My mother was taken to Er on January 29 with pneumonia. Age 87 and not one for doctors. While admitted to hospital I learned that she was A-fib, has ckd, and lungs are a bit rough. In hospital for 2 weeks. On day 15 she was doing well and was transferred to a senior rehab facility for therapy. In the past 5 days at rehab she has declined. Is weak, her legs/feet are swollen something bad, and is depressed which doesn’t help; wants to go home. Rehab has no answers for me and her doctors haven’t seen her since hospital. I haven’t even met her nephrologist or cardiologist so I don’t feel they are a resource to me at this time. Mom is on 5 different meds for her issues plus an antibiotic for the pneumonia. She is on oxygen too. I feel like I am stuck in a black hole with no one to get answers from. Her GP will not talk unless I bring her in which I can’t do now either. In the hospital the nurses were very helpful. On her last day at hospital she was walking up & down hall.
Where do I go from here? It seems there was a severe decline in 5 days.
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BluDragon
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That's crazy but not unusual. Have you seen any lab reports? Did anyone discuss palliative care for you Mom? Has anyone talked to you about her diagnosis and what is the plan for rehab? I assume she is not getting dialysis, so the fluids are building up. There should be a Head nurse and I would demand to see her and get some questions answered. You have the right to this information if you are her main caregiver and listed as such. Your GP is really not going to help at this point. However, there should be doctors on site who are seeing her. Find this out and see if they will talk. Be nice but insistant.
I spoke with palliative care when she was in ICU on day 2 at hospital but from there she quickly improved and was transferred to a regular room on day 4. Have not seen labs. Nothing noted on discharge papers. I am trying to get into the online portal of hospital but having issues.
I just feel helpless and lost but I will try to get answers from rehab facility. I can try contacting hospital social worker that helped me place my mom for some guidance on getting lab results too.
Not sure who the best patient advocate would be for you/her, but you definitely need somebody in your corner, somebody who knows exactly what questions to ask.
I worry about these "senior rehab facility " because they msy not have physicians aboard. What kind of therapy was she send there for? My poor sister was sent to one in the Chicago area after being in the hospital for groin pain which they thought related to a previous hip replacement. It turns out she had aggressive bone cancer and this huge rehab facility had no physicians on board and they had no morphine. Instead, what they were doing were rehabbing her on how to swallow and brush her teeth while she was dying!! My niece who is as executive in business came in and demanded they supply morphine as my sister was in excruciating pain. We found out then the place was run by a social worker and they needed to get a doctor on board to prescribe morphine. BTW ,this place costed $12,000 a month. It was a living nightmare. My sister went down hill within a week of being in this place and continued to deteriorate. Anyway, your mothe needs to get to a facility where she's being treated ny physicians. She may need to be taken back to the ER. Don't be manipulated by these "rehab facility." Most aren't medical. If they have a doctor, he usually just visits and writes prescriptions. There's no medical evaluation or diagnosis which your motherappears to need. Prayers and good wishes.
I would see about getting her into another facility. Seems like the one she is in is only in it for the money and make sure you research the new facility before putting her in there. Let them know what your expectations are. Make sure they have the right doctors for your Mom, I'm assuming you have power of attorney over her and if you don't make sure you get it,otherwise they are not going to listen to a thing you say. I went through the same thing with my mom a few years ago. Healthcare today is awful, especially for the elderly. They just don't care. Is there anyway you could keep me updated? I would like to help if I can.
I appreciate everyone’s comments, guidance, and advice. This is certainly new territory for me.
I do have POA and I am in the US/Chicago area.
When I visited her yesterday she was in much better spirits. I spoke with the head nurse but that was not 100% satisfying. She gave me her vitals readings which were good and said they increased her water pill to 2x a day to help with retention in her legs/feet. That seemed to help a bit. She also started PT and OT on Monday 5x a week. She said she rode the bike and did some other stuff she couldn’t remember but was excited about doing something instead of laying in bed. I was told by nurse that I need to speak with PT directly for details that her program is not in the system. That seems a bit messed up to me but I will speak to them directly since they were gone when I arrived yesterday.
I agree medical care for the elderly is awful. My mom is determined to get out of rehab and home. I am glad she has some fight in her. I understand she doesn’t like being in rehab; they are depressing places and my dad died in one 5 yrs ago.
I really need to find out what her CKD stage is and what stage her artery blockage is at. I want to know what I am dealing with instead of going along blind. The rehab center could not tell me so I am going to contact the hospital/social worker next. This info has to be in her medical records. It bugs me that her GP has access to this but wont share unless we come in to see him. #$$$
Everyone has given me good direction and I so appreciate the support. I am an only child so this is stressful for me. The rehab mom is at was one of the better in our area that had a room for her. They were at 3.5 stars. The 5 star rehabs were full with a 2 month wait. And I refused the 1 star rehabs!
Since you have a POA you need to demand access to her online portal that should contain her lab results and diagnosis codes and such. Also, since you have POA her primary care dr should talk to you about her conditions. They may be requiring you to come in, because of the insurance and practice rules. Dr don't get paid and cannot bill for responding to your calls and emails. I used to be able to email my Dr.s all the time. Now the portal tells me I may be charged. I got confirmation from my primary care, endo and nephrologist they won't bill me so I keep sending email questions when needed.
It often takes months to recover from Pneumonia. It sounds like she isn’t responding to the antibiotics she is on and needs them reviewed. So many ‘rehab’ places leave patients sitting in chairs most of the day with their legs filling with fluid. She needs to have compression stockings on (that fit her correctly) and her legs elevated. Find out who the most senior person is there and insist on speaking with them. If you get fobbed off threaten them with a formal complaint if you don’t get your Mom assessed by a doctor. Tell them that you want to be there when the doctor comes. There is no way that they’d want you to make a formal complaint. So much more paperwork for them than ringing a doctor. Be polite but firm. Ask for the name of everyone you speak to and write them down. You could always take her back to Energency. Even if she decided that she didn’t want treatment, rehab wouldn’t be the best place to make her comfortable
They have her left leg wrapped in gauze but no compression. She is lying in bed with feet up but elevated per se. I thought to raise foot of bed or put pillows under her feet.
When I spoke with nurse she didn’t say much about the doctor and when I ask Admin they don’t know. I agree that he is mostly looking at meds.
Her pneumonia was pretty bad but her coughing has stopped. She was on breathing treatments in hospital and I hope the amoxicillin is working; she has 5 days to go on that. She still gets out of breath if she pushes herself too much but thats expected due to her other issues.
I’m sorry to hear about your mom. Been there and had to take it one step at a time to figure it out. It’s tough to work through all of the complications while in such a state of duress and emotional turmoil.
If your mom has you listed as being responsible for her health care and decision making find her legal documents and put them on file with her doctors, the hospital and the rehab facility.
If she doesn’t have the paperwork make sure to get it all in order while she is still capable of signing everything. Once you have that it will give legal authorization to obtain your mom’s medical records and for the doctors to disclose the information with you. You also need to have a conversation with your mom if you have not already about her decisions on what methods she wants used to prolong her life, etc.
Not sure what country you are in but in the US you would be her health care proxy and you would need to have various documents that she needs to sign to allow the doctors to talk to you, have documents about various measures to take or not take to revive her.
Once you get health care proxy and power of attorney and authority to talk to her doctors It is essential to get her reports and make a follow up appointment with her doctor.
Then you can review her records and ask for advice on what if any changes in care are required.
It’s very important to make sure to get documentation on things like her level of kidney, heart and lung function. Not just for treatment but also so that moving forward if she declines to the point where she needs hospice that she will qualify for that and other levels of care that require specific diagnosis and levels.
Until you have legal authorization to gather the data and take over helping manage her care there isn’t much that you can do.
Unfortunately when people are ill hospitals and skilled nursing centers are often not resources for providing detailed medical information and advice about diagnoses, follow up care or even to help you understand what conditions they found and recommended course of action.
Institutional facilities like hospitals are there to process patients through diagnosis them and fix what they can and moving patients out if they can’t fix it. The social workers just help facilitate what options you have to get you out the door. It’s minimal service as they are processing so many people through the system.
When you get to skilled care, my experience is that it’s a temporary stop where they can either keep someone to monitor their vital signs, administer medication and any care that they can.
They aren’t there to fix anything major.
It’s just a stop until someone is well enough to go home, or move to a facility with the next level of care required.
If you don’t feel comfortable with the level of care from their doctors talk to them to see what options that you have.
If she has a good primary care doctor set up an appointment with them. Ask them to help you understand your moms labs and reports and determine what they recommend moving forward. Ask about referrals for specific specialist after you
I took my mom to a kidney specialist while she was in skilled care.
It takes a long time to get an appointment with a kidney specialist so getting a referral to one early is important. Ask about referrals for specific specialist talk to her doctors and understand her conditions. Getting her lab work and seeing a kidney doctor will help you find out more about the stage of her kidney disease.
Honestly there is so much bad information out there because there are so many factors that influence how it impacts people it’s best to see a good kidney doctor Find one with reviews that they take the time to talk to you and answer questions. Kidney disease may or may not be troublesome depending on her stage, and other health conditions. I have Afib and kidney disease, yet I don’t have diabetes, high blood pressure or obesity and I have an early stage so it’s not as problematic as if I had coronary artery disease and high blood pressure. You need to get more information about your mom’s conditions then you have
As for Afib, depending on her other conditions there isn’t much that the doctor would do until she is stable except possibly put her on blood thinner to help avoid a stroke. If she is having heart rates over 130 or so for more than an hour they may prescribe a medication to help slow the heart rate. If your mom has thyroid disease testing her levels might help if she needs to be on meds for that as the two are linked
When you are able to get her lab results, find out how frequently she is in Afib, how long each episode lasts, how high her heart rate is and the duration of it being high.
Is she is having sporadic mild arrhythmias or major long lasting attacks?
Often the doctor won’t do anything else unless it’s full blown long duration attacks lasting more then 2 hours or more and her health is stable enough treatments other than medication.
Dealing with undiagnosed major health conditions and having your loved one in the hospital and needing longer term care is difficult to maneuver through when you are already in duress.
Get help from a trusted person to identify the key information you need, find available resources and get the legal forms in place. You also probably will need to get the right to manage her finances if you don’t have that in place.
Review her health care policies to see what they will cover etc
It’s good to know in advance. In the US if someone has a major life changing event like certain medical issues that one policy doesn’t cover you have an opportunity to switch health insurance outside of the normal enrollment period.
My mom had a type of health plan that covered wellness visits but didn’t cover her care in Medicare facilities which was required for her long term care treatment, I was able to switch her in order for her to receive the coverage she needed in a long term care facility.
This probably may not apply, but just in case it is best to know this in advance rather then find out in the 11th hour and have to resolve it under duress.
In addition to her legal documents for health care and financial matters Find out if she has a will and if so where it is. If she doesn’t you may want to address that and have one made while she is still of sound mind and able to make one.
Think about what you need to know to manage her estate for her while she’s getting well and make sure everything is in place should she take a turn for the worst.
Be sure to take care of yourself and use your support network. These life issues take a toll on your health and wellbeing too. You need to remain strong to support your mom.
I do have POA. We set that up a few years back after my dad passed.
We have good specialists lined up and our appointments are in March. Mom is currently on a blood thinner, a blood pressure med, a potassium chloride, antiarrhythmic, a diuretic, and an anti blood clot med. I do worry that some of these meds do not agree with one another but she is scheduled for a blood panel before our March appointments.
Your statement, "until you have legal authorization to gather the data and take over helping manage her care there isn’t much that you can do" is very true. It's also good for loved ones to have a long-term care insurance plan. Then they can be placed in better nursing homes, rehab centers, etc. Regular health insurance plans primarily focus on short-term issues (as you noticed). And so patients run the risk of being bounced around to the hospital, to a so-so rehab facility, to a so-so nursing home, back to the hospital, and off again to the next place. Or being warehoused somewhere, sometimes very long distances away. Unfortunately, once people acquire a chronic health condition, they can't get a long-term care plan. So, it's good for those in the US to consider getting a long-term care plan for oneself sooner than later. I've done that. My hubby wasn't as fortunate.
keep calling them,theey tend to blow you off until you give up on calling.pester them until they give you what you need and dont be afraid of stepping on toes.
I spent 2 months in hospital when my peritoneal dialysis failed. I did physical therapy in the hospital which consisted mostly of walking up and down the halls. When I was getting discharged they wanted me to go to one of those rehab centers (I'm 60) and I refused and they set up PT at home for me. They also put a chest catheter in for dialysis and that really helped clear up the toxins that were building up.
Home health was considered and it is still on my mind. I had thought that the continuous monitoring of rehab would help her with moving around and keeping an eye on her new meds. She is on oxygen for now but not sure she needs it 24/7. I am also concerned about the swelling in her leg and the moisture weeping from it. It seems to be getting better so I want to give things a week and then hopefully bring her home.
Its my understanding that to get home health to check on her either the rehab center or a doctor needs to order that correct?
Yes my doctor in the hospital did it as I kept asking repeatedly. I was adamant I was going home. Every time someone says I have to go to the hospital for a procedure I get PTSD. I too had pneumonia and they had me on IV antibiotics but no oxygen. If her doc isn't helping she needs a new one.
Since we just started this journey and are 3 weeks into the diagnosis I feel her specialist doctors wont help since they have not seen her since her hospital stay.
Not sure about this step. I had assumed the rehab facility would assist with this when she left. 🧐
There are really good ones and then there are the ones who just see a body and don't really care. Dialysis centers can be that way also. Did they not make appt or referrals when she left the hospital?
I have a really good GP. I did have to make an appt with a pulmonologist which I did but he wasn't much help. There's a site called Drugs.com where you can put in the meds she's on and read up on them. I found the summary of my discharge to be more useful but there was a section with the med list. I do hemodialysis in center and once a month they do labs and I get a copy. If she has a nephrologist he/she should be doing the same and you should get a copy.
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