Life With Alzheimer’s Disease

Life with Alzheimer's DiseaseLife with Alzheimer’s Disease can be pretty tough.  It’s tough on sufferers of this debilitating disease and it’s tough on caregivers too.  Although much progress has been made researching Alzheimer’s Disease, it still remains a bit of a mystery to us all.  It’s been called “the memory thief” and affects half of all people over 85.  In an effort to educate the public on Alzheimer’s and Dementia, The Senior List (as well as other publishers) have shared the 10 early signs of Alzheimer’s Disease which was put together by the good folks at the Alzheimer’s Association (alz.org).

In a wonderfully presented video, Lisa Cerasoli invites us into her world of caregiving for her grandmother Nora Jo.  Nora Jo suffers from Alzheimer’s Disease.  One of the many things that Alzheimer’s Disease steals from sufferers are the most profound memories of our lives.  In this case, Nora Jo relives the terrible news that her husband has died.  She relives this realization every single day.

This is the first video in a mini series that Lisa Cerasoli has put together entitled “Life With Alzheimer’s Disease”.  She uploaded this video (entitled “Truth”) in 2011.

Life With Alzheimer’s: “Truth”

If you or your family members need more information on Alzheimer’s Disease, we invite you to visit alz.org for more information and resources. If you’d like to share your story, we’d love to hear from you below.

Caregiving And The Toll It Takes

Caregiving and avoiding burnoutIf you’re a caregiver or you know someone who is, chances are you know that what a difficult job this can be day in and day out. Caregiver stress and caregiver burnout are real issues to deal with, especially when dealing with memory problems in the elderly. Debbie Cool of the Washington Area Agency on Aging talks about caregivers that care for people with memory problems; “The demands on the caregiver grow continuously and often they end up becoming ill because they’re no longer paying attention to their own needs“.

Because caregiver burnout is real, and can lead to real health consequences it’s important to understand how to take care of oneself.  We wrote about this a couple of years ago in a post titled the “Self Care Plan for Caregivers“.  This self care plan notes that caregivers must care for themselves first.  They must exercise, eat right, and get enough sleep.  These seem like little things, but doing the little things can keep caregivers out of harms way.  Caregivers are no good to others if they can’t take care of themselves.

It’s true that caregiving brings with it a stress load that can threaten the health and well-being of the caregiver. That’s why so many experts—me included— so strongly advocate for caregivers to engage in active self-care. A self care plan for caregivers is a must. – Joanne Reynolds (caregiving expert, author, teacher)

Here’s a great video produced by the Washington Area Agency on Aging that discusses the issues that caregivers face today, and the toll it can take on their own health. If you know a person suffering from caregiver burnout, send this post along so they know a) they’re not alone, and b) there’s something they can do about it!

Bathing And Dressing Your Aging Parent

Bathing and Dressing an Aging ParentThe National Center on Caregiving’s Family Caregiver Alliance offers help and support to caregivers of all types.  Whether you’re taking care of a family member at home, or you work in a senior living facility you’re probably faced with a lot of situations that put you in unfamiliar territory.  The Family Caregiving Alliance offers education and support to help guide you through these challenging times.

Here’s how the Family Caregiving Alliance describes the work they do: “FCA is first and foremost a public voice for caregivers. Founded in the late 1970s, we were the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. We illuminate the caregivers’ daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause through education, services, research and advocacy.”

One of the key components of caregiving addresses important needs of aging adults called activities of daily living (or ADL’s).  These activities include those many of us take for granted like eating, dressing and going to the bathroom.  If any of you are dealing with an aging family member today, you know that even the most basic activities become a struggle for some.  It’s the caregiver’s job to understand how to help in the best way possible.

The term “activities of daily living,” or ADLs, refers to the basic tasks of everyday life, such as eating, bathing, dressing, toileting, and transferring. When people are unable to perform these activities, they need help in order to cope, either from other human beings or mechanical devices or both. – The US Department of Health and Human Services

The video we’re sharing (below) offers some great guidance on how best to bathe and dress someone that requires assistance.  This is chapter 4 in what the Family Caregiver Alliance is calling their “Caregiver College Video Series”.  It’s titled “Bathing and Dressing”.  This video also includes five very important points to remember when bathing and dressing an aging parent:

  1. Don’t Rush
  2. Make it Safe
  3. Allow Independence
  4. Talk It Through
  5. Show and Tell

 Bathing and Dressing Techniques For The Caregiver

Are You Afraid Of Dying?

Are you afraid of dying?It’s a simple question.  Are you afraid of dying?  In her beautifully written essay over at When The Table Turns, Judy Fox posed the question to her mother, for whom she is a full-time caregiver.  In a moment of clarity, Judy’s mother answered no, that she wasn’t afraid, and actually “she was looking forward to it”.  When Judy asked her why, she explained that she “would be at peace”.

Death and dying is such a tough topic for many folks, myself included.  The realization that we have a finite time-limit in this existence is difficult to get your arms around.  How much more time will I have with my parents?  How much time will I have with my children?  How much time will I have with my husband? These are all fundamentally difficult questions to consider.  No one wants to run out of time, so clearly the key is to make your time count.

In a previous post we took a look at just how much quality time we have in our lives (away from work, commutes, sleeping, and more).  The reality is that the hourglass has been tipped for each of us.  What we do, how we do it, and who we do it with defines us whether we like it or not.  Being able to “be in the moment” matters, and so is consciously loving AND being loved.  Judy Fox captures these thoughts so eloquently in her essay entitled “Catching The Fleeting Moment“.  Here are a few excerpts:

A few days after writing this I was talking to a friend who had recently visited a relative in hospice. This relative didn’t seem to realize she was dying and consequently it wasn’t discussed. I realized how lucky I was that my mom has so openly accepted her dying and how much that has affected our whole being together. There are no hidden corners…we can talk about dying and death; we can say how much we love each other with the awareness that we have limited time together on this earthly plane. This is very much a result of my mother’s openness. She has made this possible.

So I am like this fisherwoman catching these fleeting moments in time and giving them space, giving them room to expand and grow. I open a door and then all sorts of reflections and conversations get aired and ignited.

And like a fisherwoman, I want to share my “catch” with others whose lives are probably very different from mine – circumstances different – and yet I know that what touches me will touch others; not in the details necessarily, but in the mystery of life; in all these tender moments that contain such jewels.

Judy often stops by and visits The Senior List on Facebook, so you can catch her on FB, or at her website. We’re so very appreciative that Judy shares such an important narrative with us. The fact that she does it with such style and grace is icing on the cake.

Part-Time Janitor Donates Millions

Janitor donates millions

Janitor Donates Millions

We’ve all heard the adage, “don’t judge a book by it’s cover”, and that theme revealed itself again today with some incredible news out of Vermont.  Today.com is reporting that a part-time janitor in Brattleboro Vermont passed away recently and bequeathed $6 Million dollars to the local hospital and library.  Ron Read lived a private life, but no-one in town knew what he managed to stash away in his 92 years on this earth.  $4.8 million dollars is going to the local hospital and $1.2 million is going to Brooks Memorial Library.


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Chris Serico of Today.com reports that Mr. Read was an incredibly frugal man on one hand, but a stock-picking-whiz on the other!  He managed to amass an $8 million dollar fortune that no one knew about (not even his step children).  Townsfolk used to try to buy him meals and/or look out for him because of his appearances.  His jackets were held together with safety pins for goodness sakes!

It’s an incredible story of rags-to-riches, but in some ways it has a sad ending.  Ron Read will never be able to see the true goodness that these donations will bring to his community.  Perhaps though it’s fitting… and just the way Ron would have wanted it.  Read the entire story at Today.com.

How Much Time Do We Have?

How much time do we have?

What are you doing with all of your time?

How much time is left?

Your Life in JellybeansThese are tough questions to answer, but the video below puts them in perspective using 28,835 jellybeans of all things!  Why the number 28,835? Because this is the average number of days we have to live our lives.  Some have more days, and some have less… But on average, this is what we get.  In the video below by Zefrank1 on YouTube, each day is represented by a single jellybean.

What if I told you that it would take 5,474 days to turn 15 years old (ya I know that’s easy math).  At 15 years old we’re on the precipice of adulthood, and we have our whole life in front of us.  Now for some interesting statistics from the American Time Use Survey (creatively illustrated by Zefrank1).  After turning 15, you’ll spend 8,477 days sleeping, 1,635 days eating, drinking and preparing food, and 3,202 days at work (ugh).  Additionally (with special thanks to Lakers fans) you can plan on wasting 1,099 days in the car commuting to wherever it is you’re going.

Just how much time to we have left?  What else are we spending our time on? How bout watching TV, doing chores, caring for friends and family, bathroom activities, and community services.  After all that… What’s left over?  And more importantly, what does it all mean?  Watch the video to find out.

28,835 days

Gifts for Caregivers

gifts for caregiversWith the holidays quickly approaching, I have been asked by clients and family members alike what the best gifts for caregivers are this season.  After some reflection about all the things caregivers do for the people they are taking care of, I made a few adjustments to my answer.  There is no amount of money that will ever fully recognize the amount of stress, love, and care that any family or professional caregiver goes through each and every day.  However, here are a few ideas that may help the caregivers in your life feel recognized, appreciated and pampered.

Private Caregivers

I think of these caregivers as the folks who work for in-home care, home health, and hospice companies.  They may also be private caregivers who work for themselves or through a caregiver referral agency.  If they work for a private company, do check on company policies for gift-giving.

  • Massage, Manicure, and/or Pedicure gift certificates
  • Gift certificate to a nice restaurant
  • Movie tickets
  • Anything to help facilitate relaxation and pampering

Family Caregivers

Did you know that 4 in 10 U.S. adults cares for a sick or elderly loved one?  That’s a whole lot of care being provided without any paycheck at all.  Family caregivers often feel overwhelmed, under-appreciated, and pulled in many different directions by work and family obligations.

  • Offer to go shopping
  • Cook a meal
  • Clean the house
  • Lunch or dinner delivery
  • Let them know how much you appreciate everything they are doing!
  • Respite- can you help them have a day/night off?

Facility Caregivers

Facility caregivers are anyone who works in a nursing facility, long term care facility, assisted living, memory care, retirement community, adult care home or any other residential setting for seniors.  These caregivers are definitely underpaid for the amazing work they do.  Often, the companies they work for also have very strict gift-giving policies in place that can make it difficult to express gratitude.  As with private caregivers, check the company policies on gift-giving first.

  • Letter of recognition- This is one of the most personal gifts I can think of for a facility caregiver.  A letter touting their amazing skills with your loved one, the care and compassion they bring to work everyday, or they way that they bring a smile to the resident’s faces that they care for will go a long ways in showing your appreciation.  This letter could be given to an administrator as well to be put in the caregiver’s employee file.
  • Donation to the facility or organization the caregiver works for- Many care facilities will have an “employee bonus” fund that is split amongst the employees or direct care staff.
  • Donate on behalf of the caregiver- If there is no bonus fund to contribute to and/or the gift-giving policies are tight, donate to a non-profit or cause like the Alzheimer’s Association, Parkinson’s Association, or Senior Wish Foundation in your area.  I found this great site that rates and links to charities if you need ideas.
  • Food, Coffee, Teas for the breakroom- and make it the good stuff.

Gifts for Caregivers: Not just for the Holidays!

Don’t just say thank you at the holidays, say it year round!  Let the caregivers in your life know how much they are appreciated.  A smile, pat on the back, a listening ear, and a willingness to help out are always welcome.  Don’t forget each November is National Caregivers Month, another special time to recognize the caregivers in your life.

Have any gift ideas we missed?  Add your thoughts in the comments below!

 

Choosing the Right Hospice

choosing the right hospiceThe decision to start hospice and trying to choose the right hospice is not an easy task. For many, there is an an overwhelming sense of sadness when this decision is made. However, most people soon realize what a tremendous help hospice can be to a patient and family members.

The importance of choosing a suitable hospice is critical for you and your family.  Many physicians will make recommendations for hospices and most hospitals and insurances groups operate their own divisions of hospice.  You have the right to choose any hospice you want, and your doctor must respect that right.

Commonly Asked Questions About Hospice:

  • What is hospice?
  • Are all hospices the same?
  • How do I decide what is right for me?
  • Who pays for hospice?

Hospice is a compassionate service for those with a life-limiting disease or illness.  The focus of hospice is comforting, not curing, the patient through pain management, medical care, and emotional and spiritual support based on the patient’s wishes and needs.  The patient’s loved ones will also receive support from hospice services.

If you are looking for the best hospice for you, ask the nurses and doctors within your care team and at the potential hospices you are reviewing what services would be provided for your specific needs. You need to make sure that you are asking these questions so that your treatment and the support you and loved ones will need is a good fit for you.  The care that you receive should be tailored to you and your needs.  If an individual hospice cannot provide this, then it is not the right choice for you.

Talking to local aging services, hospital staff, and charities can also assist you with your search to find the right hospice.  No one should force you into a decision; they should only offer advice.

In the midst of your research, contact several different hospices, such as Notre Dame Hospice. if you are in the Louisiana area.  They can give expert advice and answer the questions you may have about hospice care for you.

The Benefits of Hospice Care

For many, there are a plethora of benefits to choosing to undergo hospice care.  One of the main benefits is that the patient receives a robust care package. This is something that other care settings cannot always deliver.  In addition, there are more specialists  to deal with the terminal diagnosis of the patient.  The caregivers who work for the hospice company are specially trained to deal with the illnesses of the patients in their care.  They are able to tackle issues of grief and help patients and families work through these, as well as educate everyone involved about the death and dying process.

Some patients and families will seek out hospices because they can obtain additional care.  This means regardless of holidays, weekends and night shifts; they can still get the care that they deserve and need.  Hospices offer people dignity and tender loving care when it is needed most.   Having constant access to expert care and hospice facilities provides comfort to families and individuals who need additional support.

Hospices can also lessen the financial burden to those who are struggling to pay for medical care.  Insurance and Medicare usually pay for medical care, medication, and equipment related to the hospice diagnosis and treatment.  Be aware, there are things that Medicare won’t  pay for once a patient is on hospice.

  • Treatment to cure a terminal illness
  • Prescription medication to cure a terminal illness
  • Room and board- Medicare will pay for short term inpatient or respite stays in a facility if the hospice team determines that it is necessary
  • Emergency Room, Inpatient Facility Care, or transportation by an ambulance

Remember, when hospice care is chosen, it means that the patient no longer wants to treat their terminal diagnosis and the focus becomes “comfort care”.  Any hospice patient has the right to stop hospice care at any time.

Top 5 Features Of A Modern Medical Alert System

We’ve written extensively about medical alert systems here on The Senior List. We’ve done so in an attempt to educate the public on appropriateness of use, and to offer tips and advice on buying a medical alert system for your loved one (or yourself).

One of the things we haven’t focused on as much is what we think the perfect medical alert system consists of.  So with that as a backdrop, here is our wish list. Our top 5 features that would define the perfect (in-home) medical alert system:

The Best Medical Alert System: Top 5 Features

 

1.  The best medical alert system should be a small (discrete) waterproof form factor

I’m talking about a small pendant style medical alert system that doesn’t make you look like Flava Flave (of Public Enemy fame).  There should be options today on style, and there really aren’t many to choose from.  Our idea for best options include both the necklace style pendant alert button, as well as a small wristband type device.  Both should beflavor flav wearing clock totally waterproof so they can be worn in the shower or the bathtub.  Not-so-fun-fact; Did you know that over 1 in 3 seniors fall every year, and according to to the National Institute on Aging, over 80 of those falls are in the bathroom.  This is why it’s so important for manufacturers to get this WATERPROOFING issue right now.  Most of the medical alert devices today are water resistant (not waterproof), leading many manufacturers to recommend that they not be worn in the bathtub or shower (at the very least not submerged).  This is a biggie folks, the best medical alert devices need to be waterproof.

2.  The best medical alert system providers should never ask you to sign a long term agreement

Our favorite providers out there have month-to-month options for families and they don’t gouge the customer for choosing this option.  Believe it or not, there are some medical alert system providers that have conned consumers into 3 year contract commitments, which is appalling.  Just sniff around The Senior List medical alert system articles and you’ll hear directly from consumers that got stuck… and aren’t happy!  Always, always make sure you’re signing up for a commitment that you are comfortable with, not something a sales person pushes you into signing.  In fact if you do get pressured like that, just walk away.  Tell them you’ll be sharing your story with us, and we’ll make sure to warn other consumers of nasty sales tactics.  Frankly, we’re tired of it.

3.  The best medical alert system should be comfortable and lightweight

One of the worst tTimex Ironmanhings that could happen after investing in life-saving technology like a medical alert system is that your loved one doesn’t wear it.  Our wish list includes something that looks fashionable or sporty, and isn’t bulky or hard edged.  If it’s as comfortable as my Timex Ironman watch band, it’s going to be worn all the time.  If it’s big, bulky and clunky like my Tissot dress watch… it’s only going to be worn for special occasions.  And that’s not good enough!  Many of the form factors (pendant or wrist style) all look alike today… but hey this is a wish list right?

4.  The best medical alert systems should have fall detection technology that works

We’ve heard from countless community members here on The Senior List that fall detection on the devices today stinks!  While we love and respect your feedback, we’re in the camp that believes it’s good… not great (yet).  Fall detection has been around for years in these devices.  A number of companies over the years have bit-the-big-one (read failed) trying to develop a fall detection device and stand on that leg alone (as a major differentiator).  Frankly, it’s tough to do for a huge number of reasons.  First, expectations of what fall detection devices should or shouldn’t do vary widely with both consumers and industry experts.  The algorithms that constitute what a fall is and what a fall isn’t are difficult to define and fine-tune.  Finally, we all fall a bit differently.  A fairly active adult may be doing exercises in the home and fall into the couch to catch a breather.  Is this a fall? Will this set off the device?  It’s a very tough thing to perfect.  But for our wish list, we’d like the option of fall detection that really works.

5.  The best medical alert systems should have communication options in the case of an emergency

What I mean is… Who do you want your PERS (personal emergency response system) to call if you depress the button?  Do you want this device to call a loved one?  Do you want it toOneCall Speaker Pendant ring a call center?  Do you want it to dial 911 directly?  These are all options of one or more of these medical alert systems.  We’d like to have the option to program this device to ring a family member AND a call center (in that order).  If it’s a minor emergency, I’d rather speak to a loved one.  If that loved one can’t be reached or they can’t reach me… It’s forwarded to the call center for possible dispatch.  Also, since this is a wish list we like the idea of a mini speaker phone built into our pendant or wristband.

So that’s it… Not to much to ask is it?  What did we miss?  What do you want to see on your ideal medical alert system?  Let us know in your comments below!

Would You Like a Medical Alert Recommendation?

Medical Alert Buyers Guide

Happy Fathers Day 2014

“When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much he had learned in seven years.” ~Mark Twain, “Old Times on the Mississippi” Atlantic Monthly, 1874

father's day Wishing all of the dad’s out there very special wishes on this fathers day!  Here’s hoping you have a great day surrounded by family, or hearing from those most special to you.  This isn’t the only day I think about my own father, but it does force me to reflect more than I normally do.  More than anything, I think about all of the lessons I learned from my dad without knowing they were lessons.  Maybe that’s the magic of fatherhood.

A Successful Man (author unknown)

That man is a success – who has lived well, laughed often and loved much; who has gained the respect of intelligent men and the love of
children; who has filled his niche and accomplished his task; who leaves the world better than he found it; who has never lacked appreciation of earth’s beauty or failed to express it; who looked for the best in others and gave the best he had.

Have a special memory of your father or father figure? Share it below!

 “He didn’t tell me how to live; He lived and let me watch him do it.” – Clarence Budington Kelland

Best Dad image