Do I have a right to expect the same health care aides, or at least a small same group, in our home?

*Following this comment thread.*

Yes, she is with the same agency. I have just had a visit from the nurse and I told her while I did not want to hurt anyone's feelings or get anyone in trouble, I simply do not want this person to come back. Also let them know why and mentioned the issue with the aid telling me that is someone is sick, running a fever, throwing up, etc. she will NOT be coming that day....!!!!!! I guess she just takes care of "well" folks...anyway, I told her if the one we prefer can come great, if not I would just as soon have no one to this person....

She needed help turning, moving, pulling up in the bed....while I don't mind helping who does she think does this when she is not here? I always turn Mama, pull her up, move her over, etc. by myself....

The nurse has told me she is going to handle it for me that htere is no reason at all for us to be having any stress that it is their job to help take that off of us....that we should definitely not be getting stressed over the aid...we shall see....

Oh Hope!

The phone thing? No way. Your aide does not get to ask for your help and then get on her phone. Why is she asking for your help anyway? That's her job. What is she needing help with?

And aides are taught to wash "clean to dirty". Meaning they start off cleaning the areas of the body that don't get that soiled and finish with the peri area. Not the other way around! That's disgusting.

Absolutely talk to the nurse. Is she with the same agency as the aides?

My saga continues. I just thought I had my aid situation handled. The one who I prefer NOT come came today. And to make matters worse, she pretty much talked down to me....asking me to help her do this, do that, and once she got me involved, I saw her messing with her i phone while I finished up...I have had it....I also saw her, AFTER she had bathed my Mama's bottom, rinse and use that same rag on her face!!!!!!!!!!! oh heck no you don't....the nurse is coming soon to see us and I am going to address this situation immediately....I have a lot of patience, but I am not having this.... :( and I don't need this stress. If aids can't help I would just as soon they not come at all and avoid the stress that is now being brought on by this type of behavior.

And that being said, I also know how selfish I may be for begging Him to let her stay. I do pray that God knows my heart. He knows what she needs and what is best for her and He knows what I need and He will be with us all . In my normal mind right now however, I just can't imagine this world without my Mama in it....I feel like I cannot breathe when I even allow myself to think of it....

Thank you Eyerishlass. I can feel your pain and am so sorry for your loss. I remember losing Daddy, now over 18 years ago, and I still miss him so much. I sometimes think back on those days following and I know all that got me through was my Mama. I have no idea who will get me through this. I have a brother, whom I love dearly. But he has a life and a family and his wife has not been to see my mother in TWO YEARS.....I do not know why. So there is a lot of anger in my heart towards her because my Mama was so good to her. I don't know if I will ever understand how so many people abandoned my sweet Mama .

My parents were older when they had us, so most of my adult life I knew my Dad was not well, and I always had that gnawing fear in my soul that i would lose him far too soon. Sometimes I feel so lost...so completely lost. My Mama was and is my best friend. We did everything together. Went to family reunions together, went shopping together, and just enjoyed life together. I know how absolutely blessed I am to have her this long. I know what an enormous blessing to have a Mama live to be 89 and almost 90...how totally blessed I am but I still am not ready to lose her and yet i see her so frail and so not what she would want to be and it kills my soul. Sometimes I just sit by her bed at night and watch her breathe and I beg God please do not take her yet. Not yet...I know you have blessed me having her this long but I cannot live without her. I feel like my soul will fly off this planet the day I lose her. And yet I know I will remain because that is what she would want. But I have no idea how on this earth I will ever begin to fill that void...

Oh Hope, your post almost made me cry. I can tell you love your mom so much. And I read it as a daughter, not as a professional. I remember feeling just as you do, that it was coming, that my dad was actually going to die. I saw life carrying on around me and I was on the outside looking in.

I'm glad you've taken steps to make your life and your mom's life a little more peaceful. I think your mom is very, very lucky to have you as a daughter and as an advocate.

I took care of my dad in my home for 5 years until he went into a nursing home, then I cared for him there. He went on hospice and died within the same week (he got really bad really fast). A part of me was relieved but a bigger part was crushed. I loved my dad so much. He was such a good dad, such a great man. The first few days after he died I floated through my life not really feeling anything. There were things we needed to do, y'know? As it began to sink in I just felt a sharp pain where my heart is. I still feel it today just not as much.

I think as caregivers we're given a unique opportunity to be with our loved one around the clock before they die. We won't ever feel the regret of "I should have spent more time with her." We will know that we did as much as humanly possible for our parent and that can comfort us when they pass away.

My dad's been gone now for 11 months and when I picture him or remember his voice or conjur up a memory that's NOT related to my being his caregiver I still feel that pain in my heart. It's always with me, I've just learned to live my life around it.

This website was a godsend to me when I was caring for my dad. I had another website I went to but it was slow in that a question could go for days without comment but it was all I had. Then I found this one and it was wonderful! I just wish I had found it earlier.

I'm glad you're here, hope22, and I think you have a lot to offer other caregivers. I hope you'll stay.

PS...Re the drop ins...depending on how I feel at the time those occur, they get what they get. It is always the same ones who do it. I have called them when I am calm and agreeable and spoken personally with them while we appreciate their concern, it is important they call before they come. It has not worked. I have sadly learned that being polite with some people does not work...therefore, they get what they get....and that is not always pleasant ...depending on how I am feeling that day....God forgive me, but that's the way it is.

Yall make such excellent points....I find that getting on here on days like this to be such a comfort as when Mama tells me she doesn't know who I am makes me feel so alone...Our HHA is probably about as good as any, I think I am getting worn out. I went about two years on my own before admitting I needed help from an aid. I think I got so burned early on when all of my family just dropped off the face of the earth and I saw pretty quickly I was in this by myself. I felt as though they might have been of the mindset that if they came I'd ask them to do something or maybe ask them for money. I had neither on my mind. As difficult as it has been at times, just company from people from our life would have been nice. All of those people just went on with their lives as if Mama and I no longer existed, though they all told me at the outset that Mama would not want me to give up my life to take care of her. I guess them telling me that gave them an "out" of sorts and let me know in their own way they were not obligated to be there for my Mom...even though, as an older sibling, she pretty much raised all of them including putting them through school, including buying their clothes etc....I'm getting off topic here, forgive me, last night hearing that Mama didn't know me threw me for a loop again.

Re the HH aids, I did have a hear to heart with the agency, let them know early visits are best for Mama and I both, let them know that while I liked them, Mama did have a preference and while I knew they might not always be able to come, if possible, she would be preferred. I also politely called the social worker and told her I appreciated her calling but I didn't have anything I needed to talk about right now but would let her know if I ever did. The chaplain has pretty much ceased his phone contact as I think he has gotten the picture I don't need his services. Towards his latter phone calls, I felt like he was looking at a tick sheet and just making a standard run down the list of clients.

While our family is a deeply religious family, and I have a strong faith, for some reason I just did not want him in my business telling me what I needed to do at this point re my extended family (who has not been here whatsoever until just recently)...I feel like through prayer I will make the right decisions there as I know Mama would want to see her siblings...

So sad. I know how blessed I am to have Mama this long..She will be 90 in a couple of weeks. But there is something that begins to make me feel like I am being eaten alive by an impending sadness. You know it is coming, it may be soon, it may be a while. Only God knows. But to live each day the same way and facing right before me what is to come...while everyone else just lives their life and every now and then tosses out a platitude...so sorry, I know it's tough...NO, you don't know...you're busy living you life....Your family is vibrant and healthy....how quickly they don't seem to realize their lives could change and they could find themselves where we are at now. All I know is going forward, if and when my friends and loved ones ever find themselves where I am, I will be trying to find out what I can do to help them...truly help them...even small things matter when you know folks are there because they love you, not because they feel obligated or guilty.

I am rambling, forgive me, I guess i am just thinking out loud......I don't know any of you...but feel like in some way I do..God bless each of you on your daily journeys...and God bless your loved ones..

These are services through hospice, right? A chaplain, a nurse, and a social worker seem to be standard. Aides are typically optional.

When my husband went on hospice, I told them at the outset that we would not be requiring a chaplain. I asked if other family members could consult him if they cared to. They could. (They didn't.) The social worker visited once. I found talking to her very pleasant. She mentioned a schedule they typically followed -- I think she visited every few weeks but was available more often if needed. My husband was only on hospice 5 or 6 weeks and we did not have another visit from her. Aides were offered. In this agency the aides were mostly volunteers. I was already using a personal care attendant from another agency and said I preferred to continue with her and allow the volunteers to be available for others who had no other help.

Working with hospice was an extremely positive experience for me, and for my husband. I am sorry that aspects of it are troubling for you.

Whether you are paying for the services directly or through Medicare (which you paid for throughout your working lives), you are entitled to quality services. If you don't want to see a social worker, that should not disqualify you for other services. (The social worker may need to fill in some paperwork. I'd try to get through one session with her, without getting into private issues.) You do not need to see the chaplain at all, and can certainly specify to see him or her only by appointment. As for what the aides do, that is something you could talk to the social worker about. Can you please see a job description? What are their duties? Are they supposed to do light housekeeping?

As to anyone insensitive enough to complain about being tired, etc., I think I'd call them on it. "I am sorry that you are feeling tired, underpaid (whatever). But my mother is dying and I'm having kind of rough day myself. Perhaps you could save your complaining for your personal friends. I just don't have the energy to be sympathetic right now." If no one has ever addressed this issue with them, maybe they really are clueless about how rude they are being.

I feel the way you do. My Mom has Alzheimer's and is bonded with one caregiver especially. However, that caregiver, though compassionate, is in the wrong profession. She drives me nuts. The HH Agency can't always give you the same people. I've found they quit on a dime and some can be unreliable. Call them & email re your feelings and maybe focus on the type of care more, than the individuals doing it. You can give them a list of preferred caregivers as well. I hope you get the best result for your needs.

You can absolutely tell her no. You can be nice and still tell the social worker no thank you.

As for drop-in guests you can create boundaries. People need to call first and it's ok to tell them that today isn't a good day. Even if it's YOU who isn't up to a visit, tell them it's not a good day. If people just stop by without calling you aren't obligated to let them in. Thank them for coming, explain that it's not a good time and to call first next time to make sure mom is up for a visit. If people are rude enough to stop by unannounced you can be forgiven for not letting them in at that time.

Oh thank you God for saying that Eyerishlass.....it is maddening and most of my family is a very drop in and visit oriented bunch of folks...of course they are also the ones who never have to lift a finger to do anything and sure don't offer....It literally makes me angry for people to just impose them selves on me and us when we don't need them....I know Mama needs the help and I am very appreciative of what help we do get...but the chaplain, social worker, whose aim is on me...I do not need it and do not want it and every time this person calls it literally fires me up all over again. I am going to tell her I do not want or need her right now, but thanks for the offer....I guess I feel like I don't have the option to tell them no....
thanks!!

I hope you tell the social worker that you don't need her. You made a great point when you said you had lost so much of your privacy already. When I cared for my dad I remember feeling that way. We had a revolving door of professionals (PT, OT, RN's) every week, all week long. It drove me nuts. You don't need someone like that social worker badgering you all the time.

Re the light housekeeping issue, I can only imagine what any of the aids we have had would do if I asked them do any housework.....oh my...maybe it is the difference in a private pay situation as opposed to Medicare provided HHA....also I think a lot of them do as little as you will let them get away with....

It is helpful to know I am not the only one who has these concerns though I hate that you are having them too...On top of the aid issues, this particular agency has a social worker who, for whatever reason, continues to call and almost demand that I allow her to come out and see me. I don't know about others, but I do not want or need her visits, have nothing I want to "emote" about and cannot figure out why she continues to call me and try to impose herself on me. In my previous life, I was a very private person and I am still pretty much like that...so is my Mom. I have never been much of the sit and chat and visit with total strangers type and honestly if I ever do have time to sit I dont care to spend that time pouring out my soul to a total stranger...to me it is invasive and unless and until I call them I don't get it...I am wondering if they get paid extra for that counseling, but I don't need counseling....not meaning to be rude her, but we have lost so much of our privacy already and why the h**l this social worker wont get off my back I do not understand...

theyre all idiots. the absurd rate of turnover is probably in your best interest. keep trying..

Just to add, I too have home health aides in 3 to 4 times a day. And it was a godsend when I discovered they would do the laundry. I didn't know I could ask them to do that. Probably, much like Hope, I thought I had to do everything. I leave a blank piece of paper on the fridge, and that is where they are to write a list of what they are running out of. If you are lucky, like me, you get an agency with the best caregivers on earth. All agencies are not created equal, so if you must, fire them and move on and tell the new agency your expectations and ask them, "what is EVERYTHING you can do for me during your time here?" You may be surprised at the answer. Best of luck

Eyerish lass. do you own an agency ?I love your response. I go through daily nonsense with my HHA and it would be great to get the perspective of an agency.

Hope, you don't know me and I don't know you but I do know home healthcare and "light housekeeping" is part of what you pay for. Your aides should not only clean up after themselves but tidy up the area in which your mom is as well. My aides go so far as to wipe the kitchen counters down, maybe wipe the bathroom down.....this is part of the service. HHA's should make your life easier, not more aggravating. I'm so sorry that you're having such a bad experience.

And you are exactly right, the gals know what the job is when they sign on. If I got word of an aide talking to a family member about how she'd rather be home in bed she'd be called into the office for a discussion on professional behavior. Having HHA's in the home should lighten your load, not add to it.

I'm assuming that you have regular shifts based on your needs and your mom's needs and that you are supposed to have aides that show up, on time, for these scheduled shifts. When they're there, your aides don't have a personal life as far as you should be concerned. They should be professional, efficient, and friendly. Your mom should be their #1 priority while the aide is there. And when the aide is gone you should feel pleased that she's done a good job and cleaned up after herself. These are the basics. Anything less and you're not getting what you're paying for.

Just like I like to hear when one of our aides has done a good job I also want to hear about any problems so I can have the opportunity to make it right. I'm not out there in the field so I don't always know what's going on. I trust that the families will let me know if something isn't working. I know you have so much on your plate but you deserve better than what you're getting. You're paying for a service that is not being provided. You deserve to experience everything that a true professional caregiver has to offer. You should look forward to her coming and rest easy when she's there. When she's gone you deserve to look forward to the next shift.

I hope you give this agency the opportunity to make things right and if they're unable to then I hope you find another agency that demands more from their caregivers than your current agency.

I'm so sorry you're having such a hard time with this situation. This is the last thing you need to be dealing with. You and your mom deserve better. There are good agencies and good aides out there, I promise.

Thank you so much. To date, I have not complained about anything, have dealt with a lot of being late, compalining about low pay, being tired, etc. etc. but I know they have a very hard job, I realize that and I can only imagine...that being said, they know that when they sign on. So on those days when I am beyond tired, it does not help to hear them fussing because they'd rather be home in bed.

I like all of the aides however it is less confusing to Mom and better for me, if there is some regularity in the schedule. I cannot imagine that our agency ever does laundry...I have always gotten all the times together, have them sitting there waiting for them, along with the hot water, etc...when they leave I clean up all the area, etc. that just seemed to be part of it...I don't really mind as I know where it all goes, so that is not a problem. I try to be as helpful as I can be because I know they have a hard time but that is also why it is particularly aggravating when they complain. Maybe I'm just over tired today, but I have had several late appointments, missed appointments, etc. this month and because I have to schedule everything around when they are coming, there are a lot of days...LIKE TODAY, where I literally seem to accomplish nothing because of all the confusion...This afternoon I was informed the chaplain was on his way to see me. I politely informed them no he was not as I had not requested him to be here....Maybe I'm just crazy....I don't understand why it has to be so challenging. thank you so much for your response...I really appreciate it... :)

You're right, you shouldn't have to deal with aggravation from an agency on top of caring for your mom.

I am a nurse for a private pay nursing agency. We have aides. The goal is to have the same few caregivers going in and out. We realize that having different people all the time is upsetting for the client and the family. Depending upon what hours you need aides for there should always be "familiars" working with you, people you are familiar with and have worked with before. Aides who are familiar with your mom, familiar with her routine, and familiar with her schedule.
Having said that, this is often not the case as you have discovered. There are a million reasons why you can't achieve your goal of having familiars coming in. Maybe one aide took another assignment. Maybe another aide needs more hours. Maybe another aide felt a personality clash. Etc. Etc. Etc. Also, the home healthcare business is very transient. People quit with no notice. The pay is low and at times the work is very demanding. These are not excuses, just my experience in home healthcare. When dealing with the agency continue to express your desire for regulars. If it's a good agency they will do backflips to try and get you the same people on a regular schedule. Regular aides at regular times often doesn't happen immediately. Like I said, it's the goal. You might have to deal with different people in the beginning until a schedule with familiar people emerges. If you like a particular aide call the office and let them know. They should try to get that aide back with you again. If you are not satisfied with a particular aide, call the office and let them know this too. They won't send her again (or they shouldn't).

As far as shift times go there your scheduled aide should be there on time unless she calls the agency to let them know she's running late or had a flat tire or whatever but that shouldn't happen often. If it does it's the aide's fault but it reflects badly upon the agency. But people do run late occasionally. The keyword being "occasionally". This should not be a regular occurrence and if it is call the agency and complain. Being prompt for a shift is how professionals work. We've all had jobs, we all know that we need to be on time. HHA aides are no different.

As far as the supplies you have in your home unless you specifically ask the aide what she prefers (and some families do this) she should use whatever you have. If you are running low on something or are out of something it needs to be replaced and if you have aides working around the clock they are the one's who would notice if you are running out of something and they should let you know. What items the aide prefers personally has nothing to do with what is expected of her. As long as supplies are provided that's all the aide should need. She should have no opinion on what HER personal preferences are. It doesn't matter what she does at her own home. It doesn't matter what she has done in the past with other clients. She is to use what is in the home. That's the way you do things and you're the client so the aide should use what you supply her with. It's not her responsibility to give you a list of what SHE'D prefer. If this happens call the agency.

The complaining about being tired.....gray area. If you don't care for that particular aide call the agency and request that she not come back. The agency should want to know why and you should tell them. Who cares if the aide is tired? If it were my mom I wouldn't give a rat's patootie if the aide was tired except how it would affect her performance. And if you find that it does affect her performance, call the agency.

I know I keep saying "call the agency" but if they don't know there are problems you can't expect them to be solved. Give the agency a chance to solve the problems and if you keep running into issues go to another agency. And if you go to another agency try to get started off on the right foot by letting them know the problems you had with your previous agency. Issues with the aides that are not acceptable.

As far as the linens go if the shift is long enough the aide should do the laundry after using the linens. This is standard practice. Creating more work for the family after aides have come and gone is unacceptable.

But if you're with an agency that is unable to get their aides to you at the beginning of their shift and then don't call you right away to let you know the aide will be late that's a problem with the agency and if the agency doesn't value your time you need to find another agency.

I'm sorry you're going through this. You shouldn't have to. I work for a small, family-owned agency and our clients get more individualized attention, I think, then the large, nation-wide agencies.

If you continue to be dissatisfied with the aides talk with the agency. You pay a lot for those services and you should have professionals working in your home. And unless you have a specific contract feel free to go to another agency.

Not having the same people is the #1 complaint against all HHA's. I hear it all the time myself. So it's not just you. It's a shame. But when you find someone who is good, someone you like, hang onto her for dear life and make sure the agency knows how you feel.

Good luck :-)