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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...

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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Wow, you are an amazing person, your best friend is dieing, and she needs to be at peace. I did paid care giving for ten years. You do get so close to them and so protective. The good ones do anyways. Your story is so sweet. I have so many stories of the people I cared for, they brought more to my life than I ever brought to there's.
Funny thing is taking care of my mom has been so different and so much more difficult than my clients.
Probably because emotions are involved and past issues.
A clients son, called me an angle once. You truly are an angel, for doing what you are doing for you friend
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Reply to Anxietynacy
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Also one very quick thought about your friends butt pain. Could be something as simple as the anus muscles cramping, I'm not sure but I think they can cramp up, I've heard that can happen almost like a calf Chairly horses. It's just a thought. I could be completely wrong
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Reply to Anxietynacy
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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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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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Your friend is 99 years old. She has family, nearby I hope.
i think they have to call the doctor for them to arrange hospice .by the way, a lot of hospice will take care of patients in their own home. Make sure they do. No need to disrupt a 99 year old to be moved. No need to figure out how to get her to infectious disease doctor. She doesn’t need to be transported around town.
She needs protein and fluids.. she is probably very dehydrated causing her not to pee or poop.
BY THE WAY:: YOU ARE DOING A GREAT JOB! DO NOT THINK TWICE ABOUT THAT. This is what happens.
sadly, this is a part of life. It sucjs. Don’t go on the journey of guilt.
just call family and primary doctors first thing Monday morning .Do not take her to any physician Monday. Just get hospice on board. It sounds like she’s in pain when you move her.
heck they may even be able to get you hospice today.
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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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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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You are an angel. Have the family get her in hospice (either home hospice or a facility.)

The hospice RN's and CNA's (even coming around to the home can help you.)
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Reply to brandee
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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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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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Is Hospice involved?
If so talk to the Nurse and the CNA. The Chaplain and Social Worker are there as well. Part of Hospice is to help the "family" the family is whatever the patient says is family so that would include you as well.
You are doing all that you can.
When we all start on this journey we are "unqualified"
This Caregiving is a "Learn on the job" life for most of us.
What works for one person may or may not work for someone else.
Part of this community, this Forum is to Support and Encourage those that are embarking on this. For most of us the Journey ends with the Death of the person we are caring for. For some that person is replaced by another that needs care that could be a family member or if they are a paid caregiver another client.
Your friend needs you to be there for her. You have done an amazing job so far, many would have thrown in the towel long before this.
I do hope this woman has family that appreciates what you have done, what you are doing. (Not even going to get into asking if you are well compensated or not since that is not a part of your concern at this time...but I hope you are)

If Hospice is not involved PLEASE whoever is responsible for her Health and financial affairs should contact Hospice.
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Reply to Grandma1954
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Atlanta
Please give us an update when you have a chance. We are concerned for you and your friend. I hope you both got some rest and your friend is comfortable.
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Reply to 97yroldmom
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Atlantacaregive Feb 18, 2024
I talked to her son about hospice and all he said was that with hospice, there are no more trips to the hospital for anything. He said that she would just be left to die. In his defense, she has always been very well taken care of, going to the dr for every little thing. When she was in rehab, he paid out of pocket for her to see doctors outside of the facility in addition to the rehabs drs. It seems to me, being around her most, that she does a lot better mentally, when she believes we are trying to get her better. I think here lately she is starting to realize that she isn’t getting better faster than she is getting worse. She has been depressed. She wants to be busy and doing things but is non weight bearing on her right foot and that has certainly limited our activities. She says she is bored but won’t actually do anything. It’s too much trouble. I am the type that is always up for getting her dolled up and at the very least, going exploring in the building ect. She is in a lot of pain, waking me every night 10-50 times a night to get a drink or rearrange her foot. I have made at least 15 different pillows for her to float her heel with foam from her king size mattress we had to get rid of to make room for hosp bed. She gets wiggly so it’s repositioning over and literally over. She has a very bad bedsore on her heel that is exposing the tendons. She got it in the hosp when she had hip surgery in December. It’s really been the worst thing we have had to deal with. They gave her tramadol for pain. She was on oxy but that made her seriously crazy so I asked for no more. That stuff does not do her right. I’ve tried everything to make her comfortable but nothing works for long. Lord I have gotten carried away on this reply. Sorry, one thing leads to another. I could keep going, but I won’t put you through that. I feel like if I suggest hospice again that everyone will think I just want her to die. How do you encourage letting someone die? I am with her day and night and I can see the end but who am I to make suggestions like hospice? Especially twice? And what if I’m wrong and she lives another 5 years? I feel like a putz for not trying harder to “save her” when I’m doing all I know to do. Ugh. I said I was done, sorry.
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That wound is serious and needs a woundcare nurse. You need to call her PCP and tell him how bad it is. He may say call 911 and take her to the hospital. Her son is doing more harm than good. His Mom is in pain. Hospice can help with that. Even the heel can be taken care of on Hospice because its causing pain. This woman is not going to live 5 more years, not with a wound like that. Sepsis will happen and she will pass from the infection.
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Reply to JoAnn29
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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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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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Atlanta
Thank you for responding. We have been worried about you and your friend.
When was the last time her son actually saw her?

How did the appointment with the infectious disease doctor go?
Were you able to get her there?

When is her next appointment? Please let them know her meds aren’t keeping her comfortable. So sorry for the both of you going through this.
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Reply to 97yroldmom
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She needs to be in a hospice program.
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Reply to Southernwaver
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I would contact Adult Protective Services since your client is clearly suffering and is being abused by her son with his ridiculous concern involving a hospital visit for her. She is 99 and in very poor shape and in great pain. Her suffering needs to have a solution..
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Reply to Riverdale
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Boy, have I got an update! It’s amazing how much things can change from week to week. My lady goes next week to get 2 bulging screws and a plate removed from her ankle. Her heel is doing really good. And the hardware removal will help with the pain she has been in. Beyond that though…We have been working with Home Health PT, Nursing and OT. The OT has been giving her tests for Dementia/cognitive decline. Pretty extensively. She has aced every one. Even adding a few rather clever answers in addition to the obvious ones (except when they asked her for a word that started with the letter Q, she said cucumber.) kind of funny. So it’s pretty certain that she isn’t suffering from dementia or even much cognitive decline. Here is the kicker… As I have shared before, she has kept me awake more nights than I can count, moaning, yelling, needing a sip of water, foot arranged, pillow fixed and so on and on. This has been going on ever since she got home from rehab. It has gotten so bad and her going through all of that traumatizing pain and I have spent night after night going to her and doing EVERYTHING in my power to fix the problem with her literally doing this ALL night long. At least 10 times a night and a few as many as 50. Seriously. She had me running around like an idiot all night some nights. The night before last was one such night. Yesterday I called her OT and asked for some help. After hearing my side before she arrived, she started talking to my lady. I stayed quiet and just listened. Apparently what has been happening, is that she just does it. There is nothing wrong with her, she just does it and she can’t stop. What in the world?? She said it was because I would leave her at night at the rehab ( after being there to wake her up and put her to bed) and go home to sleep. I know she begged me to stay all night but I did not see any reason not to sleep at home. So she has been “ punishing” me. I begged for her to get to come home for the end of her life. I promised I wouldn’t complain. I thought I was some kind of hero. I thought I was doing the right thing. I am paid exactly the same amount as I was before she went in the hospital (35hrs) I have worked myself into the ground and I will be lucky if I don’t have PTSD when this is over. I haven’t had a day “off” in so long I can’t remember. I am hurt mostly. I thought she was my friend. I feel like I have been played as a sucker. I’ve mostly kept my mouth shut because “ why would a sweet little old lady be doing those things to you? You mean bully!” She knew what she was doing all along, at my expense. I am very resentful toward her but I don’t let it show. Not so far. When she was at rehab, from the way she was acting, she didn’t have much longer. She would roll her eyes back in her head and slobber and mumble incoherently. Like she does here at home sometimes. How do I even know when to take her seriously? I feel like I was duped into moving in with her. She can’t live too much longer…..or can she? This is a big mess and the last time I try to rescue any old people.
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Reply to Atlantacaregive
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JoAnn29 Mar 1, 2024
You leave while she is in rehab. You tell the SW you will not be there if they try to send her home because she has used you. If you r owed money, you may just have tovwrite it off.
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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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Reply to PeggySue2020
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Can you quit this job ? Or tell the family they need to hire someone so you get a break?
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