Suspect nobody is following up on discharge instructions for mom in MC, what to do?

TrumpetSwan

My 87-year-old mother is in Memory Care. She was diagnosed with COPD 15 years ago and she controlled it well with an inhaler and occasional use of a nebulizer at home before moving into the ALF. Other than COPD and dementia, she is in relatively decent health.

Her facility left me a message three days ago saying "your mother was in respiratory distress, so we had her sent out for evaluation". I knew that meant they had her taken to ER. She was just hospitalized for "respiratory distress" prior to Christmas which has only been three weeks ago. She tested negative for pneumonia both times. She also tested negative for heart issues and negative for infection. Prior to these two recent hospital visits, I know of one other time mom was sent to the hospital for difficulty breathing in the last four months.

My point of this post is this seems to be a pattern. I have concerns about the decision-making to automatically send an 87-year-old repeatedly to the hospital where she will become disoriented and be immobile for days in bed.

My other point is, I have a suspicion that my mother's COPD is a condition that is not being treated adequately on a daily basis. If true, then mom will be in for another hospital visit in a couple weeks - again. I fear that cycle in itself could kill her.

Honestly, I have barely recovered myself from mom's hospital visit from three weeks ago. At that time, I suspected the staff was either not trained in how to administer mom's inhaler or not giving it to her daily. You have to instruct her to hold her breath for five seconds before exhaling or the medication does not circulate to the lungs. I am unsure anyone is doing this for her.

When mom was released after the last hospitalization, I called the Director of Nursing to ask how mom's condition was being managed. She was very abrupt in attitude and began to record the call because I heard a computer voice say, "this call is being recorded." The Director of Nursing told me she accidentally hit a button on her phone with her cheek. She did not even admit to recording the call. That sent off red flags to me. I thought that was overly defensive, and it felt a bit hostile.

I no longer wanted to be on the call, but I did ask if she was comfortable that staff knew how to manage mom's condition on a daily basis, and she replied that she did not know off hand what mom's plan of care was, but that the staff there is trained on an ongoing basis and audited and that staff is skilled in how to care for those with COPD. It was a generic non-specific answer. I just said goodbye and ended the call.

It left me having no confidence in the staff at the ALF.

In addition to that, just yesterday I was at the hospital with my mom and talked to the respiratory specialist who was doing rounds. He said my mother needs to see a specialist as an outpatient after she leaves and should be on a schedule of medications to manage her COPD - not just using the inhaler. He further said those instructions would be in her discharge papers. I suspected similar instructions would have been in her previous discharge papers a few weeks ago as well. So, it made me think nobody is looking at mom's discharge instructions and nobody is following up as she needs.

This doctor also knew mom had just been there, and he agreed with me about my concerns about the cycle of bringing an 87-year-old into ER repeatedly. He said it was time to take a different approach and stop the cycle.

I am not POA. My mother's other daughter is POA. Nobody reaches out to me to coordinate plans, so I am somewhat at a disadvantage in how to influence any better outcomes.

Does anyone have any advice on next steps? It is so hard to sit on the sidelines without any official decision-making role.

Thanks.

cdgbdr

You are in a tough spot if you are not POA. Could that be part of the reason they provided you a generic answer? If you can team up with the POA to address your concerns with the facility, that would be good. I agree the cycle needs to be broken? If she were on Hospice, that could help, but she may not qualify or your mom/POA may not want it. It's entirely possible that they are not following the instructions, mom may not be able to, or her condition is really getting progressively worse. Good luck!

TrumpetSwan

Thanks, but I guess this leaves me no course of action. It is hard to just stand by and watch.

I honestly got the impression the DON did not know mom's status. She even told me she did not know specifically, so I do not think she was being evasive since I am not POA.

The one with POA lives out of state. She would be unable to pick up our mother when she is discharged and would not be present to review the discharge plans with staff. I know she could do it remotely, but it is a gap to me on how the discharge plans are getting from the hospital to the staff at the ALF.

Last year, I noticed plastic bags accumulating in the corner of mom's room. I thought they were garbage. I then went to throw them out, but realized the plastic bags had the hospital logo and contained mom's clothes balled up inside with random forms from the hospital and a couple cards of physicians. It appeared to me that mom had been hospitalized a few times, released, and nobody went through her belongings. It looked as though a third party transported her back and where they left her belongings is where they remained untouched.

There was a different DON last year, but at that time, I did ask her about the forms I found and the follow up and asked who "had the ball to carry through the plan". She just looked at me blankly and stated procedure is the hospital tells the staff at the ALF directly. It seemed wrong to me. A couple months later, that DON was no longer employed there.

Ugh. I guess I just have to let it all go. This is so hard just doing nothing. Thanks.

Quilting brings calm

My mom and step-dad both had COPD. It sounds to me like your mom needs to be on oxygen, not just an inhaler. That would have to be prescribed by her doctor and a medical equipment company would be involved in getting her the equipment. The AL staff would then be involved in making sure she actually used it. My mom had to be continually reminded to go back to her apartment and get her portable oxygen equipment because she kept showing up in the common areas if the AL without it.

terei

It sounds as if your mom should be in full nursing care and not MC. Repeated trips to the hospital dont seem to be improving her condition. I would contact hospice and have her evaluated. If you are not POA, however, this should be done by that individual.

SDianeL

it seems you are still having issues with the facility that you are not able to handle because you are not POA. I would contact your sister and have her handle it. So sorry you’re still going through this. 💜

MN Chickadee

Using an inhaler with a spacer (or oxygen or anything else) will be increasingly difficult for her, even with the best staff oversight. Following directions and paying attention to the little details are difficult in her mental condition. I would be careful of blaming the staff when it is extremely possible that dementia just makes the use of an inhaler and nebulizer difficult or impossible. You still rely on them to care for her 24/7, you don't want to make enemies when you don't know for sure the entire picture and you simply can't because you aren't the POA. The facility is legally required to keep sending her to the ER if she is in distress until she is on hospice, I would ask your sister to look into that if it were me.

sandwichone123

It's really hard when the pwd and poa are not in the same place. She may need to move closer to the poa to receive appropriate care.

harshedbuzz

@TrumpetSwan

I am so sorry you find yourself in this situation— caring much but with no voice in decision making. It well and truly sucks.

I don't have any advice, but I wanted to comment on the COPD treatment piece and the opinion of the respiratory therapist. My mom has moderate COPD; she is normally treated with a single inhaler (Trelegy Elipta) that has 3 different medications combined. It's possible your mom is/was appropriately treated with a single inhaler when not suffering an exacerbation. When she has an exacerbation, the hospital is where she can access the IV steroids and different steroidal nebulizer treatments. Upon discharge, they no longer (changed sometime last year between March and December) do an oral steroid taper as best practices— they do a set 30 or 40 mg (often in the hospital) and stop. Perhaps the RT is raising an alarm unnecessarily although I agree that seeing a specialist would be best.
HB

Victoriaredux

Doesn't sound like the right person was selected as HCPOA. I didn't go back and read your prior notes to see why you don't/can't step into that role . If you can't or don't want it , really consider if you should try to get the HCPOA to get a local case manager for your Mom . If the HCPOA won't put in the effort you could refer your Mom to Adult Protective - it sounds like she is a being neglected - the home can't provide detailed case manager level oversight. Maybe the threat of that referral will rouse the HCPOA to save face and hire a case manager.

Sounds like the current home is using the hospital for CYA visits to cover for the MIA HCPOA . Maybe they tried to get the HCPOA to ramp up and were told "I'm busy -don't bother me "and they are as stuck as you are.

You're in a tough situation now since you're documented at the hospital for knowing more care is needed - yet you have no official power so to protect you, I'd talk to an elder law attorney about options if you can't get the HCPOA to step up or hire a case manager .