doesn't seem fair this all lands on you: you have your life too.
Sorry if the above is too blunt; I don't really have experience of caregiving *knocks wood* so I don't really have a useful perspective. You're not a crybaby though; in your shoes I'd probably already be out the door--even if temporarily.
Nov 13 2007, 01:13 PM
I drank last night. A lot. I wasn't hammered like the redneck was, but I wasn't feeling any pain. Argued with HB over the net about things for several hours before I collapsed at five am.
I'm it, yo. Only child. My grans are in their seventies & my one auntie is a complete nutter. She comes once a week or so to clean, but she mostly just moves shit around & acts crazy. We could hire a nurse, but it'd be a waste of funds. My mom is VERY vain. She'd be deeply embarrassed & wouldn't cooperate with a stranger, she barely cooperates with us. EG: Her hair is a rat's nest, I'm pretty sure we're going to have to cut out hunks from the back. She could have had the redneck or my auntie brush it out weeks ago, but she was too humiliated to ask them to. Again, not a damn thing wrong with her hands, she just let it go wild out of sheer laziness.
I've had my fingers up her poopchute. I've washed her vajayjay. Yet she still pulls this shy, delicate flower shit with me, too.
Oh, & you know what? There's ONE bathroom. ONE. And she spends upwards of forty-five minutes at a time on it. I needed to piss & have a grumpy this morning & I had to wait an hour.
Thanks for listening to me bitch. Ya'll better get used to me being 'round here.
Nov 13 2007, 01:41 PM
That is what this thread is for. And that being said, I am going to do a little venting of my own.
The family member that I care for is so farking lazy sometimes that it makes my blood boil. The other day I got so annoyed before I left for my doctors appt. that my normally low blood pressure read borderline high. Fortunately when they rechecked it before I left it had gone down some. Seriously, sometimes it makes me feel like my head or my heart is about to explode. Maybe someday I will get in to the specifics, but today that is best left alone.
Then there is the frustration I feel with my pops, who is in a care facility, which makes me feel like a horrible daughter. He had a cell phone, which he thought he lost. Then he found it and I had to have the service reinstated. Then he lost it for real. So I bought him a new one and took it up to him over the weekend. It's almost exactly the same as the old one, which I did on purpose knowing he would be resistant to learning anything new. I programmed all of his numbers in the phone book and then showed him that the phone book function is the same. Also that all the buttons do the same things and he still thinks it's too difficult to use. He doesn't like the new one and wants his old one. I've explained that they don't make that exact model, that this one is the most similar and that the old one being lost means he CAN'T have the same phone. I've gone over it till I'm blue in the face. I can call him but he refuses to place outbound calls. It's the same, for chrissakes! I try so hard to not get annoyed with him, I realize he has dementia. But this is not a matter of him being confused, this is him being obstinate.
Nov 14 2007, 06:15 PM
The aversion to technology is insane, isn't it?
I have bitten my tongue so many times it's nearly raw.
Criminy, but the redneck is annoying! He has this habit of talking to people like he's talking to somebody slow. He gives a verbal play by play of everything. EG: The HUGE fucking EXPENSIVE ass plasma flatscreen that now dominates the living room was being wonky. I explained it to him, he started fucking with it & spent the next ten minutes telling me exactly what I told him. He's a worrier/dad type, too. Before I got here, he & my mom talked about me driving her around & he found out I don't have a DL. I lived in civilization, I didn't need one. It was just decided that I was getting one & that I'll be driving some car of his. I explained that it was a waste, I can't transfer it when I move back home & I don't really need it. The doctor's office, hospital, packie, & grocer are all a straight shot. Now he pesters me about it. Today he noticed my flipflops & decided we needed to go shopping to buy me some shoes for winter. I lived here for eighteen years. I will be thirty-three on Nov 30. I BROUGHT WINTER SHOES, DAMNIT! AND A COAT! I AM NOT RETARDED!
This is seriously fucking with my relationship. For the first time in my life I am in a great one & it's about to blow up in my face. He's mad at me for coming out here & doing this all over again. "She's the parent, she's using this as a means of control, you have a life too, she's going to do this every time you get some distance between you, blah, blah, blah." I know he's right, but she's my MOM. I may not like her or her games, but I do love her. She's half of what makes me me. Well, maybe a fourth of what makes me. I'm half my dad, a fourth my mom, & a fourth raised by tv.
Nov 16 2007, 05:32 PM
For the sweet love of Mike! Today took the cake. My grandparents & uncle stopped by, mom refused to see them. I gave them the 411, she decided to take a shower. She stank & she has a weeping rash beneath her huge, swollen left breast (I think she has a lymphatic blockage or an abcess inside.). I was enetertaining family when she wailed. I assessed the damage & sent the fam away. Emergency! She'd decided to piss whilst in the shower & WHOOSH! out came the shit. She's been bleeding somewhere in her upper GI, so her shit has been black, tarry, & foul. I rinsed her ass as best I could, but she's so heavy that I couldn't hold both asscheeks open & wash her at the same time. I needed four hands! I got her out of the tub & onto the toilet, where she discovered she couldn't wipe her ass. I laid down a towel on her bed, got her into it, & I wiped her shitty ass like a baby. Then I called my uncle to take me to the liquor store where I proceeded to buy three handles of vodka.
I did not sign on for this. At no point did anybody mention that I'd be wiping the melena shitted ass of a grown damned woman.
Nov 16 2007, 05:40 PM
AP, i would encourage you to get a nurses aide for at least some help with showering. argh. there is so much i want to say, but don't know if it will help. lemme know if you care to hear. i will PM you.
Nov 19 2007, 05:11 PM
Have I mentioned that the redneck is also a drunk? I haven't? Well, he IS. Mom had a Drs appt today at five. He got here around four & he was PLOWED. He admitted he'd had NINE beers on his way into town. Nine beers in forty-five minutes. NINE! Then he started opening fresh beers when he already had one going.
Oh, & he's a maudlin drunk. The kind that wants to get in the car & go home & keeps apologizing for nothing.
Were it not for the intarwebs, I would be sitting in a cell right now booked for double homicide.
Nov 21 2007, 04:10 PM
He's bringing the whole redneck clan over tomorrow! Whoopee!
I'll be at my grandparents.
Nov 21 2007, 09:02 PM
you could always play the beverly hillbillies theme when they walk in the door.
Nov 21 2007, 10:19 PM
Ha! I wish, but the gesture would be lost on everybody but my mother.
Twice! Twice in three days he has come home HAMMERED. Not a tipsy, not buzzed, but full blown drunk. And the crazy thing is HE DRIVES THAT WAY! He went out to run last minute holiday errands at 6:30, came back four hours later. Even though he knew I had just slipped dinner in the oven.
I asked my mom today if the getting wasted thing was a habit. Of course, she lied & said no. "I drink more than he does." RIIIIIGHT. He'd have to drink as much as she does to stay with her.
And to think I have to get up tomorrow morning & clean from top to bottom for his fuckin' kids.
ETA: In his thoroughly TRASHED state he is fucking with the expensive tv in the living room since it crashed tonight during Criminal Minds. The small flatscreen cost $650. This one is twice as big & has all the whistles & bells.
Nov 22 2007, 07:07 AM
Hey AP, this sure as shit isn't my jurisdiction, but I just wanted to let you know that I am thinking about you today. This could so easily happen to my mom. Lemme know if'n you want me to Fed Ex you some righteous stuffing and a bottle of wine.
Nov 22 2007, 09:35 AM
(((AP))) it is hard to be around that environment. i hope you are doing what you can to take care of yourself. more hugs for you (((((AP)))))
Nov 26 2007, 09:48 PM
Thank you for your kindness, Stargazer & Minx.
Well, he came home drunk again. He had to go to a funeral this morning, so he'd been drinking all day. I asked her again if this is a regular occurence & she said no. Which is a lie since she wasn't the least bit concerned when he hadn't shown up by dinner time & *I* was.
The only good thing about him when he's drunk: He speaks very softly. Usually he's full blown redneck hollerin', but trashed he's quiet as a slumbering babe.
ETA: I AM SO SICK OF ALL OF THESE HEADGAMES! All day long I've been helping her get off of the toilet just fine. Because she was pissed at him for getting drunk, she staged a fall down. So began the pity party. We put the hoist on her (Because he was drunk it was all twisted up & too loose.) & got her onto her hands/knees. It took her twenty minutes to *crawl* the ten feet to her bedroom & then we had to pick her up & put her in bed. Where she started to fucking cry. I was so disgusted I left the room. When I went back in he drunkenly tried to get me to tell her that she needs to exercise. I told him that we could talk alll we wanted she was going to do what she was going to do. And I took her weed, pipe, & lighter. HAH!
THIS IS HER FAULT! SHE MADE THE CHOICE TO EAT POORLY & STOP EXERCISING! IT IS NOT MY FUCKING FAULT THAT SHE GAVE UP ON LIFE. I WANT TO SHAKE HER & SLAP HER! IT ANGERS ME TO KNOW HOW MUCH I HAVE GIVEN UP BECAUSE OF HER SHIT! AND SHE HAS THE NERVE TO BE BITCHY & RUDE TO ME! AAAAAAAAAHHHHHHHHH! DIE YOU FAT BITCH, JUST FUCKING DIE SO I CAN GO ON WITH MY LIFE WITHOUT THE GREAT GUILT-DEALING ALBATROSS YOKED 'ROUND MY THROAT!
Apr 27 2009, 12:57 PM
Bump for DM
Apr 28 2009, 07:23 AM
I don't know where to start with my mom. She has many health issues, takes countless prescribed medications, has been in the hospital many times in the past couple of years, and yet she doesn't do what the doctors tell her to do. She needs to eat better (less sodium and fat) and exercise. She does not exercise at all, and considering her high blood pressure and cholesteral she should.
I guess my main issue with my mom is she has always played the victim, and I have always felt like the adult. I know she loves me, but she neglected my sister and I when we were little due to her being an addict. She was a functioning addict, but still an addict. I believe she made terrible choices that put me and my sister in some bad places. All my life she has wondered why we are not that close, and I just have never had the courage to tell her why. I am working on this with a therapist, but am still not ready.
My mom tries to manipulate me into feeling sorry for her when I know many of her health problems are due to her addictions. She has been in the hospital many times due to her drinking. My sister and I have thrown her liquor out, and she promises to stop, but she starts right back up. She claims to be alcohol free now, but I don't know if I believe her.
I have really bad anxiety about going to hospitals, but my mom guilt trips me if I refuse to see her when she is in the hospital. I went to see her this past week when she was in the hospital, and she claims she knows how hard it is for me. Well, if you know how hard it is then why are you asking me to come? Then she called my sister on Sunday and basically demanded that we both go to her house because she thought she needed to go to the ER. We get there and she was already feeling better, but she wanted our opinion if she should call an ambulance. I really believe she wanted to see if I would come, so my whole weekend was basically ruined because of her manipulating ways. When she was in the ER on Sunday after just getting out on Saturday I told my mom that me and my sister could not stay, and it wasn't fair to have us sitting up there for no reason on our weekend. My father had went fishing, and left her at the house by herself, so my sister said he was selfish. My mom said he needed some time to himself, and I said well yes we do too. She did not see that she is depending on her daughters more than she was her husband.
Before this recent hospital stay my mom was going through all these tests with her throat, and she would call me and cry and go on and on about money and her health. I finally had enough courage to tell her that I have anxiety about my own health, and listening to her problems along with all her friend's problems just makes it worse. She claimed to understand, but it wasn't a week later and she was calling me again with her issues.
I know to some that I seem uncaring because I am not willing to drop everything for my mother, but the painful issues that have went on since childhood are the root reasons.
Apr 28 2009, 04:57 PM
Wow. I nearly singlehandedly killed this thread with my deathwish. Who knew she'd be dead a week later?
I don't think you sound uncaring at all, Designermedusa. It isn't right for you to have to drop everything to tend to somebody that didn't tend to you when you needed it. You're doing what you can & nothing more can be asked of you.
May 1 2009, 04:09 PM
(((DM))) Wow. That sounds like such a tough position to be in. It is good to know that you are in therapy during this time. It sounds like in the end, there is just frustration with your mother's choice to not make her health a priority. Trying to set boundaries in an alcoholic family is tough and having to do it when your mother is dependent on you for care is extra difficult. I agree with AP that I don't think you are being uncaring. You are doing the best that you can.