Knowledge, Friendships & Memories

On an Alzheimer’s specific cruise you’ll gain valuable knowledge, friendships and memories.

 

Offering something everyone on the Alzheimer’s path needs, knowledge, is one of the benefits of adding an Alzheimer’s cruise to your vacation list.  This one-of-a-kind cruise is a unique experience for people in the early stages of Alzheimer’s and their care partner. Cruising together you’ll gain valuable knowledge, important friendships and happy memories.

On this podcast episode I talk to Lisa Marie Chirco, the woman behind this cruise. With an extensive background in event planning as well as a history of caregiving.  Lisa puts together a must take cruise. For example, people newly diagnosed with Alzheimers have lots of questions. In addition, their care partner has questions and concerns unique to themselves.

On the inaugural cruise attendees had daily opportunities to learn.  Many of the topics covered will make their journey together as easy as possible. During morning sessions on board, the topics covered included financial planning, safety, caregiving techniques and more.

Learning in a small group environment fosters a sense of camaraderie where friendships can blossom. As a result, you leave the cruise with the knowledge that you can handle what’s coming. In addition, you’ll have a group of people on the same journey to lean on when needed.

Give this episode a listen. I’m certain when you’re done, you’ll be adding this cruise to your must-do list.

Book Your Cruise Today

Hear from an Inaugural Attendee

Knowledge As A Coping Technique

 

Knowledge can make you a Caregiver Superhero

Seeking knowledge allows us to cope better & become CareHero’s!

 

These days there’s a lot more knowledge about Alzheimer’s and I am truly grateful for that. I’m grateful to be part of the knowledge space. By learning more we are better able to handle challenging situations and keep our stress as low as possible. This episode is about how I use knowledge as a coping technique.

When I started my podcast I wanted to share what I had already learned. Fearing that that knowledge wouldn’t provide too many episodes I started staking out other people and their knowledge. Needing to know more myself was another reason.

Producing this podcast gives me knowledge and a wide network of people. I can reach out to this network when I need them.  Reaching out to other caregivers is also an excellent way to manage some of our self care.

But back to knowledge as a coping technique. Let me tell you a story. Many of you know my Mom does not remember that my Dad died.  Frequently, she asks me if “her husband” knows where she’s going. She used to ask me this every 2 minutes. Frustrating doesn’t begin to explain how I felt. One day I had an “ah-ha” moment. I realized that by answering her with “yes, Dad knows…” it didn’t really answer her concern. Lacking the understanding of our relationship made my answer non-sensical.

Having this “a-ha” moment was only possible because of what I’ve learned. That is the reason I have sought out guest who can help us all with specific challenges.

Let me tell you about what I got from the Savvy Caregiver training.

Savvy Caregivers

First, if you think the savvy caregiver program is going to teach you how to make your loved one be better, remember more I can tell you that’s not the case at all.  This program trains us, the caregiver.  Alzheimer’s & dementia effect each person differently so each of us has our own unique struggles.  Despite the differences however, each of us has to learn how WE have to change, to make this journey with our loved one more bearable.

Guiding our loved ones behavior will take up a considerable part of our day. The term behavior only means action in this context, not good or bad behavior.  Learning how to make this happen isn’t hard. Ask yourself these questions;

        • What has your loved one always liked to do?
        • In everyday life, what have they done to get through the day?
        • What do you like to do and share with this person?

Make your list and keep revising it as you go.  Some tips to consider as they progress with the disease.

        • What parts of an activity to try with the person
        • How much and what kind of control to exert?
        • Do we need to provide help & if so, how much?
        • What to watch out for that tells you when to back off or try something else.
Simplifying Projects

Six months after Mom moved into the memory residence I wanted to help her create Christmas gifts for the grandkids. Working on the advice to simplify activities they’ve always enjoyed. I selected a project that I thought she’d enjoy. Having to continually remind her of what we were doing should have been my first clue. Mom constantly worried about doing it wrong.

What I thought was poor memory as the cause wasn’t the case. Because Moms visual-spatial processing is poor, I didn’t realize that she didn’t comprehend what she was doing. What could have been an enjoyable afternoon turned into a frustrating one. At this point all I do with Mom is people watch.

Other Challenging Behaviors
Walking or Pacing

Walking and pacing are common and frustrating behaviors. Many people with dementia walk a lot. It is important to distinguish between good walking from disturbed walking.Pacing can provide a way to wear off excess energy.  Some folks who walk or pace a lot seem to be searching for something.  There is often a troubled quality in the way they move. Do they look concerned, lost or troubled?

Look for a pattern in their walking. Is there a repetitive quality that might allow you to “break” the cycle they’re in?  Some people living with memory loss get into loops and don’t know how to stop. If we’re vigilant, we might see the place where we can ease them into a different activity.

Nighttime Wakefulness

Another common issue is nighttime wakefulness. This may be because they wake up to use the bathroom and not understanding that it’s still night. Sometimes their sleep pattern may be disrupted due to the disorder.  Sometimes they sleep short period of times.  Some suggestions that I’ve learned may help.

Guide your person back to bed.  Hopefully this cue may be enough to reinitiate sleep.  This guiding may be more effective the sooner it is done.  Hopefully if you catch them quickly enough they won’t be in complete wakeful mode and go back to sleep.

Failing that, stay with them for awhile.  They may be more confused in the night and the added comfort of your presence will soothe them back to sleep.  Maybe give a comfort snack a try, like cookies and milk. Try to keep your loved one quiet to foster sleep either way.

Have them help with the evening chores to help tire them out. Maybe go for a walk together before settling down for the evening.

If all else fails, consult their physician. Careful management of drugs can help the person to sleep without being drowsy the next day.

These techniques are just a few things caregivers can learn to make their job easier. Providing care is already challenging enough, we need to do all we can to make it easier.

 

Teepa Snow’s Hand-Over-Hand Technique for Getting Dressed (Video)

Moms Crafty Christmas Gifts

 

 

 

Becoming a Savvy Caregiver

Becoming a Savvy Caregiver is as much a journey as Alzheimer’s.

 

The Savvy Caregiver Program is a training program for caregivers like you. Caregiving is a role far different from being a spouse or child.  Those terms describe relationships. Assisting and guiding someone who is living with a chronic illness is the definition of caregiving. It is work.

The caregiving role has a “job description”. Putting together the tasks, the helping, the cleaning up, watching, worrying, everything make up the caregivers job description. Hiring someone to do what you do isn’t truly possible. With enough money you can hire people to do many of your caregiving tasks. However, the caregiver role is more than one person can handle.

Caregiving is a job most of us never expected to have and are untrained to do properly. Lacking proper training leads to stress, frustration and sometimes injuries. Taking care of a person living with a demanding illness like Alzheimer’s is specialized work. Doing this work successfully requires special skills and knowledge,  You also need an outlet and attitude that helps you look after yourself.

Why Do I Need Caregiver Training?

Being unprepared for the role of caregiver is common. Lacking awareness of available training or even the need for training is also common. Many family caregivers tackle their role as a caregiver in a way similar to raising children. Unfortunately, this method leads to a lot of stress, frustration and tears. Consider the situation you’ve found yourself in. Caregiving is likely very different from any other role you have experienced. Seeing, recognizing and understanding that difference are important first steps in appreciating the work you have undertaken as a caregiver.

Most importantly, the Savvy Caregiver Program teaches you how to be a great caregiver. I attended the accelerated version (3 weeks vs 6) this past May. Learning how to be a better care partner to my Mom was a blessing. Taking this training earlier on the disease would have been a huge benefit to my Dad. Between his chronic illnesses and caring for Mom, he had too much on his plate.

What Types of Things Will I Learn In This Training?

Firstly, you’ll learn about providing contented involvement.  In other words, successful caregiving comes down to helping the person be as comfortable & involved & happy as possible. Keeping in mind that a person living with a demanding disorder can still:

  • zero in on a task or activity
  • stay with it for some time
  • have a pleasant time doing it

Keeping the person involved and content may help lessen confusion and reduce the chances of distress and difficult behaviors. Determining contented involvement takes practice. For instance, think of Goldilocks trying to find a balance between too much and too little. That is to say, a just right amount.

As a result of taking the training program I learned new ways to approach caring for Mom as she declines further.  Learning that we, as caregivers, are more in charge than we thought was huge.  While we can’t control the disease, we can control our reactions. For example. reacting in calm, more understanding ways helps our loved one stay calm. Anyone dealing with someone with Alzheimer’s knows that being calm can be a challenge.

Changing our behavior, reactions will change the outcomes of many of our interactions. That’s the benefit of becoming a Savvy Caregiver. As a result, our journey as caregivers can be a lot easier.

This is the painting that was discussed in this episode.

Fruitful life, painted by a person living with Alzheimer’s.

 

Learn More About Training Opportunities

Coping & Surviving as an Alzheimer’s Caregiver

 

Creating Breathing Spaces for Family Caregivers

Breathing Spaces Logo

Breathing Spaces is a caregiver support network that focuses on self-care.

 

Sometimes the simple act of breathing, a deep breath in and out can mentally give a caregiver space to solve a problem.  Understanding the roller coaster of emotions caregivers go through is our guest, Cyndi. Living with and taking care of her Mom and brother was overwhelming. Cyndi was a stressed out family caregiver not taking care of herself. (Sound familiar?)

Self-care is a vital component in the overall caregiving journey. I am very reluctant to miss my regular exercise classes or bike rides because I know how I feel when I do. It is not a selfish thing to take time for yourself. Being a good care partner means assembling your support network so self care isn’t neglected.

In addition to exercise I’m in a caregiver support group, I participate in many online chat groups and I talk to many knowledgeable guests. Despite all this, I still struggle. Struggling is part of the journey unfortunately. However, we don’t have to struggle alone. In fact, we should do our best not too.

Gathering your support network is just as important as making sure your loved one has what they need. In fact, it may even be more important. Failing to be able to care for someone because you neglected your own needs is something all caregivers need to avoid.

Tuning in to this episode will give you insights into self-care, challenges in getting help and ways to make it happen.

Alzheimer’s Association Support Group Locator

Senior Social Program with Kids Episode

Honoring Grandma – Zach’s Alzheimer’s Journey

Zach’s Grandmas journey with Alzheimer’s was the catalyst for his career choice.

 

Choosing to embark on an Alzheimer’s journey is not one most of us take.  Generally, Alzheimer’s chooses us and generally later in life. That is not the case for today’s guest, Zach Smith. Zach volunteered at our local Alzheimer’s Associations chapter as a way to fulfill a graduation requirement.  At the time his grandmother was already living with Alzheimer’s. Therefore, it was a natural place for him to want to volunteer.

During his volunteer time, Zach met his future  supervisor. She was in charge of Public Policy for Northern California/Northern Nevada.  Volunteering was not glamorous but it was eye opening. Alzheimer’s is  the sixth leading cause of death for seniors in American but got the least amount of research funding. Feeling angry at this financial imbalance  Zach decided to become more involved.

A career In Alzheimer’s Policy Advocacy

Congress had passed the National Alzheimer’s Project Act which introduced a Secretary position into the office of National Institute of Health. (The National Alzheimer’s Act was introduced in February 2010 & became law in January 2011.)  While volunteering, Zach attend the State Advocacy Day, National Advocacy Forum, and worked with the legislative ambassador volunteers. Consequently, he decided to make a career of policy advocacy for Alzheimer’s. Changing the course of the disease for everyone effected in the future was Zach’s vision.

Studying health care public policy  in college combined with advocacy work made his career vision a reality. While completing his studies Zach was lobbying, and participating in the legislative process. Seven months after graduation he started working in the Alzheimer’s Associations program department. A year later he was promoted to the public policy department where he’s been for  2.5 years.  Zach says it’s his pleasure to come to work everyday, work with advocate volunteers and teach them what he did as a volunteer.

Zach teaches that sharing our stories with our elected officials, both state and federal is an important step. This step helps them understand the need for legislation and increased funding. With increases in funding we will be *that* much closer to a cure.

During the course of this podcast I’ve talked to many people whose lives were changed by Alzheimer’s. Zach is in a unique category as the youngest person I’ve spoken to. He has a passion for changing the future of Alzheimer’s care. Zach’s grandmother would be immensely proud of what he’s doing and what he’ll achieve.

Changing the Face of Alzheimer’s Work

A fascinating side note is the increase in Millennial’s who are caregivers. Over 10 million Millennials care for someone with Alzheimer’s. Sadly, no Google search tells me how many millennials go into policy advocacy but I’m sure it’s not high.

Meeting Zach’s grandmother would have been something I would have enjoyed. Hearing about her reminds me of my grandmother who also had memory loss at the end of her life. Regular listeners know, we’re not sure if it was due an aneurysm or dementia.  Assuming Alzheimer’s is my thought because her mother also had dementia at the end of her life.

If you’re interested in becoming a state advocate (you don’t have to do politics) you can contact Zach at zsmith@alz.org  Working with Zach will be a joy, I promise!

A $10 Million Dollar Ask for Alzheimer’s

More info on The National Alzheimer’s Project Act