If I Had One Wish…

Pamela B

…it would be that all medical professionals dealing with caregiver’s listen to them and treat them with as much care and respect as was perhaps taught to them in medical school. I am my husband’s caregiver. His primary care doc referred us to a home health agency. After a brief period of service provision - I requested a referral to another agency as we found them to be inconsistent. When I asked my husband’s primary care doc for another referral if one was available - instead of being given an alternative - the doc’s office informed me that my husband had been dismissed from the health care agency due to non-compliance- The agency told our doc’s office that I had “refused” to answer phone calls or the door when they came for visits. I know that insurance companies can deny service if the patient is deemed non-compliant. The doc’s office went on to essentially question my interest in my husband’s care. How painful was that to hear!! His office further informed me that if I continued to behave in the way then home health company described, while they were willing to give me a referral, we would likely get the “same outcome.” It was/is very, very hard for me to tolerate being accused of thwarting my husband’s care. I know I always do ALL that I can for him. But now I know that our doc’s view is entirely different. I contacted the hospital administration and was informed that “this is what they do.” That many home health care agencies even show up in a patient’s driveway, don’t even get out of the car - and then report patient non-compliance. When we finally had an opportunity to meet with my husband’s doc - he denied that his nurse did anything “wrong” in her dealings with me - stated that these agencies “lie” and was clearly very angry with me and feeling quite protective of his nurse. So if he knows that these agencies “lie” - isn’t that more reason to show compassion for our predicament? He actually started to cancel my husband’s 15 minute appointment stating that he wasn’t going to “deal with this!” After waiting several weeks to see him - the doc was actually angry with me - because I wanted my husband’s records to at least reflect the truth of our experience with this agency. The doc actually told me that I either needed to “get over it” or “find another doctor!” No compassion, no respect, no interest in recording the truth in my husband’s records. He completely ignored my concerns and insisted that his nurse “did nothing wrong.” I felt an overwhelming sense of worry for my husband’s care - and this doc’s interest in hearing us.

His interest was in protecting his nurse and not in paying attention to my reactions/concerns on my husband’s behalf. I/we now feel forced to locate another primary doc. But in the meantime - I am left with feeling dismissed, disregarded, and mischaracterized when in fact, all I have EVER done is try to care well for my husband. All the doc needed to do was to acknowledge my upset with his nurse, apologize for her interactions with me/us and agree to allow documentation in my husband’s record that at least - I disputed the “non-compliance” accusation. We did not and do not want to work with this agency. But we do want accurate data in my husband’s medical history. So now… I have to begin the search for another doc (I agree with the doc’s suggestion that I find another one). And yet, I know that docs talk to each other, support each other. Will I get another doc who will treat us so poorly, so disrespectfully, and will I have to keep silent when treatment is poor? Why, in addition to the stress, sorrow and trauma of caring for a man I have loved for decades - do I also have to navigate insults and lies from the medical professionals we turn to for care?

I was able to convince the doc NOT to end the session without even looking at my husband - as he stood up and began to walk out of the room. He did then order the appropriate tests and has been quite responsive in sharing the results of those tests… but I no longer feel like he is the doc for us. I have to start the search anew. I now have to worry that our care will not be negatively impacted by this doc and his nurse’s, in my opinion - completely outrageous and unprofessional behavior.

I wish that docs, particularly those working with dementia patients and their caregivers - at least pretend to give a damn about the difficult and challenging emotional aspects of this journey. A journey, at least for now, with an inevitable end. In my view - It is not ok to dismiss reactions/interpretations/feelings/concerns/etc. I don’t expect docs to handhold - but I do expect respect and an at least an acknowledgment of client concerns. Do I tell a new doc of my recent experiences? Do I not? Do I try to correct my husband’s records? Will I even get a full copy of the case notes associated with his file? Is my intent to get quality care for my husband forever tarnished by this doc, his nurse, and their failure to provide a “safe” environment for us to continue to seek care. I was so excited when we first began with this doc and this facility - and now, I am so worried and reluctant to express concerns. I will begin the search for a new doc - but now I also carry the burden of worry about how my husband will be treated by other docs.

I know I have written a lot - and I thank those of you who were actually tolerant enough to read my perhaps too long rant. But I feel stuck, unheard, and now - so much less able to discuss my concerns for my husband’s care. How many more medical professionals will I be exposed to that insist I “get over it” whatever the “it” might be? I work in the medical profession, I am not an MD or a RN - but I do know how things can go when a patient/patient’s rep is considered “a problem”.

Shan

Pamela, I am so sorry for what you are going through, and no, you definitely do not deserve the treatment you are receiving from you doctor. And no need to apologize for the long post, I’ve been the queen of scroll-length posts lately with everything I’ve been going through with my mom’s journey.

My first comment is you absolutely should, with no hesitation find a doctor who acts more professionally and compassionately, they still exist and you and your DH deserve that to help you navigate this horrible disease and get the support you need. I understand your fear of the current Dr black balling you to other doctors. But I think and hope you are able to find one that also sees your current Dr’s behavior unacceptable and will welcome you into care to give you the type of care support you deserve. You shouldn’t ever have to hold back questions or concerns about your DH care from his health team and if you do it’s time to modify the team. Anyone in your medical team that advises you to “get over it” is not someone that should be helping you and your DH.

You ask if you should mention your experiences with the new doctors you interview and it’s my opinion you can respectfully share what worked and what didn’t work with your previous doctor. I’m not in the medical field but I’m my profession as an interior designer it is very helpful to ask my new clients if they have ever worked with a designer before. If I know what they liked and didn’t like about the experience it helps me determine if we would be a good fit working together and it helps me cater the experience to their expectations. I’ve found out that I can’t please everyone and that’s ok. I’m hopeful you can find a doctor that is a better fit and you have the right to look.

About the home care personnel issues, do you have our could you get outside cameras that could document when they arrive and how long they wait for you to answer the door? If you can document behavior they will have to believe you and won’t be able to blame you.

Hoping you can find better solutions. Caring for someone with this disease is difficult and you need competent compassionate members in your care team.

Thinking of you, please keep us posted.

Iris L.

Pamela, don't bad-mouth the old doctor to the new doctor. You don't want to get a reputation as a "difficult" patient., or worse, "doctor-hopping". I have been on both ends, as a doctor (in my career) and as a misunderstood patient. I posted many complaining posts of my own on these boards in the beginning of my time here. It's very bad, but there is so much dementia-related work that needs to be accomplished, that it is best to put the unpleasantness behind you and go forward. This is what I have done.

Iris

housefinch

Pamela, I'm mostly a "lurker" on these boards (reading to understand dementia better, because my mom is caring for my stepdad, who has AD). I am a physician (pediatrician), though, and have 2 special needs children of my own, 1 of whom will need lifelong care, so I'm in a bit of a caregiving position myself with her. In no way do I mean to equate that situation or stress exactly with the stress of caregiving for a LO with dementia, though. However, as a primary care physician, I am truly stunned by this physician's behavior. I would find a new primary care physician for your loved one. I know everyone has difficult days, etc, but this is really unprofessional behavior. I wouldn't feel comfortable trusting his professional recommendations in the future, either. All you have to say to your next physician is that you decided the professional relationship wasn't the right fit. And you don't owe any more information than that (you don't owe any information, actually). (I say this b/c my mom, age 79, assumes she has to write her PCP a letter explaining why she is switching practices, etc. I explained that isn't necessary. She can just make a new patient appointment somewhere else and have the new practice do a records request.) Do what you think is right. I agree with not "badmouthing" anyone, because all of us are human beings, but definitely find someone you trust. And it sounds like a new home health agency is in order, too. You want professionals you can trust with someone you love! I have terminated professional relationships with people who were treating my daughter. I did it diplomatically, and I didn't burn any bridges. I felt much better after I found a better fit, and I bet you will, too. Your journey is difficult enough. You certainly don't need to continue with a healthcare provider who is no longer meeting your needs, and causing more stress in your life. Best wishes to you.

terei

I’m not sure you can find a less professional doctor, (and health care agency) so I would expect your next one should be better. And if they are not, go on to the next one. Not all doctors are so tone deaf and uncompassionate

loveskitties

I would be concerned about what exactly has been included in your LO's medical records that will be passed to any future doctor selected. If possible I would request a copy of the medical records to review. That way you could be prepared to discuss any issues with future doctor, or you may even have to give some minimal info on the outstanding issues in order to be accepted.

If the information contained in the records in any way works against obtaining a new doctor, you may have to seek legal advise.

jfkoc

While agreeing with everything above I want to add that you need to find out if other health care agencies are actually aavailable . If not, another Dr will not help the situation.

-J

AmandaGdnr

I feel you are doing everything just as you should! Doctors are people to BUT that gives them no excuse to act like your husband's doctor did. I hope you find a better doctor. We have been struggling for the last 3 years to find my mom a decent doctor. It feels like they just don't listen, they never have time, my mom is just another number to them.... well she's not to me or my brother, or her husband, or her two grandkids. Just keep looking that's all we can do. Try not to let it eat at you I know that's hard it is for me at least but hang in there.

SDianeL

I would look for a physician that handles Geriatric patients if your current one does not. Definitely find another one. I have done that with my husband and reported the doctor to the Patient Advocate. A camera both inside & out is good too. You will have proof. Your husband is the top priority. So sorry you were treated that way.

SDianeL

ButterflyWings

Pamela - I am late to this discussion but definitely understand your frustration at what you experienced. I hope you have found a new Dr by now, and they are more professional. That one deserved to have been reported. My late mother was an excellent one for voting with her feet and pocketbook when someone was getting paid for their expert services or products and was so out of line as this Dr. I am furious for you lol. Wouldn't it be great if we had a Caregivers Superhero enforcement squad to help with these egregious accountability issues that just seem to be so prevalent in this dementia industry?!

Does the medical team you referred to have MyChart type electronic communication and records? I have found that when my requests or concerns are in writing, they are both on the record and get a better response. It also is a good way to review Visit notes without even having to interact with them, or if not posted the e-portal allows a quick, documented way to formally request a copy of his medical records. If there is a fee, it should not be unreasonable (since it does not have to be printed, can be an e-copy). It is your DH's right to have access to his medical records, and you are likely his surrogate given the diagnosis, even if you do not have POA (I didn't see if you did or not).

At some point, especially if you see anything that looks prejudicial or inaccurate, you may want to draft a very short, succinct note of your own to be added to his file. I would have a trusted person (or lawyer) read it first, if so, to ensure it has the tone and content that you want. This is another way to be sure a balanced reporting of the situation goes into your DH's file and you can ask that it be included with his medical records.

Who is paying the agency? When an agency staffer and HHAide had some problem interactions in our earlier months of trying to identify someone, I complained to the top administrator at the agency but also alerted the VA who referred them. The VA social work lead said immediately we needed a different agency since their response was inappropriate to a caregiver/client. They helped vet a shortlist of 6-7 after that, who met my criteria (dementia-informed/ideally trained and experienced, and COVID-19 vaxxed plus willing to wear mask onsite). We didn't even need a new Dr's referral as that had already been already provided. It was just a matter of identifying a different company/agency to provide the service. Can you contact Age Options in your community, for a list?

You deserve a medal today. Just for persevering, and also for reaching out here where we get it, and can encourage you that your instincts are right. This path is rocky enough without having jerks add unnecessary roadblocks of stress, disrespect, and discouragement.

Jo C.

Hello Paula; I am sorry I had not seen this earlier and do not know if you have changed physicians or whether you are still with the original MD or even how you decided to respond or not make a response in the end; I do realize this is very late input and you may never see it. I am deeply sorry for what has happened and can imagine how hurtful and upsetting this all has been. I would have been undone if someone from an agency related false information about me.

Apologies are extended for the length of this.

Question: I wonder what happened first; your cancelling the agency for their inconsistencies, or the agency contacting the physician's office to report "non-compliance?" I wonder how the agency would know that you provided information to your physician regarding their lack of consistency and then related, (perhaps to defend themselves), that it instead, was, "non-compliance" on the patient's/caregiver's part rather than their own failings. Who made the first report, and at any time, did you tell the agency you were going to report their deficiencies to the doctor's office?

First: The Home Health Agency that "reported" that you would not answer phone calls nor answer the door when they were on a scheduled visit is something that should not be left without taking action if absolutely false. The agency can be reported to the governing entity that has oversight for such agencies in your state. If we knew what state you are in, that could be searched for and you would have it. Most of the time, it is best to make a detailed written complaint. One should be calm and reasonable without being inflammatory in the writing so it is not seen as a personal sort of vendetta.

You have the right to ask for a complete copy of your husband's record from the Home Health Agency. In that record, would be documentation of visits, services, contacts, etc. They also should have written in the record when their person spoke to the physician's nurse reporting "non-compliance." Could they have possibly mixed your name up with someone elses would be a question and if there is untruth, then you would know who wrote it.

Could there have been a misunderstanding regarding days of visit and a few missed? Could they have called when you were not home? Did they have the correct number for your home? All of this would be interesting to see in writing and should be in the record .

The doctor's nurse, (if she is a licensed nurse, or back office staff if not a nurse), would have received the call from the Home Health Agency. Being that it was a Certified Home Health Agency, she relied upon their accuracy in what they reported. Unfortunately, when you contacted her to ask for referral to another agency, it appears she already had been spoken to by the agency and taking their report as accurate, she decided to do a bit scolding rather than asking and clarifying the situation with you and staying neutral. IF she or the physician felt that your husband was not getting the care he needs, they are mandated reporters for elder neglect/abuse. Since this was not done, that was evidently not what was thought. I am sorry the staff member took such a negative stance believing the HH agency without asking you about what happened.

You have the right to provide a written letter regarding the accusations from the agency and disputing them giving your own accurate input regarding the actual facts. You can, in the letter, ask it be made part of the permanent record. BUT . . . if you write anything, it would be far best to not be inflammatory, florid or emotional in your response. Make it accurate, state the truth of the matter including dates if you have them; relate what happened in simple concrete terms and sign it.

As for the physician defending his staff member; he would understand that she took the HH agency report as valid. He would defend his staff to a point for accepting the agency report, but he may later confidentially have discussed with her that she could have handled the matter in a more professional manner when addressing the situation with you in the way it happened. Personally, I would let that drop and consider it water under the bridge no matter how it makes you clench your teeth when thinking of it. Personally, I would not expect nor would I demand an apology; it is highly unlikely that will happen.

If you feel that you wish to continue with this M.D., then proceed and let all of this be dropped and be a thing of the past. Your behavior and communication in the future will either let things heal and move forward, or if the topic is re-visited repeatedly can create a highly difficult relationship for both you and the physician which I am sure is not desirable.

However; if you decide to find a new physician; do NOT discuss this with him/her. Start out on a positive note on a pristine slate without complaints about a different physician. This as said, would be a clean slate and to berate another physician would sound highly negative and even perhaps have the new physician wondering if you are a problem patient family which may cause some distancing rather than developing closeness. This may sound unfair, but it is how things most often are seen.

I also did wonder if this is an HMO or specialty clinic setting where your husband gets his care versus being a single practice. If the setting is an HMO or specialty setting, then the record will go from Doctor A to your choice of Doctor B within that entity. If this were me, I would let that negative experience go and be a positive person with the new doc and not mentioning anything about the past issue. (It IS "past.") If a new setting and not an HMO or special clinic, same thing. Go in with a clean slate, be positive and do not mention anything about the dynamics you have written about. Never bad mouth one physician to another. If asked, you were just looking for a better fit for a patient with multiple health issues who also has dementia. If you have access to a Geriatric MD, that may suit things well for the future.

I do understand how difficult and negative this has been for you; I do not minimize that. I am the survivor of a mother with FTD, a step-dad with Alz's, and a MIL and GMIL with Alz's, and have had difficulty with various healthcare providers over time which needed to be addressed. I am also an RN who has been Administrator of Patient Care Management at various acute medical centers; that has included the Case Management, Discharge Planning Departments amongst others which encompassed dealing with multiple different Home Health Agencies.

Let us know how you are, what you decided and how things are going; best wishes are being sent your way;

J.