Is there any benefit of getting mom to a specialist for her COPD at this point?

TrumpetSwan · February 8

Mom is 87 and in MC for over one year. She has dementia, COPD and newly diagnosed early-stage heart failure. She also recently is on oxygen for her COPD.

In addition to all of that, she has limited mobility from a recent fall in memory care where she broke a hip and is now getting around in a wheelchair and shuffling her feet to move around. She is aware of the date, knows where she is, and always knows who I am and will ask about details of my life. She has made two good friends in MC who she eats meals with.

Her other daughter is POA. I am estranged from her. Nobody shares information with me since I do not have POA. Recently I got a text from my sister saying she had an update on our mom and was willing to involve me in the details if I wanted. So, we re-engaged on topics of our mother's care.

I found out some details of her care that had me a bit appalled, but I am not going to lay blame now. I noticed the facility was on a cycle of calling ER each time mom's COPD symptoms spiked. I suspected the staff at the facility was not managing her medications correctly. When I met with my sister and a social worker at the facility, she talked about getting hospice for my mom. I asked the social worker for medical conditions that her suggestion was based on. She could not tell me what stage of COPD or Dementia my mom is in. She did not know the daily meds mom is on. My sister did not know mom's daily medications either. The social worker just said mom is very tired, has loss of appetite, loss of interest in social activity, and recently had aspiration pneumonia.

I asked about what happened to the discharge orders in the past months when mom has been hospitalized. The social worker said they will administer the recommended medications, but the family needs to arrange the appointments to the specialist for her COPD. So, eight months ago mom was supposed to have been seen by a pulmonary specialist but there was no follow up. My sister said she got the discharge papers, and always handed them over to the staff in MC and never read them.

I saw a gap in mom's care with lack of follow up from the POA. The social worker said "we are always behind in your mom's care". I asked why. She said mom changes daily. I feel like there is no one with any oversight running the ship. I also wondered if mom's COPD would be better under control now if she had been seen by a specialist months ago?

I feel like no one has oversight and no one is running the ship. Mom has declined, with no specialist, and they are suggesting hospice because it is more than they can control.

I am torn between two things: 1) getting her to the specialist she should have seen months ago for proper care of COPD or 2) stepping back from trying to be a hero, and just let nature take its course.

Do you have any insight for me? Would it even matter at this point to get mom to a specialist?

If we just go the route of hospice, what are the best things to ask hospice to do for her care in this situation? (It sort of seems like they would only do what the staff currently is doing… manage symptoms and not go to ER.)

Thank you.

Maru · February 8

In order to know what to do, the first thing is to know why your mom is in MC. Generally, MC means that her level of dementia has reached a higher stage, or at the very least is wandering and assisted living is no longer an option.

It does sound as if no one is steering the ship. Either you or your sister need to sit down with the nursing staff, (not the social worker) ,see her medical records, determine what meds she is on, and so on. If Mom is in the later stages of dementia, does she have a DNR? If so, then it is time to consider hospice. Hospice could help you determine what to do about COPD. If she is not on hospice care, then the COPD decisions fall to you and your sister. That will entail, talking about do you want to do care that extends life or just care that keeps mom comfortable. I am still a long time from having to make those hard choices, but early on my DH and I discussed them.

I feel for you, I truly do. You are in a very hard spot. I encourage you to improve your relationship with your sister as much as possible in order to keep the lines of communication open.

TrumpetSwan · February 8

https://alzconnected.org/discussion/comment/265583#Comment_265583

Thanks, Maru. Good points. When my sister arranged the meeting with the social worker, she thought the individual was a nurse. It was not until we began the discussion that we found out what her role was. It was more evidence of bungling by my sister, but I bit my tongue.

The follow up after that meeting was for us to speak to the nurse on staff about mom's care and to also speak to a hospice nurse and compare what the options on the path forward are for each. My sister said that she had met with the medical team there a few weeks prior, but all they gave her was list of medications mom is taking which was very long. My sister could not answer what mom's current care plan is. She just tells me nobody ever returns her calls.

As for why mom is in MC, I was never informed by the facility specifically. She and dad moved into the assisted living section for a few months before dad died last year. They did report mom had been wandering and showed a lack of 'situational awareness'. It was obvious she had cognitive decline for a few years prior. However, beyond that, what I know is the night dad died in their unit in assisted living, my sister immediately moved my mom into a room in memory care. I saw my mom the following morning, and she was in a temporary room awaiting her permanent room to be re-painted.

There is so much here about what my sister has done that nauseates me, but I am trying to keep that all on the back burner. There is a reason I am estranged from her.

blueheron · February 8

My mother had COPD and stopped seeing a specialist because it’s a progressive disease and there was not much he could do for her. If you want to break the cycle of going to the ER from the MC I would definitely sign her up for hospice. You can always revoke it.

H1235 · February 8

Does this facility have any kind an on line patient portal. I have found this to be quite helpful. It might be worth asking about. In Al I could send the doctor messages, in the nursing home I can only view her chart. I have not dealt with hospice, but it’s my understanding they can streamline care and help with communication. It might not hurt to do the hospice evaluation to see if she even qualifies and then use that information to make a decision. If you can hold it together through this with your sister it might be worth asking if you can have hipaa rights so you know what’s going on. I also have a very very difficult sibling, but fortunately I’m the one with DPOA. Even still he causes so many problems. I would consider what you think your mom would want. Is she a fighter that would want to live a long as possible or would she put a greater value on quality of life? Even with medication for depression, my mom has expressed many times that she hopes she doesn’t have to live like this for very long (she is still stage 4). What is her quality of life like now. I can understand wanting to fight and do everything you can for her, but the end of dementia is pretty ugly (actually all of it is). Would a specialist visit prolong her life only to cause her to suffer more. You should also keep in mind you may not have a choice here since your sister is DPOA. If your sister puts her on hospice, you can’t take her to a specialist. You might want to psych yourself up for accepting either outcome.

TrumpetSwan · February 8

https://alzconnected.org/discussion/comment/265595#Comment_265595

Thank you. These are good aspects to consider. I will ask about a portal. As for her quality of life, it is poor. She is a strong fighter by nature. However, I believe if she knew she would be in this current state 15 years ago, she would have said to let nature take its course and not prolong things.

She now has three conditions that are degenerative with no cure: dementia, COPD and heart failure. On top of that, she has limited mobility and is double incontinent.

She has anxiety most days and tells me, "don't let me die". I will leave her to get her blanket, then she will tell me not to leave because she thinks she will die if I walk away. She is still showing signs of fighting onward. She tells me she is scared and I reassure her she is safe, but I wonder if she is recognizing she is slipping away and is scared of that.

Quilting brings calm · February 8

Both my mom and step-dad had COPD. Dad did not have a pulmonologist, Mom did. Pulmonologist monitored her, but it was a visit with the family doctor that triggered putting her on oxygen. Oxygen, inhalers and a nebulizer ( mom didn’t need that) are the treatments for COPD. It’s progressive, and there’s not a whole lot to be done other than the items I mentioned. Put your mom on hospice, make it a point to be around when they are. They will take over your mom’s medical care and coordinate with the facility nurse. Do not expect the social worker to know anything about your mom’s medical care.

Your sister is not performing her POA role correctly. Does she also have medical POA? There’s not really anything you can do to make her perform better without going to court for guardianship. I wouldn’t do that at this late stage. I’d just ask your sister to allow you to discuss mom’s treatment with hospice. Hospice is a good thing. The hospice nurse will focus solely on your mom when they are with her. She will get better care.

SDianeL · February 9

Sorry you are at this point with your Mom. in addition to COPD and heart failure you mentioned aspiration pneumonia. That usually means swallowing issues. When my DH reached that stage I made the difficult decision not to treat the pneumonia because it would happen over and over and require transport to the ER and possible hospitalization. Why would I put him through that? Many PWD’s cause of death is aspiration pneumonia. I would definitely get a hospice evaluation. I would not take her to a specialist. It will only prolong her suffering. Hospice only does comfort care. They may stop all medications that are not necessary for comfort. Hospice offers so much help. I wouldn’t mention hospice to your Mom though.

TrumpetSwan · February 9

https://alzconnected.org/discussion/comment/265612#Comment_265612

Thanks, Quilting. Thanks also for at least recognizing my sister is not performing her role as POA correctly. I have posted about that specific aspect here previously. It has been one of THE most agonizing experiences to see where I believe she dropped the ball either by poor decision making or just by plain neglect and lack of follow up. When I saw her recently, she seemed to show an overall lack of empathy for our mother and literally looked at her with her lip turned up. She seems to have contempt and no grasp of her responsibilities.

I agree with you about it being late to go after guardianship at this point. I thought about it earlier, and got a couple opinions from lawyers, but they each told me it is a time-consuming and costly process that requires clear proof of wrong-doing and ultimately up to the decision of a judge. Bottom line, there was no quick fix. She is the oldest child and my parents just loved her and trusted her. Yes, she is POA for health and financial. I have had no voice in anything. (Sometimes I ask myself why I should even become involved now. Am I an idiot? A fool? The only answer I have is that it is hard to see a ship go down in flames and not attempt to at put some water on it.)

Thanks also for stating your own parent's experience with COPD. It makes me feel better about mom not seeing a specialist. Right now, mom is on the treatments you state for oxygen, inhaler and nebulizer. One doctor at the hospital during a recent visit mentioned oral tablets for maintenance, but who knows if it would have had much of an impact. There is a meeting with a hospice nurse today to do an evaluation which my sister invited me to, so I will see what plan she lays out.

TrumpetSwan · February 9

Thanks Diane. The hospice nurse eval is later today.

Mom did get aspiration pneumonia over Thanksgiving. Like your husband, I knew that meant mom's dementia had progressed to her now having swallowing issues. I also figured it is likely to occur again. Also, why put mom through a hospital visit repeatedly. My plan is just to tell mom "we are thinking of taking a different approach to treating your COPD where you won't be going to a hospital again."

Maru · February 9

https://alzconnected.org/discussion/comment/265591#Comment_265591

Families can be tough. If your mom was wandering, that is all it takes to be moved into MC. I am keeping you in my prayers this day.

MN Chickadee · February 10

"She now has three conditions that are degenerative with no cure: dementia, COPD and heart failure. On top of that, she has limited mobility and is double incontinent." Think about that statement. Those are all big deal terminal diseases at her age as well as issues having impacts on quality of life. Bringing her to specialists is likely to do very little other than be inconveniences and stressful. I would focus on comfort care. Hospice can help with that anxiety and fear she has having. They will find the right meds to help ease her mind and make her remaining days less stressful and scary. I know how hard it is to let go and accept that it is no longer the time to do everything you can for these issues. Nothing about this is easy and regardless of what happens you will be full of what ifs. But given all these issues for which there is no cure there comes a time to stop interventions meant to extend her life as long as possible and focus on the quality of her remaining days.

harshedbuzz · February 10

@TrumpetSwan

If you were my friend IRL, I would offer you a hug and an ear. The position you are in— of being very much a loving daughter with no input on care is supremely difficult.

That said. A couple of thoughts from the DD of a woman (no dementia) with CHF, COPD, aspiration who is not routinely compliant and means to live forever:

Heart and lungs work together in your mom's specific combination of conditions. You cannot tease out just the COPD portion for treatment from either the pneumonia or the CHF because of their similar mechanisms of action and symptoms as it relates to oxygenation. Because the conditions complicate each other, seeing a specialist might not improve her breathing. My own mom is stuck on her COPD blaming it for her current need for supplemental oxygen, but both her pulmo and I suspect it's the progression of her CHF that tipped the scales this time. You'd need to round her to both specialists and even that might not bring clarity aside from a plan to supplement with O2.

My concern would be how the hypoxia impacts your mom emotionally. Most of the time, my mom does not register how hypoxic she is nor does she have any reportable SOB. But on the rare times she does, being in the hospital on treatment (IV steroids and powerful nebulizer treatments) we can't access at home is a comfort to her.

HB

TrumpetSwan · February 10

Thank you, Chickadee and Harshed.

When I step back from the emotions of this, I do agree it is time to stop chasing an intervention and just make her comfortable going forward. Harshed, I will gratefully take the hug and the ear and say thank you for seeing through all of this that love is very much present. Recognizing the supreme difficulty of the situation I am in is also helpful because I have felt completely invisible and irrelevant and wondering why I even remain hanging around (I still don't have an answer for myself on that.)

Realizing the combination of the CHF and COPD is a good point. We met with a hospice nurse for an eval, and I told my sister (as the POA) that I agree to signing mom on. The more I think about it, this cannot happen soon enough. They will meet mom at her current state and make her comfortable which is the best I think we can do for her at this point.

Thank you again everyone. Your comments helped me gain some much needed clarity.

Is there any benefit of getting mom to a specialist for her COPD at this point?

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