Tag: Family

This will not be “Hanksgiving”

thanksgiving2Thanksgiving is my favorite holiday. It’s all about family spending time together around a meal. I was raised with family dinners and am sometimes fighting to maintain them in my own household. Now that we are usually down to three, we usually only set the dinner table on Sunday.

This is the first holiday without a parent for me. My husband and I talked through how this might be our smallest Thanksgiving with just the four of us around the table. Last year his parent’s were visiting. The year before I brought mom over to the house. We counted back through the years. For nearly two decades, we have hosted Thanksgiving at our house and my parent’s joined us.

It was just five years ago that we realized how unsafe it was that my parent’s were still driving. When mom and dad had not shown up when expected, we started to call their home and their mobile. Eventually, we get a call from a gentleman two neighborhoods over who said my parents were on their way. When they don’t show up, we wait another 45 minutes until I get a call from my dad from a pay phone. They are now about 15 miles away and have no idea where they are. I tell him to stay and I drive to them so they can find their way to my house.

Two-hours later than we were planning on eating, we finally sit down to enjoy the meal. However, I was so upset and worried, that I could barely eat. My parent’s are agitated after being so lost and are really unsure about what happened. Not a word about it is mentioned at the table. How I don’t miss those uncomfortable days one bit.

How I do miss having my parents join us for Thanksgiving. A time to relax with loved ones around a great meal to share our appreciation for each other.

Many have shared with me how the holidays the first year are the most difficult. I didn’t notice it as much with dad because I was so worried about mom dealing with those holidays. Now I clearly recognized the void.

I am most thankful that I had such wonderful parents and had the opportunity to help them lead a life with dignity until the end. I will spend my time with a hanky and mourn their loss. But I will work to count all the blessings we have and enjoy the time with my husband and kids. Thankful.


As I look at the room around me, I see my parents are here with us. The room is filled with furniture from their home, pictures my mom framed or painted, or things I bought with them at one of the many auctions we went to together. Blessed. 


 

 

Sam Huff, NFL Hall of Fame Linebacker,Validates that Estate Planning is for the Living

samhuff
Sam Huff in 2012 (John McDonnell/THE WASHINGTON POST)

In the story in The Washington Post titled Sam Huff needs help making life decisions; there is a fight over who should do it, he validates why every adult over 18 should set up and be very clear about whom they want to represent them by putting into place a durable power of attorney and an Advance Medical Directive (AMD).

 

His story is complicated because there is a disagreement between his daughter, who Huff granted durable power of attorney in 2011, and his domestic partner, who he named as his agent in his AMD. This case illustrates why it can be problematic to have one person in charge of your finances (the one with the durable power of attorney) and someone else that would make healthcare choices (the one named in the AMD).

When they don’t agree, the brunt of the conflict usually penalizes the individual that needs help. In this case it’s Sam Huff.

This story isn’t about dementia, but about the need for everyone to put into place estate planning tools. Good estate planning is for the living.

I’m going to go out on a limb and guess that the lawyer that wrote up these two documents might not have been dedicated to the practice of estate planning. Quite possibly, he may have used a tool like Rocket Lawyer that might not educate on the issue of picking different individuals for these two roles. While there might have been a good reason it was done, right now we are seeing exactly why it’s a bad idea.

Even if they weren’t having this very public disagreement, there are many other ways this conflict plays out. For Sam, the person with his AMD might select a memory-care community they believe will best address his needs. However, the person who would be making the payments could refuse to complete the application or pay for the community.

Sadly, in this story everyone is losing. I hope you will use Sam Huff as an incentive to get to an estate lawyer and at least get a durable power of attorney and Advance Medical Directives in place. You never know when you might need them, and for a few hundred dollars, having them done right will serve you well. Advised.

20 Things to NOT Say to a Person with Dementia

20-things-not-to-say-to-aperson-with-dementia-updated-6june2014.jpgThis list comes from Kate Swaffer who after being diagnosed offers a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this. She has lovingly challenged, advised, and counseled me quite a few times on my journey. We even launched a Q&A blog where we peppered each other with questions.

As a follow-up to my go-to strategies for family visits, I plucked a few key tips to consider and am listing my top ten:

  1. Don’t tell the person they are wrong.
  2. Don’t say “Remember when … “
  3. Don’t correct or challenge trivial things.
  4. Don’t assume they can’t understand you because they are silent.
  5. Don’t think they can’t communicate just because we can’t speak.
  6. Don’t talk about them to someone else in front of them.
  7. Don’t remind them of a death of a loved one or pet.
  8. Don’t blame them for the changes in their behavior.
  9. Don’t assume they can’t answer for themselves.
  10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

It is easy to read the list, but not as easy to make these part of your actions when you are visiting. I am going to share my individual experiences with each of these over the next month. It time for me to learn and I hope my mistakes will help you learn faster than I did!

Be mindful of the words you use, and forgive yourself when you make a mistake — just build on what you are learning. Recognize that the person diagnosed with dementia still has the same craving for meaning and purpose that is the core of every human.

The changes in behavior are not hidden personality traits. As the brain is changing, so is the person living with dementia. When you have met one person with dementia, you have met one person.

Thank you to Kate who continues to be a beacon of hope living with dementia working to provide us with inspiration, love and truth. Admired.

Prepping for a Family Visit

KidswithparentsSummer is filled with family visits. A clever girlfriend termed these visits “oblivations” since for some, these visits don’t quite feel like a vacation, but require both the planning and money of one. This summer might be the time when you start to notice subtle changes in a loved one, or a time when you are planning to connect with a loved one who is living with dementia.

In terms of the practical visit, a few go-to strategies include:

  1. Arrive with a smile on your face, and calm in your soul. I found my parents fed off of my emotions. When I arrived rushed and task-oriented, the visits generally went very poorly. When I arrived with the mind-set of being in the moment, we had a great time. I realized that my parents would reflect the emotion I walked into the room with and would take time to reset before every visit.
  2. Be prepared to carry the conversation. Typically, short-term memory is one of the first things to falter. Asking about what they ate for breakfast, did yesterday, or even current events might be challenging for them to answer. I would arrive with pictures, a puzzle, and a few stories I could share. When my parents did talk, I would actively listen and join in the journey. I didn’t always do this, early on, I would correct the story or challenge the memory, and even use the word “remember”. While we grew up being able to discuss things and challenge ideas, doing this around my parents after the dementia was diagnosed turned into heated arguments. Even a soft suggestion to “remember” often made my mother anxious because she did not remember. When they spoke, I would stop talking and actively listen.
  3. Learn to hit the reset button. This applied to both my own attitude and my parents. Some days, getting the same question, or having my mom pick the same fight over and over were too much. When I started to loose my patience, I would excuse myself to visit the restroom, grab a soda, or return a phone call. The mini-breaks allowed me to reset my own emotions. Some days, I used the reset tactics to redirect my parents too. Often after I took a break, I would suggest we change location or start a new activity to help get the conversation off the topic that was creating anxiety for one or both of us.

My kids were helpful and willing foils for many of my visits. For about a year, my daughter was a trained wingman who would reset any issue just by being a 10-year old silly distraction. My son would quietly engage with my dad and I still giggle when I think about the time he unwittingly got my dad to return a 1.75 liter bottle of vodka just by asking “Pop-pop, you want that huge bottle of vodka?” My son had no idea I was already plotting on how to get it out of the shopping cart.

Eventually, for both parents, we got to a stage when I recognized it was too difficult for my kids to handle. I wanted my kids to understand what was happening and why it was important that I was there to help them. I knew my parents treasured every visit, but eventually I recognized that my parents in a moderate stage of dementia might be the only memories left of “nana” and “pop-pop” my kids would retain. Thankfully, my husband and I have shared many stories of good times with my parents, and they have gotten to hear my siblings and I endlessly revisit some of the classic family tales.

We all have a different journey and I hope some of these tips will help you. Suggested. 

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.

What I Learned as a Caregiver Can Help Millions of Families

wbalpicThis weekend I was interviewed by Jennifer Franciotti on WBAL TV. She interviewed me about my best selling book MemoryBanc: Your Workbook for Organizing Life. While the simple answer as to why I wrote the book was that my parents health failed and managing all the information around their lives was overwhelming at times. Most of you know the complications, stress, grief, joy, love, and commitment it takes to be a caregiver. Having to manage all the details became the burden that overwhelmed me so I created a reference system to make their information easier to retrieve.

The silver-lining to my journey has been that the tool I created to help keep my parents information organized, is really a tool that can help millions of families. I’m honored to say I have already had many families share with me what a difference the system made in their household, from an active family of five, to empty nesters, as well as senior couples.

What we learn as caregivers, is that many skills we develop apply to our everyday life. Prepared. 

The Complications of All Mobile Phone Family Plans

My son’s phone died. Of course my husband is traveling and my son is leaving for an overnight trip. I’m not used to the idea of him leaving without a phone. I can’t text him “nite-nite” and I can’t see where he is on the “find my iPhone app.” I really want him to have that phone before he goes.

Our mobile plan is all organized under my husband’s account. When I show up at BestBuy, I can get in with his social security number and validation of my phone account, but for this matter, we really need to login to the portal to understand our upgrade options. Right now I’m being told I will have to pay a $200 penalty on top of the new phone fee. That’s unacceptable.

For those families like mine where you divide and conquer accounts, bill pay, and household services, check out this free solution that captures usernames and passcodes. I know that the usage terms don’t allow for sharing, but I’m going to make sure that my family can get what we need when we need it. For that reason, I created a simple solution for sharing our online information so that a loved one could get what they needed in the event that either my husband or myself are traveling.

My solution is actually a chapter in the best seller MemoryBanc: Your Workbook for Organizing Life. To download the free chapter called “Taming the Internet” visit MemoryBanc.com/downloads.

A Disorganized Home, Stress, and Family Life

Would you believe that a disorganized home is creating stress for American families today?

Many of us minimize the impact of stress on our health and well-being. Home organization, it turns out is a major source of stress for American families. The Huffington Post reports that “home organization was as much of a stress trigger for recently-stressed Americans as:

  • unexpected expenses (also 47 percent),
  • not having enough time for loved ones (46 percent), and
  • not having enough time to yourself (45 percent). “

When it comes to managing the household and finances,  having a shared roadmap can reduce anxiety and that includes every member of your household.

Home disorganization is also costing American families more than $58 billion dollars — at least that was what CCNMoney reported is the amount of unclaimed money sitting with state and federal treasurers. Loved ones are just unaware of both physical and financial assets during a crisis or upon death and they eventually end up in the very large “unclaimed money” coffers.

To start your roadmap, you can download a free list that includes all of the documents, accounts, and details you should have organized. Not only will it benefit you when you need to find information, but it will assist a loved one that may need to step in and help you.

To learn about the benefits of getting organized, find out how it helped an active family of five,  and a couple that wants to stay on the same page.

Consider doing just one thing to get better organized today.

Related Stories:

Three Simple Ways to Bring Organization to the Next Level

“Next Level” Organization for Seniors

Sharing MY DPOA & Estate Plan Wishes

This past weekend, I sat down with my brother and my kids and walked them through the estate plan my husband and I recently had updated. It wasn’t doomy or gloomy since we are in good health. It just resulted in peace of mind for my kids to know our plans and we made sure that everyone knows where they can find our completed MemoryBanc Register, and the original copies of all of our important documents.

I wanted to share this as a follow-up to last weeks post discussing the importance of having a Durable Power of Attorney (DPOA).

If you don’t already know this, the U.S. Department of Health and Human Services reports that 7 out of 10 of us will need long-term care assistance for at least 3 years. The difficulty a loved one faces when you don’t have a DPOA can be expensive, undignified and lengthy.

I hope you will consider speaking with a lawyer dedicated to the practice of estate law in your area. You should be able to get one for just a few hundred dollars.

Managing End-of-Life Wishes and Caregiver Suggestions

carveouttimeWe hired extra assistance (personal daily assistants or PDAs) for my Mom so she has someone with her and working toward her comfort daily from 8 a.m. to 8 p.m. even though she is in an Assisted Living community. She has also been moved into “hospice” care so there is a second doctor, social worker and nurse monitoring my Mom. I have found that having more people and organizations involved in her care has created more complexities to my family caregiver role. I spend a lot of time on the phone and meeting with her caregivers.

What’s become both a blessing and a challenge is that I’m getting advice and recommendations from a variety of caregivers. The three women who are with her the most continue to suggest we add vitamins to her diet. She eats very little and I understand their concern, but then feel guilty when I explain to them that my Mom doesn’t like vitamins and we feel like it would be the choice she would make if she could.

My Mom made it clear she would not want to extend a life of low-quality. I shared my angst over the idea of even having her drink Ensure. After speaking with the Social Worker from hospice and the head nurse in her Assisted Living community, I moved past my concern when I watched her enjoy the shakes and they helped sate her hunger. My bench-mark is to know that what we give her brings her pleasure. I know the vitamins would not bring her pleasure.

My siblings and I continue to struggle to know what things keep her comfortable and what things may just extend her life. It’s not such an easy black and white choice. I’m thankful that I have involved siblings that come to help, call to ask how they can help and bring varied perspectives to our journey to care for our Mom in this last phase of her life. I was lucky my parents told me how they wanted to live, as well as how they didn’t want to live. Because they started this conversation so early in their lives, it never felt uncomfortable.

This Thanksgiving, I hope you will carve out some time to start the conversation with your loved ones on how you plan to live the rest of your life. I’ve included two great resources below, and hope you might start by sharing with friends and family your ideas about how you will spend your time in your 60s and 70s; where you plan to be living and how you will be spending your time.

I am lucky my parents shared their thoughts with me. It has made a difficult journey a little easier knowing that we did or are doing what we can to honor their individual wishes. Thankful. 

ADDITIONAL RESOURCES 

AARP Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams by Bart Astor
Life after 50 isn’t what it used to be. The rules have changed. No more guaranteed pensions, retiree health plans, or extensive leisure and travel. It’s time to forge new paths and create innovative models. That’s where the AARP Roadmap for the Rest of Your Life comes in. Bart Astor, author of more than a dozen books, offers a comprehensive guide for making lifestyle decisions, growing your nest egg, and realizing your goals. It’s a positive read I highly recommend.

The Conversation Starter Kit
If you want to be the expert on your wishes and those of your loved ones, not the doctors, nurses, or end-of-life experts, check out this free resource (donations accepted) that includes easy discussion starters for the coming holiday. This doesn’t have to be a gloomy conversation. I was lucky my parents shared their wishes with me.

Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 

 

Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons