Follow
Share

My sister is 76 years old. She’s had a long-term lung health issue and suffers from dementia. April 16 she broke the top of her femur. They repaired it with a pin, six weeks later a new pin was necessary finally came a hip replacement. Her dementia stops her from using the call button or turning on the TV even. The nursing staff do not know her cause they moved her from rehab to full nursing and her family has not been in since she’s been there some 10 days now? For the last four weeks she stopped eating and she’s lost maybe 30 pounds how can I advocate. Any suggestions? She may be given up, feeling lost in the abandon for sure. Her beautiful eyes are becoming hollow. She complains about feeling nauseous feeling nauseous and I wonder if anybody’s acting on that maybe it’s a drug interaction or something, but they won’t talk to me. I’m not on the list. Also, her kids have ghosted me and everyone else.

With all due respect - if my FIL was still alive - I would think you were his sister. As gently as I can say this- from experience on the other side - PLEASE take a step back and work WITH your sister's children instead of against them.

My DH's aunt could have (and would have) written the post that you wrote. But EVERY WORD of it would have been wrong. We were involved every step of the way with my FIL's care, knew everything that was going on. We knew the staff, the staff called us anytime day or night if they needed us. They knew us by name.

When we stopped sharing information with DH's aunt? When she took liberties that were not her's to take. When she told anyone that would listen - including US - that we were not taking care of FIL and that SHE could do the job much better. When she bought into all of the things that he was telling her that were simply untrue. When she verbally accused my DH and his sister of not loving their father the way that she did because they weren't virtually LIVING at the SNF day and night seeing to FIL's every need. (spoiler alert - he was moved to the SNF for the express purpose of having 24/7 care not provided by 4 people who were injured and burnt out from providing his care already).

Taking a deep breath because your situation is NOT our situation - I'm going to give you the 30,000 feet view.

If you want to help your sister, help her children. Don't bad mouth them or judge them for the way they are caring for her. Recognize that frequently family members are asked by the facility NOT to visit for the first couple of weeks to allow the patient to adjust without interference. Ask her children what you can do to help. What they want you do to.

I know you want to advocate for your sister. But I can promise you that you can overstep in a way that you may not come back from. And that you may not have the full picture.

We made EVERY attempt to include my DH's aunt. And I do mean every. We forgave a number of transgressions over and over. When she called the facility and PRETENDED to be my SIL, when she lied and said that we were no longer involved, when she called and made up lies about us to the administrators in an attempt to somehow get access to FIL's information When FIL died - she told people that we weren't handling things the way SHE wanted. She was 10 hours away and would not have even COME to the funeral.

I have the LAST communication that ANY of us had with her in my phone. He died 12/21. She has not spoken to us or attempted contact since 12/23. And neither have we. The relationship is broken beyond repair.
Helpful Answer (1)
Reply to BlueEyedGirl94
Report

She is now not cognitively able to assign you as her Medical Representative (the HIPAA form you can get at the doctor's clinic). This doesn't allow one to make decisions for her but allows the medical staff to legally discuss her private info. Unfortunately, this option is no longer available.

It's possible they bring her tray of food and put it in front of her, but don't help or encourage her to eat it. So, you can try being there at meal times to see if she eats on her own (ever) considering she has nausea. And, she may also be dehydrated if she doesn't have an IV in and doesn't drink anything.

If the PoA daughter is MIA, I would ask to talk to the on-staff social worker to clue them in on the situation. They may move for emergency guardianship so that someone is legally able to advocate on her behalf. The social worker can figure out if the daughter has been responsive or not. She isn't obligated to talk to you. But your presence there would be helpful and signal to the staff that your sister is not being neglected by family.
Helpful Answer (0)
Reply to Geaton777
Report

trump01, your sister has had three major surgeries that in itself will make a person feel nauseous. It did for me, I felt so lousy that food was the last thing I wanted, and I had lost weight with each surgery, about 5-10 lbs each time. That is not unusual.


Also, for every hour that one is "under" for surgery, that will equal one month of brain fog. I can't imagine how complicated that would be for someone who has dementia.


It has always been suggested that when a person is moved into a nursing facility, for the family to stay away for a couple of weeks. That helps the person get use to the facility and to the Staff, without the family being under foot. Family can call on the phone, but I wonder if your sister is able to answer the phone since she is unable to use the call-button or turn on the TV.


Please note, the nursing home may only allow one person to be on the HIPAA form who can obtain health information, and that would be your sister's daughter.
Helpful Answer (1)
Reply to freqflyer
Report
Anxietynacy Sep 19, 2024
ff, thank you for that! Every hour and hour a month of brain fog. I'm sure it's an average, depending on brain health.
(0)
Report
Her children have "ghosted" you, you say. You are sister to this lovely woman. What circumstances have led to her kids "ghosting you" because this, of course, is abnormal behavior; it seldom happens without reason. We cannot know what led to "bad feelings, between your sister's children and you unless you tell us. Again, this doesn't happen without a reason.

If your sister has told YOU that she is nauseated, then she has/can have told the staff at her facility which is caring for her. She has been through three surgeries. She has lung problems. She has dementia. She will not have gone through three surgeries requiring general anesthesia without serious repercussions.

The family has made a decision not to share medical information with you. That is up to them. Again, I cannot help but think there is some reason for this other than that they are ALL simply EVIL.

Were this me, and I was visiting, I would simply put on the call light and say:
"Hi, I am my Sis's little sister. I notice she seems just so much more vacant, and I can see there's a weight loss. I hope you know she cannot herself know how to use her call light. Please check on her. It hurts me to see her looking so fragile. I know you are unable to share info with me, but I am just so concerned".
I was an RN. I can tell you that I FOUND WAYS to speak with family who was not badgering, and who clearly were distraught and concerned. Especially about my checking on their loved one, about whether they were stable, or whether family is correct to be concerned, she's having a hard time. So throw yourself upon their mercy.

Now as to the family:
Throw yourself upon THEIR mercy as well:
tell them.....
"I know there is water under the bridge with all of us and I am so very sorry for my part in it. I am so concerned about my sis and the fact I don't now anything is making me just so worried. She looks to have lost weight; I worry if they will know she has to be checked. She tells me she is feeling so sick to her stomach; do you suppose that's medications? Any reassurance or updates you can give me would lead me to bless your name till the day I die. I am so very worried, and can do no more than throw my hopes upon your mercy".

That's it. That is all the power you have. It isn't much. But it is all you have.
I am so sorry and wish you and Sis the best.
Helpful Answer (0)
Reply to AlvaDeer
Report

Ask a Question
Subscribe to
Our Newsletter