This is my rant/vent. I have been working really hard and trying to juggle my mom and sister's care. I had a lady who helped me 3-4 hours a day until 3/1 since then I have just done the best I can. I applied for hm provider services in Dec --just last week I finally got approval. I saw the gero psyc on Tues and he said "you can't do this for too long. You have your life to live." He told me she needs supervision --and I need to start thinking of placement. Okay, I know I do but...I have such a full plate ---I just want some help right now ( placing my mom also means I have to figure out what to do with my Down's Sydrom 42 year old sister.) He then asks if I have home health. NO@!!!!! He states he will make a referral to a home health company that also has psychiatric support. I was glad and told him I may get home provider services soon. He told his secr to make a referral and we would see what could be done. (I am feeling like their is a spec of light in this dark tunnel) . In the meantime, the company for the home provider service came out Friday and got all the paperwork signed, etc. They would start as soon as the MD signed the form. They would give her 28 hours a week (4hrs/7 days a week) At this point, I am EXCITED ABOUT THIS.

WEll, this week is almost over and I had not heard from the home provider company(and I have been crazy busy at work). Today I call them and they tell me that the dr. has not returned the form. They faxed and mailed it on Monday. I call dr. office and the sec tells me the dr didn't want them (that company) so he didn't sign it. he wanted some other company. I go NUTS and ask why no one had contacted me. I have been waiting all week and I did all the work to get this set up ....as they have been no help and now they are holding it up!!!! (This is a nicer version than how it probably really sounded!!!) in the middle of this WE got disconnected ????(hmmmm) I call back and am not very pleasant. The sec just kept repeating that the dr had told me he was ordering home health with this company. I stated he did not tell me it was exclusive and that I could not use the home provider services (which is different than nursing--it is house cleaning, body care, etc not med dispensing...) I was yelling by now and she just kept repeating the same thing about it being an order. She then said they had called the two companies he wanted and neither would accept my mom's insurance so they were WAITING for him to tell him what to do. They are WAITING WHILE I GET NO NO HELP. I told her this was no type of care, no type of service....And when were they thinking of letting me in on the plan. I told her I NEED HELP NOW!!!!!! She just said she would have the dr call me. I responded to that ....I was at work at the time ( I teach at the university ) and I had a class to teach. Go figure he called in the middle of my class (no I did not take my mobile--I have a policy of no cell phones for my students...and that goes for me too!). I called back ...they are at lunch. I called at 1 and they told me they'd page him . That was 2 hours ago. They just don't care. I figure he wants to use those companies because he is linked to them--referrals or he is medical director.( Ethics?--another issue for another time). Regardless, those companies will not accept my mom so now they are blocking me getting any help. Unfortunately, my mom does not have another dr. --we are in midst of getting a family practice dr but she is on his waiting list.

I just can't believe they are so disregarding of our situation. Most of his patients are Alzeheimers, dementia, etc. You would think there would be more consideration or recognition of what we caretakers have to deal with.

I am so tired of trying to keep up with it all...it takes every effort for me to keep moving forward.

I am needing to take my daughter prom dress shopping tomorrow (we have to go out of town because we live in a small town) and I worry about my mom and making sure she is okay. But, I can't shortchange my baby girl ...or welll, aren't we all having to figure this out. I just keep saying...I am tired!!!

Sorry for the long message. Just needing to vent.AS I WAIT FOR A CALL BACK.

So sorry to hear of this plight. I can't believe the callousness of doctors, medical personnel etc. You are just a number .. and all kinds of promises are made. Cruel things are said. Mistakes are made. A fax is not sent.

Hang in there and keep calling the doctor's office. My hint (if at all possible) speak with kindness to the secretarial staff, ask how they are feeling, tell them a little about yourself and your Mom and sister ..get on their good side. Then when you call again they won't say "OH, it's the crank again, get rid of her" but "it's the poor lady with the sick Mom, let's try to help her.' It's the old "more flies with honey" story (but who wants flies!)

I've had the same problems in 3 countries, bringing up my kids in 2 overseas countries and back here; and having to figure out how to deal with doctors. I developed the above method ..whenever in the office, polish the apple of the POWER behind the desk. I did it here when I broke my wrist. I asked HER how she was feeling, is it a good day for you? How's your family? while I waited hour after hour because my $%^&* PrimaryCare Physician had not faxed over my "referral" .. finally she took pity on the "nice lady with the watermelon where her wrist belongs" and allowed me to see the Great Man ..who ultimately fixed my wrist very well, considering the double break ...

Meanwhile, vent, yell and scream here ..and be 'sweet' to the doctors ... it is so sad we have to be this cynical ..

love,

Martha

Oh my, you do have a lot on your plate. I know the frustration of dealing woth doctors. I had to fight doctors for myself and my dad. My sister used to work as a Medical Assistant and I can tell you from what she told me, Martha is right. My sister said the people who were patient and kind were the ones she loved. She wasn't the reason things went wrong but she was always the one who got the brunt of the anger from the patients who were wronged. She said she understood why they felt as they did but it angered her when she told them it wasn't her fault and they kept on yelling at her. The people who were nice to her were treated with the most respect by her.
I'm not saying you don't have every right to be as angry as you are. Lord knows you do. Kill 'em with kindness. :)

Hugs, Barb

A lesson for all.....if you piss off the office staff....the doctor will discontinue care for your loved one. Apparently, I was labeled a difficult caregiver and thus we have been "fired" or "let go" from his care. How's that? For all a lesson or confirmation of earlier replies...be nice. yes, he told me he would sign the home provider form today but within 30 days I will receive a letter notifiying me of his discontinuation of care of my mother.

I am feeling so many emotions right now....i just don't know what to do ....don't know....

my lord delores. what you do right now is breathe. and then breathe again. i can't believe how you've been treated! at least he signed the home provider form so you'll be able (?) to get some help in. and it also sounds like it's a good idea to get another dr anyway. but, the blow to the gut after going for 'help' and being so disrespected (getting kicked when you're down) is unbelievable!!!!! i know, that kind of thing makes you feel like you've been abandoned by the whole world. that 'repetitive answering' thing always gets me too - when you're begging for help and the secretary just keeps repeating their stock phrase which doesn't quite address what you're saying. makes you feel primitive rage, or it does me, anyway. brreeeeaaatttthhhheee.....and then when you're past this.....write the office a letter....or better yet, send it to the editorial column of a local newspaper!

Unbelievable. They have replaced the Hippocratic Oath with the hypocritical hoax.

I pray that you will find a compassionate, helpful doctor for your Mom. Meanwhile, the home provider will be a great help for you.

Love,

Martha

the getting kicked in the gut statement seems to describe how I feel. I am also questioning my handling of situations --was I too demanding? Was I disrespectful to them? Has my mishandling of my own frustration worsened the situation for my mom? I am usually an accomodating type of person...are my emotions re: my mom, the issues of loss just getting projected to others? This has just got me questioning myself in general.

Thanks for the reminder to BREATHE!....as that song says "just put your head in your hands and breatheeeee"

No. You're not too demanding. That's your mother and she's human. She (and you) should be treated with respect. This clearly is NOT a compassionate, caring doctor. If your expecting him to do his job in a timely manner (and that IS all you're really doing) is the reason he labeled you a difficult caregiver, he's not a good doctor. So maybe you were angry. You have every right to be. If something is faxed, it's not unreasonable for you to expect it to be faxed back with a signature within a couple of days. And if that's not possible, it only takes a few seconds to phone a person and tell them so that they can begin to make other arrangements. Your not being a difficult caregiver. You're just a frustrated one. And believe me, I get frustrated too. I know what it's like to wait for help. I'm waiting for a social worker to call me and suggest something for me to do about my dad's hygiene. We've been waiting and while we're waiting, there's no showers, no changing clothes or sheets, nothing. And still we wait. :(
You are doing the very best you can. Caregiving is physically, mentally and emotionally draining. I hope that in some way, talking to us here will help you. Venting here is fabulous. We really don't know each other but we'll tell each other things we wouldn't think of telling our own families. That's how I've been coping with dad and my situation here. I jump on this board several times a day.
It's good that oyu're letting things out here. Maybe by doing that, it will help you.
And remember, this is your chance to start fresh with a doctor that could not possibly be any worse than the last one. Think positive. You'll get answers.
And breathe, my friend, breathe......
Love, Barb

don't fall into that one dolores - see, the thing is, they are in the HELPING field. i'm a clinical social worker, and believe me, i've had clients yell at me and all kinds of things. but my JOB is to help them understand whats going on with them and help them get what they need. i guess if you'd 'done that' in a bank, or a grocery store....ok, maybe. but ESPECIALLY since they 'specialize' in alz/dementia, i find it INEXCUSABLE to turn a deaf ear to somebody THEY have already deemed in great need. surely this has not been your approach each time you've visited/called the offce??? it's their job to EVALUATE not instigate/provoke through bland disrespect. i find it to be passive-aggressive, big time. i actually did that a month ago with my drs office, my dr called me an hour later and said "what's wrong, this doesn't sound like you"? 'course, thats all i needed to send me into a puddle of blubbering tears....but then i could get over my anger and get the HELP that i NEEDED. like YOU need. i just think it was unprofessional. and of course, we end up questioning ourselves like women do....but, ask yourself....do i act like this most of the time or only when i'm yelling and nobody's listening when they're supposed to be? (i.e. PAID to be). grrr.........now go breathe some more!!!

(((hugs)))

THanks!!! I cant describe how helpful your words are.... it is helpful to communicate with others who understand. i am amazed at the situations we end up dealing with...
Thanks...that is the only word I can think of..actually, my brain is tired...I've been as you say "a puddle of blubbering tears" all day so....again, thanks!

Hey, I work in a department store and let me tell you if I ever treated a customer like that, I'd be fired on the spot. So what does that tell us when society doesn't allow that kind of behavior in a store and does in a doctor's office? I'm of course talking about the doctor's behavior. Hmmmm, what's more important-the right color blouse or the proper medical care?? :rolleyes:

Rest easy knowing that there is good medical care out there and you're on the road to getting it.

Love and hugs, Barb

Friends, we are not only sacrificng our time and energy now, but also, sadly, shortening our own lives. I read somewhere that a caregiver shortens his/her life by about 5 years due to the stress. The doctors should be handing us medals, instead of 'firing' us... I am glad my Moms doctor, just a GP, is so understanding.

Above all, do NOT blame yourself! I was not trying to say "you blew it" ..it was NOT your fault! I was only suggesting tricks to get on the good side of the practice employees. These tricks should not be necessary!!!

I hope a better doctor and help at home can be found, SOON!

Love,

Martha

Dolores

Perhaps you could start a journal of behaviour .... log it .. without emotion if possible day to day ....

then hand it to the doctor and let him read.

If he doesn't want to read it, then gently remind him that he is there for patient welfare, NOT funding .. and if he doesn't want to help, could he recommend a doctor who will.

Get him/her at their ego .. it'll work everytime, but do it with a smile. It'll a) confuse 'em, and b) show them your serious.

Remember, if it wasn't for the patient, they wouldn't have a business. They seem to forget that too. You have chosen to go to this doctor .. and you need to look at it that way .. you chose him, he didn't choose you. Not happy? Find another one.

Yes, it's called Doctor Shopping, and I did have one doctor point that out to me many years ago. I said "When I find one who HELPS me and NOT fobs me off as a nuiscance, I will stay .. I have a big extended family that can bring you business .. you want my business? You will treat me with respect"

Well .. 10 years later, he's still my doctor.

PUT YOUR FOOT DOWN. Your paying him ....... he's working FOR YOU remember??

Hang in there

Hugs
Sally

Yes, but ..even here in NYC where one can supposedly get the best care in the world,(if you have the 'dough!') doctors can pick and choose their patients because there are far too many sick people per doctor. Supply and demand. Good ones have waiting lists.

I hope I can get a DOCTOR in Indiana, never mind a good one. Until then there are 'urgent care clinics." That does fine for me with my usual good health, but later???

It isn't easy!

Martha

I think I am lucky living in Australia. Just in my little country town ~ we have an over abundance of GP's (not specialists, they live in the cities mainly) .. the government pays our doctors extra to go that extra mile. It may take me 8 days to get in and see MY particular doctor, but if I'm not fussy, I can get in within a day or so and see one of his partners. Am I sicker than that? If I create a fuss, I can get in the same day. If THAT doesn't work, we have another 2 medical centres (that cost unless your on a pension) that can usually fit you in. If THAT doesn't work, I go to the hospital ER. Wait a couple of hours and get seen. Either way .. all of the above for low income earners is FREE. Maximum cost for anybody else is $50. Hospital is Free.

This is very simplified by the way .. but I've worked in the field for years now ....

We can all get emergency surgery done free, because everybody in Australia is covered by Medicare. The only difference is you don't get a choice of doctor. Seriously, if you need surgery that badly .. you wouldn't care who did it as long as it was done. If you want voluntary surgery, you may wait a few years, but even then it is free. If your very very sick, a bed will be found for you, and it is free too. Medicines are free. Treatments and enquiries into your illness are free.

Now .. if you have Insurance: you get bills. You have to pay excess charges to your surgeon and anaethetist, you have to pay for your medicines, and you have to pay for treatments and enquiries into your illness. It's all a bit twisted really .. lol. However, you DO have your choice of doctor AND your choice of hospital. You can stay in either. If you stay in the public hospital, you get their food and share a room. If you stay in a Private hospital you get a choice of food, wine and a single room.

Now: Scans, X-rays and the like, in my little town have been monopolised by a corporate Giant here. Every doctor had no choice. The hospitals had no choice. Then a little independant moved in quietly. The Corporate giant, and the doctors loyal to that scheme bagged the little independent. But the little independent worked hard, and was FREE to everybody !!!! No extra charges!! High quality scans .. fast and efficient ... no complaints .. and slowly .. slowly .. the local doctors went the way of the little independent ... the big corporate giant lost it's interest in the public hospital .. and NOW big corporate giant is trying to improve their standards.

Just goes to show the little guy CAN win .. you just have to perservere.

anyway, my long winded point to the story is:

DEMAND your rights as a human being. If you need to, research the Charter into Patient Care. Print it out and take it with you. Highlight the relative areas, and hand it to 'she who reigns supreme' behind the counter.

And of course, remember, if your paying, they're working for you!! It's time to turn the tables. Doctors are not the 'god's' they were once thought to be. It's all a money making venture now ~ the almighty Dollar is what talks. Then if they want your dollar, they had better make a good impression!!

Ok .. off soap box

Sally

Dear Sally, we had similar coverage in Germany, so I was quite shocked when I came here and learned about co-pays and deductibles and even now, as a Medicare recipient, it only covers about 80% of your costs. So you have to buy supplementary coverage, and even then you have to pay co pays and deductibles and all prescription drugs until a new plan comes out in 2006 that should help ...

However, all that coverage In G was not really free - we paid VERY high taxes. So indirectly the government got the money to use. It was fairer however because income tax is on a sliding scale, and doctor's fees are not.

The best thing is to stay well .. take your vitamins, your apple cider vinegar, your garlic (I feel like a salad!) and get exercise, and don't let your sister put you down .. and don't let your AD patient drive you up the wall ...and, and, and ... pray a lot! I do!

Martha