Tag: dementia and emergency room visits

You have been diagnosed with Dementia. Now What?

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.

When the outcome wasn’t quite what you wanted.

I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.

As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?

I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.

When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.

When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.

Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.

The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.

Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.

There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.

What you Should Know if Dementia is in your DNA

For those of us caring (or have cared) for parents with dementia, you should know there are a variety of factors that we can control that will reduce our risk.

The first is good news for those of us that worry that genetic factors have sealed our fate.

Association of Lifestyle and Genetic Risk With Incidence of Dementia (JAMA, July 2019) The study sought to determine if a healthy lifestyle was associated with lower risk of dementia, regardless of genetic risk. They found that a favorable lifestyle was associated with a lower risk of dementia among participants with high genetic risk. There is considerable evidence that individuals who avoid smoking tobacco, are physically active, drink alcohol in moderation, and have a healthy diet have a lower dementia risk.

The next study reports that higher levels of daily physical activity may protect against the cognitive decline and neurodegeneration (brain tissue loss) from Alzheimer’s disease (AD) that alters the lives of many older people. This was from researchers at Massachusetts General Hospital (MGH). Exercise offers protection against Alzheimer’s (JAMA Neurology, July 2019)

I noticed what a difference exercise made for my Dad who was diagnosed with Alzheimer’s. I worked to encourage him to get exercise, but it got to the point that the only way it worked was when I would challenge him to play Racquetball with me. He had a group of friends that he regularly met in the mornings, but after he fell on the Racquetball court and broke his hip, he was just unable to return more because he couldn’t manage to plan ahead and would not allow me to help. When I did get him moving he was just more communicative. I do need to add that he recovered from his hip surgery and was still able to beat me. While I could run, I just couldn’t outsmart his crafty shots.

I have also seen this with the older adults I work with. The more they are engaged with others and active, the better they seem to manage when it comes to working on daily finances and household chores. I have many that really want to stay in their homes but also don’t realize how isolating that can be.

The middle stage is hard to navigate as our loved ones think they are managing but are unable to recognize what they are not able to do or follow up on. If there is anyway to incorporate friends who can help them return to an activity they shared it will give them both a social and a physical boost?

The research has proven that we aren’t predestined to the fate of our parents if we have a favorable lifestyle. The good news for our loved ones is that exercise will help them even after a diagnosis. Let me know if you have had some success getting your loved ones that have been diagnosed moving again. Encouraged.

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 treatment. Hospice 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 copies of everything in your Wallet: Healthy Habit 10

wallet

Should your wallet ever get lost or stolen, having copies of everything that was in it will minimize your stress. It will save you a lot of time when you need to call to cancel credit cards and follow up to request replacements of medical or insurance cards.

It will help if you make notes on the credit cards in your wallet that are set up for auto-payments for other services. A few things you should know about this:

  • Some credit card companies will ask that you pay for charges made on a lost card if you never called to report it missing. When they added the chip to our credit cards, they now have the ability to know if the credit card was physically used. If your card is not in your possession, but you did not report it missing, the credit card company fairly has the right to hold you liable for those charges.
  • Many larger vendors have dozen’s of 800 numbers linked to the specific credit card account. If you have a copy your card you have quick access to the direct number to report the card lost/stolen as well as the identifying information they may request from you about your card.

If you are incapacitated when your wallet is missing, this gives your loved ones an easy way to step in and help you.

Recently, I had a client whose wallet was stolen while he was in the hospital. Unfortunately, I had not made a copy of everything in his wallet and had to wait until he was well enough to talk through and figure out what he was carrying in his wallet.

It’s now one of the first things I do when I work with a new client now. Warned.

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. 

Delirium and surgery common after 65

I am guessing that more doctors liked when patients were not armed with so much information. However, between whole sections of our daily newspaper that cover health issues and the internet, we can probably be everything from better patients to difficult to help. As an individual with the need to constantly learn, I love pouring over the Health & Science section of the The Washington Post. Today, it includes a story from Muriel Dobbin who talks about the delirium she experienced after surgery. Apparently, up to 46 percent of all surgery patients are struck annually by “postoperative delirium” that is marked by confused thinking, disruption of mental faculties, and anxiety. In older patients, the figure hits 70 to 87 percent who end up in intensive care. It can last days, weeks, months, and in some cases years.

delirium
Do your loved know how to access your digital accounts if you were temporarily unable to manage for yourself?

In general, we are bad at making up a plan B for ourselves should we be incapacitated if only for a few days or weeks. It’s why more than $60 billion is sitting with state and Federal treasurers — no one documented their money or assets and how to get to it and eventually it ends up in the unclaimed money pool.

While I walked into this recognition because of my time as a caregiver for my parents, it made me realize how fragile my own household information was and how important it was to create a roadmap of our accounts, document all my user names and passcodes, as well as write down the answers to all of my security questions.

Once a week I hear from an adult child that is frustrated that their parent doesn’t have this information together and they are overwhelmed. My first recommendation is to do it for yourself … and maybe do it with your loved one so you are both organized. This is not just something you need to do when you hit 40. The complications of our digital word make this something every adult should do.

Most often, I end up walking into an older adults home and sorting through piles of mail to try to quickly build a financial profile. I’m typically working with a spouse who has no idea how to even begin on top of the grief and worry they are feeling as a loved one is in a hospital or rehab facility. For many baby boomers, I am finding that they manage their own accounts and often divide and conquer and don’t have a shared vision of their household assets.

I hope this will give you the incentive to now do it for yourself. You can get a free checklist of what to organize here. It won’t require more than 2 inch ringer binder to get it together. If you would rather be walked through the collection process, you can order the workbook on Amazon for $17.16. Recommended.

To see if you have money in the missing money pool, visit www.MissingMoney.com