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When Parents Refuse Help

noFour years ago, I wrote about how common it is for parents to refuse help from their children.

We all noticed that mom and dad were failing and very concerned for their safety as well as for the safety of others. Twice, all of my siblings flew in and we had a meal and shared our concerns with our parents. They deflected, delayed, and ignored our concerns.

Just last year, I learned that there is a medical term (Anosognosia) that describes the inability for someone with a cognitive issue to recognize they need help. Looking back, there are several things I would have done differently, but it took time to understand and adapt. Ultimately, I learned that I had to change because my parents could not.

Know that the first thing to recognize, especially for a mature individual, is that meaning and purpose is vital to their feelings of self-worth. While it might be easier to do something for them, can you do it with them?

Ultimately, I spent the first year plus being watchful and helping out when I could. I had to wait until their was a critical incident to be able to cultivate the change in my relationship with my parents so I could help. There was a broken hip, a stroke, and then the threat of being kicked out of their retirement community.

As a sandwich generation caregiver, I was constantly trying to plug the leaky holes in my parent’s life boat while raising two kids at home. I hope you will find this blog and the services of MemoryBanc can help make this journey easier for you.

If you have a question or hit a roadblock and want a suggestion, I’m happy to help make your journey easier. Use this link to see my schedule and set up a free 30-minute phone conversation. Offered. 

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The Caregiver Hangover: Stress

stressfreezoneFor almost a week, I’ve been managing my “stress-belly.”  It’s the term I have used for decades to describe the stomach discomfort I get that never coincides with poor food choices, but does seem linked to intense periods in my life.

My mom passed away over 4 months ago, and her burial was last month. I have been able to be more focused on my business, and am now working through my own medical and personal chores.

When I share with my friends my tummy issues wondering if I could suddenly have a gluten, lactose, or other intolerance, they remind me that sometimes stress shows up when you least expect it.

WHAT?  I don’t stress! It’s why I could say for years that the 4-hour tummy ache was my way of working out my worries. As things started to get complicated in my life most notably when my parents started to exhibit concerning behaviors, I hired a life coach. She helped me recognize that worrying about my parent’s, my kid’s, my job, didn’t change anything. I learned to focus on how I could improve things that were in my control.

While I’m sad that my mom is no longer here, I am still working out life after being a caregiver for so many years. The last think I would expect is for me to be stressed about it.

Within a day of my girlfriends reminding me that stress can happen after you face a crisis, my symptoms disappear. Cured.

 

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Even Doctor’s Struggle to Help Their Aging Parents

heartOnce you find yourself on the caregiving journey, you will be introduced to a network of individuals who spend hours helping others because they know how difficult this journey is to walk alone. They see the holes in the safety nets being put around our loved ones and stay involved to make things better for the others.

One women I met when she was caring for her mom is Ellen. She was near the end of her caregiving journey, and we were just getting started. She shared this story with me which not only brought tears to my eyes, but filled me with relief to know that even a doctor recognizes the huge need for a bedside advocate, as well as the confusing nature of the medical system and how even small details can make a huge difference when it comes to care.

In the final weeks of my mom’s life, I was in the hospital after she broke her hip. I was lucky to have a colleague that is an Aging Life Care Professional and a nurse who was able to help me navigate mom’s hospital stay and guide me on how to ask for and get the right resources.

For some insight that may help you in the future, check our Dr. Moss’s story: 6 Medical Breakdowns in My Mother’s Care. And 1 Close Call  Experienced. 

 

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Untangling a Loved Ones Affairs

tangledThe Wall Street Journal reported on the The Difficult, Delicate, Untangling of Our Parents Financial Lives. It chronicles the arduous journey the author and his wife faced when they needed to help their parents. This also applies to couples who have divided and conquered the household and financial tasks.

Many of us already know this story, and I’m both happy and sad to see this issue getting more attention. I believe it all comes down to what we are going to do differently.

What I don’t see being addressed by the media or by the American Bar Association or any of the Estate Law or Elder Care groups is an education on the value of having a Durable Power of Attorney and Healthcare Directives in place.  These documents are meant for the living and really offer us a Plan B should we face even a temporary incapacity and want our loved ones to be able to truly help. So I am going to keep trying!

On that note, have you started to organize your own personal and financial affairs so that someone could help you and have you discussed these details with the person who you have named to step in and help?  This is necessary to ensure you live the life you want.

Getting this done now gives you a lot more choices and makes it easier to have the discussion when a medical crisis isn’t looming. You can always download a free copy of the checklist of the key documents to get organized to get you started.

For a more meaningful gift for mom or dad this mother’s/father’s day, how about showing up and sharing with her YOUR plans and how she/he might be able to help you? Asking for advice is a great way to begin having this conversation and may give you the opportunity to learn a few things about mom and dad’s plans.

I have actually been surprised to hear from many clients that the children are refusing to have this conversation. I hope you aren’t one of them. Surprised. 

If you want to get one of the books to help guide you through the process of getting organized, here are links to:

 

 

 

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Will Digital Data Ever Be Secure?

digitalworldAfter 20 years working for technology companies, I recognize I sound like a Luddite when I warn people that using password keepers, and encrypted data solutions are not the best option for securing your data and sharing it with a loved one. There is a risk of a breach, and the security put into place can prevent a loved one from stepping in to help you when you need it. But the news stories just seem to make this issue more confusing.

I didn’t believe Apple when they said they couldn’t break into their own security system. I believe the threat of exposing that capability would only make most adults recognize the inherent risk in using cloud storage or relying on their iPhone to keep their secrets. Recently, the New York Times reported that U.S. Says It Unlocked the iPhone Without Apple.

I spent a year working for a company that provided digital security solutions for the U.S. government. It required more than just encrypted data, and as we have all learned, most security breaches happen because of human error. According to Equifax, the leading source of identity theft is a lost wallet. After that, its typically cited as “phishing” where criminals send out compelling emails to gather your personal information (some of which they may get from corporate data breaches), and unfortunately enough individuals readily provide making this a lucrative criminal tactic. We also hear about the bigger breaches including the recent breach at the Department of Justice getting access to the profiles of 9,000 employees of the Department of Homeland Security.

So, is your digital data secure? I believe it really comes down to your comfort with the risk. Personally, I would never store my usernames, passcodes, or personal information connected to my finances in the cloud. I keep a list on a flash drive that I print out regularly so my family could easily access the information that surrounds our shared lives, and that they would need to manage if I were unable to do so. But I recognize many others enjoy the benefits of using password keepers.

Recently, there have been a host of virus attacks at hospitals making your digital health care records unavailable when you might need them. Because power goes out, web-sites fail and wi-fi isn’t always available, digital storage shouldn’t be your only source of record-keeping.

I drink my own kool-aid. When a client asked me to create a digital tool to collect and organize her information based on print version of the MemoryBanc Register, I did. In the past year, it’s been almost half of MemoryBanc product sales. The Flash Drive Edition prompts users through the key information in an editable, printable PDF document.

Because of the laws surrounding digital data, the only way to truly share it with others is to give it to them, doing that is against most of the rules of the providers but in this case, I’m a rule-breaker.  For those of us still looking at a friend who passed-away on Facebook, or that get email from a criminal who hi-jacked their still open account, please consider how you would share this information because there is no other way for those around you to deal with this unless you do. Pleaded. 

If you are in the metro-DC area, you can attend Taming the Internet at McLean Community Center on April 7, 2016 to learn more and have an in-depth discussion on this topic.

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Am I Done Grieving?

Kay w Chaplain

Thanks Max for the photo!

I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.

The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.

About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.

I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.

Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused. 

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Understanding My Choices When Mom Ends Up in the Emergency Room

Caring ConsiderationsMy mom had fallen and as a precaution her memory care community suggests we send her to the Emergency Room because she is complaining of leg pain. When I arrive, I immediately understand that everything for mom has just changed. Her leg is propped up but she looks uncomfortable. Any attempt to move her leg results in “wait, wait, wait.”

When they take her for the X-ray, I use the time to unravel. I know that she has broken her hip and know that the next 24 hours is going to result in some difficult decisions. Mom is 84 years old, described by her doctor’s as “frail” and well into a moderate stage of multi-infarct dementia. When the doctor comes in to confirm a broken hip, she gives me two options: Surgery or No Surgery.

Because I already experienced the consequences of a broken hip with my father who was in excellent physical condition, but never really cognitively bounced back after anesthesia, I cringe at the idea of what would happen to my mom.

The doctor explains that we would be doing surgery for pain management, but the Do Not Resuscitate (DNR) order in place would have to be lifted if this option is pursued. Now it’s mine turn to say ”wait, wait, wait.”

I realize it’s time for me to call in an Aging Life Care™ Professional. I need help navigating the choices for my mom and making sure I follow her wishes for end of life care.

I called Caring Considerations and by morning Debbie Aggen, RN, CSA® meets me in the hospital room. I explain to her that for pain management they suggest surgery, but are telling me I have to lift the DNR in place for my mom. My mom was very clear that should she lose her cognitive abilities, I should put a pillow over her head. While that isn’t really an option, when the doctor and I discussed it two years ago, the doctor put into place the DNR. Should mom have a critical medical emergency, she did not want extra measures taken to sustain her life. I don’t understand why the doctor is insisting that if mom has an issue during surgery that they be allowed to resuscitate her. I can only imagine a weaker and battered mom coming out.

Debbie listens to me and reviews my moms charts. She recognizes what I could not, my mom was most likely not even going to be able to qualify for surgery. She gives me some language to use and suggests that I ask for a geriatric consult. When the geriatric doctor arrives, I get to have a real conversation about my choices and my moms wishes. Eventually mom is discharged into hospice after it is determined that she has too many other health issues to withstand surgery.

Debbie visits my mom when she returns to her memory care community, She counseled me as I watched my mother lie in pain in her bed and felt helpless to soothe her. Debbie helped me understand the choices, and use the right language to help convey to her hospice team my mother’s wishes and ensure she was comfortable during this last stretch of her life.

It wasn’t easy and I had a host of engaged siblings. However, none of us knew how to best navigate mom’s condition and having Debbie by my side and a phone call away was a lifeline for me as I struggled to help mom. I hope more families will begin to understand the value of professionals certified in aging life care / geriatric care management, which is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.To learn more about Aging Life Care, you can visit the website for the association of dedicated to supporting these professionals. Benefited. 

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