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

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Or are we at the mercy of the HH agency? Would love some feedback on this and feel certain it has been addressed however I can't find it right now.

My Mom is in hospice now and has been since December. While I have been overall satisfied at the outset, I have noticed the past month we seem to get a different aide each visit, different times of day.....it is confusing to Mama to see different folks showing up. Additionally, each one seems to prefer a different lotion, different cleanser, help them move her, help them lift her, etc. etc....some of them come in the door complaining about how tired they are from the minute they get here.

I am not a primadonna...I have always told them "let me know if I can help with anything"...and believe me, now they do....this morning they were supposed to come early and never showed up. The agency called about an hour and a half later and asked me "Does you mother have to have a bath today? " I was, by this time, kind of fed up. I asked them whether they were having internal problems at their agency as we never could depend on anyone anymore and this was not the first time this had happened. We MUST HAVE the nurse, am I required to have the aide to get the nurse? The aides are more trouble than their worth...all of them seem to need a mountain of linens, help with the process, complain about the products I am required to purchase...I am wondering if it is just this agency or what others have encountered.....I don't mean to gripe. I appreciate any help we can get...but I am always tired and if it isn't going to do anything but add aggravation to an already stressful situation I am wondering what is the point?????

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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....
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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?
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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.
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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....
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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...
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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.
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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.
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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..
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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.
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