Leave a comment

Rules of Engagement for Adult Children Caregivers

laughing-your-siblings-will-never-let-you-live-in-peace-8447044Normal families have sibling conflict … and can only expect that to escalate when it comes to caregiving. I (and my siblings) were incredibly lucky. We had our heated debates, but managed to navigate our journey and actually emerge as more connected adults. I have come to see how incredibly rare our family outcome. Maybe it was because we were losing both parents to dementia simultaneously, maybe because we actually all lived in different parts of the county … or maybe just because it was a testament to how our parents raised us.

I was the baby of the family and am not typically the one to be the primary adult caregiver. But I was the only one that was local.

When we began to have disagreements over things I thought had simple solutions, I proposed some working rules for us to work together and that we adopted. They were:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

We also had a general agreement that we wouldn’t discuss issues outside the family meetings. It made us talk and think through all of the issues, emotions, and complications together.

At the time, we used an online site for free teleconferencing called TalkShoe. The calls helped eliminate misunderstandings and have a better understanding of how we were each approaching and dealing with the loss of our parents.

In an effort to reconnect, we recently are having sibling calls using a video conference option called Zoom.

This is no easy journey. The worse outcome is that you not only lose a parent, but you fracture other family relationships as you are all dealing with the stress, grief, and frustration of being adult family caregivers. May you find a way to make it work for your family. Shared. 

 

 

Leave a comment

Little Proof that Supplements Improve Brain Health

brainfitnessWhen you have two parents with dementia, you start to worry about your own cognitive outlook. I poured over the research and have been exposed to a host of “supplement plans” proposed to families throughout my work and personal life. I have yet to have anyone emerge from these plans, that typically cost over ten thousand dollars,  with a noticeable change. I’m not a doctor, and I don’t really know if there is peer-reviewed research supporting this … I know the claims are made that they are proven. I just haven’t seen them positively impact anyone yet. And I’m very well connected to hundreds of individuals with dementia … so you think a great result would be freely shared.

The Washington Post carried a snippet of the story, but you can read the full summary that Supplements for Brain Health Show No Benefit – a Neurologist Explains a New Study. Everything I have read and seen play out jives with the explanation. However, it feels better to think that a simple pill can be a cure-all.

I believe that the food we eat makes a difference and even more so, the habits we develop now can make a huge difference to how long we can manage if we start to have cognitive issues.

If you use a calendar system and a to-do list, you could find life much easier to manage should you start to have short-term memory issues. In working with a variety of clients I have found those that have a habit of using the calendar and making to-do lists have an easier time of continuing to manage and control their own affairs. They don’t make your brain lazy and are actually recommended in the classes taught by Total Brain Health.  After going through the program, I highly recommend it. If you can’t find a class, maybe consider getting Dr. Cynthia Green’s book Total Memory Workout. You will find a host of ways to rev up your recall and be more educated about what you can do to improve your own brain health. Recommended. 

Leave a comment

Shining through a dementia diagnosis

A recent photography contest awarded three winners for their self-portraits. All of the contestants have dementia or Alzheimer’s and was organized by the Bob and Diane Fund.

demenitaphotowinner

Elia Luciani’s self-portrait from a mirror on a dresser covered with family photographs. (Elia Luciani). Please make sure to check out the photo behind Elia in her self portrait.

As I poured over the image, I immediately broke into a laugh when I saw the portrait she has hanging on the wall behind her. Not only is family an obvious piece of the photographers sense of self, but I have to assume that is her with her hands above her head making a silly face in a similarly set-up self portrait by someone else … maybe even a husband.

I savored the moments when my gracious Mother shined through her dementia. There were days when she immediately knew me and would talk about the family, or reflect on what my Dad would have said if were still alive about something fantastic in my life that I shared with her. She wasn’t able to ever perceive her cognitive loss, but just knew that “her brain was bad.” I missed her terribly when she was alive, and that loss carries on with me now that she is gone.

I hope you will take the time to view the winners and honorable mentions. It’s inspiring to see how many are living with, adapting and shining brightly after their diagnosis of dementia or Alzheimer’s. Awed.

4 Comments

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. 

 

 

 

 

1 Comment

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

Leave a comment

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.  

4 Comments

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.

%d bloggers like this: