I Need a Doctor Who Will Listen to Me

I Need a Doctor Who Will Listen to Me April 28, 2015
Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/
Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Is there a doctor anywhere on this planet who will listen to dementia patient’s families?

My long-time family doc retired a couple of years ago, and that appears to have been the end of having a doctor who would listen to what I’m telling him or her, believe what I’m saying and diagnose and treat based on that. What I’m experiencing is docs who complete the chart and ignore the patient. Worse for me and my dementia-bound mother, they totally ignore the patient’s family.

I have power of attorney, so it’s not a legal issue. They. Just. Won’t. Listen.

Many times, I can’t even get them to look at me. Other times, I can’t get face time or even phone time at all. I’ve been begging docs for help, and I mean begging docs for help with a single problem of Mama’s dementia that is killing me and the whole family and will ultimately force us to put her in a nursing home, and I can not get them to listen to me or believe what I’m telling them. As for as getting actual help, forget that. Mama and I are the invisible people, overshadowed and totally negated by the almighty Chart.

Here’s the problem: Mama will not sleep. She goes down for about 3 hours of zzzzzzs, and then she’s up, rocking and rolling all night long. She roams the house, raids the fridge and tries repeatedly to make jail breaks by leaving the house to go wander the streets. She gets confused and does not know who I am or who she is or where she is.

She gets dressed at midnight, 2 am, 3 am, 4 am, etc, and tries to go to her “job” (Adult Day Care.) She’s taken to stripping off all her clothes and trying to leave the house naked. A couple of weeks ago, she started hallucinating that we were trying to kill her. She also hallucinates that someone has told her things, including that someone is going to kill her, that someone is stealing her things, etc, etc.

What this means is that I have to be up with her all night long. Let me repeat this: I have to be up with her all night long. The exhaustion is eating through me like acid.

And I can not get a doc who will prescribe a sleeping pill for Mama. I mean, I Can. Not. Do. It.

I put her in an in-patient diagnostic center for dementia patients. The doc there was supposed to be the best. Yesterday, the doc called me on the phone (first time I’d heard from her, we’ve never met, exactly zero face time) and jumped on me, asking why I had put Mama in the hospital. You know, why I’m such a mean bad totally unloving daughter.

It seems that Mama has supposedly been sleeping through the night in their lock-up ward.

The doc’s main purpose in the call was to announce that she was sending Mama home in exactly the same condition as I admitted her; no help whatsoever. I felt like asking her to come stay with us for a few nights and see what she thinks. What I did instead, was try to explain what was happening in this first-ever discussion with the almighty doc.

I couldn’t get a word in edgewise. This doc doesn’t listen, big time. In fact, she’s not so big on letting anybody else talk at all. Finally, she relented and said they’d keep Mama a few more days. I hung up, realizing that I may not have a choice. I may be forced by these docs who won’t listen, who fill out the chart, read the test results and never look at or listen to the patient, to put her in a nursing home.

I can not go on staying up 24/7 around the clock, just to keep her from burning the house down and dealing with her night terrors. The irony here is that I know that if I am forced to put her in a nursing home, these same docs will happily prescribe sleeping pills for the nursing home. In fact, they’ll turn her into a zombie at the behest of the nursing home.

The operative medical thinking here seems to be that if a patient or, in the case of dementia, a patient’s family, is stupid enough to go to them for medical care, then they must be total idiots, and, of course, nobody listens to total idiots.

This isn’t my usual kind of post. It is a full-on rant. I’ve spent much of the last 24 hours crying about all this because crying seems to be the only thing left that I can do.

This post is a rant. I can’t call it a way of relieving my feelings because nothing seems to relieve my feelings about this. I am going to pull myself together here in a minute and call the people at the Oklahoma State Medical Association and see if they know of doctors who practice medicine instead of just filling out the chart and gatekeep.

If that doesn’t get me help, I’m going through the phone book, looking for a doc who treats patients.

I don’t need a genius doc. I just need a doc who will stop completing the chart, get their nose out of the test results and listen, then treat.

I begin to despair. Maybe such critters are extinct.

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43 responses to “I Need a Doctor Who Will Listen to Me”

  1. Praying for you, Rebecca. My mom is not there yet, but on her way. Our one salvation is that she has pretty limited mobility, so wandering is generally not a problem. But when she is up at night, she is like another person- complete personality shift. She is belligerent, confused and sometimes just nasty. I hope you find a doctor who can help you. I have also vowed to not put my mom in a nursing home unless there is no alternative – I hope I can continue to care for her here.

  2. Rebecca, I am so very sorry. I have some relatives in and around OKC who are in the medical field, but not in the exact field you need. I will reach out to them and ask if they know a doctor who will listen to you. I will email you if I get any recommendations. God bless you and your mama and all your family.

  3. It’s maddening. Doctors aren’t trained to diagnose any more, but to interpret tests.
    One of the problems is that sometimes the sleeping pill can exacerbate the hallucinations, so I’m told. By a former family member who went through it with her husband.

    And while Medicare will pay for residential care, it will NOT cover home health services. Government “help.” Go figure. They’ll pay for the costlier option but not the most sensible one.

    If I lived closer, I’d volunteer to come a couple times a week. I have insomnia, too, so Mama and I could keep each other company.

  4. I don’t have any suggestions because you are doing everything you are supposed to do. Sleep deprivation is serious, please try to take of yourself.

    You may be ranting but the love for your mother comes through loud and clear. You and your family have my prayers.

  5. I’ve been there, and yes, it is difficult. Though why a doctor who supposedly specilaizes in dementia patients is acting like a jerk boggles the mind. Mom would accuse the hospital and nursing staff of murder, rape, etc. It goes by the prosaic name of “sundowners”, and even people who haven’t had any episodes can get them.
    Some minor tips: if you haven’t done it yet, install a lock on your mother’s door that can only be opened from the outside with a key, and make sure she doesn’t get it. Drastic, but you need to do it. Get a hospital bed with side rails, ones your mother cannot open to keep her in bed. Child-proof her bedroom. You have a 90-year-old toddler in your house. Get everything out of the room that can possibly hurt her. Make certain she cannot open the windows, as she could use that as a way out. Is she on medication? Some like dilantin increases the confusion and dementia. Others, including dilantin can decrease the symptoms (depends on the patient). Dad was on risperdal for the violence and psychotic epidsodes. Namenda was also used. Can’t remember the rest of them. Your mother should be on some medication for the worse symptoms.

    Have you contacted an Alzheimer’s/dementia support group? They know what you’re going through and can give you the support you need. They can also be a source of doctors who know what the heck is going on. There are thousands (millions?) of us dealing with the same issues. It is painful, frustrating, and tiring. I figured it was decreasing my time in purgatory. 🙂 But YOU ARE NOT ALONE. Hang in there, and God bless you and your mother

    • Thank you EMS. The only med she’s on is heparin. That worries me because sometimes she bangs on the windows, trying to get outside. If she broke one when I wasn’t looking and cut herself … another reason I don’t sleep.

  6. I’m so feeling your frustration, Rebecca. When it comes to the neurologist’s office here, and trying to get someone to respond to a message asking to discuss a concern, I get nothing. Why they tell me when we leave an appointment “call if you need anything” I don’t know, because trying to get advice or an appointment before the one previously scheduled is almost impossible. I’m so sorry for your situation—there is no excuse for the way you are being ignored! None. If you have a family physician, is it possible for him/her to help you or is that the treatment you get from that doctor too?

    Recently I got assistance from our family doctor in getting my husband a transport chair (he has no stamina left for any walking but a few feet) and she filled out the necessary paper to get a handicap parking permit. I attempted to go through the neurologist’s office and couldn’t even get a call back! I’m thinking about you—-and sincerely hope things improve. You are right—you can’t continue to stay awake to guard your Mom. Your health is already at risk. Hang in there. My thoughts are with you.

    • Our family doctor retired. If she hadn’t, I wouldn’t be having these problems. We’ve tried three now, and get the same medicine-by-numbers and complete the chart routine from all of them. I get the impression that if a problem doesn’t present in a textbook format, you’re on your own.

      • I’m so sorry I failed to remember that in your post. I just reread it. Our family doctor is a young woman who is very on top of things. Guess we were lucky to find her when we moved here to FL. a few years ago. Wish I had some sage advice, but unfortunately I don’t. All I can do from this distance is let you know , as many have here, that we are thinking about you. There has to be a doctor in your area who is a “real” caring doctor and will listen and think out of the box!

  7. I hope you don’t mind if I make a suggestion, Rebecca. I would call the nurses’ station where your mom is, or of your favorite long term care facility. Call about 10 PM. Ask to speak with the charge nurse. When she comes on the phone, tell her exactly what you said here. Describe your mom’s symptoms and behavior. Then, ask her what doctor she would take her mother to if she had those problems. Nurses are not supposed to recommend doctors, but can see who they would use.
    Do it at night because it’s getting quiet and no doctors or family around.
    Nurses see doctors with patients and know how they are with their practices.
    This is a great way to get a surgeon. You can even call the OR desk and do the same thing, btw.
    You might be able to get a sitter for a couple nights a week, btw. You’d be surprised what they can handle.

  8. My prayers for you and your family to find a realistic and loving solution in how to care for your mother. From what you write, a sleeping pill may help but then again, it may not as some elderly folks just do not tolerate them. If she is having hallucinations, you may consider Haldol but that is a strong medication too.

    Be assured of my prayers.

    I hope this link can help but I am sure you have done lots of research already.

    http://www.aplaceformom.com/senior-care-resources/articles/dementia-care

  9. I’m so sorry to hear this, Rebecca. We saw this sort of thing with my mother-in-law’s doctors. So far my own mother’s physicians still listen…Maybe the fact we bring a recorder to appointments helps, although we only started so the far flung family could hear exactly what was said instead of relying on our memories.

    It’s very hard. FWIW, we noticed Mom developing hallucinations and more dementia symptoms whenever she had an infection. If you can find someone to listen to you to check that out it might help. Word of anecdote from other people dealing with the aged supports my impression that this is common.

    What sort of nursing home are you thinking of? Around here there are some fairly nice assisted living places with dementia areas (dreadfully expensive, unfortunately). Mom is in one and seems happy there. She chose assisted living after Dad died, and then her stroke put her in the dementia area. They don’t drug her into helplessness or anything, and don’t seem to do it with others there, either. i see the employees dealing with the patients being much more patient than I could manage, and working to give them something to do during the days. They expressed concern to us when Mom refused to come out of her room all day.

    I guess what I’m trying to say is two things 1) there may be an infection making your mother worse, and if you can get a doctor to pay attention and check for such a thing (usually it’s UTI in elderly women) that may help a lot. 2) dementia care isn’t necessarily awful.

    And finally I will pray for you and your mother to find the care and resources you need.

    P.S.
    Can you find a Visiting Angels or other home-health-firm that could bring somebody in for even a couple nights so you could sleep?

    • I’m trying to sell some property so we can afford to hire someone to help. As for what kind of nursing home, I haven’t gotten that far yet. I just know that this is beyond me to manage without help from somewhere.

    • You are right about UTIs, btw. They really reek havoc on overall well-being and increase confusion even in elderly who don’t have dementia.

  10. I highly recommend finding a gerontologist / geriatrician (if you haven’t already looked these up) since they specialize in treatment of the elderly. We had much better care for my in-laws once we found a doctor who practiced geriatric medicine.

    I assume your mother is on Medicare(?). The Medicare website can help you find someone who specializes in “geriatric medicine.” See http://www.medicare.gov/forms-help-and-resources/find-doctors-hospitals-and-facilities/quality-care-finder.html

    One possibility, if all else fails, is to find an herbalist or naturopathic in the phone directory, and see if they have any herbal tea remedies for your mother’s dementia/insomnia. This could be a temporary solution until you get a long-term solution. For me personally, I’ve had success with some herbal teas for insomnia, even if my situation isn’t the same as your mother’s.

    Many prayers for you and your mother!

  11. I’m sorry to hear this. Much sympathy to you; this is a tough one.

    And, yeah, doctors. For whatever reason, not-listening and medicine-by-the-numbers are all too common. I have no helpful suggestions that haven’t already been said, but I hope you find help soon.

  12. Hello,

    My mom and I – and my family – have been on the dementia journey for about eight years, now. She is now in the severe stage – with all and more behaviors that many of you describe, and is more than we can handle with a nine and fourteen year old at home. I really went too long in seeking help beyond the doctors who were chart-bound…

    Through the years there has been good and bad medical support. I have found several helpful resources and organizations in my area – Florida. The biggest help is Hospice. Medicare pays for it, you have support of a caring network of medical professionals (RNs, LPNs, CNAs, and Social/Case Workers – and volunteers) that help you with everything from getting the proper medicines and equipment to respite care. Medicare pays for five days of respite care every thirty days! The CNAs help with hygiene care, and the RN/LPNs make weekly visits to your home. The medical team includes at least one doctor, and the Social/Case worker is your liaison for respite care – and helps you keep your sanity.

    Several books were also helpful – The 36-hour day is a great reference book that helped explain behaviors, and the Alzheimer’s Answer Book is another good, readable book. I found the 36 hour book better as a reference by using the index, because to try to read it cover to cover would have been too overwhelming.

    Many people feel that Hospice is for the final days, and really lose out on a wonderful resource of help for the long goodbye of dementia. Hospice also serves the caregiver and family.
    Peace,
    Edith

      • We did the same thing – hospice – with my mom for the last six months or so of her life. It was really helpful. We had many of the same problems – Good luck. Also, we had a doctor that specialized in geriatrics.

    • I second hospice as well. Dad was in it for roughly 9 months under “failure to thrive”, so it is not just for people who are given X number of months to live. The respite care was a lifesaver for me. And the 5 days can be extended as it was for me when I came down with a fever from a sinus infection. Some hospices have their own live-in care facilities, and/or utiilize existing nursing homes if the caregiver or the patient needs it.

  13. I first experienced this phenomena of doctors-without-ears 38 years ago when my first baby had some hip issues. I won’t tell all the stories, but what happens when you run up against this is your total feeling of helplessness. And second issue is that you begin to second-guess yourself. What we also learned over the years, if you are the one in need of care or the primary care giver, you need someone else to advocate for you. Your care-giving takes so much mental and physical energy that it’s hard to fight over the mountain of earless doctors.
    There is respite care and home-health care available. On the other hand, there are nursing homes that could be positive experiences for both your mother and you. It’s not deserting her–you can develop a daily visiting routine and stick to it. You have to be choosy and develop relationships with the staff, pop in often, stay on top of the medications, and assume responsibility for all the doctor visits and other medical issues.
    Praying for you now as I write this. Almighty God, direct Rebecca to the medical people who will listen, love, and help both her and her mother. Send your peace to her soul so she can hear the Holy Spirits whispers, strength and persistence in her body and soul, and bring her to a solution. Amen

  14. Hi Rebecca, I haven’t written in awhile, but still read your posts. I am a nurse who has worked in nursing homes, hospitals, home care, and hospice. Let me second the suggestion about finding a gerontologist. In a city the size of OKC, there must be several. I also second the suggestion about having her checked for UTI. That will throw an elderly Alzheimers patient into Lala Land faster than you can say “sleepless in OKC.” The regulations for Hospice eligibility may vary from state to state (even though Medicare is a federal program), but usually the doctor must certify that the patient is not expected to live longer than six months. Your mama sounds like she might outlive us all, so I don’t think she’s eligible yet. I second the writer who warned you that standard sleeping pills can increase hallucinations in the elderly, and especially in patients with dementia. In nursing home, they often try trazodone, an atypical antidepressant with the side effect of drowsiness. For the near term, Benadryl (diphenhydramine) has the same side effect, so if you haven’t already tried that, I would start with a low dose (25 mg) at bedtime, and work my way up. Doses up to 100mg are usually well tolerated, but there may be residual daytime drowsiness at higher doses. You will need to increase her fluid intake, because it also causes dry mouth. The reason this whole sleep problem happens with Alzheimers patients is that as more of the brain cells are affected and destroyed by the disease, the sleep center in the brain is also affected. Eventually they need no sleep at all, at which point families usually do have to make the difficult decision to institutionalize their loved one. I pray for you and your mama, Rebecca. God bless.

  15. I have family in the Norman area of OK, and called them because they recently lost their elderly family members and had been dealing with a little bit of what you’re dealing with, Rebecca. They were unable to assist because the doctor they liked recently left, but I did want you to know I checked into it. Since I can’t do anything else I’ll be sending up prayers for you and yours.

  16. Well, most of the things I thought of have been suggested already.

    Is there some administrative staff you can take your concerns to? People will rarely deviate from their flowchart when dealing with a customer, but they tend to bend over backwards when given orders from above.

    The only other thing I could add to the list is maybe sending a letter (or email, but it might just go to spam) prior to any doctor appointment. That way, by the time you meet, the doctor might have a better idea of who you are and what you need, instead of just seeing you for the first time as just another number in the system.

    I hope your search for a new doc pans out soon.

    • Thank you. I’ve got two doc appts next week to interview them. I’m probably going to make more appts later today.

  17. Rebecca, We got the local health department to help some with sending someone several hours a week. That helped my mom to be able to get her appointments and shopping done while my dod was cared for. She finally hired someone to come stay with him at night so she could get sleep and know he was safe.

    • If I can get the $, I’m going to hire someone to help. I don’t think our local health dept offers anything, but I’ll check.

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