Category: My Dementia Caregiver Story

Is some of the unclaimed $58 billion yours?

bag of moneyMost American’s are unaware that $58 billion is sitting in state and federal treasuries — it’s money that got lost in the shuffle of a move, crisis and even death. As a caregiver, you should know about the MissingMoney.org website. You can do one search and see if any of your loved ones money ended up in a state treasury. Every year, I do a quick search to see if anything slipped through the cracks. A few years ago, we found a record for my dad and claimed $2,500. Turns out, something was left behind in Kansas when we moved away in 1969.

 

Given the amount of accounts you accumulate today, it’s easy to understand how easy it might be to forget about a stock certificate, utility deposit, or even a small retirement account. I even found some of my money that was for an overpayment to the county water utility that I never received.

HOW TO SEARCH FOR MISSING MONEY

To do a quick search to see if you are entitled to missing funds, visit MissingMoney.org. Enter your name and state and you will get back a list of possible matches. You should make the claim directly to the state treasury. Every state website has a simple portal you can use to initiate the process.

1) Go to the state web site where you believe you may have missing money

2) Search the state web site for “missing” or “unclaimed money”

3) Make a direct claim following the web site instructions.

Happy hunting! Enriched.

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MissingMoney does not include all states and not all the information — in particular some very old records. To learn more about this topic, check out Mary Pitman who wrote The Little Book of Missing Money.

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.

 

The unmistakable scent of Mom

momsstuffOne of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.

Over the course of our journey and this blog, I have told you about the two times we have moved mom. First, when we moved mom and dad from their Independent Living residence into Assisted Living. Then after dad passed away and Assisted Living was no longer the best place for mom, we moved her into a Memory Care community. During the first move, we took special care to find and store the dress she wanted to be buried in. Knowing that in advance and being able to plan for it is helping me move toward her life celebration service easier. I don’t have to wonder, squabble with siblings about the choice, or feel guilty because in the overwhelming process of one of the moves, we ended up donating her silk ball gown thinking she would never again wear it again.

Today as I drove mom’s clothes to the funeral home, I realize the car is filled with the scent of my mother.  It has been years since I smelled the mix of Aqua Net hairspray and Charlie perfume. I start to wage a battle of my will over my tear ducts. I lose momentarily and then begin to fill my mind with all the wonderful memories of mom from my 50+ years with her.

My grief over the loss continues to battle my relief and understanding that mom’s journey on this planet had run it’s course. Now is the time to revisit all the great experiences, lessons, and memories that contribute to the legacy of mom. Cherished.

Mom Really Did Play the Saxophone

TheSaxophonePlayerAs I work through the final plans for mom’s funeral, I’ve been going through photographs and land on one of her in a marching band uniform with a saxophone in hand. For more than a decade, when I was chatting with mom I often felt like she was recreating history. Some stories remained the same as her dementia progressed, but often there would be a statement or two that just made me go “Hmmm, O.K.”

As I was adapting to spending time with mom in the earlier stages of her dementia and before it was diagnosed, I would correct statements mom made that I knew were not true. I would like to tell you I quickly learned not to lock horns … but that was not the case. I finally realized that mom believed the things she was telling me and just started to go along with the conversation.

When I was getting a poster ready for the “life celebration” reception, I pull out a photograph of mom with a saxophone. I makes me laugh out loud. When mom mentioned she played the saxophone, I just thought it was a confabulation. Now I learn that she was telling me something real about herself all along. Humbled. 

How the Game of Thrones Soothed my Caregiving Guilt

downloadMy son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.

During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.

For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.

You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.

I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled. 

Is Lumosity Modern Day Snake Oil?

snake oilMany of us with a relative who has been diagnosed with dementia wonder if we can do anything to help guide our brain health. I’ve had two parents with dementia (Alzheimer’s and Vascular) which was one of the reasons I ended up on The Dr. Oz Show.

The expert Dr. Oz interviewed was Cynthia R. Green, Ph.D. who is a clinical psychologist, author, and one of America’s foremost experts on brain health. We have stayed in touch and when she recently shared a story that the scientist behind the most comprehensive study of brain training say apps like Lumosity are based on shaky science, I wasn’t really surprised. This month, the Federal Trade Commission cracked down on Lumosity, which has agreed to pay a $2 million settlement. “Lumosity preyed on consumers’ fears about age-related cognitive decline, suggesting their games could stave off memory loss, dementia, and even Alzheimer’s disease,” Jessica Rich, director of the FTC’s Bureau of Consumer Protection, said in a statement. “But Lumosity simply did not have the science to back up its ads.”

I have read several reports over the years that list some key elements of brain health and we all know there is a substantial element of our health that we can’t control. However, it does bother me that some people were lead to believe that playing games is a silver bullet. Exercise, socialization, the adoption of a Mediterranean diet, fish oil supplements, and cognitive training (versus brain games) are elements of my focus to lead a different outcome than my parents. It may still be for naught.

Plan B for me has been the use of systems like MemoryBanc to document my personal accounts, and details; and estate planning to put the tools in place to define my wishes and give those the tools to help should I need it.

While we would all love to be given a simple solution to perfect health, I hope you will consider implementing a plan b. Your loved ones will benefit the most. Wished.

 

Don’t Forget to Document your Passcodes … or Have your Kids Document Theirs

PN_headerToday I was interviewed on Parent Nation about why parents should have their kids document their usernames and passcodes. Most parents have no idea they have no right to the online accounts and assets of their children. It’s one of the ways our modern world has moved faster than the law and parenting guidebooks.

It’s not just a parenting concern, but should be a spousal concern. For those of you who share an Apple account, the The Washington Post recently carried a story, Her dying husband left her the house and the car, but he forgot the Apple password. This relatively simple issue makes no practical sense, but is the reality for those of you not aware that no marital rights or power of attorney can grant you this access. The idea of digital executor is still just a theoretical practice–unless you document your usernames and passcodes for the one who will step in and help or settle your affairs.

I think it’s so important, I have been giving away the chapter on “Taming the Internet” from MemoryBanc: Your Workbook for Organizing Life. This chapter gives you free forms to help you take control of your online assets, as well as share the worksheets with loved ones who can document their accounts and put them in a sealed envelope you hope you never need to open. I keep mine by my computer and frequently rely on them to help me access the more than 80 accounts I have. Every quarter, I give back the envelopes to my family to update and return to me.

I never expected to learn so much during this phase of my life, but the least I can do is share it with others in hopes that it will save you time, effort, and grief. Delivered. 

 

 

Caregiving and Siblings: It’s Important to Make it Work

kaywithsibs
Photo credit: Guy Browning (thanks for letting me boss you around to get this photo)

Dementia has taken our parents from us incrementally and cruelly*. We faced many hard decisions through the journey.

The most notable legacy my parents left behind was adult children that could work together. We had to overcome a host of challenges as my parent’s health was declining. We are like many families, we’ve got baggage from childhood and we problem-solve differently. Our parent’s estate plans named my sister because she was eldest and a lawyer. But my sister lived on the other side of the county, so it wasn’t really the most practical solution. It was one of the first things we had to discuss and addressed. I am the only local adult child, so it only made sense for it to be me. As the youngest, it brought in some expected issues like why would anyone listen to the “baby” of the family–with my parents in the lead. It took time to develop this new relationship.

I’m crazy for process and clear-cut solutions. When we began to have disagreements, I proposed some working rules for working 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 were blessed to be raised by parents who taught us how to communicate, even when we disagreed. We weren’t always in agreement, and noticed different things at different times. But we needed to work together to help our parents, so we did.

I hear the same issues from many other adult children I have talked with over the years. Most often, I hear how the conflict tore the family apart. I’m thankful that it really brought us closer together. We used an online site for free teleconferencing called TalkShoe. Putting us all on the phone together had a positive impact. We could hear the tone of the voice and ask questions of each other. It also allowed us to listen how our siblings communicated with each other. We eliminated the “he said/she said” misunderstandings.

When my siblings realized how much time a week I was spending to help, they suggested I get compensated. It wasn’t a huge amount of money, but it was recognition that I was spending a good portion of every week visiting, advocating, and assessing mom’s needs. My husband and I actually built the idea of compensation into our trusts because we have experienced it first hand and understand the toll caregiving takes on not just the primary caregiver, but the caregiver’s family.

My siblings were engaged, supportive, and I know many other families blow up on this road. As hard as this journey has been, I recognize how many blessings it has also brought to me, my family, and my siblings. Humbled.

*I don’t know if someone else said this first. Over the last week I wrote it on a post-it note when contemplating our journey. Please let me know so I credit you for this statement which felt very apropos to this post. 

 

 

Sad and Happy about Mom

doveAfter a week in hospice care, mom passed away on Christmas. It was incredibly difficult to navigate for a host of reasons, but I was glad my siblings had time to visit. Our goal was to keep mom comfortable. She will be missed, but unfortunately, I’ve been missing her for years as the dementia stole her away bit-by-bit.

I’m glad to know that she is now with dad and all of the suffering has ended. Conflicted.

Caregiver Alert: Are you experiencing “Compassion Fatigue?”

splatterDid you know that the feeling of anger, poor self-care, substance abuse, and hopelessness could be caused by “Compassion Fatigue?”

Today, I heard Stephanie Chong, LCSW-C discuss this term. I immediately felt a bit of relief knowing that it’s quite common within the caregiving industry.

Compassion fatigue, also known as secondary traumatic stress (STS), is a condition characterized by a gradual lessening of compassion over time. That is a very basic definition and Stephanie went on to discuss what this fatigue can lead to which includes symptoms of isolation, preoccupation, apathy, substance abuse, poor self-care, hopelessness, physical and even mental exhaustion. Now that I’m in about my 5th year of being the primary adult caregiver to two, then one parent, I’m concerned I am exhibiting some of the symptoms.

While I don’t feel less compassion to my mom or those who care for her, I’m feeling more anger around the need to constantly provide those in her care circle with insight into how my mom wanted to live out her final years. Because the job for caring for others can cause both compassion fatigue and burnout, there is a steady stream of new faces over the course of a year that help care for mom.

My last post “When More Translates to More Options for Failure” sure sounded a bit hopeless. Many of you have helped turn this into a digital caregiver support group for me. Thank you readers and comment-ers alike! Keep it coming.

What has been weighing on me is the constant need to advocate for my mom. I feel like I’m constantly telling a new member of her care team that mom wants to be happy and comfortable, but doesn’t want measures taken to extend her life. It gets uncomfortable when I need to follow-up with specific things to not do for mom, but also make sure they know I appreciate their help.

My mom was quite specific about not wanting to be spoon fed. Telling someone the thing they are doing as an act of care, is not what my mom wishes is painful to both of us in the conversation. While I don’t want to have the conversation one more time, I know I will need to because it is what my mom wanted. I need to be her advocate.

But it’s painful and I’m tired of having the conversation. The last time it happened I didn’t say anything. I started to doubt myself and wondered if I need to let them feed her because she hungry. However, she is totally capable of feeding herself.

I’ve used quite a few of the healthy coping mechanisms. But now that I have an awareness of this I also now have some other tools to help me the next time I need to have the strength to ensure mom’s wishes are being fulfilled. Soothed.

Three Technologies to Share with Family Over Thanksgiving

My in-laws live states away but are very interested in being involved and staying connected to our kids. On every visit with the grandparents, my kids will spend time giving an iPhone or iPad tutorial. However, it’s usually been to answer questions, but this Thanksgiving I’m going to make sure we all set up and run through these three applications.

I asked my kids (13 and 18 years of age), who prefer to type over talking on the phone, which technologies they like to use or would use more often with Grandmom and Granddad. Here are their top three:

  1. FaceTime/Skype

My kids have used both and share that it’s really about the video, which they find more personal and engaging. Thankfully, we all have iPhones, so we can easily use FaceTime to make video calls. This is the leading way my daughter stays connected with her friends. We have also used it to talk with our son who is now away at college. It’s so much more personal to see eye-to-eye as we catch up.

GLAM ALERT: Holding the phone down below your chin is very unbecoming … so be forewarned, you may find doing these calls from your iPhone also offers a limited workout for your arms as you try to keep the phone up near your face (and maybe a little higher for a more flattering view to share with kids and grandkids).

If you don’t have FaceTime, you can use Skype. You can use Skype from both smartphone apps and from an internet-connected computer.

  1. SnapchatSnapchat

My son sums up Snapchat as a “better way to send snapshots of what you are doing.” Not only does he find it easier than texting a photo, he showed me how you can easily add words, captions, emojis, and even filters to enhance the image.

I’ve witnessed him take hundreds of selfies and share them with friends. I opened up an account in hopes of making sure I had the opportunity to have him share a few of the good photos with me, especially now that he’s at college.

He’s more apt to respond to Snapchat than return a text.

  1. Words With Friends

wordsWhen we visit the grandparents at their cabin, we are usually huddled around a game of Bananagrams. When we aren’t together, it’s one way my kids can still have fun with Grandmom, who is the gamer in the family.

I hope you will find these suggestions give you some new ways to connect the generations within your own family and shrink the miles that may separate you. Shared. 

NOTE: In a related story that first appeared on Dot Complicated, “Why You Need to Know Your Kids’ Passwords,” I shared that creating a written list might be the only way you would ever be able to access a minor’s online account. What you agree to (usually without reading it) says that no one else has any right to access that account. For this reason, I recommend having your children create a written backup that goes into a sealed envelope I hope you never have a need to open. For free templates to document usernames, passcodes, security questions, and PINs, download a free chapter from the best-selling book MemoryBanc: Your Workbook for Organizing Life at http://www.memorybanc.com/tame.