Tag Archives: family caregivers

The Family Caregiving Tsunami is Here. How are We Supporting Them?

We have a family caregiving tsunami whose tidal waves are affecting every corner of our society.  I venture to say that most communities are not prepared for the domino effects of a fast-aging population let along to provide support to their families that are scrambling to stay above water – emotionally, physically and financially.

November is National Family Caregivers Month.  Spearheaded by the Caregiver Action Network, the theme is Caregiving Around the Clock.  

As I travel abroad, I certainly see first hand that the challenges in the US are felt around the globe as this age-wave takes hold.  Public institutions are already stretched to serve current needs and despite the growth of

Let’s look at a few staggering US statistics compiled by the Family Caregiver Alliance:

  • Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • The majority of caregivers (82%) care for one other adult, while 15% care for 2 adults, and 3% for 3 or more adults. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
  • Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
  • About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

What is the Economic Impact?  

  • The value of services provided by informal caregivers has steadily increased over the last decade, with an estimated economic value of $470 billion in 2013, up from $450 billion in 2009 and $375 billion in 2007. [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]
  • The economic value of the care provided by unpaid caregivers of those with Alzheimer’s disease or other dementias was $217.7 billion in 2014. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]

The clock never stops for family caregivers, and globally the clock is ticking for public and private institutions, community organizations, faith communities and each one of us in this space to make a committment-  that in 2019 we do more to reach family caregivers, provide support services and needed resources.  They are and will remain the largest group support our aging population in the years ahead.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.

Grief, Guilt, and Anxiety – How We can Help Caregivers

As a long time family caregiver and professional in this field, I can tell you that the myriad of emotions that caregivers face on a daily basis is complex and ever-changing.  That said, grief, guilt, and anxiety are certainly at the top of the list.   How can we, as professionals in this field, better understand family needs and partner alongside them on this difficult journey?

Let’s talk first about the emotions that family members experience in deciding to move their loved one into assisted living or another level of care.  First, families are often focusing a tremendous amount of attention on helping their loved one cope.  This can be overwhelming in itself, and certainly where the grief, guilt, and anxiety begin to kick in.  Grief may be the sadness of realizing that their loved ones are aging.  If there is chronic or serious illness, anticipatory grief might be the realization that death is in the foreseeable future.  If a loved one is living with dementia, grief is felt over the loss of who that person once was.

Families, especially primary caregivers live with guilt.  I often tell caregivers this is an added benefit of the job.  Often second-guessing decisions,  caregivers tend to be overly sensitive to their loved one’s own emotions.  At the same time, juggling family, job responsibilities, and caregiving duties can leave a person feeling like they are not doing a good job in any of those areas.  When guilt piles up, it often spills to feelings of unfounded fear and doubt.

Anxiety, like grief and guilt, can be caused by and can cause a snowball of other emotions.  When a family member is the one “in charge” of taking care of the many tasks associated with moving their loved one to a care facility, anxiety kicks in quite easily.  What often happens is that when one is under stress, rational decision making sometimes goes out the window.

It’s important that as professionals we assure families that, as hard as this process is, it is normal to feel these emotions.  Helping them with resources (movers, real estate professionals, support groups, etc. can ease some of the burdens and also provide a network of people who are experienced and trusted).

While family members, especially primary caregivers are learning, most have not walked this path before.

If there is one piece of advice that professionals need to remember it is that families know far less about the complex world of caregiving, levels of care, chronic illness, Alzheimer’s and other dementia, legal and financial planning and dealing with stress and burnout – than we expect them to!  This is not to diminish the admirable responsibilities that caregivers take on.  There is just so much to learn.  I was years into caregiving myself before I even realized what I needed to know – and then under stress, I’d forget the things I did learn!

Professionals can be a much-needed gentle guide through this process.  Here are a few tips that may benefit the family:

  1.  Give them a checklist of things to do before their loved one moves.  This list may include what to bring in the way of furniture, clothing and personal items.
  2. Invite them for lunch and go over the list and any concerns.  This is a good time to get to know a bit more about their future resident, but also the relationships of the family.
  3. Assure the family that as difficult as this time is, it will get easier and that staff is there to ease the transition for everyone.
  4. Make sure the family feels comfortable with the staff that will be most involved in the initial move and transitioning their loved one.  Knowing and discussing any questions upfront will save day-of moving confusion.
  5. Encourage the family to give their loved one a few days to settle in.  They will benefit by the break, and many times it helps the new resident get acclimated to their new home.

A smile goes a long way, a hug calms fears, and humor eases tension.  

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  

Caregiver Resentment and How it’s like Weeds in your Garden!

I just can’t help but talk about gardening this time of year.  I admit it – I’m addicted.  It’s not uncommon for me to get my garden gloves on early on a Saturday morning and still have them on when at sundown.  Once I start working in my garden, I just can’t stop – especially this time of year.  So why am I going to talk about caregivers resentment and weeds in your garden?

Weeds can take over a garden – very quickly.  And before you know it, the weeds are all there is in the bed.  It’s unsightly and worse, it keeps the good stuff from popping up.  They zap the energy in the earth, grabbing all the good minerals for themselves, and leaving those gorgeous flowers to fend for themselves.  So what’s the answer?  Pull them!  And keep pulling them – don’t stop!  Because if you do, they’ll soon find out they are unwanted and with proper bed preparation, the weeds eventually get the signal that there is no room for them.

Caregiver resentment, like weeds, can creep into a caregivers world and take over quickly.   Caregiver resentment is not healthy, does not allow the beauty to shine and certainly is not good for your overall health.  So let’s have some straight-talk on caregiver resentment.  Have you heard this from someone else or be honest – have these words come out of your own mouth?

“I’m just exhausted.  Mom has been in rehab for over a month and once again my brother hasn’t made it in, my sister came for a few hours – LIKE ALWAYS- I’m the one holding down the fort.  I’m there every waking moment, running home to care for the dogs, water the plants and make sure the mail is taken in.  No one seems to EVER get that I have a job and other responsibilities.  I guess their upcoming vacation is just taking all their time in planning.  Gosh, it must be nice.”

I’m going to stick my neck out here and say this is not only resentment but a serious case of caregiver martyrism.   We’ll call this fictitious (but very real) person Mary.  Obviously, Mary is very resentful of her siblings not stepping up to the plate.  We don’t know if Mary has expressed to them the need for help.  It has happened before, so either her siblings have not been told that they need to take on some caregiving responsibilities or maybe Mary has just determined she would take it all on.  I would venture to guess that she might even be a little resentful of the dogs, plants, and mail – not to mention her mother!

Mary is experiencing caregiver resentment – toward her siblings, added responsibilities and quite possibly her mother.  I’m guessing that her visits with her mom may be stressed-filled and hurried.  In addition, her resentment might be affecting her other relationships with loved ones and friends.

If Mary were to offload some chores, and either accept that her siblings are not helping, or seek assistance from other sources, she may find the weeds of resentment begin to shrivel up.  Her visits with mom may be more pleasant,  and she might even have time to spend with her family, friends, and hobbies.  Of course, I would suggest that Mary dig in the dirt and actually do some weed pulling herself!  It’s great therapy and teaches you so much about what’s important in life while learning little nuggets of truth along the way.

Caregivers, please watch for those weeds of resentment that may be creeping into your life and before they take over, please do some digging.  Resentment is not healthy for you, and it’s not fun to be with someone who is carrying this with them.

Remeber to pull the weeds and water the flowers – it’s a gift to yourself and those around you!

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  A longtime family caregiver herself, she has devoted the last 10 years to helping caregivers better care for others and themselves.   

http://www.AGEucate.com

Parkinson’s Disease and Dementia – What you Need to Know

Eldercare is becoming more about caring for those with dementia.  Because our fastest growing segment of the population are those 85 and older, it correlates with the rise in people living with dementia.  In fact, one in three people age 85 and older are living with some level of dementia.   There are over 1 million Americans living with Parkinson’s Disease and over 10 million worldwide.  This number is also rising with the increase in longevity.

According to the Alzheimer’s Association, Parkinson’s disease dementia is a decline in thinking and reasoning that develops in many people living with Parkinson’s at least a year after diagnosis. The brain changes caused by Parkinson’s disease begin in a region that plays a key role in movement, leading to early symptoms that include tremors and shakiness, muscle stiffness, a shuffling step, stooped posture, difficulty initiating movement and lack of facial expression. As brain changes caused by Parkinson’s gradually spread, they often begin to affect mental functions, including memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task.  About half of people living with Parkinson’s Disease have dementia.

Commonly reported symptoms include changes in memory, concentration, and judgment; trouble interpreting visual information; muffled speech; visual hallucinations; delusions, especially paranoid ideas; depression, irritability and anxiety; and sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder.

Because Parkinson’s is such a highly complex disease, caregivers may often find that dealing with dementia symptoms are even more complex due to many other neurological effects of the disease.  It’s important that caregivers pay attention to declines in cognitive condition with their loved ones.  Noting behaviors and addressing these with their healthcare professional may help in determining if drug alterations may alleviate some of the dementia symptoms.

Care Partners for those living with Parkinson’s face many challenges due to the nature of the disease itself.  When cognitive decline becomes part of the mix, it can lead to extreme stress and anxiety.  Seeking education, support and resources are critical for care partners, as early as possible, is critical for families especially the primary caregiver.

Here are some resources that may help caregivers get started in learning more about dementia and Parkinson’s Disease.  I encourage finding local support groups to attend as these are often valuable in connecting with others, learning new tools to cope and understanding local resources.

www.parkinson.org

www.davisphinneyfoundation.org

www.michaeljfox.org

Pam Brandon is President/Founder of AGE-u-cate Training Institute and passionate advocate for older adults and those who care for them.  She is a 10-year care partner for her mother who lived with Parkinson’s Disease and has devoted many years to helping families live well with PD.  

www.AGEucate.com