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. 

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. 

The Ongoing Role of Advocacy for Caregivers

As a caregiver, you learn the important role you fill when you speak up for your loved one. This talk by Samuel Cohen inspired me. He reminds us that our loved ones with dementia (including Alzheimer’s) are unable to advocate for a cure for themselves. And now that they are gone, I now have the time and space to help answer his call to advocate for those who suffered from this disease.

Honestly, it’s also self-interest. I aspire to be an active grandparent for my children. Because I had them later in life, I will be in my 70s most-likely when (and if) there are grandchildren. If I want to have a relationship with them, I need to know then in their teen and young adult years.By then, I will be in my 80s. Statistically, 50% of us living in our 80s will have some form of dementia if we don’t find a cure. Undertaken.

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.

 

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.

The “critical incident” decisions are always difficult


I’m back in the emergency room with mom. She had a fall and they expect to find a broken hip. As I await the X-ray results, I’m worried about the coming choice I will face.

I’ve been here before with dad. He was in good health but a little forgetful before he fell on the racquetball court. He returned physically but his cognitive issues were undeniable after surgery.

Mom at least recognizes me most days. The waiting has me imagining the worst. Last year pain medication landed mom in hospice. How will she fare with the morphine? What if she needs surgery? It’s these moments and choices we all fear. Dreaded.

Caregivers’ Circle – How to organize financial, personal and medical information on behalf of an aging relative

webtalkradioBy: Stephanie Erickson for Web Talk Radio
It is very difficult to get all of the information we need to make the right decisions on behalf or with our aging relatives. How do we organize finances? Manage investments? Gather medical information? Organize personal appointments? This week’s guest, Kay Bransford, developer of MemoryBanc: Your Workbook for Organizing Life offers her personal experience and how this led to the development of a simple method to keep track of all necessary information. She and I discuss all of the essential financial, legal household and personal information that should be collected and organized to assist you in helping another.

Caregivers struggle with knowing what to do when individuals with Dementia present with challenging behaviors and symptoms. There is an APP available that offers step by step interventions to manage a variety of symptoms such as incontinence, bathing challenges, repetitive discussions and aggressiveness. Learn more about Dementia Caregiver Solutions.

About: Stephanie Erickson is a Family Caregiving Expert and has a host of resources. She interviewed me for her show and I wanted to share the conversation with you in case we cover some new tips and resources that you may find helpful. Aired.

Are Angry Outbursts Normal with Dementia?

angryemojiVery early in my journey into life with a parent who has dementia, I read that “meeting one person with dementia, is like meeting one person with dementia.” We all want rules to follow, guides to help us know how to help our loved ones, and simple answers. That just isn’t possible given all the types of dementia and types of people.

While my mom would become very argumentative, my dad did not and seemed to fade away. As I watched two parents with different dementia’s and managing through varied life changes, the only rule I found was that being calm and positive were the only emotions to bring to a visit.

When mom would get argumentative, initially I would engage, just like I always did. We were able to disagree and challenged each other from silly to serious topics.  When I realized our conversations were only making mom angrier and more agitated, I changed. It was not easy.

I recognized that my mom was losing the ability to change, so I needed to change. My sister-in-law who has been helping individuals with head injuries for over two decades always had good advice. At one point, I realized that if I considered that mom had an external head injury, the changes in her behavior made more sense to me and it was easier for me to change to adapt to the battle going on inside of her that I could not comprehend.

After my dad died, my mom was having a lot of conflict in her assisted living community. I always knew that together my parents were better. Without my dad as her companion, my mom no longer had something that constantly grounded and provided her with comfort. She started to verbally and physically act out. This was one of the reasons I started to search for a new community. Mom was not in a place that could support her needs.

I am not really going to answer the question I posed, because I still don’t know if anything is “normal” with dementia beyond the aching sense of loss we all experience. Changed. 

Worried about your Parent, their Forgetfulness, and Money?

MomandKay
Me with my Mom last Fall on our way out to shop at the grocery store.

If a parent or other loved one develops dementia, a risk that grows with age, finances can present a big problem. In fact, you may have to step in to make sure your mom or dad doesn’t  rack up credit card debt or even go broke.

That’s what happened to Kay Bransford, an author and entrepreneur in Virginia, after her mom and dad both developed dementia. When a home contractor tried to charge her parents more than $5,000 for needed repairs, more than five times the going rate, Bransford acted quickly to cancel the contract …

Read more: http://www.creditcardguide.com/creditcards/parents-and-finances/6-ways-to-deal-with-a-loved-ones-dementia-and-debt/#ixzz3pEA0WUAQ

When Change Becomes a Downer

leafchangeAs an Army brat, I learned to embrace change. While I hated leaving good friends, I could quickly jump in and find new friends in our new location. It has never really been a scary concept for me and when it doesn’t happen, I quickly find I grow restless. I love to learn new things and challenge myself, and change helps foster that environment for me. However, caregiving brings a host of change for everyone. Sadly, it’s now mostly un-positive changes.

For the first time I’m recognizing how much the changes are depressing and discouraging me. My mom is now in a wheelchair full-time and too weak and unsteady to ever get back on her feet.  While she was in hospice and “graduated” out, it just seemed to bring on the need to change equipment, medications, doctors, and her schedule. While my mom is not rapidly declining, she is withdrawing and less-interested in doing the community activities as well as the little arts-and-craft activities we would do together.

She’s moving in and out of varied issues from temporary blindness to mid-dinner regurgitation. We never seem to find a root cause. When she woke up one morning with a very swollen and bruised hand, we just focused on treating for comfort since mom could never really report what occurred and it did not seem to be broken.

Change used to come with the potential for something better. Unfortunately, I recognize that almost ever change I’m facing comes with something less-better than it was before. I recognize what I can’t change, I’ve taken a huge leap with MemoryBanc to change the things I can and help other families on this journey, but I admit that some days, managing as a caregiver can be  incredibly discouraging. Confessed.

Making Lemonade out of Lemons

agewyzI was interviewed by Jana Panarites about my journey as a sandwich generation caregiver and shared my dream that MemoryBanc would help millions of families avoid the difficulties my family faced. My parents did everything the estate lawyer, financial planner, and insurance adviser suggested–why wasn’t that enough? Find out by listening to this broadcast.

“Author and innovator Kay Bransford left her corporate career because she couldn’t work full-time, be a mom AND an effective medical advocate for her parents, who both had dementia and were in denial about their condition. In this episode, Kay shares her tough yet at times comical caregiving journey with mom and dad, and how it affected her relationship with her siblings and her kids. Caring for her parents not only changed Kay’s perspective on life, it led to a new career: the organizational book she created to manage her parents’ lives—and her own sanity—became the basis for MemoryBanc, an award-winning system Kay created to organize and protect documents, accounts, and assets.

To learn more about MemoryBanc, winner of the AARP Foundation’s “Older-Adult Focused Innovation” prize, click here: www.memorybanc.com