44 Million Unpaid American Caregivers

taskoverwhelmingYup, those of us doing it are often surprised to find out our friends and colleagues are in the same situation. Most of us step in and do it quietly. We may share the critical events as they occur, but often our feeling that this is a family duty usually means we don’t share the many ways that caregiving impacts us.

I was recently interviewed about the experience and am honored to be included in the stories that appeared in the NY Post, and Moneyish.

For those of us that have lived it, we know it’s overwhelming. My wish is that more employers will start to recognize and consider programs to help those stepping in to help their loved ones. Hoped.

How do I help from far away?

LetmemakemistakesA good friend called and wanted to know how often she should be visiting. Her sister and brother live near mom but she’s trying to chip in and do her fair share.  Is visiting every month, or every other month enough?

There really is no right or wrong answer. There is just the answer of what is right for your family.

My friend has been hiring and screening caregivers, and picking up extra projects (like getting a hospital bed at home). It turns out that her sister is overwhelmed and mom is only getting more prickly. She doesn’t want the help. She fires everyone that shows up to help for everything–from cutting the grass to helping get out and go grocery shopping.

I let her know it might be time to step back and let mom try and manage on her own. Sometimes you have to let them succeed or fail. She probably doesn’t believe she needs the help she is getting. It’s hard to do.

What if it were you? How might you like it if other people were making these choices for you–much less your own kids?

I know that she and her sister and brother are doing it out of love. They very much respect their mom. However, what you do thinking it is welcomed might not always be.

I also shared how I changed the language I used when my mom needed help, but didn’t recognize it. Could she suggest the person showing up to help around the house is one of her high school friends that wanted to visit with her mom? Could the person cutting the grass suggest he is neighbor home for the summer and just noticed that the grass needed a mow?

It took me a while to adapt and create situations that my mom could accept. Might something like this work to get her mom the need she helps but maintain her sense of self worth? I reminded her of all the things her mom lost. Her husband is gone, her sister took over her checkbook, she had to give up the car keys after the fall and hip surgery … what does she have that gives her purpose and meaning?

It’s easy to arrive and offer help, but we often neglect to recognize the need for our loved ones to maintain a sense of self-worth.

The question about how often to visit isn’t the real issue. But I know she is visiting her mom and talking with her siblings frequently. That is on top of her full time job … and her 7 children! I commend every adult child who is working to be involved. Their loved one is better off than the majority of the seniors in the United States. Appreciated. 

Caregiving Pulls Prime Age Women from the Workforce

BLSOn average, nearly one in four women aged 45 to 64 are unpaid caregivers according to the 2015-16 American Time Use Survey released by the Bureau of Labor Statistics. Nearly one in seven women 35 to 44 are serving in this role. Apparently, since early 2000 the number of prime age women began to decline after rising for half a century. This shift coincides with a rise in the elderly population.

Thanks to my sister-in-law who shared the article in The New York Times. The topic has been debated for years and the prime motivator was believed to be caring for children, but now it’s becoming clear that many women are leaving to care for an elderly relative.

I recently wrote about The Impact of Caregiving on Employment — AARP projected that 49 percent of the workforce will be providing care in the coming years — and I am hoping that employers will start to consider how to help their workforce navigate the coming reality.

My caregiving duties lead me to leave the workforce temporarily. I had no idea how to manage work, raise kids, and help my parents. I wish I had access to information on how to be a good advocate for a loved one. Now that I’m on the other side of caring to two parents, I provide educational programs to caregivers in hopes of helping other families navigate these difficult waters. We shouldn’t all have to learn “on the job”.

Now that I work in the world of caregiving, the idea that there really is no way to easily, affordably get care is an issue I see everyday. I don’t know how we can solve that, but I am glad to see that the facts are helping bring light to this growing issue. Shared. 

 

The Impact of Caregiving on Employment

Will employers ever realize that the cost-cutting measures to remove many of the wellness programs they used to invest in could actually make a big difference to their bottom line?

The trend seems to be on encouraging better health for the employees through monetary incentives to do everything from drinking more water to getting in more steps daily. These incentives dismiss the reality that millions of employees are dealing with health issues that are not their own … and it will ultimately impact their ability to perform their jobs and sadly, ultimately their health. One study found that employers paid about 8 percent more for the health care of caregiver employees compared to noncaregivers, potentially costing U.S. businesses $13.4 billion per year.

According to AARP About half (49 percent) of the workforce expects to be providing  eldercare in the coming five years.

After living through the care of two parents, I hope more employers will consider offering something as simple as a brown bag lunch to help employees understand the choices, issues, and how to better navigate the caregiving journey.  Most of us that do these workshops as well as those that are serving in the senior community left careers after being a caregiver. We know it can be easier, better, and are doing our part to make a difference. I hope if you are still working you have gone to your employer to find out what they might have in place to help you.

The Costs of Caregiving Affect Both Individual Workers and Employers

According to a white paper on caregiving done by AARP, U.S. businesses lose up to $33.6 billion per year in lost productivity from full-time working caregivers. Costs associated with replacing employees, absenteeism, workday distractions, supervisory time, and reductions in hours from full-time to part-time all take a toll.

While it’s expected to impact nearly half of all employees in the coming years, the initial fear was the loss of the workers due to aging. Now it’s the impact of workers caring for loved ones that will take a toll on our workforce.

Add the costs from increased health expenses for caregivers to the costs of lost productivity and the total mushrooms to $47 Billion. Have you noticed corporate America?

The report shares that:

  • Some 20 percent of all female and 16 percent of all male workers in the United States are family caregivers. That’s nearly 1/5th of all employees.
  • Nearly seven in ten (68 percent) caregivers report making work accommodations because of caregiving. These adjustments include arriving late/leaving early or taking time off, cutting back on work hours, changing jobs, or stopping work entirely (see figure 1).

Workaccomodations

Family caregivers (age 50 and older) who leave the workforce to care for a parent lose, on average, nearly $304,000 in wages and benefits over their lifetime. These estimates range from $283,716 for men to $324,044 for women.

For now, the numbers prove that both sides are on the losing end.

What I do know is that I lived though these statistics and can vouch that my caregiving resulted in me leaving the workforce temporarily. The impact to my lifetime wages and benefits was greater than the average. However, I enjoy my new career and wake up every day with a fire in my belly to make a difference, if even only for one person each day. Testified.

If your company is ready to put some caregiving education programs into place, you can reach me at 703.436.2827.

My Journey As a Caregiver … in 3 Parts

KaywParents2013I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.

1) The Fight to Become My Parents’ Caregiver

2) What It Means to Be a Caregiver

3) The Painful Choices End-of-Life Brings for the Caregiver

I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.

Grief is a Sneaky Beast

lefsemakingThis Christmas marked the one year anniversary of Mom’s death. My first thought was to take a trip. I didn’t want to be at home and relive last Christmas. I had forgotten we were hosting my in-laws, so my urge to run away from Christmas at home was thwarted. However, I was happy to be able to enjoy the holiday with family around.

I recognize now how my instinct to run from problems has changed over the past decade. I couldn’t run away from the call to step in and help my parents–but I did have minor tussles with myself when things got really tough. Caregiving changed me in many ways and I have to admit this one was a change for the better.

I learned to live in the moment and focus on what is in front of me. My mother-in-law used this Christmas to pass the baton on my husband’s family tradition of making lefse for the Swedish dinner. It’s a three day process. The first day you make the dough, the second day you make the lefse … and the final day is all about eating. It was a wonderful new tradition to absorb into our holiday.

On Christmas Day, I knew I had 5 sets of eyes on me. My husband reassured everyone that I would not want to talk about mom or the event. We actually had a lovely Christmas and I only reflected fondly on my memories of both my parents who weren’t with me. I was happy to have moved through the holiday surrounded by family and know every year will get a little easier.

I was surprised to find myself in tears two days after Christmas when I walked into a Valentine display. I will never see a box of Russell Stover’s and not think of my mom. I’m still shocked at how quickly the sadness descends to remind me of my loss. However, I’m now more mindful to quickly fill that void with all blessings that currently surround me. Enriched. 

3, 2, 1, … Enjoy Your Loved Ones When You Can

momxmas2014CHRISTMAS 2013: Just three years ago, mom was opening up a basket of breakfast treats. I remember feeling a bit lost about how to manage through the holidays. It was only a few months after Dad died. With no short-term memory, Mom, with Vascular Dementia, was having a hard time remembering, absorbing, and even grieving her partner of 60+ years. I wanted her to have a nice Christmas and worked to find a cute little Christmas tree (shown behind her) in hopes she wouldn’t feel so alone in this world.

I remember at this time working with the staff in her Assisted Living community to help her manage. She was calling me repeatedly asking about Dad. She was also getting into physical disagreements with other residents and the community was having a hard time helping mom through this period. This was about the time I started to recognize that the community she was in really wasn’t the right fit for her needs. Mom needed a memory care community — not Assisted Living which addresses physical healthcare needs. She was always on the go and craved activities with meaning and purpose.

Thankfully, my sister came and spent several days with her and I had a nice reprieve from caregiving over the holidays.

kayandkittyxmas2014Christmas 2014:  I had found mom a new community, but one week before the move date, she had a terrible reaction to a pain medication that resulted in her being bed-bound for nearly a month. After being in bed for so long, she was weak and didn’t trust her own two feet. It was several months before mom was back on her feet and moving around. On this Christmas she was still using a wheelchair to get around.

I went to visit her on Christmas Day and after opening up presents and eating a little, she asks to lie back down in bed. I arrived with my ugly Christmas sweater in hopes of bringing some silly humor to the holiday. She was in good spirits and we had a nice afternoon together. Before I left, she thanked me for “making her feel human again.”

Christmas 2015: Ten days before Christmas I was in the Emergency Room with mom who was diagnosed with a broken hip. She had a mini-stroke somewhere in the midst of all the commotion. We learn she is too weak for surgery. Mom no longer recognizes me and is moved into the care of hospice. I visit mom daily and spent most days crying as she sleeps. On Christmas Day, her breathing is a little more jagged, and by early evening I get the call that mom died. As bitter as that moment felt, I also recognize that we just received a blessing. Mom no longer has to live with dementia and can now rest with Dad.

As I approach my first Christmas without having to balance life as a caregiver, or worry about how mom will spend her holiday, I recognize how quickly the journey can end. This year I will focus on the wonderful holidays I did get to spend with my parents. Reflected.

Three Reasons to Hire An Aging Life Care Manager

logoI was the primary adult family caregiver for my parents for five years. My journey ended last Christmas when my mom passed away. I know I will be moving through a grieving process for many years to come, but was happy that her life with dementia ended. It’s a nasty disease that steals away our loved ones bit-by-bit.

I learn by doing and used this blog to chronicle many of my lessons in hopes that it may help others. One of the valuable resources you should be able to find in your community is a Life Care Manager (formerly referred to as a Geriatric Care Manager). They are usually nurses or social workers by training and have layers of additional education and practical experience required to earn this designation. Aging Life Care™ is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges. To find one in your area, you can visit the Aging Life Care Association.

Looking back, I could have called them in to help more and should have. There wee blocks of time when every visit to see mom was filled with medical follow-ups. I would have preferred to just visit mom and be her daughter than try to run down a host of issues from getting her toe-nails trimmed to a concerns about some intermittent dizziness she was experiencing.

The three times I recommend  you consider hiring an Aging Life Care Manager include:

  1. When you are looking for a community. My parent’s had bought into a Continuing Care Retirement Community (CCRC) but there was a point when Assisted Living wasn’t the right fit for my very mobile mom with dementia, and Memory Care  only cared for individuals in the final stages. I hired a local firm to help me whittle down the choices and understand how to measure each community.
  2. When your loved one ends up in the hospital. There were a few visits to the ER for mom in the last year of her life. I called in help when mom broke her hip and to operate, the doctor was demanding I lift the DNR. It was complicated, and the Aging Life Care Manager helped me navigate my choices and fulfill my mother’s wishes.
  3. When you just want to be the daughter, son, or spouse. As you have already learned, there is so much you don’t know about a medical condition they may have or the way nurses, doctors, and community health services work, that I recommend bringing them in to just manage the medical needs.

If you are in the DC-metro area, I am happy to provide a referral to some wonderful Aging Life Care managers. Recommended.

Dreaming of Mom

momandkayI was so happy when I woke up from a dream where mom didn’t have dementia. They started after mom died, and I hadn’t realized that for the last few years of mom’s life, she always had dementia in my dreams.

For the first time since mom passed away, I had a dream about her with dementia. Oh, it was awful and when it flooded back into my brain in the shower, I spent a few minutes crying it out. It’s been ten months since she passed. As sad as it was to absorb her death, I was also thankful.

Yes. I tell you that with some guilt. However, I know that my mom had hoped she wouldn’t have to live with dementia as she watched happen to her own mom. The odd thing was as my mom moved deeper and deeper into dementia, how hard she fought to live after each set-back. She never really bounced back and with each issue became more frail and in need of more care.

I’m perplexed by how we will get better at this as a society. The right to life movement doesn’t apply to people with dementia. It’s important to have those individuals who would step in to help you understand your wishes and beliefs completely because they will have to make choices you can never imagine nor can prior guidance cover. Statistically, 9 out of 10 of us will need someone to make choices about our last days on this earth.

I had choices to make and am thankful my siblings agreed with the final choices we needed to make on mom’s behalf. We knew she didn’t want to extend the qualify of life she was living so worked with the medical team to offer her a comfortable ending. I still carry some baggage and know much of it is still part of my grief.

I still miss her and I know that while the pain may subside, the loss will never truly heal. Changed. 

 

 

 

 

 

Am I Done Grieving?

Kay w Chaplain
Thanks Max for the photo!

I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.

The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.

About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.

I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.

Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused. 

How the Game of Thrones Soothed my Caregiving Guilt

downloadMy son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.

During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.

For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.

You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.

I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled.