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I am CG for a 99 yo F. Have been for 8 years. Her previous caregiver, my best friend, gave me this job when she got married and moved. I was more of a companion. Taking her shopping, ect. I have no medical training, however, my lady, in the last two years has had a hip replacement and two revisions and I helped her recover from the first two successfully. I moved in with her during Covid to help with the first revision then went home after a few months. I’ve been to every Dr visit, know every inch of her body and up until now, I was very comfortable with the care I gave her. This last hip revision is different. She developed a pressure ulcer in the hospital on her heel, it wasn’t open when we were released to a rehab facility. We floated her heel constantly but it kept getting worse. About a week in to rehab she had a GI bleed. The rehab nurse said it was hemmiroids but she later went to the ER where they found 3 ulcers and a hernia. They fixed those and found lesions in her hip. Cancer. Her family made the decision to not do any aggressive treatment. We went back to rehab. She was never the same. Her hand looked like hamburger meat from the icu drawing blood and she would have panic attacks at the mention of taking meds. She was on so many. The anesthesia made her mental condition so much worse. She has always been sharp as a tack and witty and funny. Rehab released her to just come home to be comfortable and I gladly agreed to take care of her 24 hrs a day, until the end. I DONT KNOW WHAT TO DO FOR HER! She can’t talk she just mumbles, she doesn’t eat or drink enough to keep a bird alive. No peeing or pooping hardly. She just grunts. I know she is dying. I’ve never been in a situation like this. I’m trying to keep her calm. I have propped her heel up every way imaginable, but now she is yelling her butt hurts so I’ve got her on her side now. AL won’t take her because of the pressure ulcer and when I looked at her butt I didn’t see anything except she does have a boney butt bone. She keeps grunting and I’m having to guess what’s wrong. I keep cycling through the Same things, water, raise head, prop heel up better, cushion back, hold hand, more covers, less covers.She is my best friend and she deserves someone taking care of her better than I can but right now I am all she has got. We go to the infectious disease dr Monday. The wound guy referred us to them because her heel was progressing so quickly. She keeps looking at me and I swear she is wondering how she ended up with someone so stupid. She has been so good to me and made me look so cool just because she is so cool. What can I do for her? I can’t understand most of what she is saying. This is the worst, by far, of anything I’ve ever gone through. It doesn’t look like we will get any sleep tonight either. I don’t know what my question is, I have so many...

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There isn't a lot you can do for her at this point. If the plan is that she wants to die at home, that's not impossible. She needs to be receiving hospice at home then there will be nurses showing up and social workers. Express your concerns to them about not knowing how to care for her and how you're expected to be the only one caring for her.

I've worked a lot of in-home hospice cases and to tell you the truth being mentally prepared to be there every day.

Also, you are not all she's got. You mention her having a family. You mention her receiving hospice care. Talk to the hospice people about your concerns and demand from her family that they brign in more help.

Please I apologize in advance if what I'm about to say you rubs you the wrong way. Know that I'm speaking from 25 years of experience as an in-home caregiver and many of my cases were hospice ones.

You have no experience caring for someone with serious needs. Now is not the time to be a martyr and take on the care of a 99 year old dying of cancer 24 hours a day.

The family very very likely toss you out to the curb the day she dies. They're not going pay you any kind of severance pay or do you any favors. The never do. If these people have left you one-hundred percent in charge of all of her needs for so long including all of her doctor's appointments, they really don't care about her or you.

It's time for you to go and her family can put her into a proper hospice facility. She's expecting you to know what to do for her and you're flying blind here.
If you want to stay, demand that her family hire more help because it's too much for one person to handle on their own. If they refuse you have to go.

Another thing, if you stay on and I strongly recommend you don't, get a document drawn up and signed by whatever family (with witnesses and a notary present) member is in charge, on how long you will be allowed to remain in the home after she passes. This is important.
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Reply to BurntCaregiver
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Dear Atlanta
Is your friend on hospice? If she is on hospice call the hospice nurse and let her help guide you.

Do you think she is in pain? If she is not on hospice and is in pain perhaps you should call 911 so she doesn’t suffer. It sounds like she should be on hospice so she could get the meds she needs to be free of pain. Perhaps the family could make arrangements to move her to a hospice facility.

Don’t blame yourself. She needs medication to help her manage her delirium or pain or whatever is causing her to be so agitated.

I am sorry you are alone. Reach out for some help. Let us know how things are going.
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Reply to 97yroldmom
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Where is hospice in all of this.
You are caring for a dying patient and you do not mention medications to keep her comfortable.
YOU NEED HOSPICE.
You are not comfortable giving the care currently required of you, and you should not continue to do that.
Let the family know now that you cannot continue and must be replaced. If they do not have Hospice be certain you recommend they speak with the doctor about it.
Basically, when someone is dying it is specialized care. With Hospice support you could do this as it is only medicating and turning and comfortable positioning and etc.
But you should not be expected to act as caregiver when you have no training for the situation you are placed in and are uncomfortable with it.
Speak to the family at once.
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Reply to AlvaDeer
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CaringinVA Feb 3, 2024
"Basically, when someone is dying it is specialized care." So true.
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The son is refusing to put his mom on hospice care because that would mean no more trips to the hospital. What a ridiculous man this woman's son is. He would rather his mother suffer and be in pain and filled with anxiety. Truly sad and sickening on his part.

I have to say at this point your being there is making it so the son does not have to take the necessary steps with his mother, which is that she needs to go on hospice care.

Your friend is 99 and with that wound on her heel she will not live another 5 years and even if she did I don't think you are going to make it care giving for her for another 5 years. You might very well suffer a serious stroke or heart attack from the lack of sleep and stress of caring for her.

Her son is seriously taking advantage of you and more care giving help needs to be brought in. It doesn't matter if your friend wants it or not you cannot be her 24/7 care giver. It is just impossible at this point.

You need to tell the son this and unfortunately next time she goes into the hospital you may have to back away and stop your care giving help. I hope you have the courage to do that for your friend and yourself.

I am glad you have your own home to go to once your friend passes because once she does you will no longer have a place to stay.
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Reply to anonymous1768885
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Southernwaver Feb 19, 2024
I agree and you can explain it to her that you have to step away to force her son to get her proper care.
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CALL DR NOW. GET TGEM TO GET YOU HOSPICE. My hospice team was good.

social worker told me they will help you through this.
they will bring on medical bed, diapers, everything you need.
Hospice will set up a team for you.
i had a hospice musician come in.. who knew?
I had a chaplain come in and just talk..
I had the whole team.
YOU WILL Have support. I seriously doubt they will turn you down.
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Reply to MAYDAY
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Call hospice TODAY! They are available 7 days a week 24 hours a day.
You are doing the very best you can and that is all any of us caregivers have done or are doing, so don't best yourself up, but instead be proud that you've opted to stick it out with this person your friend until the end.
Having hospice on board will have a nurse coming once week to start(probably more for your friend since she has a wound)aides to bathe her at least twice a week(even if it's in her bed)and she will have access to their social worker, chaplain, and volunteers all covered 100% under her Medicare. Plus they will supply any and all needed equipment, supplies and medications, again covered 100% under her Medicare.
I wish you the very best as you take this final journey with this precious lady.
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Reply to funkygrandma59
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You are right in understanding this is not for you. She needs to be in hospice. Are you her PoA? Who is handling/managing her finances? If she doesn't have a PoA then you may need to talk to social services so that someone can legally make decisions for your friend.
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Reply to Geaton777
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Even Certified Nurses Aids (CNAs) r not medically trained. They cannot give shots or give medication.

Your friend now needs more care than you or anyone can give her. If she has family, they need to be called in to make decisions. If not, you need to call Adult Protection Servives (APS) to take over her care. You have no legal standing here unless she made u POA. She seems to now need Hospice care and doing that "in home" is 24/7 care.
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Reply to JoAnn29
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BurntCaregiver Feb 3, 2024
@JoAnn

I can. CNA get medication certified all the time. CNA's can also become an APCNA which is on par with being an LPN only it takes less time and the schooling program is way cheaper.

If someone is private-duty they can give a person their medication. The nurse explains the meds and the caregiver follows the directions.

The family not bringing in more care is terrible. No one person can manage such a care situation.
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Thanks for the update.

My goodness, you haven’t stopped with this woman. Please do not overextend yourself with her care.

Take care of yourself and get proper rest.

You have been very good to this woman but you don’t have to continue to care for her.

Let others take over caring for her for the remainder of her life.

Sending hugs and support your way today.
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Reply to NeedHelpWithMom
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Where is this clients family?
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