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

Caregiving During The Holidays

Caregiving during the holidaysThe year-end holidays are coming, and I want you to think for a moment about your plans to celebrate.  Rather than do your traditional celebrations, please consider alternative plans and reducing the burden to both honor and support your loved one.  People who are dealing with chronic ailments or who are in pain shouldn’t be expected to go through the holidays as they once did.  No matter how much you (or they) may want “the usual traditions”, you need to take into account reduced stamina and increase frailty.

Tips For Caregiving During The Holidays

Be sure you include your loved one in the planning process, this is very important.  They may want to do everything as it’s always been done… So you’ll need to help your loved one understand that there needs to be new traditions started (in order to account for the place you all find yourselves in now).  That’s not to say you can’t or shouldn’t celebrate!  It’s just a way of remembering that whatever you do, you need to take your loved one’s state-of-health into account.

Here are a few examples of how to reduce stress on your loved one:

  • Instead of a day-long cookie-baking extravaganza that will only exhaust mom, why not pre-bake the cookies?  That way mom can join in the shortened party to decorate them.  She’s still participating, but at a level she can handle.
  • Instead of the big traditional holiday dinner, why not down-size to a series of short events with much lighter menus.  A tea-and-cookies event, wine and appetizers, or even a bring your favorite soup party?
  • Folks who are frail and those suffering from dementia can be overwhelmed by even a handful of familiar faces.  It quickly becomes too much information to recall, too much energy to absorb, and your loved one may respond not with enjoyment, but with highly anxious behaviors.  It’s a good reason to keep your gatherings very small, maybe only two or three people at a time.
  • For the elderly, the process of selecting, buying and wrapping gifts may be too taxing.  Instead of doing a gift exchange, what not use the time to pull out the family photo albums, videos or 8 mm movies?  Other alternatives to spending time exchanging gifts would be to play board or card games that your loved one enjoys, or watch holiday-themed videos.  Our family holds a comic movie film fest.  Laughing together really makes for a great holiday mood.

You get the idea—think small and intimate.  You can still do all the holiday decorating, just have mom supervise from her favorite chair.  You can share and enjoy the music and food of the season.  Just keep your loved one’s state of health in mind and then make appropriate plans.

Blessings, Joanne


Mom Has Dementia

Dementia Safety Precautions

“Mary” posted a question to an on-line caregiver-group that I want to share with all of you.  Her mom has dementia:

“How do I keep my parent, who’s suffering from dementia, safe while I’m at work?” – Mary

Here are some suggestions from the Alzheimer’s Association brochure, “Staying Safe”:

  • Be sure to have working fire extinguishers, smoke alarms and carbon monoxide detectors in the house.  Test them regularly.
  • If you are out of the home during the day, use appliances with an auto shut-off feature, such as coffee pots.
  • Install a hidden gas valve or circuit breaker on the stove so your loved one can’t turn it on.  You can also consider removing the knobs when you leave the house.
  • Store grills, lawn mowers, power tools, knives, firearms and cleaning products in a secure (that means locked) place.
  • Discard toxic plants and decorative fruit that may be mistaken for real food.
  • Store medications, vitamins, and other dietary supplements in a locked cupboard.  Remove sugar substitutes and seasonings from kitchen tables and counters.
  • Supervise the use of tobacco and alcohol.  Both may interact dangerously with your patient’s medications.

thumbs upDementia & Wandering

More than 60 percent of dementia patients will wander.  The danger is that they can become lost and die before they’re found.  The Alzheimer’s Association recommends the use of their MedicAlert-Alzheimer’s Association Safe Return program.  There are other, similar programs available, which you can find on-line.

Even if your dementia patient is equipped with one of these tracking devices, prevention is still the best plan:

  • Short term memory loss can cause anxiety and confusion in a place that’s large or contains lots of people, such as the market, a theater, a restaurant, a shopping mall or sports venue.  That confusion can cause patients to wander off in search of something that will quiet their sense of panic.  The best strategy is to keep away from places that will induce this behavior.
  • Be on alert for wandering if your loved one wants to “go to work” or “go home,” if he or she is restless or has a hard time locating familiar place in the home such as the bedroom or bathroom.
  • Other ways to prevent wandering include placing deadbolt locks on exterior doors either high or low, and controlling access to the car keys.

One of the best things you can do when your patients are showing signs of anxiety which may lead to wandering is to give them plenty of assurance that you will not leave them alone.  Try distracting them by giving them repetitive tasks, like folding laundry or helping prepare dinner.

Keeping your dementia patient safe is really a matter of being aware of their reactions and anticipating problems before they actually occur.

Blessings, Joanne

*photo –

What Is Veterans Day?

What is Veterans Day?November 11 is the day we set aside to honor the many veterans of military service who have served our country.  Are you caring for someone who is a veteran of military service?  Many of the vets of World War II are in their 90s or older.  The “forgotten vets,” the men and women who served in the Korean and Vietnam conflicts—and a few of the other military incursions that the U.S. made during the Cold War—are aging as well.

What Is Veterans Day?

World War I – known at the time as “The Great War” – officially ended when the Treaty of Versailles was signed on June 28, 1919, in the Palace of Versailles outside the town of Versailles, France. However, fighting ceased seven months earlier when an armistice, or temporary cessation of hostilities, between the Allied nations and Germany went into effect on the eleventh hour of the eleventh day of the eleventh month. For that reason, November 11, 1918, is generally regarded as the end of “the war to end all wars.” – US Department of Veterans Affairs

Military service, and especially combat experience, can have an enormous impact on a young man or woman, so it makes sense to encourage your loved one to reflect on his or her experiences, something they may not have done before now.  One way to help start the process would be to help them visit a web site like the U. S. Department of Veteran’s Affairs (VA).  Another online resource is Make the   Here you’ll find a wide range of short videos, made by veterans of all the major conflicts of this and the last century.   Those videos may help open a door to your loved one’s ability to talk about his or her experiences.  By listening to what they have to say, you honor them for what they did to serve all of us.

In November 1919, President Wilson proclaimed November 11 as the first commemoration of Armistice Day with the following words: “To us in America, the reflections of Armistice Day will be filled with solemn pride in the heroism of those who died in the country’s service and with gratitude for the victory, both because of the thing from which it has freed us and because of the opportunity it has given America to show her sympathy with peace and justice in the councils of the nations…” – US Department of Veterans Affairs

There’s also quite a bit more information on benefits and resources for veterans at  IF your loved one is a wounded vet, pWhat is Veterans Day | wounded warrior projectlease go to The Wounded Warrior Project, there there is a great deal of support and resources for the wounded vet (and his or her family) to be found there.

More On The History Of Veterans Day

An Act approved May 13, 1938, made the 11th of November in each year a legal holiday—a day to be dedicated to the cause of world peace and to be thereafter celebrated and known as “Armistice Day.” Armistice Day was primarily a day set aside to honor veterans of World War I, but in 1954, after World War II had required the greatest mobilization of soldiers, sailors, Marines and airmen in the Nation’s history; after American forces had fought aggression in Korea, the 83rd Congress, at the urging of the veterans service organizations, amended the Act of 1938 by striking out the word “Armistice” and inserting in its place the word “Veterans.” With the approval of this legislation on June 1, 1954, November 11th became a day to honor American veterans of all wars. – US Department of Veterans Affairs

Blessings, and thanks to those of you who served our country,


*Photo courtesy of

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

Taking Car Keys From Elderly Parent

taking car keys from elderly parentFollowing a workshop I performed this summer, 3 women each waited patiently to discuss an important issue with me.  As it turns out all three had the same dilemma… What to do on the topic of:  Taking car keys from elderly parent.  For the first woman, it wasn’t the fact that her Dad was coming up on his 99th birthday and still driving.  It was that she felt her Mom was asking him to “drive more than he should”.  For another, it was the emotional issue of role-reversal in taking away Mom’s driving privilege (i.e. the child becoming the parent).  For the last, there was no doubt or hesitation about what needed to be done, her question was how to do it.

This is one of those key questions I hear regularly in my workshops as I travel around the country.  It’s a tough one to solve because there is so much emotional power tied up in the independence of being able to drive.  The issue is further complicated when the person in question lives in an area where public transportation isn’t good.   If this is your caregiving dilemma, it may help you to pull the problem apart into bite-sized pieces.

Taking Car Keys From Elderly Parent

  • First step; Determine if your parent’s driving is hazardous.  Do they drive too slow or too fast?  Do they have trouble reading street or traffic signs?  Have they recently side-swiped other cars or been in fender-benders?  While these little accidents aren’t big concerns, they may be a tip-off that your parent’s vision isn’t sharp enough for them to drive safely.  If you don’t want to be set up as the judge of your parent’s driving ability, contact an Occupational Therapist (OT) and have him or her conduct a driving ability assessment.  The pitfall to avoid is having the mind-set that even though Mom or Dad’s driving isn’t good, “They only go to the store/church/library/doctors, so it’ll be OK.”  Release that thought.  Driving skill is either there or it’s not.  If it’s not, then they shouldn’t be driving.
  • Next step; Talk to them about how they feel about their driving skills.  They will probably acknowledge that it’s not perfect, but will insist that it’s adequate.  That OT assessment can come in handy if the test results were poor, but your parent thinks his or her driving is still safe.  If they still insist they’re OK to drive, then check with your local Motor Vehicle Department office to find out what kind of help you can expect from them.  Some states will revoke a license upon request by a physician.  Can you get such a request from your parent’s doctor? Some states require regular driving tests when a person reaches a certain age.  Others will ask a driver of a certain age to be tested if someone requests the test.  The pitfall is that among these states, some will disclose to the driver who’s being tested the name of the person who turned them in.  This can cause problems if you’re the informer.

“It’s a tough one to solve because there is so much emotional power tied up in the independence of being able to drive.”

If the authorities are not going to help you take the keys away, here are some other ideas:

Other Ideas For Dangerous Drivers

  1. Contact the auto insurance company and let them know about the problem.  They may revoke the insurance, in which case Mom or Dad cannot drive while uninsured, or the cost of it will become prohibitive.
  2. Disable the car.  This only works if the driver isn’t sufficiently familiar with the car’s engine and can’t spot the sabotage.  Tell them there’s a delay in finding the part that’s needed, and while this is going on, help them to adapt to a new mode of transportation.  By creating a new habit in place of the old, they may give up on wanting to drive.
  3. If the issue is dementia, try removing the car in an out-of-sight-out-of-mind plan.  For these folks, once the car is gone from their physical presence, it may eventually fade from their consciousness all together.

Remember, the problem to be solved is to keep Mom and Dad safe, not to engage in a contest of wills.  Approach the problem from the safety point of view and you may be able to elicit their cooperation in willingly giving up the car keys.

Blessings, Joanne

Dementia Patients And Wandering

dementia patients and wanderingAccording to the Alzheimer’s Association, six of every 10 dementia patients will wander.  When they do, their lives are at risk.   And yet, how many of you caregivers of (elderly) dementia patients are prepared to deal with the reality of this dangerous potential?

Too often, I hear a statement like “Well dad hasn’t tried to wander off yet, so we don’t need to worry about that right now.”  The problem is that there’s no way to know when dad will wander off.  It makes sense to be proactive to prevent wandering rather than wait for disaster to strike.

A recent story in the LA Times reported a 92-year-old dementia patient whose family was in denial about the possibility of him wandering.  When he did, he was lost for nearly 24 hours.  The story had a happy ending when he was found, tired, hungry and dehydrated, but safe.  Sadly, not all of the stories end that way.

In this case, the family was convinced that even though their loved one was suffering from dementia, he wouldn’t wander.  They all went to dinner in a large restaurant and let him go to the restroom alone.  He didn’t come back. “He kind of has dementia,” said one of his relatives.  “He might not have remembered that he was with us or where he was.”

Oh brother.  Without dealing with the denial of reality (in those statements), let’s just focus on the fact that as a person with dementia, he has significant short-term memory loss.  He can be easily confused in surroundings where there are large groups of unfamiliar people.  Obviously he couldn’t remember he was with family in the large and unfamiliar restaurant.  And likewise, he didn’t know where he was… so he went in search of “home.”

He kind of has dementia – Family member of wandering dementia patient

Don’t wait until something like this happens to your loved one.  Take action now.

The Alzheimer’s Association (1-800-272-3900) has some terrific information to help you make sure your loved one will stay safe.  In addition, there are now tracking devices, smartphones, dumb phones, and apps for seniors that can be tracked from your smart phone, tablet or computer.  Type “tracking devices for dementia patients” into your search engine and you’ll be amazed at the number of products that are available.

Blessings, Joanne

Baby Boomer Demographics Are A Tidal Wave

baby boomer demographicsIf you’re a Baby Boomer like me (born between 1946 and 1964) or you’re a caregiver to one, it’s  worth mentioning that the need for caregivers is only going to be increasing in the coming decade.  If you know anything about the baby boomer demographics, you know this is a tidal wave that is just beginning.

In its annual report on The State of Health and Aging in 2004, the U.S., the Centers for Disease Control and Prevention noted that the aging Baby Boomer generation represented a “demographic tidal wave” that threatens to overwhelm health care delivery in the U.S.  It’s no surprise that the report called for a new focus on training and generally equipping our generation (and our kids) to be prepared to be caregivers.

Here are some ideas for keeping your head above water as this tidal wave envelops us:

  • Refresh (or acquire) first aid training, including CPR.  Your local adult education program or Red Cross chapter has classes.  Urge your kids to do the same.
  • Gather your life documents into one file.  A friend’s mom did so, and when she died suddenly (and unexpectedly) all of her information was in one notebook.  Everything from funeral arrangements to birth certificates… life insurance policies to vehicle pink slips… and more.  It’s a bit of a process to assemble, but it makes dealing in a crisis much easier for everyone.
  • Do the same organizing for your medical information.  Make a list of all the drugs you take.  Be sure to include the dosage for each drug.  What are the names, addresses and phone numbers of all of your doctors?  Create a health history for yourself, listing all the significant illnesses, conditions, injuries and surgeries that you’ve had.
  • TALK.  Have conversations with your loved ones about what your hopes and concerns are for your future care and well-being.  Document your advance directives so there’s no doubt in anyone’s mind what you want.  There are lots of forms available online.

Think of this kind of preparation as strategic planning so that you and your loved ones are prepared for a crisis.  It’s a way to begin stocking your life raft for when that big wave of care hits.

Blessings, Joanne

Caregiving and Nutrition

Caregiving and NutritionOne leg of the “self-care trinity” for caregivers is healthy eating. I don’t know about you, but the combination of those two words makes me think about “sticks and berries” (in other words… food that’s not fun to eat).  Let’s talk about Caregiving and Nutrition.

I’ve got good news for you caregivers:  I’ve discovered some fun food that can help keep you at your best so you can offer your highest level of care!

Healthy Food That’s Fun To Eat:

  • Fruity cocktails may actually be good for us. According to Woman’s Day magazine, research shows that alcohol can increase the level of antioxidants in certain fruits, such as strawberries.  That means one strawberry daiquiri or margarita has health benefits, along with tasting good.
  •  Pizza can be healthy provided you make some changes in preparation: use a whole wheat crust and low-fat cheese (in moderation).  Skip the meats, especially the high fat ones like pepperoni and sausage, and pile on the veggies.
  •  Fruit juice can be healthy as long as it’s 100% fruit juice.  Orange juice, especially, has plenty of fiber and antioxidants.  Some research has shown that daily consumption of 6 to 8 ounces can lower Alzheimer’s risk by as much as 76%… But that’s not a direct correlation.  It’s dependant on other factors as well, the most important one being age.
  •  For women, red wine and dark chocolate are heart-healthy foods, provided they’re eaten in moderation.  One small chocolate (not a box of them) and a glass of red wine can actually have health benefits.  Gentlemen, it’s also been found that a wee bit o dark chocolate is good for your hearts, too.

Moderation and Balance are Key Components of any Healthy Eating Plan – Joanne Reynolds

Caregiving and NutritionAnd that brings me to the closing thought about caregiving and nutrition:  It’s about moderation. TOO MUCH OF ANY ONE THING, whether it’s toffee or tofu, isn’t going to be good for you.  Moderation and balance are key components of any healthy eating plan.  Remember that the goal is to fuel your body well to keep you strong for your caregiving assignment.

Blessings, Joanne

Family Meetings With Caregivers

family meetings with caregiversChristine M. Valentin is a Licensed Clinical Social Worker (LCSW) who specializes in working with caregivers.  She has an excellent website at  One of her recent posts concerned how caregivers can manage successful family meetings.  Here are her top four tips for family meetings with caregivers.  Keep in mind, a successful family meeting won’t always end with unanimity, but it can allow every family member the opportunity to be respectfully heard.  Sometimes that’s more important than everyone being in complete agreement about what to do for mom or dad.  Here are her tips:

Caregiver Tips for Family Meetings:

  1. Everyone who attends the meeting should, at the very least, want to attend and respect the viewpoints of other family members/attendees. This is not to say they have to agree with everything that is said, but if they are solely attending the meeting to get others to side with their viewpoint, then it won’t work.
  2. The purpose for the meeting should be made very clear when inviting people to attend and should also be reviewed at the start of the meeting. Family members/attendees should not show up believing certain topics will be addressed because it could lead to a feeling of mistrust, skepticism and in some cases, complete disregard for what is being said.
  3. Don’t be afraid to bring in a mediator.  Whether this individual is a professional or the most level-headed person in the family, having someone who can make sure the discussion doesn’t get too personal can be of great assistance. During family meetings, it is not uncommon for past conflicts or accusations to get in the way of the objective for the meeting. Having a mediator can help refocus the group.
  4. Assuming that this meeting will solve everything, will only set you up for disappointment. Any family meeting, especially the first few, will most likely be filled with a lot of clarification, explanation and emotion. Set your goals low but aim high. Once you get a feel for how the meeting is flowing, then you can get a sense for how many topics can be addressed.

Ms. Valentin closes her list with an important thought, which is that while there are no guarantees that a family meeting will resolve your caregiving issues/conflicts, there is a great chance that people who attend a structured, goal-oriented meeting will come out experiencing a greater understanding of another person’s viewpoint and a sense of relief.  If a plan of action is devised and agreed upon by all, then the meeting was definitely a success!

Blessings, Joanne