Is there was a thread or support discussion for caregivers who care for private clients, not their family?

ladeeM-
Many good points, and I would love someone to come and at least do the cleaning, then start pitching in to help with mom. In fact two years ago some and I repeat some family members wanted me to find help to at least clean. But the one in charge of finances would not hear of it.

Yes, my family will be my family, and I am powerless to try to change or even control their existing behaviors. And I have been able to leave much of that aside, it is just too stressful to say nothing of mentally draining. Trying to figure out, if I do this, then maybe they will do this had been a constant exercise. Now I know it is completely futile, and they will need to make the first gestures to try to smooth things over.

What nobody seems to understand is my mom is happy, comfortable, and safe in her home while being well taken care of. For them to think of moving her to a facility is selfish and I think only to relieve their guilt while I am spending so much time with our mom without any sort of meaningful support, or assistance. And I am doing fine. My mom raised at least one tough old broad, and two wimps.

Glad, I know for me, when the family is talking and no one is listening, it's about 'timing'....knowing when to interject something and how to say it...and who to say it to, to get results....it's not a good idea for a paid caregiver to walk thru the door on their first day and do this!!!

But most of us have been with our families for an extended period of time....we do get to know who to talk to and when...I know this is one issue that I want families to consider with your paid caregiver.... we are not robots... we have feelings, our own personal stuff we leave at the door...sometimes we are 'triggered' from our own family dynamics from something said or done... not that part is absolutely up to the caregiver to pay attention to and deal with without involving family.... that's why I come here.....that has nothing to do with my job description....

I do not consider myself a 'family member'... I have my own dysfunctional family that I avoid like the plague..... but I do tend to make 'friends' most times.... one of the DIL's and I have some great talks..... I find human nature fascinating and just like to get to know certain people....and others, like the oldest son... I go thru the motions with him...never disrespectful, but I know he will only make my brain tired with empty and meaningless noise..... and that is how I have learned to discern what is important information coming from a family member... is it 'noise' or information... or an honest exchange....

So most days I am more mentally exhausted than physically tired... I do have chronic back problems... but that is manageable.....like now... a seven day shift, and I DO NOT want to hear my name one more time....so will be sleeping on my one day off...not much of a life, just like the rest of you.... but it is my life and I chose to do this... or it was chosen for me..... doesn't matter....it's what I do... but even if I worked at McD's, I'd need a forum to bitch...!!!!!

I am sorry that mom just isn't open to having someone else in the home... but I am going to applaud you for doing everything in your power to keep her out of a NH.....I hate those places and things done there....

Is there a possibility you could hire someone and in a repetitious way, let mom know that the person is there to help YOU, not her??? And by that I mean, with the caregiver knowing up front what the plan is, to let this person come in every day or how ever you would plan it... and simply help YOU... like doing the dishes, or some housework that you just can't get to.... no hands on with your mom... and letting mom get used to someone else being around?

Then very slowly the caregiver can offer help with getting up out of chair... ect... I know it would be tedious, but so is doing this job by yourself... folks with Alz do not like change....and there is a possibility you could find a caregiver agreeable to this....I would love this kind of challenge.... so hopefully there would be someone out there to help you... a few hours a day....it would help YOU.... and maybe mom would adjust... something to think about.... because doing this job, under any circumstances is hard, much less doing it alone....so you are not alone...sending prayers for you to get some help....and the family will be the family no matter how much you stress over it.....I read your posts on other threads and you seem to be centered and know what is needed.... sometimes we have to use the brain cells for being upset with sibs, to using them to find a solution..... you are in my prayers Glad..... something will work sooner or later...

I don't know that I have better words, lol. I just have mine.

I've mentioned this to LadeeM, but my situation is unique, in my experience, and just about anything I've heard about. At any rate, it's hard to imagine another situation so harmonious, to be honest. It might have to do with the fact that both of us who live here were friends of the family, before we took on the responsibilities of caring for Edna. My sister is best friends with one of the daughters - since high school. My roommate/co-worker has been friends with the same daughter for a decade or more. So, trust came more readily. Besides the fact that I 'proved' myself early in the game.

As it regards their mom, all the siblings are on the same page about mom's healthcare, so we rarely have to go head-to-head about stuff. When we were making decisions regarding the most recent course of events, they heard my point of view and considered it, but it was mostly a matter of clarifying specifics. We were already =mostly= on the same page. When both of us were treated with less than respect by the hospital staff, the family was offended on our behalf.

I've mentioned before that I draw certain boundaries. I am *not* a member of their family .. I'm a much valued member of mom's healthcare team .. with affection and appreciation. But may god forbid them treating me like they treat each other. *eyes roll heavenward* My experience of 'family' is tainted, I admit it. So, I actively shy away from it. For the first few years, I completely avoided any celebrations, unless I was 'on' that day, and then I was 'invisible' except when Edna needed me. That's relaxed in the last couple of years: I acknowledge my birthday and give gifts during the holidays (long story, lol .. I won't go into here). But it was all in the name of setting those boundaries.

LadeeM- I was surprised when I was told, minor issues you don't have to disclose. But a major one like that, where safety is a issue, you should be told upfront. I have dealt with that disorder, my brothers ex has it. And she would snap without warning. I'm glad it's out now, and hopefully she will accept the treatment. As with having a job... who knows. Already got an offer for the first of the year. But would like to stay on with this family if the haldol helps.
Glad- an outsider does see the situation for what it is. Families tend to have a range of opinions, which is normal. So it may cause conflict. Like with my kinda patient, 3 kids, two accepting of our input, one not. Causes conflict. I tend to deal with her better than the others so try to put her on the same page, but I'm not in charge of her brain, so she goes back to her opinions. And it causes fights. Such as, why not get mom treatment for her kidneys, she's on hospice. So that causes a fight. I personally think getting everyone on the same page is the best, but that comes differently with each person involved. I'll be honest, every family I worked with was dysfunctional.... as most are to some degree. But as an outsider, I know how to deal with each personality, what to say what not too. Just do the tasks at hand and try to keep the peace. Unless health is compromised, then I speak up.

ladeeM-
Thank you for a very thorough reply. When a family is in the midst of all of this it is hard to listen to each other, I suppose, without having what most would consider an outsider injected into the family dynamic. I wonder how many of families dealing with this actually deal with it well.

I like to think of it as putting the function into dysfunctional. You have all those childhood battles, competition for love, etc, etc. to contend with. I am sure you have quite a difficult job when there are numerous personalities to deal with and trying to stay focused on the most important job at hand.

Wow, PC, to be dealing with that and not be told!!! I don't think I would be ok with that on any level.....!!! Are they planning on having you come back after they see if the Haldol works....???? You were in a dangerous situation and was not told.... sorry, they would be looking for someone else....but guess it depends how connected you are.... wishing you well with this whole thing... and hope you do not respond like I would... lol

Glad....The one family that I am still very close to is Marie's family.... her daughter and I go to lunch, keep in touch, text, phone calls, and I am invited to Thanksgiving and Christmas with them... I passed on Tgiving, but will go on Christmas....this was my charge, and her husband with Alz, before Marie passed away and husband was placed in Memory Care Unit.....

Most of the families participate... on some level... I do see them either being ignorant or in denial about many things.... Things are usually a mess by the time I am hired, so it takes months to get the family on board, if at all... the lady that broke my leg.... well, that family should have been turned into APS.....I will live with that regret the rest of my life....

The family I work for now.... hmm, where to start.. the youngest son died two months ago from brain cancer.... he had been their primary caregiver for over three years, with the brothers coming on weekends to give him a break....I have an very difficult time communicating with the oldest son, so I keep in contact with the middles son.... I hate adding so much responsibility on his shoulders, but he is the only sane one in the family.... my perception after being there almost a year......they all live out of town... I try to take care of as much as I can, and still walk the fine line of not 'taking over'.... a slippery slope, that one....

As a general rule the families participate... making special days important.... sometimes with gritted teeth and resentment, but they do participate.... that is where the family dynamics comes into play.... I can observe this and get a 'feel' of who my 'go to family member' will be, ect.

We live in rural Texas.... so, much of this is as cultural as it is family being family.....the reason I am saying this, as LadeeC's approach to some things work for her, but would not work here....setting boundaries is not as simple as just saying 'no' sometimes... or maybe it's just me.... PC's family are just now telling her the truth of her situation.... Sue is blessed with an awesome family.

And the reason it worked so well with Marie's family is that they were willing to hear what I had to say in regard to my observations... they trusted me, I wasn't a 'servant' and they did not perceive me as a babysitter.... they knew I knew what I was talking about.... there were no power plays...they respected my input, and I respected that the final word was not up to me... but they LISTENED.... which is more than I usually get...

It took me threatening to quit my present job to get their attention.... things are different, if not better, and that's all I can hope for in this situation... I am taking into account this family having deep grief over a son and brother lost.....Stu's bday is the 15th of this month.... and no one is talking about anything.... you could cut the tension in that house with a knife.....so, in the end, it's twice as stressful for me... trying to discern if C's physical decline is caused by grief or something physical....this is one complicated mess..... since I am in it everyday, it's hard for me to put into words....

C still does not trust me... whether it be with their health, her belongings, or my ability to put a meal on the table...but she was cynical and negative before Stu passed away.... just her personality... Gene on the other hand.... I love him with all my heart.... he is neglected for the most part during the day until I get there... that is another very long and complicated story... but I have spoken often and LOUDLY about this situation.... and some changes are being made here...this is where the sons have been in denial.... they aren't now, and it's on them now to seek a solution... I get it that there are limited financial resources.... but there are resources none the less..... I do many things for 'free' for lack of a better term... because it to me is about Humanity, about Respect for the elder, respect for the situations they are in....either thru poor planning on their part, or just life handing them more than they were prepared for....

I feel that many paid caregivers go beyond what their 'paid' duties are.... that is what separates us from what we call 'warm bodies'.... just someone that comes in and either takes over, takes advantage of the elder, or simply does not provide the bare needs.......

I feel bad for families that have to seek outside help....it's a crap shoot every time.....and sometimes when the family realizes we are good, we are worked into the ground..... sometimes it's because the family doesn't' want the responsibility, and sometimes it's because the family finally gets a break and doesn't realize what they are putting on the caregiver...

So, don't know if I answered you questions... keep asking... I'll get to it sooner or later... lol.... PC started this thread and I have finally found a place I can call home.... my home thread is How are YOU..... but here, I get to say how I really feel, what I really think.... this one is about ME..... my frustrations of caring for a cranky old lady... but it's different..... maybe LadeeC can put it into words better than I am using.....

But I do want family members that are reading or participating in this thread to know how excited I am, that thru it all, we are building some much needed communication.....but feel free to ask me anything... if you are prepared for my answer.... ask all of us.... we take different approaches to the same thing....

Sending everyone everywhere who do this on a daily basis... hugs, respect, angels and chocolate......

I had a client once who I would see once in a while, she had other caregivers too, but took to me. So I ended up her main caregiver. She liked to talk, so did I. She liked to have tea with someone, so we did. She liked to make her own lunch, so I "assisted". She liked me around cause we had a good time. She didn't want a caregiver, but accepted me. It depends on the people involved, you can be a great caregiver but sometimes you can't connect. And it takes time sometimes for the elder to accept the help, every situation is different. We just do the best we can and if it don't work out, well that's how it goes sometimes. But it basically comes down to two people connecting and accepting :)

ladeeM-
I can imagine families and all of their dysfunction you get to know intimately, first hand. In our situation, I don't think a private caregiver would work. But, our problem is, that I have been caring for mom for more than two years now in her home of 50 years. In this dysfunctional family, siblings would rather place mom in a facility. I suppose, then they would not have to deal with the guilt that they feel, jealousy, whatever it may be. I'm not even sure that they are able to acknowledge that mom has Alzheimer's, or if they do, how advanced it is.

I'm not even sure what my questions are. But I can tell you sibs wouldn't even know where to start. They don't respond when I provide them information about mom. Even with a three day hospitalization recently sister with POA did not come to see her. Excuse? She didn't have a car. We are in a large city with six or seven cab companies, and she can afford a taxi, definitely. It just was not a priority for her.

My mom is just so suspicious of everybody and everything she does not understand. It seems that the best solution is for family to care for her. She was in respite two years ago, and became so agitated she started throwing things at her husband who could very easily be hurt by her. He has general age related decline.

Do you find that the children of those you care for more often than not do not understand the condition of parents?

How involved are they when someone else is caring for them? Do they call frequently? Do they visit? Do they take them on outings? Do they take any time to care for parents at all? Are daughters more inclined to assist than sons? Do children help with household chores?

Have you ever been in a caregiving situation that has gone quite well? If so, why did it work?

Well ladeeM, the bomb dropped. G is an untreated paranoid schizophrenic. I went in today and was told they were putting her on haldol. I was confused, and said I didn't think that was gonna help. Nobody said anything then. So I stayed for an hour without her knowing, she was saying such awful things about me, threatened to kill me even! So her daughter took me outside to tell me to go so I didn't have to hear anymore. Then she told me her mom has been untreated for years and its a well kept secret, the other caregiver doesn't even know. I apologized for my concern for the haldol and that I understand now. On top of that she has MS and neuropathy.

glad, I'm not clear what your questions are... but I will say I am trained to deal with my charges.... it's the families that drive me insane...about three years ago I was a live-in.... I kept trying to tell the daughter that her mom needed to go to the Dr... telling her my observations..... long story short, my charge ended up in a rage and broke my leg..... and that sweet lady ended up in a NH, misdiagnosed with a UTI, that ended up taking her life.... and I say sweet lady because when she was healthy she could be sweet....She had advanced Alz and was a handful..... but the neglect by the family was more than I could deal with..... and it ended up costing them a lot more for my broken leg than it would have cost them to listen to me and take her to the DR.... I will always walk with a limp now.... and when the weather changes, I am reminded of my lady Ruth..... but I still would not trade my time with her for anything...

Am currently working for a family that has dysfunction down to a fine art...wont even go into my issues with this family..... but I will stay until Gene is no longer with us.... it has taken me almost a year to even get the kids to communicate with each other and me...... and believe me, I am NOT a martyr....I am a CAREGIVER, not a babysitter, not a maid, not a servant....so, no, I can work with my charges, I know what to do with them... families.... another story entirely....

Ask questions, we will try to answer them for you.... this thread seems to be doing some great 'bridge building'..... and I'm sorry your mom has not found the right person to assist her... I go into a home knowing I am not trusted....I feel it is up to the caregiver to work at being trusted....not just being a 'warm body' setting with someone....
I had a rough shift today.... I will come on here and vent tomorrow after some rest..... nope Glad, it's the families that are burning me out....

You caregivers sound like wonderful people. I cannot imagine how often you have to deal with angry and confused clients. We tried an agency caregiver over a year ago. It did not work. My mom tried to physically throw one woman out of the house. When mom was young she spent sometime living in Tennessee and her mother was extremely prejudice. Though we tried another caregiver that we thought mom would be more comfortable with, a Swedish Lutheran, this would not work either over the long term. Mom just does not like strangers in her house. I know I would not care to have bizarre treatment from the one you are caring for.

I'm sure that some of you stranger (not meaning odd) have had some rough things happen. Do you complete some sort if a report for the family listing activities, etc?each week, or something

Well PC , if you have the patience to wait this out, then go for it..... do you mind sharing what her health issues are??? I simply am interested in why she does this occasionally... it will add to my own education if and when I am ever in this situation.....I can never have too much information.... hang in there and follow your gut.... not your heart, your gut... you will know when and if it's time to remove yourself from the situation....
Prayers for the outcome that is best for you.....hugs!!!!!

Long story short, sent home after a half hour. She had no clue I was there, but the other caregiver thought it was a good idea to tell her I was there. G flipped, so other caregiver worked my shift. But they want me to try again tomorrow. I was told when she gets like that she singles someone out, sometimes family, and spews venom at them. Good thing I don't give up, but don't want to aggravate either.... errrr

Thanks ladeeM, he is in poor health on top of it. So he told me today, he has himself to consider too....

Well PC, you will have your answer tomorrow... and yes if G's husband is considering AL, it just may be time... he sounds like he is exhausted from all this..... encourage him to take care of himself..... so let us know what happens tomorrow... you'll be in my thoughts and prayers...

So I got a call from Gs husband apologizing for all this, he's at his wits end. I am going back tomorrow as his helper, which includes helping G, but with little contact to we get to the root cause of her anger. So as he said, she has no right to fire me. She's refusing everything including meds. I'm nervous how she's gonna respond, being that she thinks we are having an affair. So wish me luck, this may or may not work, but I will give it a shot. If this continues he's afraid she may have to to assisted living.

PC... my prayer is always for God to send me where I am needed... and I had a similar situation... after being there for 2 1/2 years.....but what I learned from that was that I had taught all I could, and learned all I could from this situation, and it was time to learn and teach with someone else.... you are a very loving and caring woman.... there is a family waiting for you.... and you won't stop caring for G.... and you will contact her at some point just like I did... and you are right... we do the best we can.... then we bow out gracefully and end up somewhere else.... the nature of our job.....because it is more than a job to us.... prayers for you PC.....on to the next great adventure.... lots of hugs....

I'm gonna let them know I will hold out for a week. Hoping things get better, but if not going to look for another charge. I know my G is going through her own turmoil, but I did the best I could. I can't cure her, just be there. Right now that's not good enough. I will hold out, but I wanna work, I know there's always others in need. And that's what I do, help those. I'm sad this turned out this way, and I know the response I got was out of frustration and I understand. Just hope she will accept help from the doctors.

I'm sure you know this already, but make sure the family knows what is going on and your possible departure..... whether it be family or our job, we have limitations to what we can do......hang in there... there is a family out there and a charge, that is waiting for your love and care..... let us know what happens...hugs and prayers....

Thanks ladeeM, she refuses to be seen by docs and nurses, I brought up possible UTI, but if she refuses care can't tell. I'm gonna wait a week, if nothing, I gotta move on.

This is strange PC... and the family doesn't know what the problem is either??? Sorry, I would have to tell the family to get to the root of the problem, and not have my life on hold...
I know you are invested here... we all are... but this is also your livelihood. If you can afford to wait her out, then do it.... if not, find something else..... but I would make it understood that if this happened again... I would surely take her at her word and not come back....Let us know how this works out... sending you prayers for hanging on the end of a string.....

Called to see if I was working today, was told no. Asked about tomorrow, was told don't call me I'll call you. I know it's a tough time dealing with her mood, but I think I deserve more than that. I know I did my job above and beyond, we were having a blast everyday. So I honestly don't know what caused this. Hopefully I do get called back...

Thanks ladeeM, I talked to a family member, she's still agitated, I'm supposed to work tomorrow, but she told me to wait so will call in the morning. Wish me luck, I have no clue what to do but will play it by ear.

PC, happy to hear you still have your job..... mercy, the stuff that gets thrown at us sometimes... sending you lots of hugs...

LadeeC, I know you know it will take time for her to recover from the anesthetic.... sometimes they only go so far after that , and that is it..... but happy to hear she is physically doing so much better... but she also has an awesome caregiver...... that needs some good time off....so when you have your next days off... run Forest, run..... love and hugs...

PC .. in my situation, all I've been able to do is tell her, "You've been REALLY sick, and you're just now getting better. Part of being that sick is that you don't remember a LOT of things. We'll help you to remember, and we'll do everything we can to make it easier and get you back to doing stuff you want to do."

Speaking of which .. she wants to go do the dishes. Gonna go see if she can actually stand. She may surprise me.

To be honest, at this stage, I can't really call it by any name. Her body seems to be recovering great: she's no longer incontinent (seems to be much more aware of her body), she actually stood up without assistance for the first time in over 3 years (couldn't *remain* standing, but still.. ), she's carrying on full conversations, but they're all dated by about 10 years (as far as I can tell) without remembering ANYthing of the last five years. I'm having to tell her about all the deceased members of her family .. she doesn't recognize the house as her home of 30 years, and her short term memory doesn't exist. I can tell she's agitated and starting down a path of depression. Who wouldn't? If I 'woke up' to find myself physically incapable of doing all the things I remember doing, and everything I remember isn't current or no longer true, plus all the losses .. I'd be losing it.

I'm just trying to remain patient. Tough on four hours of sleep and virtually no rest since. The scariest is her trying to climb out of wherever she's laying or sitting. (Hurry up fall alarm.)

She always forgets, the husband heard it all and talked to her daughter. I still have a job. Never thought UTI, but she refused her nurse coming out. Will keep you posted, she just had one too. Gonna mention it though. Thanks ladeeM!

Oh wow PC.... that is not good to hear..... if she has done it before, does that mean she will reconsider????? The only thing that comes to mind, other than you sharing she has done this before, is a possible UTI.... it can change a person in a matter of hours....

Have you contacted the family? Do they know about this....? I hate to hear this for you..... right here at the holidays..... please let us know what happens.... and prayers for a new job if it comes to that... I am so sorry this is happening..... but our job is very fragile at times.. you know this as well as I do.... hang in there and keep us updated....hugs

LadeeC..... I don't envy the every 20 minute calling.... is this just part of her going downhill? Sounds like her little body is having a really hard time rebounding..... like PC, let us know what is going on..... prayers for you to get some rest here soon...... hugs

By the way, I can't cure her sickness.... her diagnoses is not something curable. We can only make her comfortable.