The Reminder to Be a Hyper-Vigilant Medical Advocate When Dementia is Diagonsed

alertThe midnight visit to the ER was long and difficult. I wondered how mom would have managed by herself in a new place alone. Her community put her in the ambulance and gave the EMTs her papers and off she went. I wonder how she would have gotten back had I not shown up. While there, I spent most of the time trying to help get her comfortable and it resulted in only some short cat-naps as we waited for the doctor, the CT scan, the report, and the discharge papers.

There was no bleeding found, but they confirmed that her ear-infection is long-lived since they found fluid behind her ear in the scan. Just last Tuesday, I watched as the doctor checked both ears after I asked about her constantly running nose. He found nothing. Tonight, the doctor immediately tells me on his first look that he can’t even see down her ear canal because it’s so swollen.

My stomach immediately tightens as I recall watching a doctor stick her hands in my dad’s mouth and pull on his tongue when I was trying to find out why he was slurring. She found nothing and within a few weeks he got diagnosed with a tumor on the back of his tongue. He wasn’t diagnosed until after his appointment with a speech pathologist.

I’ve had many discussions with a variety of my mom’s medical team. I’m always told she doesn’t exhibit the tell-tale signs of pain. Most recently, I’ve been following up on her constant foot movement. Both of my parents have proven to me that they will either cloak pain or don’t register it. It makes the job of being the medical advocate so much harder. I’ve been told by a variety of different doctor’s, nurse’s and social workers that the family usually notices issues well before it might be recognized by the medical team. I will continue to use what I know of my mom and ask about those things I see that don’t seem right. It’s all I can do. Advocated. 

Taking a Lesson from Groundhog Day

groundhogdayThis is not my first post about Groundhog Day. When you are close to someone with dementia, they are forgetful and you find that you have waves of repeated conversations, issues, problems and experiences. Now that mom is in her new community, I have more than a dozen individuals that I’ve had extended conversations with in regard to mom’s care, health and habits. I need to patiently confirm with each one that our goal is to make sure what mom is doing brings her enjoyment.

Key issues we are facing:

  • Your mom likes to hang out in bed late in the morning.
  • Your mom is skinny.
  • Your mom doesn’t want to shower.

My mom has always been thin and isn’t even at her thinnest now. For the past decade, she told me she likes to hang into bed late into the morning and I’ve found her there many times to know it’s true. I’m not sure about the showering, but do know that her independent nature and being assisted in a shower are at odds with each other. I shared with the community that my mom enjoys taking a bath, which they can accommodate, so I continue to recommend that option.

It took several months in my mom’s previous community to convey to those caring for her that this is not the life she wanted and our goal is to not extend it by getting her out of bed to eat breakfast if she isn’t hungry, manage around her diet by adding vitamins or supplements, or forcing a shower. I know all of those things help manage other issues we might face: pneumonia, skin tears, cognitive decline–but they feel wrong as a general response to caring for her.

Bill Murray did a great job of making the most of having to live the same day over and over. I’m hoping that I continue to get better at understanding and finding a way to best advocate for mom by having to convey her wishes again and again. Implored.

Another storm passes

storn cloudI return to visit my Mom a few hours after she was found on the floor. We aren’t sure if she fell since no one saw what happened and my Mom doesn’t remember. Within an hour of the “fall” that resulted in EMTs being called, she gets up and is moving around. For several months she has been walking more stiffly and taking shorter steps. There appears to be no change in her movement, speech or behavior. I discuss with the staff that I would just like to keep an eye on her and let them know I would be returning later in the day.  When I return she is still sound asleep and the night shift has set aside a meal for her should she awake and be hungry.  For several months, she has days that she sleeps through. So this isn’t out of the ordinary either.

I return to check in on my Mom the next day. The EMTs had asked if I noticed any changes in my Mom when they were assessing her. While she seemed to have more trouble sitting up in bed initially, I wonder if we just haven’t seen her try lately. I remember being surprised when I realized how long it was taking her to dress now. There seem to be no other changes in her movement and the day after she is back and engaged in the morning and afternoon activities the community offers.

I know that as the family member, I am probably going to be the first one to notice changes in my Mom. I remember being dumb-founded at how long it took for any doctor to initially diagnose my parents. A month before my father passed away and well into moderate Alzheimer’s, he got a 29 out of 30 on the mini-mental or folstein test often used as the first gate down the pathway to a dementia diagnosis. I tell those that ask that if you are noticing a change in behavior, you need to pursue your concern. It’s important to request a Neuropsychological Evaluation that will take at least two hours and is administered to understand where there might be cognitive decline.

My siblings and I will continue to keep a vigilant eye on my Mom. I can’t imagine how our health care system can effectively manage those individuals without someone who can be their medical advocate.

For now, I feel like the skies are still gray, but the thunderstorm has passed. I feel a butterfly in my gut as I imagine what the next crisis might be. Squeamish.

When will I stop believing what my demented Mom tells me?

carlyhostMy sister came to visit to help chase down my Mom’s medical issues giving me a break and allowing me to focus on my daughter’s foot surgery. The true sandwich generation dilemma — both Mom and daughter need medical attention and care right now.

My daughter is only 11, but had chronic foot pain due to an extra (accessory) bone that outlasted all the non-surgical options we pursued. She stopped dancing and gutted out soccer as the goalie to help her team who lost two players due to broken bones. Surgery was a few days ago. Thankfully, it went well and I just finished spending the last two days as foot-maid (pun fully intended).

My sister just returned home yesterday and my Mom just called telling me her “cupboard is bare.” Not only does logic tell me she still has plenty of crackers and chips, she is in a community that serves every meal and that also has a “store” where she can pick up bread and peanut butter and jelly if she really is out of supplies.

However, I immediately feel guilty and assume my Mom is reporting facts. I can’t stop the urge to believe my Mom. I’m not sure if I ever want to lose that ability because it will mean I know my Mom is lost to me for good. Reflected.


Dementia and the Importance of Medical Advocacy

sheildMy Mom lives in an Assisted Living facility. She has moderate multi-infarct dementia. Last week I noticed a pretty major change in my Mom and requested that they test for a UTI.  They set her up with a visit with the doctor. They report they tested her and would start antibiotics giving me the impression she tested positive. There was no change in her behavior two-days into the course of medicine and by the end of the day a nurse called me to say the culture came back negative and they were stopping the antibiotics.

While I was there, I found that my Mom’s feet were very swollen. My Mom was complaining that her little toe hurt and would not stop pacing. When we get off her shoe, I find that both feet and calves are twice their normal size. I had the on-duty nurse visit and my Mom is not really complaining about her feet hurting – she is almost defensive that we all think her legs would hurt. Apparently, the personal aide we hired reported this to the nurses a few days earlier (before the antibiotics).

However, no one told me or seems to be following up on her swollen feet and legs. I request that a doctor visit my Mom and they initially decide to do a test to see if she has deep vein thrombosis. They call to tell me the test came back negative.After two visits from the doctor, it seems they are done investigating.

I was complaining about the lack of follow-up care for my Mom to my mother-in-law. As we were talking I tell her that I noticed my Mom was 15 pounds heavier on the scale, but doesn’t look like she’s gained any weight. My mother-in-law suggests I tell the medical staff since it could lead them to something else going on with my Mom. Maybe she’s retaining fluid which is causing the foot and leg swelling? When I call back to Assisted Living and ask if they have been tracking my Mom’s weight, she confirms that indeed, my Mom has gained almost 15 pounds in two months and tells me she will have the doctor follow-up. Did the doctor not notice this on his first or second visit? Arrgg!

I’m getting more and more signals that Assisted Living is the WRONG place to be for any patient with dementia. The programming is not geared toward her needs and the fact that she is presented with a menu at meal time makes me realize why she might not want to eat in the dining hall. My Mom gets overwhelmed when presented with choices.

Recent research confirms that a person with dementia poses additionally challenges to the medical community since they can’t report their history or pain reliably. It turns out, the un-diagnosed issue could be leading to the anxiety and other troubling behaviors.

I understand it’s difficult to help someone who can’t help themselves, but I would think the medical staff would be more prepared to address this. Could my Mom’s “unbecoming behavior” stem from an un-diagnosed medical issue? I’m more certain than ever that someone needs to be the voice for those individuals with dementia who can’t advocate for their own needs and that our current medical system seems too busy or overwhelmed to serve. Angered. 


Related medical research on this topic:

Pain, Anxiety, and Dementia: A Catastrophic Outcome

Q: What’s the Difference Between Obamacare and Doggy Day Care?

puppydogeyesA: Rabid Advocates — okay, poor choice of words in this case, how about “dedicated advocates?”  As a family caregiver, we know how vital it is to be involved to coordinate and have a holistic knowledge of an individuals needs and the new system, as I understand it, misses the mark.

I attended an event and heard Howard Gleckman who wrote “Caring for our Parents”  and who is an accomplished journalist, researcher and “family caregiver.”

I’m not in the senior health care industry, but like to hear what’s going on since we have been so directly impacted by the needs of my parents. Mr. Gleckman shared how one of the new trends emerging is a coordination of medical care with long-term care which represents a merger of services from Medicare and Medicaid. There are more than 7 million Americans who are being served by both today — but forecasts show this number rapidly growing as the boomers age into the program and spend down their retirement and savings and qualify for these services. Most likely, the model will grow and be offered to more Americans and could be the next generation of long-term care options.

In general, under the new models the providers will be rewarded based on “outcomes” not “delivered care”  — I would say that is a good thing. However, the ways to measure this seemed purely clinical — number of falls, number of hospitalizations, number of deaths etc. Changing the way to measure and pay doesn’t fill the gaps in our current models of medical care. Where is the quality of life component factored into the model?  Cutting compensation if there are too many deaths seems like a bad idea — even on paper.

Most doctors rely on the patient to detail medical history and advocate for themselves. My parent’s had no short-term memory. My Dad didn’t know which pills he took or why, that he had broken his hip and my Mom would never share that she had a stroke. I was frustrated when those doing the initial intake interviews would look to my parents to answer these questions — not their electronic medical records that were a keytouch away. I created a list of Do’s and Don’ts to better manage the appointments with my parents because having the doctor ask me everything was frustrating for my parents and they would disagree with some of the facts I reported.

The move to meld the services and push down costs does not incorporate the quality of life — especially when it comes to the aging population.

Obamacare changed the system, but at this time, doesn’t really fix it.

As I walk toward my father’s funeral, I don’t waiver on my belief that he had a swift and loving end to his life. However, I spent several months pushing to understand why my Dad was slurring. I reported it monthly to the health care workers while he was in Assisted Living. I eventually took him for a physical when I was underwhelmed by the progress on finding the root of his changed speech. Part of the problem is that most doctors rely on the patients ability to recap their medical history and concerns. Someone with dementia is unable to manage this.

I didn’t find a solution until I requested an assessment from the staff Speech Pathologist who finally raised the red flag on my Dad’s health.

I struggle with the fact that I didn’t manage as a better health care advocate. By the time my Dad’s cancer was detected, it was really too late to treat. We recognized that putting someone with dementia through cancer treatments would not ultimately improve the quality of his life. What an awful choice that we his children were faced with.

My brother and I who walked this journey with our father were hit hardest by the grief. We rode the roller coaster of hope when we thought we could buy my Dad a few more months of life. In one week, our journey flipped from remission to hospice.

We thought long and hard about the choices we were making and based on the beliefs our father had shared. We vetted our choices with all four children. We did not make our decisions lightly, and some of us still carry the grief and guilt scars that resulted from our choices.

Ultimately, I am thankful for the time I had with my father and treasure the final days we spent together — especially because I had no idea they would be our last days and memories together.

It doesn’t exist in the current model but given the amount of caregivers and family members who have witnessed the current aging options, the lack of an advocate in the new models emerging feels sterile to me. The embedded HOPE is that family members will be engaged by the assigned ‘case managers’ which has proven to result in better health outcomes.

Any misstatements of the emerging models falls on me — not Mr. Gleckman — his presentation was fantastic and very educational. However, after hearing the facts he presented, I felt like I was listening to a new system of care to that would be just as likely to be presented to care for dogs. Perplexed.

This is a HUGE topic and I skim over some key issues. I’d love to hear from you. Please share comments or your blog posts that tackle some of these issues.