Dr. said he meets qualifications of hospice. His wife choose Palliative care. She seems to deny his condition and is constantly nagging about doing your exercises. He had a stroke a yr ago and again in Jan 2018. He was in skilled care for 6 weeks. He hasn’t walked in a year, has a broken leg from Jan they couldn’t fix and his decline this time is severe. 2 days after he for home, almost 2 weeks ago he is so weak. He has ask voice but he recognizes everyone and is happy to see us. The wife is POA and refuses to allow us to talk with his Dr or care team. She said PT came to the home today and his hips are sore and he has a shoulder with a lot of arthritis so through can it cortisone shot in there before he left hospital. She says he won’t get better if he doesn’t try. Well he is all bones, can’t turn over himself, has catheter, permanent one, and he hasn’t gone to a bathroom in months. He eats very little and mostly cuz she demand that he does. I just want him to have peace and to stop hearing how lazy he has always been. He was scared the days he was in hospital but that seems gone, he just more calm and just trying be as ok as he can. He has CHF and stroke history. I believe he has one from the 2 pics sent in last 2 days now left eye drooping and almost shut. Any advice? She hasn’t answered phone in 5 days and didn’t let me and kids see him this weekend /Memorial Day, I admire her care in some ways? She’s there day to day but why can’t we even talk to Dr? My Dad wouldn’t want that.
I'm wondering if his wife is fearful that if you see your Dad that you will try to force her into admitting him into nursing care. You say his wife so I am assuming she is not your biological Mother. If you want to see him I don't see how she can physically stop you barring a restraining order. POA does not mean she can stop your Dad from seeing his children if he wants to. Don't phone. Drive over there if you can.
I’m so sorry you can’t visit with your dad or speak with him over the phone.
Your step mom is likely so worn out she can’t see the trees for the bushes. I’m sorry your dad has to hear her unfortunate choice of words that I’m sure she thinks are to “encourage” him. She’s probably scared of losing his income as well as scared of losing him.
A good friend of mine called me one day from an airport. She was crying so hard. I couldn’t imagine what was wrong. Her dad was dying and his wife of about five years had moved him to Florida. They had all lived in Ohio.
He was unable to respond and the wife was a screaming banshee when the doctors or nurses said anything about his condition in front of my friend. “I’m the wife! I’m the wife” she would scream. “She’s not even his real daughter “
My friend had been raised by her dad and legally adopted after she was grown. She was totally crushed at the way her relationship had ended but had to accept that her dad set it all up and there was nothing she could do.
When she left she knew it was the last time she would see her dad and that she would not be advised of his burial or his estate. Her mom had died years earlier and her dad seemed to fall madly in love with this woman who was soon wearing her mothers jewelry and shutting her out.
Life can be very hard sometimes. We have to remember to make each day count. Come back here to vent. You are wise to honor your dad’s choices even when they are so hard.
I am surprised that the Palliative care hasn't told her its time for hospice. Not being able to swallow is a sign Hospice is needed. Having him to therapy has to be awful for him. Do the Palliative people know he broke his leg? I ask this because my Mom had therapy a couple of times. Once I was asked questions about her physically the next time they didn't bother I had to tell them. Mom had broken her shoulder years before and was not able to reach that arm over her head. She also suffered from neuropathy in her ankles. Important thing to know when having therapy.
How can she work with him this sick. Not sure how Palliative care works but Hospice someone has to be there 24/7. Doesn't have to be her could be an aide. I know Hospice only has an aide for bathing and a nurse a few days a week. Constant care is not provided.
I think you r being nice here. I think this woman is controlling. You said you had a good relationship with Dad until she moved him away. And talking about money to your kids...a no no. All you can do is try again to see Dad. Tell her how much you appreciate what she is doing. Lay it on thick but let her negative comments roll off your back. Your there for Dad. Once he is gone, you owe this woman nothing.
There's another possibility, one which I first thought of: a sort of, variation of Munchausen's by Proxy. She's not deliberately making him ill.... or is she? She's not playing the heroic savior, but she's definitely not caring for him properly, or safely. She doesn't meet the disease standards, but she's exhibiting jeopardization of his health and being the sole caregiver to cure him. Whatever, she's definitely not helping him and not seeing the whole picture.
I also don't understand how she can work and with hired caregivers provide the monitoring and assistance he needs. Perhaps she fails to recognize that. I also couldn't help wondering if, like another poster here has been explaining, she suffered a loss with an earlier family member and now is insistent that she won't allow that to happen again (although she's pushing your father toward the end very quickly).
Has she always hovered over him and been this insistent and "hands on" when it comes to his care?
From your description, she seems to feel that her efforts can improve his life. But she's increasing his risk of aspiration and death, while allegedly trying to "improve" his condition.
He has dysphagia, a swallowing disorder that can cause choking and aspiration. Her forcing him to eat or drink is going to put him into aspiration pneumonia, or even worse and more traumatic, cyanosis. That's happened to my father, who was also dysphagic. And fortunately I had already taken him to the hospital so he was in the presence of a speech therapist, nurse and internist when his face turned blue from choking on food which blocked his airway.
You wrote: "
She was "pouring liquids in mouth when he was not alert …" That's unsettling, and frightening, and IRRESPONSIBLE.
Treating someone with dysphagia requires learning how to do so, including recognizing that NPO means that - nothing by mouth. The nurse's advice was very appropriate, yet stepmother seems to be ignoring it. That's frightening, but also seems to suggest that she's determined to do things her way and feed him, even though he shouldn't have food at all.
Cyanosis is an immediate life threatening emergency. If she doesn't know how to suction or have suctioning equipment, or clear his airway, EMS might not be able to save him. (And suctioning is NOT for the faint hearted. I tried it once but couldn't do it.)
As to getting better through "trying", dysphagia can be an end stage factor. The alternatives to eating are, as explained to me three times (hospital, rehab, and palliative care consultations): intubation and feeding tube. Younger people can recover, but for older folks already in decline, curative options aren't available. Shaker and other exercises can help, but they can also fatigue someone older and in poor health already.
From what I read, your father would be better off with hospice than palliative care, which is a form of comfort care for chronic medical conditions but which doesn't address end of life measures per se, as hospice does.
(I'm breaking this up into two posts b/c it's getting so long.)
Other options:
1. You don't need to have proxy authority to contact the home health care agency and express your concerns. They shouldn't release information to you pursuant to HIPAA, but that doesn't mean that someone won't take your concern seriously.
2. Do the same with your father's medical team. Same restriction on release of information would apply, but what you're doing is reaching out beyond your stepmother to the doctors, indicating/inferring/questioning if proper medical treatment is being administered by your stepmother.
There might even be the possibility that attempting to feed a dysphagic, NPO patient might be considered abuse.
If you want to, copy other doctors on the letter; and hand deliver them. That'll get more attention than texting or e-mailing.
Or do it anonymously, b/c stepmother just might cut you out completely when she becomes irate that you're challenging her care.
From your description, stepmother is going to insist on her style of "management" and not only alienate her step sons and daughters (?), but solidify her control.
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