Managing Medication and Pill Aversion

There seem to be two kinds of people in this world. One that uses medication and appreciates the benefits, and the other that has a general aversion to taking medication.

I fall in the second category and was happy when the one prescribed medication I was taking (a baby aspirin/day) fell out of favor. Well, I suppose there was the science to it, but when my doctor said to discontinue taking it, I was happy to comply.

I see many people struggle with medications, including those with no cognitive issues. I think it’s too easy to miss a dose and think pill caddies are helpful solutions.

A reader asked if there were any simple books for medication management for someone diagnosed with Alzheimer’s. While I’m not trained in health management, from the brain health training I have done, I do know that starting a new habit is difficult for someone diagnosed with any form of cognitive issue, include all dementias.

The bubble packs are dated and have time stamps that are easy reminders to follow and track.

There are two simple options to help manage medication as well as see if and when someone has missed a dose. The first is the pill caddy and the second is bubble packs. For anyone with more complicated medication scheduling or a lot of pills, the doses are packed with dates and times and come on a roll or in a blister pack.

I always consider options that give an individual more control over their life. I think those two options are helpful in managing medication and provide simple cues on when to take and if a dose was missed.

For those that are averse to medication, but diagnosed with something that medication can prevent or abate, I hope family and loved ones will speak up and help the individual understand the choices they are making and the potential risk to their health. One of the entitlements of being American is that we are given the opportunity to make really bad choices for ourselves. However, when it comes to our health, sometimes our spouses, siblings, and friends need to recognize that someone diagnosed with a cognitive issue might be unable to make a reasonable choice. The act of not taking that medication might result in a need for a higher level of care or other health complication that requires medical intervention or nursing care.

I hope if you have someone in your life in this second category, you will at least share your concern and give them the opportunity to explain their choice. Once diagnosed with any form of dementia, I see many deal with loss after loss. They have lost friends who fell away, the ability to perform at a job they loved, and even just manage the simple act of cooking a meal. Is the refusal to take the medication one place that gives them a sense of control? Wondered.

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

What I Wish I Knew When Dementia Was Diagnosed: The role of Palliative & Hospice Care (#2)

Palliative-vs-HospiceMy parents and in particular my Mom often shared that QUALITY of life was her goal, not QUANTITY. After a diagnosis of dementia which can result in death, I had an ongoing struggle with what was important to do to honor my mother’s wishes.

The lines between “palliative care” and “hospice care” are confusing but they both focus on providing comfort. Palliative care can begin at diagnosis, and at the same time as treatmentHospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. These lines are kinda blurry with dementia since there really is no “treatment” or “cure” (YET). 

I wanted to manage and strive for quality of life, keep Mom comfortable, but be mindful that we were not providing things that could extend her life.

When Mom started to refuse to take the anti-anxiety medication the care community was delivering, I realized that it was being delivered with a host of vitamins. Was it important to give my 80-year-old mother a multi-vitamin?

My Mom didn’t really like taking pills, so delivering 4, of which one was really important to minimize her stress became the only one I asked them to deliver. I followed up with the doctor who agreed that the other pills were not really necessary and her medication regimen was updated.

When Ensure was recommended as an addition to her meals, I asked more questions to make sure it wasn’t been forced or delivered as a meal replacement over providing her with food options she would still eat.

Apparently dementia and age can impact your taste and there seemed to be a strong preference for salty and sweet foods. She was never much of a salad or veggie person and it seemed odd to start worrying about nutrition when she often couldn’t remember names or faces. I didn’t want her to be hungry, but I also wanted to let her have some control even through her diagnosis over day-to-day choices.

My toughest challenge was when her hip broke and the doctor insisted we lift the DNR (Do Not Resuscitate) order for her so they could repair her broken joint. At 83 and very frail, there was no way she would have survived the surgery and they agreed to move her into Hospice Care. Over the previous year, she had been in and out of Hospice Care as she continued to weaken. However, with the addition of the broken hip, we now had the option to keep her comfortable with morphine that would eventually end her life.

These were difficult and guilt-inducing decisions, but I always worked to meet what I believed to be my mother’s wishes. Knowing these options may not just better serve the comfort, but also allow you to focus more on enjoying time with your loved one than managing medical matters.

Would the vitamins and Ensure prevented the eventual hip break? I will never really know but after caring for two parents now realize how important it is to let the will of the individual influence their daily choices, even after a diagnosis of dementia.

You will have a lot of options and choices to make over the course of your journey. Just know you will make the best decision you can with the information you have at the time you need to make choices for your loved one. Hospice can be a valuable option during your care journey. Reminded. 

 

Get Health Screenings Done When Recommended – Healthy Aging Habit 24

healthscreen

If you are seeing a good primary care physician, hopefully once a year, they will perform some basic screenings based on your height and weight, blood pressure and health complaints.

I’m not a doctor, but culled information online and am sharing what I found. This is not a substitute for medical advice and I encourage you to regularly see your primary care physician who will help you know when screenings are right for you.

In general, everyone should be seeing a dentist at least annually if not twice a year. Oral hygiene is a major component of good health.

In general, your doctor will perform or recommend regular screenings for:

  • Cholesterol
  • A full body scan for moles or skin lesions if you have a familiar history

For women: Breast, pelvic, and pap smears

For men: Testicular

For women at 40, Mammograms are recommended unless there is a familiar history and then this is usually done earlier.

For men, at the age of 50 they recommend prostate screenings unless you are a high-risk individual then you start typically start at the age of 40.

50 is the magic number for a colonoscopy. If there is a familiar history, it is ten years earlier than the youngest family member with colon cancer.

At 65, it is recommended that men and women should have a bone density study every 2 – 5 years; this may start at the age of 60 if you’re in a high-risk population.

For those of you caring for loved ones with dementia, I will leave it up to you to determine how to manage preventative health care recommendations. I do know that I had to fight a regular battle with her care community over vitamins and supplements. I also struggled with the recommendation to add Ensure to her diet. My Mom was very clear that she wanted quality of life over quantity. I believed that she should eat what she wanted. It was the one thing she could choose to do and control.

I hope you will discuss these issues with you, or your loved one’s doctor. Early detection can not just save your life, but afford you a much better outcome. Suggested.

Get an Annual Flu Shot and Consider the Recommended Vaccinations – Healthy Aging Habit #23

flu shot

As a caregiver, I started to think about how my health (or poor health) would impact my parents. I didn’t want to be the one to bring the flu to them, so made sure I got annual flu shots. I avoided the shots for years thinking that having a dead virus shot into my arm sounded kinda gross … it still does, but know I know the value of avoiding the flu for myself and others.

In my role as a Daily Money Manager, I research varied ways to save my clients money—from simple things like reviewing phone and cable plans to bigger issues like refinancing and downsizing options.

At a training workshop, I learned that the lack of vaccinations is estimated to cost the American people $15.3 billion. It never dawned on me how much money NOT getting a flu shot costs me either directly on medication and doctor visits, or indirectly through lost wages and discomfort.

In addition to the flu vaccine, three other vaccinations. Some are recommended for adults over 60, but for many it may be a good idea to get it early.

Ask your doctor about these vaccines for those you are caring for, but they might also benefit you and I hope you will discuss them with your doctor.

  • Shingles or herpes zoster vaccine — if you know anyone who has developed shingles, you know how debilitating it can be. The healthcare cost of treating shingles is estimated at $1 billion a year. There are more than one on the market now and they are hard to get. Get on a waitlist if they are out at either your doctors or a local drug store.
  • Tdap — while many of us with kids still in the household are familiar with this vaccination, only 16% of adults over 65 have gotten it. My son received the vaccination that includes vaccines for tetanus, diphtheria, and pertussis but did contract whooping cough. It was awful in a 13-year-old, but apparently, it’s even more devastating for adults. Next time you need a tetanus shot, ask if you can get Tdap instead.
  • Prevnar 13 and Pneumovax 23 for the prevention of pneumonia, which kills more annually than any of the others mentioned.

The annual flu shot is now a household habit and the I’ve already discussed the other vaccinations with my primary care physician. Completed.

Learn How to Advocate for your Medical Needs – Healthy Habit #20

iwantanswers

The days of the family doctor are gone. Most doctors are crushed for time as they try to address your needs in what feels like a shrinking time window. The average time physicians are spending with patients is less than 24 minutes. According to The Medscape Physician Compensation Report 2017. Thirty percent of physicians spend 17 – 24 minutes with their patients. That is followed by 29 percent of physicians who are spending between 13 – 16 minutes with patients.

Here is a quick primer on 6 Ways to Be Your Own Health Advocate by Elizabeth Renter. In short, you need to arrive prepared and refuse to leave until you have a diagnosis or next step toward one. You may need to repeat this cycle if your condition persists. 

You have probably noticed that no one seems to do more than glance at the 4 (plus) pages you diligently completed before your appointment. After caring for my parents and navigating a host of doctors with them, I learned to come prepared for each appointment. I could quickly cite their health issues, medicines, and stated the reason for our visit. I learned that if the doctor in front of me could not resolve the issue, I would find a secondary resource to help.

It is now the requirement of every adult to be their own advocate. The healthcare system is unable to do that for you.

When it comes to short-term memory issues (remember this is not a normal consequence of aging) it is important to push to get diagnosed. It could be a side-effect from a medicine — and it can happen with medicines you have taken for years. If you notice a change, bring it up with your primary care physician. Some will do a screening for it, but I recommend you request a referral to a neurologist. Memory issues are not really a primary care physician’s expertise. The earlier you know you have an issue, the earlier YOU can decide how you want to live should it be permanent and should you decline.

This ideal applies to any medical issue that is impacting your quality of life. Push to find a reason and understand how it may impact the rest of your life.

If you know this is not your skillset, or are overwhelmed by other matters, consider a consultation with an Aging Life Care Manager. In minutes they would resolve issues that I failed to unravel in days when it came to caring for my parents. Visit this website to find one located near you.

Can you eventually figure it out? Most likely. I know because before I knew about Aging Life Care Managers, I was working to handle a lot of the issues as the primary family caregiver for my parents. However, I would do anything to have a mulligan and spend that time enjoying my parents’ company instead of fretting over the next medical hurdle to traverse. Wished.

Brush, Floss, and Visit the Dentist Regularly – Friday the 13th Healthy Habit

lifeisbetterwithteeth

If you don’t know, oral health has a link to your general health. You can get a deeper dive on the topic and the related health conditions from Mayo Clinic.

There are many reasons why brushing and flossing are healthy habits, but it’s also important to see your dentist regularly.  They may catch oral cancers early when they can be more easily treated. While my father had Alzheimer’s, a tumor at the base of his tongue is what ultimately took his life. I had tried many times to get him to the dentist before we knew about the tumor,  but he just refused. In reflection, I wonder if somehow he knew. He had always been a good dental patient before the diagnosis.

If you are caring for someone with cognitive issues, be kind to yourself if they just refuse. In some ways it maybe the one way they feel control over their lives.

As difficult as it was to see my Dad’s physical pain and suffering the last month of his life, I also feel he was blessed to get to take a celestial departure before he lost more of himself.

The habits we develop and maintain can carry us and help us maintain good health. I often have to remind myself of that when I’m waiting for my tooth brush timer to end. Brushed.

Understanding the Best and Worse Case Options

bestworstcase

After caring for two parents with dementia, what I believe is that most doctors lean toward life extending measures and often don’t stop and consider the outcomes beyond the immediate resolution to an issue.

I watched as my Dad recovered from hip surgery and was cognitively a different man. He was in great physical health before the surgery (he broke his hip playing racquetball), but we all noticed a decline in his ability to hold a conversation or discuss the finances afterward. He was eventually diagnosed with Alzheimers but the years leading up to his diagnosis was filled with dozens of visits to primary care physicians, and even a neurologist, who dismissed all of our concerns about the changes in our Dad’s thinking and behavior. There really wasn’t a choice about the surgery to make since he was in good shape and had not been diagnosed cognitive issues, but the drastic change has me wondering about surgery later in life. My Dad was 76 when he had this surgery.

A recent report Major surgeries linked to small decline in mental functioning in older age confirms that a decline has been proven. However, they do believe for patients who are developing a brain disease the outcome would be more pronounced. That was definitely true with my Dad.

When Mom fell at 83 and the orthopedic surgeon demanded I lift Mom’s “Do Not Resuscitate” order so she could perform surgery, I balked. I had to ask for the social worker and an internist so I could convey that there is no way my Mom would be in a better place after surgery. She was living in a Memory Care community, had clearly had another stroke and had no idea who I was any longer, and mending her hip would most likely be too difficult for her to survive. As I was pushing back for them to give me options, they worked on getting my mom approved for surgery. Thankfully, the testing ultimately proved she would most likely never make it through the operation. I was able to follow the wishes she conveyed to me over decades as well as spelled out in her medical directives. Mom was moved into hospice care and died two weeks later.

What frustrated me was that there were no discussions about outcomes, just a swift recommendation to fix what was broken.

Too many families have found they end up with increased medical expenses and loved ones that are living, but don’t have the quality of life they expected after surgery in later life. Some admit that they wish they had know both the good and bad possible outcomes — but that isn’t currently how most medical consults currently work.

A few Emergency Rooms are now adding in a “Geriatric Team” to better serve those individuals coming into their hospitals and have a lot more to consider than just fixing the obvious medical emergency. The most important consideration is the what could happen and the life to be lead after.  Should you be in this situation, please demand you get both the best- and worst-case options. Recommended.

How often is a Doctor Available?

As the primary family care partner for my Mom, I was often taking her to a variety of medical appointments. While both of the communities she lived in had visiting doctors, they usually were unable to see her in a timely manner or did not have the type of expertise needed. For instance, after a fall sent my mom to the Emergency Room with a goose egg sized lump on her forehead, we were told we would need to schedule a visit to an Ear/Nose/Throat specialist. For that we needed to travel to a local provider.

A story in The New York Times, Where There’s Rarely a Doctor in the House: Assisted Living, dove into this topic and it is worth reading if you are in the process of looking at a community.

Getting to medical care can be both a time and monetary issue to manage for loved ones that are not addressed by many Assisted Living Communities.

The current communities are having to adapt to the changing demographics and health issues. Most of the Life Care Communities planned on having their residents span a few decades and start moving in when they were in their 60s.

Today, the average resident is over 85 and 70 percent of them have some form of cognitive issue. The community did not plan for their residents being unable to manage their own medical care needs due to cognitive issues. On top of that, there is a cost to get the resident to a doctor in both terms of staff time and transportation. In the metro-DC area, a trip to the doctor for just the transportation averages $110 and this is for individuals who can walk.

When you are visiting, be sure to ask how they deal with the minor health issues like a cold or flu. Do they have regular visits by a doctor and how often? What types of doctors visit? Most communities are going to be unable to handle these issues but it’s better to know before you have an issue than learn about the advocacy and transportation needs after you have made the move. While you may still need to leave to get to a specialist, it is helpful to know they have a robust option for on-site medical care for many of the minor issues that may faced a loved one. Advised.

P.S. Ask to speak with the families of other residents and ask them to share how they have found the doctor. One reader reminded me that you may need to verify what the community sales person tells you.