End-of-Life Directives and Dementia

I lived the reality of managing end-of-life wishes for individuals with dementia. It is hard to navigate a medical system that is trained and geared to sustain life.

If you are in a position to care for loved ones with dementia, this article in The Washington Post is a good overview of how complicating things can get even when advanced medical directives are in place.

After witnessing many family, friends, and clients live through dementia, I am always hopeful that things will change in the coming years. The idea of assisted suicide doesn’t include individuals without capacity. For inviduals with dementia their gradual loss of capacity impacts their ability to advocate for their medical wishes.

There are now “advanced directives for dementia” but for a variety of reasons, many legal, they may not be followed.

The reality is that just having the legal documents in place and all the planning in the world is just not enough in many cases — and especially when there are cognitive issues. There is the need to have someone advocate for your needs and manage your affairs that goes beyond living in a continuing care community that provides a play to stay and food — but does not help protect and manage your finances or manage your healthcare to your personal wishes or advance directive document.

The woman in the story requested VSED – voluntary stoping eating and drinking – to end her life. She has been diagnosed with frontotemporal dementia and the continuing care community she bought into to manage her care needs has now told her they will not be able to follow her directives. Apparently, many states have ruled that food and water are basic care and can’t be withdrawn.

There are ways to find trusted resources to help manage these needs for you. I became a Daily Money Manager or basically “a professional daughter” after losing both of my parents to dementia. I work with Aging Life Care Managers that can help navigate the health issues and advocate for your health care wishes.

There are options and as these issues come to light, many more options will be forthcoming. Hopeful.

Please tell me what you have done or are doing to address these concerns (and if you have seen the in action.)

Making the Best Choice Medically for Mom & Dad

One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.

A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.

My family faced these difficult choices twice.

My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.

When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.

I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.

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. 

 

Make color copies of your important personal documents and include a directory of their location – Healthy Aging Action 25

birth cert

In order to get my “Real ID”, I had to show up with a few of my own personal documents. There will be several times in your life when you are going to need these papers and most likely, will have to provide a color copy.

Most agencies require color copies because they are more difficult to alter.

Caregivers know how important having access to health insurance cards and personal documents like birth certificates can be. There were many instances when I needed to have copies of my parent’s military, social security, birth and marriage certificates. I also needed a host of personal documents as their Executor.

Take ten minutes to go to the color copier you probably already have at home to make copies of your

  • Birth certificate/naturalization documents
  • Social Security card/number/statements
  • Marriage license/divorce /child custody documents
  • Driver’s license
  • Military identification/service records
  • Passport/green card

Put them in the same place you have stored your other important papers and estate plans. The good news is that once this is done, you really don’t have to do it again. Just make sure they can be easily found when you need them. Encouraged.  

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.

Tour the Local Adult Communities – #21

50plusadults

In my role as a caregiver, I learned that my own community had very few aging life care, memory, or assisted living communities. I toured all three at the time to understand what they had to offer. I learned that the one we liked the most had a really long wait list.

Now that I work with older adults and their families, I have seen that most of my clients are only moving in AFTER there is a critical incident. Sadly, that limits the choices since many of the best communities have long wait lists.

When I start to work with an individual and family because they need help with the day-to-day bill pay, medical care or home upkeep, I always suggest they tour and select one. You can get on a wait list and you never have to move in, but should something happen, YOU or YOUR LOVED one got to choose the place.

For many communities, the individuals on the wait list have the ability to use the community for any short-term rehabilitation or skilled nursing needs.

It is reported that one in three working Americans will become disabled for 90 days or more before age 65 (TMA) and the U.S. Department of Health and Human Services reported that at 65, 7 out of 10 American’s will need long-term care services. That information means that most of us are going to need some help and what we do know gives us more control over future events.

You may find a local 50+ community in the area that might be better suited your lifestyle. There are now a lot of choices you can make for living well.

You have probably received a postcard inviting you to a local community or heard about a nearby senior fair. It’s worth an hour of your time to get familiar with the resources for when someone needs them. Suggested.

Write or Print out Your Usernames, Passcodes, PINs, and Security Questions and Answers – Healthy Habit #18

digitalkey

Passcode keepers and your browsers’ ability to save access codes are time savers. However, should you have a shared household, need to step in and help someone, or have someone step in and help you – without this information the inability to access your online accounts can be a huge roadblock.

I know we have been told NOT to write down this information for years; I get that for employers who have IT departments who can reset your access. At home, we don’t have that system and having this written down will save you time and frustration.

How many times has your answer to your own Security Question been rejected? Every time I do a public speech on What to Save and What to Shred, this question always gets an uncomfortable laugh as half the room raises their hand to admit this has happened to them.

Have you ever needed to contact your phone provider or the power company and the account is in the name of your partner, roommate, or spouse?  If so, you will know that you will be unable to make changes or service specific account needs if the person to whom the account is titled is not on the call with you. For the variety of accounts that fall into this category, I learned long ago to login as the owner of the account and handle our service needs in the portal. Saves ME time and allows both me and my spouse to fill in for each other should we be traveling or unavailable.

I have a book that my husband and kids are familiar with that includes all of my usernames, passcodes, security questions/answers, and PINs. I use the book every week to quickly look up or update my online accounts. The average consumer has 90 online accounts, and as a business owner, I have closer to 150 accounts.

My husband and kids also have documented and shared their information in case I ever need to step in and help them. For my kids I told them to put it in a sealed envelope I would only open in an emergency. It was an easy ask since they knew I had already provided them with an option to access my accounts. Parents have no online access rights to their children’s accounts.

The good password keepers have an option to print out a summary and I hope you will do that. In many cases, I have families that have shared this information in a document on their computer only to find out that no one knows the passcode to get into the computer. So I just recommend you have one option be paper access that can be stored in a safe or even hidden in plain site.

I guarantee having this will save you time and angst and be a huge help to those that may need to access your shared accounts when you are not home, or provide them with the keys to your digital legacy should they want to protect it and you are unable to do so. Advised.

Get Powers of Attorney and Share Them – Healthy Habit 17

poa

If I could make one thing happen, my wish would be for all Americans to have a ritual of putting into place powers of attorney when they legally become an adult. If we had the understanding that should something happen to us whether we are 18 or 80, these documents will allow someone to help.

My son received these for his 18th birthday. Initially, I was most worried about being able to talk to a doctor if he got hurt. As an athlete I knew he would be traveling with his team and wanted to make sure I could get answers from the doctor if he got injured on his travels.

However, what scared me more was how could we help if something happened to him after college and he was living on his own. I’ve come across families that had to step in to help their adult children and were totally unprepared and unable to help.

If this was just a standard rite of entering adulthood, I think we would all have better habits of managing our lives and information so that someone could help us if we needed it. We also wouldn’t make getting these things in place something you do when you get older since every adult should have these.

I’m frustrated that most American’s equate creating an Estate Plan with end of life wishes. A good Estate Plan includes both financial and medical powers of attorney, beneficiary designations, end of life wishes, a Will and maybe a Trust. When I work with families most of them believe they are all set because they have done their estate plans. When I ask them who is the power of attorney and if they have a copy of the document, I’m never surprised when “no” is the answer. These also aren’t once and done tools. You will need to update them over your lifetime.

For those of you caring for a loved one already, you know how precious, valuable, and necessary the power of attorney is. If you don’t have these documents, please know that someone diagnosed with dementia may still have decisional capacity. Ask their doctor to validate this and get these documents into place.

Your plans won’t help you if the people that would step in to help don’t know about them or where they are.  So I hope you will make it a habit to confirm and check in with those you have named as power of attorney annually. Hoped. 

Ask your friends how they are spending their retirement – Healthy Habit 11

successful aging

I have a neighbor that is spending time in a southern location and loving it. She’s quite content and wonders why the rest of us are still working. I am actually frightened of the idea of having unstructured days without a goal.

In working with older adults, and after watching how “retirement” dulled my parents zeal, I’m wondering what the rest of my life will look like. I believe the brain is a muscle and you either use it or you lose it. I know it’s not that simple, but as my friends are all starting to plan and migrate off into varied paths after full-time careers, they are all going to have to sit through my Q&A.

I also have a variety of adults over 70 and 80 that are community dynamo’s I hope I can emulate as I continue to circle the sun.

What I have witnessed is that most of the individuals I’d like to follow are engaged in their community in meaningful ways. While they also tend to disappear for a few months on some grand excursions, they are also making a difference on a daily basis through volunteer activities, board participation, and even mentoring.

Everyone has a different idea of what the rest of their life should look like, and it seems like we have more choices than ever. I hope you will open your mind and learn what and how those around you area navigating into their 60s, 70s, and 80s.

Not only will you increase your social activity which is a healthy habit, but you will also get the opportunity to expand your vision of what the rest of your life could be. Imagined. 

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.

Falls are Game Changers for Older Adults

FallRisk

I know you have heard or seen a lot about the risk of a fall. It seems like the smallest of worries when you are dealing with concerns over personal and financial safety.  However, it looms as one thing that changes EVERYTHING for many of the clients with which I work. It was also the pivotal event that preceded my mom’s death.

For my mom, ending up the Emergency Room after a fall in her Memory Care community resulted in another small stroke (or maybe two). While the doctor suggested surgery, I struggled with the idea that if she emerged from surgery, she would actually be cognitively worse and have to manage through the pain and recovery. She didn’t recognize me at the hospital and she was no longer swallowing her food. While the medical solution was surgery, I was advised to tell them she would prefer to “let nature take its course.” The initial tests confirmed that she was too frail to survive the surgery and she moved into hospice care. Unfortunately, my experience is more common than most realize.

According to The Washington Post, “researchers found that frail older women who broke hips were unlikely to fully recover their prefracture qualify of life, even after as many as 10 years.” Another study from the Journal of General Internal Medicine found that only 31 percent of the cohort they followed after breaking a hip recovered to their prefracture ability. They did find that many of the adults were already frail and had trouble walking, dressing, or bathing before the fall.

There are several things that can be done to minimize the fall risk and include:

  • Get exercise. A variety of types of exercise can help from strength training to aerobic activities. Getting someone who has never exercised to exercise can be a fools errand. My mother never exercised but was very active and loved to walk, so we worked to get regular walks. When she needed to move into a Memory Care community, we found one that allowed her to freely (and safely) walk the grounds.
  • Take Fall Prevention Measures. Remove trip hazards like area rugs and keep the floor tidy. This is a ‘no brainer’ that can be harder to manage if your loved one is resistant to give up the rugs they have always had in the hallway, or if they don’t value a tidy room.
  • Eat Well. From addressing any vitamin deficiencies like osteoporosis or neuropathy to maintaining a healthy weight — all are contributing factors to better well-being and fitness.
  • Stop Smoking. Apparently they have found that smoking delayed the heal of a fracture!

I figured being over-prepared is the best defense. The smallest of falls can be the one event that blows up all of your well-made plans. Maybe it’s time to consider how to incorporate ways to combat fall risks into your plans. Recommended.