Lewy Body Dementia: What you need to know

lewy body dementia symptoms, treatments and supportLewy Body Dementia has been in the spotlight recently with the news that Robin Williams had this common disease.  Lewy Body Dementia or LBD, affects more than 1.4 million people in the US and is one of the most common forms of dementia.  LBD is often misdiagnosed as Parkinson’s or Alzheimer’s disease.

Symptoms of Lewy Body Dementia

LBD can be difficult to diagnose early and many practitioners are still unfamiliar with the disease.  This leads to a large number of under-diagnosis and mismanagement of medications and treatments that may be prescribed for Parkinson’s or Alzheimer’s instead.  In the early stages, memory impairment may not be that noticeable and can easily be masked. Memory issues can easily change from day to day also making it hard for practitioners to establish a diagnosis.  People with LBD can have trouble sleeping and will often experience hallucinations.

The diagnosis of Lewy Body Dementia is often confirmed after death.  LBD is indicated by protien deposits on the nerve cells of the brain.  An excellent resource for caregivers is the Lewey Body Demenita Association.  They offer a Lewy Body Dementia symptom checklist for patients, caregivers, and physicians and it is an excellent tool to start with if you or a loved one has concerns about the disease.

Is there a cure?

The short answer is “No”. But, the symptoms of LBD are treatable.  There are medications to treat the symptoms of the cognitive, behavioral, and movement problems that can accompany LBD.  Early diagnosis is the key because people with LBD can react differently to certain medications that are prescribed for Alzheimer’s or Parkinson’s disease.   These medications can cause severe reactions in people with LBD and can sometimes be fatal.  Early diagnosis can also allow for other changes and modifications that can improve the quality of life for people with LBD.  Changes in diet, sleep habits, routine, and medications may allow for someone with LBD and their caregivers to effectively manage the symptoms and changes that take place with LBD.

If you or a loved one has Lewy Body Disease, you are not alone.  Find a local support group or join a virtual LBD support network to help you and your loved one.

November is National Family Caregivers Month

November is National Family Caregivers Month, and this caregiving stuff is hard work!  And it’s usually not funny… Until Jeff Foxworthy and caregiver  Peter Rosenberger teamed up with AARP to provide some comic relief on the subject.

Across the country 42 million people, primarily women, between the ages 40 – 60 are faced with the challenge of providing care to their older family members and friends each and every day.

These are the unsung heros of today.  These caregivers support the people we all love.  Caregivers take on a variety of roles as providing this care can come in all forms.   From taking mom to the doctor’s office, to managing medications, to total care of a loved one.  New research from AARP suggests that caregiver’s personal health and overall well-being can be greatly affected by the physical and emotional strain of caregiving, but many caregivers are reluctant to ask for help.  The Ad Council has released a series of new Public Service Advertisements (PSAs) that explore the many roles caregivers take on and provide resources to help them cope with their daily responsibilities.

Here are some resources to share to help recognize caregivers everywhere for the important work they do:

  • The new website, ThanksProject.org, where you can share a message of thanks with a caregiver you know and post it publicly alongside other messages from people across the country to illustrate the number of caregivers nationwide.
  • A new online quiz to help identify if you are a caregiver: click here for online quiz
  • If you or a caregiver you know needs support, a caregiver support group is imperative for the health and wellbeing of the caregiver.

If you are a caregiver, or you know someone who is, please be a part of this important campaign. Visit aarp.org/caregiving for more tools and resources.  And hug a caregiver today.

Finding Caregiver Support Groups

Finding Caregiver Support GroupsFinding Caregiver Support Groups

It’s November, and IF you didn’t know, it’s National Family Caregiver’s Month.  It’s a time when we’re supposed to be celebrating and honoring caregivers.  Sometimes that means that caregivers need to celebrate and honor themselves.  One way that you can do that is to find caregiver support groups and attend them regularly.  It’s one of the ways you can actively deal with the sense of isolation and frustration, by finding a safe place where you can share your feelings.  At the same time, you have the opportunity to give and receive advice and support from other caregivers.

Patient support groups have been around for more than twenty years because of initial research that indicated patient outcomes were more positive among cancer patients who were part of a support group.  Those early  results have been discounted by recent research, however, newer studies indicate that patients of all types who attend support groups experience lower levels of distress.  Bottom line: they feel less stressed… and that more relaxed state enables them to simply feel better.  Feeling good can also translate into faster recovery from treatment.

Who Needs Caregiver Support?

So why do caregivers need support groups?  At it’s most basic… it’s important for stress reduction.  Stress reduction is directly related to caregiver well-being.  A high level of well-being enables caregivers to remain strong to care for their loved ones.

Finding a caregiver support group isn’t always easy (though patient support groups are plentiful).  There are support groups for families, which are helpful to caregivers, but these will also include non-caregivers.  The focus in these groups tends to be on the patient and how the patients’ response to their illness and treatment affects the family members.  Good stuff, for sure, but not necessarily focused on the caregiver.

If you’re in an urban or suburban location, the local hospital or the organization which supports your loved one’s disease (American Heart Association, the Cancer Society, Alzheimer’s Association, etc.), is a good place to find a support group.

Blessings, Joanne

National Family Caregivers Month Is Here

National Family Caregiver's MonthNovember is National Family Caregivers Month

Here’s what I’d like to see:

  • A big parade featuring caregivers on 5thAvenue in New York;
  • A huge rally in support of pro-caregiver legislation on the National Mall in Washington DC;
  • Restaurants across the country offering discounts to family caregivers;
  • Members of the NFL, NBA, MLB, and NHL wearing colored equipment that draws attention to caregivers  (What color would that be?).

While none of this is likely to happen, I do think that having a month to draw attention to family caregivers is a good thing.  It brings the facts about caregiving closer to the forefront of issues to be considered in 21st century America.  There have been gains made in the past decade in terms of government support for family caregivers through creation of national programs such as the Area Agencies on Aging and the Offices of Senior Resources and Councils on Aging.

Still, there’s a lot more that can and should be done to support family caregivers, but in the wake of the vitriolic debate over healthcare reform, I doubt that policy makers from either party are much interested in wading into similar waters to craft a spending plan to support caregivers.  So that leaves us doing what we do without “official” support other than in the form of having a whole month that honors and celebrates our unpaid work on behalf of family and friends.

A good way to use this month is to consider the way in which you go about your caregiving and find new ways to make it less stressful:

  • Learn to ask for and accept help;
  • Find ways to care for yourself in order to stay strong to care for your loved one;
  • Shift your thinking into new patterns of doing family celebrations that make room for the reality of your caregiving.
  • Pat yourself on the back—or take yourself out to lunch, a movie, some kind of treat—as a way of saying ‘thanks.’ You deserve it.

Blessings, Joanne

Self Care Plan for Caregivers

The Self Care Plan for caregiversIt’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.

One way to deal with the lack of time for self-care is to whittle down the to-do list to a basic three that cannot, and should not, be neglected.  I call them the Self-care Trinity: Exercise, Sleep, and Healthful Eating.

Think of them in terms of your car.  We make time to maintain it, operate it wisely and fuel it well so that it can continue to provide transportation.  Your health is as important to your caregiving as having a well-running car.

Caregivers must care for themselves first

Exercise:  You need to exercise a minimum of 30 minutes a day every day to help your body throw off the effects of stress.  Your adrenal system is hard at work and it’s filling your blood with hormones that aren’t particularly helpful.  Moving your body will help burn some of them away.  It needn’t be 30 minutes or more at one time, if that doesn’t work for you.  Be creative.  Use five, ten or 15-minute blocks of time throughout the day and do something you enjoy.   Even a brisk walk around the neighborhood counts!

Sleep:  You need seven to 10 hours of sleep out of every 24.  You can fudge on the overnight sleep, but only if you can make it up in a nap during the day.  Lack of sleep is a short-cut to caregiver burnout and serious, life-threatening illnesses.  If you’re not getting enough sleep because your elderly loved one needs you at night, then find help overnight or for a few hours during the day so you can nap.  Perhaps your loved one needs sleep aids for a quiet night’s sleep.  Perhaps you do because your stress levels are keeping your from getting the sleep you need.  Talk to either yours or your loved one’s doctor about sleep aids or remedies for your particular issue.

Eating:  Athletes know that their performance can be helped or hindered by what they eat.  Keep that in mind and go for healthful choices such as fresh fruits and vegetables, whole grains, grilled meats instead of fried, and drink plenty (as in at least 64 ounces) of water during the day.  Steer away from caffeine, alcohol, tobacco, high-fat foods (like French fries) and white sugar.  If you must eat fast food, find places that make fresh food like sandwich shops and Mexican grills.  If you find yourself in a burger place, opt for a salad.

I know that these suggestions may sound like a lot to add to your already-full to-do list, but they are important for your continued ability to give care.  Another way to look at it is that you need to be as compassionate in caring for yourself as you are in caring for your loved one.  Ask yourself this question: “If I become ill, who will care for my loved one?”

Blessings, Joanne

Expert Advice for Stressed Out Caregivers

Stressed Out CaregiversI have to admit, I love reminder acronyms (otherwise known as mnemonics). Here’s a new one to help you engage in some active self-care while you’re caring for another person.  Stressed out caregivers can’t give their full potential, so it’s important to learn to ask yourself… What’s my TALLY?

What’s A CareGiver Tally?

Take care of yourself;   Ask for help, for information, for training;   Leave room for caregiving;   Little things mean a lot;   Yes to hope!

Caregiver stress can be a killer. The problem is that many of you are locked in what I call “Caregiver Mentality”, in which you ignore the stress and its physical effects on your body.

Tips on Managing Caregiver Stress

1) Take care of yourself.  Engage in active self-care: exercise, eat well, make sure you get enough sleep, have a team of friends and family that support you in your caregiving.

2) Ask for what you need.  If you need help, if you don’t have the information or expertise that you need, speak up and ask for it! One of the hallmarks of “Caregiver Mentality” is a passive attitude in which you wait for someone to offer you what you need. If you need it to improve yourself, your knowledge, and/or your ability to continue on with your caregiving duties the best way you can, then ask!

3) Leave room in your schedule for caregiving.  Your time is impacted by your caregiving duties. That means you may need to release other voluntary obligations so that you have the time and space to devote to your loved one. Don’t cram caregiving on top of an already-full schedule.  On the flip-side, don’t forget to schedule time for yourself.  A little “me” time goes a long way to help with the stress and pressures of being a caregiver.

4) Little things mean a lot.  Treat yourself, as well as your patient, with compassion in small acts of kindness. Little acts that mean a lot to both of you may include a special meal, a fresh blossom from the market or your garden, time to just be with one another, actively listening to him or her, and finding someone who will do the same for you. These little acts will help reduce that big stress you are living with.

5) Yes! To hope.  Hope is a great gift to you and your loved one. Actively seek it out, and make room for it by releasing your fear. Dr. Bernie Siegel has a wonderful line: “In the face of uncertainty, there’s nothing wrong with hope.”

Blessings, Joanne

What Is A Caregiver?

what is a caregiverI’ve always thought the word “caregiver” did a good job of describing someone who makes time on a regular basis to care for and support someone who is ill, injured or suffers from a chronic condition.  But there can be issues, even with a word as mundane as this. So what is a caregiver?

In states that have laws allowing for medicinal use of marijuana, the term “caregiver” is one that is defined in those laws.  In order to grow or dispense marijuana, an individual must become licensed or certified by the state as a medical marijuana “caregiver.”

There’s potential for confusion here when I’m talking about people who are givers of care, versus people who are in the medical marijuana business in the states where it is permissible.

Caregivers and Support Partners

I have also noticed a tendency of certain kinds of caregivers to not identify themselves with that word.  It’s especially true for caregivers who are spouses.  I first noticed the shying away from being called a caregiver by spouses of cancer patients.  They see themselves as being in a support role for their loved ones, especially in the initial diagnosis and treatment phase.  The mind-set is that it’s a temporary situation and the word “caregiver” is too fraught with long-term and terminal connotations to be used.

Karen Galloway of the Western Slope Region of the Colorado Chapter of the National Multiple Sclerosis Society says they have a similar situation with their clients and their spouses.  “We don’t want to have people stop listening to the advice we have to offer because we use a word they don’t feel applies,” she said.  So instead of using “caregiver” for these spouses and partners, Karen and her colleagues use the term “support partner.”  That seems like a good choice if the person in question feels more comfortable with that descriptor.  Other groups use the term “care partner.”

By the way, caregivers are people who give care to other people.  Caretakers are people who take care of other people’s property.  Just thought you’d like to get that clarified, even if the meaning of “caregiver” isn’t as plain as it used to be.  What terms do you use to describe yourself as a giver of care?  Have you heard of other terms you would prefer?

Blessings, Joanne

Help With Caregiving

The one question I hear most often is “How do I get other family members to help with the caregiving?”

Asking for help with caregiving is as much art as science, but before you start writing off your siblings or other family members as being unwilling to help, you first need to assess your asking ability.

I need help caring for Mom (or Dad)” is not usually going to produce the desired results.  A general question like that, especially if it’s made in the midst of a larger conversation, is difficult to decipher if you’re on the receiving end.  It’s simply too open-ended.  The recipient is more likely to ignore it rather than get mired down in something too large to handle.

On the other hand, a specific question, “When you’re here this summer would you please take Dad on at least two half-day outings?” is both specific and clear.  It’s also more difficult to turn down.  That doesn’t mean that your sibling won’t turn you down however, so you’ll want to have a few skills in your repertoire to help him accept your request.

Here are some ideas:

  • Be specific.  “Could you please bring a meal for Mom and I at 5:00 on Friday?  We need two portion and please don’t bring anything with onion in it, Mom can’t eat onion any more.”  This will work far better than “could you bring a meal by sometime?”
  • Be realistic.  Asking your sibling to drive 300 miles every week so you can have a day off isn’t going to work.  Can he come once a month or once a quarter?  What about having him phone Dad once a week?
  • Be creative.  What are your siblings’ skills?  If they are good with computers, enlist them in making and sending cards on a regular basis, or producing short videos or photos to share with your parent.
  • Be flexible.  If you ask your sister to bathe Mom weekly, but she doesn’t want (or is not able) to, then ask: what would she like to do on a weekly basis for Mom?  The important piece here is not the bathing, but that your sis is engaged in Mom’s care on a regular basis.  Perhaps she’d be willing to take Mom to a movie, shopping, or read to her.  You can hire or find a professional volunteer through organizations like Visiting Nurses Association to help with the bathing.
  • Be inclusive.  A sibling who lives a long distance from home doesn’t have to be automatically excluded from helping.  Ask if they’d be willing to help track finances or insurance or any of the dozen paperwork threads that are wrapped around caregiving.  That 300-mile driving distance can be overcome with technology and your willingness to ask for help, even from a distance.

Blessings, Joanne

Checklist For Surgery Success

checklist for surgery successSurgery is one of the most stressful events facing both patient and caregiver, but it doesn’t have to be that way.  If the caregiver  is willing to take steps to prepare, better outcomes can be expected.  Here is our checklist for surgery success.

One of the best things that you can do for yourself (and your loved one) is to learn as much as possible about the upcoming procedure.  Research the surgery on-line.  Set up an appointment with the surgeon to ask questions until you and your loved one feel that you know what to expect of the entire process.  For instance, before some orthopedic surgeries, patients can strengthen surrounding muscles which will assist in the healing process.  Ask the doctor if there is an exercise regimen that you loved one can use to help them prepare for surgery.

One issue in recovery, especially among elderly patients, is post-surgery confusion, memory loss and difficulty in concentration.  It results from the use of anesthesia and pain-killing drugs.  It is usually temporary, but can last for months depending on the length of the surgery and use of pain-killers, along with the patient’s age and general health at the time of surgery.

On behalf of The Senior List I’m happy to provide a surgery checklist to help you and your loved one get through a surgery with minimal stress:

Surgery Checklist: Tips on Getting Through Surgery

  • Prepare for the pre-surgery consultation by researching the proposed procedure, and developing a list of questions to ask.
  • Bring the surgeon information about the patient’s medical history and a list of all the prescription medications, over-the-counter drugs, vitamins, supplements and any other substances that the patient is using.
  • Ask family, friends and work colleagues if they’ve had experience with similar surgical procedures.  You can learn a great deal from the experience of others.
  • Keeping in mind that confusion can be an immediate result of surgery, bring a few items from home, such as photos or a favorite memento, to help your loved one stay grounded in the unfamiliar setting of a hospital room.
  • Provide a sports water bottle that can be literally kept on their pillow to avoid a painful reach for a water cup or long wait for someone to provide water.
  • To prevent dry lips, use a lip balm attached to a long neck cord, as distance runners do.
  • Be sure that you are notified to be present when the post-operative visits are made by the surgeon or hospitalist.
  • Get a contact number that you can use in those first crucial days when your loved one comes home following surgery.  You need to know who to call when questions or problems arise.

Surgery doesn’t have to be hard on you or your loved ones IF you take the time to prepare yourself (and them) for it.

Blessings, Joanne

*Photo: Vectorportal via flickr

Frank Broyles Caregiving Tips For The Elderly

Frank Broyles is the Athletic Director Emeritus for the University of Arkansas, a title he earned after a long and very successful career as the university’s football coach.  Since his retirement, he has become a caregiver to his wife, Barbara, who is an Alzheimer’s patient.

Based on his life experiences, and his recent role as a dementia caregiver, he developed Coach Broyles’ Playbook for Alzheimer’s Caregivers.  In the book, you can find Frank Broyles Caregiving Tips For The Elderly.  You can dig into the book at AlzheimersPlaybook.com.  His ideas aren’t limited just to helping dementia caregivers.  They really apply across a wide spectrum of caregiving.

Included with the book is a pocket-book size of dozens of caregiving tips, listed in bullet format.  Here’s what he says to caregivers about taking care of themselves.  Think of them as Caregiver Survival Tips:

Frank Broyles Caregiver Survival Tips:

  • Put staying healthy at the top of your list.
  • Have a back-up plan in case something unexpected happens to you.
  • Take one day at a time.
  • Keep your sense of humor.
  • Pat yourself on the back for the good job you are doing.
  • Get enough rest and eat right.
  • Make time for the things you like to do.
  • Talk about how you feel with others.
  • Listen to your friends.
  • Make a list of all the things your loved one can still do.

This list in various forms comes from all sorts of caregiving experts.  I hope you’ll take it to heart and make it part of your daily life.

Blessings, Joanne