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Is “rational suicide” the only option?

deathFor those of us caring for loved ones with dementia, we are often fighting a battle to honor their wishes and ensure the best life they can lead. My mother started joking about how we should take her out in my early 20s. I lived near my parents and saw them two and three times a week as an adult. My life as a caregiver started in my late 40s.

My Mom was the most vocal. She would often see something and say “If that happens to me, take me out.”  She gave me choices over the years from “push Granise’s chest on me” to “put a pillow over my head”.

As the dementia started to win, I had many discussions with my siblings over my angst. Mom was very clear, but I had no way to honor her wishes … without possibly going to prison.

I have talked about many of the choices we can make to better align with a loved ones wishes previously, but am always happy to share for anyone struggling with something right now. Please know you will make the best choice you can with the information you have today. Those you are caring for are lucky to have you in their life.

If you have something you’d like to discuss, put your notes in comments and I will respond (just put PRIVATE if you do not want it shared as a comment on this post).

Apparently, there is a growing movement for “rational suicide”. You can learn more about this in an article from The Washingon Post. I have internally grappled with this ideal for years. I applaud the move to assisted suicide, but someone with any form of cognitive impairment doesn’t qualify. I think this is incredibly unfair, but have no idea how we solve it.

I in no way want to dimish the move to help individuals that are suffering with suicidal thoughts. I believe it is a mental illness that has sadly hit very close to my own home.

So now I feel compelled to give air to this topic. We should not be forcing people to commit “rational suicide” if they have passed a threshold in which everyday living requires them to rely on others to be. I know I would LOVE an option as would many of the individuals and families I work with daily.

Anyone out there with some options? Wished. 

 

 

 

 

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Delirium and surgery common after 65

I am guessing that more doctor’s 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

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When our memories fail us.

As I was caring for two parents who had different types of dementia, I started to second guess my own memories. I started to worry that I was already failing cognitively and then I started to notice how often within my own household we would have conflicting memories of an event we had shared. It made me feel better … and worse.

Apparently, many emotional memories we are convinced we remember, turn out to change over time. In a story that ran in The New Yorker titled You Have No Idea What Happened by Maria Konnikova, it’s interesting to learn how our memories fail us … yet how sure we are that our memories are vividly correct.

simpsonchaseAs I write this on the 25th anniversary of O.J. Simpson’s famous drive in a white Bronco, my husband asks me if I remember where I was eating. I immediately know where I was. It is a major restaurant chain that I haven’t entered since this night … but it had nothing to do with that car chase.  I’m looking forward to finding out how different my memory is from my hubby’s.

The research shows that “the strength of the central memory seems to make us confident of all of the details when we should only be confident of a few.”  In one study, they actually ask the participants how confident they were of their recall of memories they had recorded two years previously. Five was the highest level and they averaged a 4.17. However, “their memories were vivid, clear—and wrong. There was no relationship at all between confidence and accuracy.” Worse was that when they were told they were mistaken — they just didn’t buy it.

Knowing how fragile memory can be has made me much more sensitive to how it feels to have your ability to remember challenged. No one wants to hear their memory is bad, but we all need to recognize that sometimes our recall may fail us.

As a reminder, memory loss is not a normal consequence of aging. And apparently we all have problems remembering “flashbulb” emotional events in our lives. Humbled.  

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When we can’t find the right words …

Cole&PoppopYesterday was my son’s college graduation. As I drove up, I struggled to shake the feeling of loss that swept over me as I faced another big event without my parents. Since they both battled different forms of dementia, it is a blessing they are no longer on this earth, but how I miss them being able to celebrate another Engineer in the family bloodline. My Dad and Cole always ended up in giggles when the two of them got together and he would have reveled in the graduation. 

As I sat at the ceremony listening to the Valedictorian, it became clear that no matter what your age, education, or beliefs, we are all struggling to find the right words to enter into civil discourse. As she and her classmates are preparing to continue their quest to make our world a better place, the things she shared with her peers felt immediately valuable to me as I work with many who have lost the ability to handle the complications of balancing a checkbook, negotiating a contract, or even planning a meal.

The added complexity in helping a loved one is that there are the familiar habits and patterns that may put your assistance out of the realm of ‘normal’ and cause discomfort. The best way for me to start a fight with my Mom was to ask if she wanted help with the bills and the checkbook. She didn’t sense any short coming in her abilities so my words felt like a betrayal when I reminded her of the missed water payment or the fact that she signed two contracts for the same home repair with two different vendors.

 

“Approach with humility and a desire to understand,” suggests Kate Hill. Give ‘space to silence’ and ‘don’t lock the doors’ — two ideas that I think can be applied simply to the role of caregiving.

I know the impatience I felt when I was working, raising two young kids, and also trying to help out my parents. I wanted to just take over and get things done. I needed to allow more time to cross the item off of the task list and include them in the process. So too must we apply this same approach to problems we are facing in our communities, states, and country. 

When our loved ones are already losing so much, the last thing we need to do is to add to the list of losses. I’m excited to see what this generation will do for all of us and appreciate the on words she used to suggest how to be better citizens, friends, colleagues, parents, children, and caregivers. Impressed.

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Lying to the ones we love.

Two things that should be a part of every caregiver bootcamp:

  1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
  2. There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.

I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.

When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.

Once I learned how to change, life for both of us got better. Shared.

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Giving Back the Checkbook

You know the feeling of helplessness when you don’t have any cash in your pocket and the thing you want requires cash? Well imagine if your loved ones took away your ability to buy things when you feel like you are making good choices?

In my job as a Daily Money Manager, I work for individuals who have usually been diagnosed with mild cognitive impairment or even a specific form of dementia. Usually, at the request of a family member they call and invite me to come meet. They don’t understand why the family is concerned.

I start by asking them how they feel things are going. The response is usually more of “I am managing” and then they usually confess they know they have made “a few over/under payments.” I explain how my job is to help them feel confident in their bill payments and cash flow management. Ultimately, I work to help them feel empowered by continuing to pay bills together.

If I see there is a big concern over exposure to fraud or predatory service providers, I will set up a new checking account. It allows the individual to have a checkbook but the amount of money that is at risk is limited to the money in the account. NOTE: Do not set up overdraft protection but allow the checks to bounce.

A second option is the TrueLink Card. It is basically a funded gift card that you can apply protections too like turning off the ability to charge fees for jewelry, liquor, or phone charges (there are over 20 categories you can tweak). You can see what has been purchased. It does has some complications and limitations as I have seen. One client has had the card fail when he was trying to buy a watch battery (deemed as jewelry) as well as was not able to get his favorite local cheese at the Farmer’s Market because they were using a portable pay device (deemed as a phone charge). I have been able to customize the options and pre-approve that favorite cheese vendor, but when he is at the market, he needs the card to work and it doesn’t always.

At the end of the day, what we want is for our loved one to have meaning and purpose and often, taking away the money can strip them of some independence they deserve.

Is there a way for you to give back that power to a loved one and help them regain a sense of self? Hoped.

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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 doctor’s, 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.

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