We interviewed Kathryn Cherkas from the Alzheimer’s Association about paying for care. Here’s what she said:
“[For] the majority of people in America, affording care is a challenge. What the association can do as a whole is advise the best timeline for planning out finances.Our legal and financial planning course covers this and really demonstrates the importance of making these decisions early so that [it is] the person living with dementia’s decision, [so] their wishes are known and considered in all plans.
Our chapter here on the Central Coast does offer . . . “
Dial 2-1-1 anytime of the day or night to get respite care resources (and other help) in your area
For example, a search on the 211 website:www.211.orgshowed me resources near me, like the Jewish Family Service Caregiver Support Program which can offer respite help. I also found a link there that showed me 14 Adult Day Care options ranging from $0-65/day. As a nonprofit funded by United Way and local governments, 2-1-1 made more than 12.8 million help connections in 2018. It’s free to have them help you.
Here are four reasons why you should call 2-1-1 for answers about local nursing homes, walker recommendations, senior transportation and in-home care.
2-1-1 referrals are free.
2-1-1 is government-funded, but it is not just for the poor. The operators can give you information about support groups, housing options and caregivers.
2-1-1 gives you names and numbers of local companies, nonprofits or agencies that will provide the services your senior needs.
2-1-1 is open 24/7 and available by phone (best) or chat at 211.org or by text. They report that 94.6% of the U.S. population can access a local 2-1-1 center. My call was answered quickly by phone, but not at all by text.
Calling 2-1-1 would have given me a starting point to getting more help for my dad. Here’s a checklist of questions to ask 2-1-1 when you call, so you don’t forget anything.
Now may you have peace as you help an older adult in their waning phase of life.
Debbie McDonald is the Founder of Ways & Wane, an online platform that helps you help your aging parent. She lives in Northern California with her husband.
As you assist your elderly parent or in-law, you may not think about your employer as a resource. Instead you wonder if they are getting the most out of Medicare benefits and worry about their physical or cognitive decline.
Many employers offer a benefit to support your caregiving efforts. In fact, a Bank of America survey found that while 88 percent of the surveyed employers offer some type of caregiving resources, 71 percent of workers are unaware of these offerings, and just 34 percent have taken advantage of them.
Caregiving in the spotlight
With the proposed American Family Plan offering paid family leave to care for an older adult and the outcry over women caregivers leaving the workplace, employers are in the hotseat to offer more caregiving benefits. If your company does offer eldercare benefits, they likely exist within one of five different areas. If they don’t, now is the time to politely ask your human resources contact to consider adding an eldercare benefit.
A sibling or their partner can also qualify for an eldercare company benefit to provide assistance. Asking them to check into their company benefit can be a good way to get siblings involved.
Five places to look for it
An eldercare benefit may fall into several areas within a company:
Adult care Like a child daycare benefit, some employers cover backup in-home care or adult daycare.
Employee Assistance Program The EAP may provide eldercare navigation resources to help you find in-home care, pay for care, determine which legal documents you need and more.
Employee Resource Group Some large companies offer an Employee Resource Group (ERG) supporting employees caring for an older adult. Employees experiencing similar eldercare challenges may meet regularly to share resources and support.
Dependent Care Flexible Spending Account Using pre-tax dollars to private pay for eldercare expenses, can save you 20% or more depending on your tax bracket. According to the Society of Human Resource Management, “While the benefit is most often used to pay for child day care, elder care also is eligible for reimbursement with a DCFSA if the adult lives with the account holder at least eight hours of the day and is claimed as a dependent on the account holder’s federal tax return.”
Family Leave Some companies offer a leave of absence that is paid, unpaid or a combination of the two so that you can attend to your loved one’s needs for an extended period of time. This can be especially useful during intense times of transition from hospital to rehab to another living situation.
Email your HR department
Within larger companies, it can be difficult to find what benefits exist and how to access them. Copy and paste this message into an email and send to your human resources department:
To Human Resources:
Does our company offer any kind of eldercare benefit? Do we have an eldercare Employee Resource Group? What is our family leave policy as it relates to caring for an older adult? As I look forward, this benefit would be helpful. If we are considering a caregiver benefit, Ways & Wane solves eldercare challenges for busy professionals. I’d like to work with them. Will you reimburse employees for that expense?
Your employer values your focused contributions; offering caregiver benefits allows you to do your best work and creates a high return on investment for your employer.
Debbie McDonald is founder of the iCareToo movement and CEO ofWays & Wane, a benefit that solves eldercare challenges for busy professionals.
The hospice representative called to let me know that dad qualified for the program.
I told her, “I think we’re still okay to hold off.”
Two weeks later she called, “Do you want to rethink hospice care?”
I said no.
My dad’s dementia had become more severe, but he was still talking and eating well and he (mostly) knew who I was. That said, no one knows your person like you do. You can see how they are slipping away while others may not detect it.
It sounded so final to engage hospice.
We had no idea how quickly he would decline. Within two weeks, he was gone.
While I do my best to live my life without regrets, believing first to trust that things do not happen by chance, I wondered how his last days would have been different had we engaged hospice sooner.
Could I have been with him in those last moments? Would he have been more comfortable? Would my sister and brother and his grandchildren have been able to say good-bye?
A nurse would have visited him frequently, making sure he was comfortable. We would have had someone to call 24 hours a day, instead of the reluctant once-a-month visit from his doctor’s office. There would have been on-site medication oversight and administration. We would have truly known his condition.
People are either afraid of hospice or wish they’d engaged hospice earlier. I’d like to highlight a few of the facts here, particularly as it relates to dementia, and explain how hospice can support the caregiver with respite care.
Three points about hospice according to Medicare
To qualify for hospice care, a hospice doctor and your doctor (if you have one) must certify that you’re terminally ill, meaning you have a life expectancy of 6 months or less.
When you agree to hospice care, you’re agreeing to comfort care (palliative care) instead of care to cure the illness.
You also must sign a statement choosing hospice care instead of other benefits Medicare covers to treat the terminal illness and related conditions.
One of the services hospice provides is respite care for the family caregiver.
Especially when caring for someone with dementia or Alzheimer’s, the mental, emotional and physical toll on the caregiver can be enormous, making respite for the caregiver essential.
Here are four things to know about respite care through hospice:
Depending on the terminal illness and related conditions, the plan of care the hospice team creates can include inpatient respite care, which is care provided in a Medicare-approved facility (like an inpatient facility, hospital, or nursing home), so that the usual caregiver can rest.
Your hospice provider will arrange this for you.
Patient transport is included and you can stay up to 5 days each time you get respite care.
You can get respite care more than once, but only on an occasional basis.
For more information about paying for care, check this video by Author Cameron Huddleston.
Dementia is a disease with no cure so it qualifies as terminal, which qualifies a dementia patient for hospice. But how then is life expectancy predicted?
Crossroads Hospice and Palliative Care, a private company serving a handful of states, mainly in the Eastern U.S., says this about eligibility. For patients with dementia, it may be time to consider hospice when the patient’s physical condition begins to decline. According to Crossroads, some key things to look for include:
A diagnosis of other conditions as COPD, CHF, cancer or congenital heart disease
An increase in hospitalizations, frequent visits to the doctor and/or trips to the ER
A diagnosis or pneumonia or sepsis
Weight loss or dehydration due to challenges in eating/drinking
Speech limited to six words or less per day
Difficult swallowing or choking on liquids or food
Urinary and fecal incontinence
Unable to sit upright without armrests on chairs or may slip out of chairs and require sitting in special chairs
Unable to walk without assistance such as a walker or now requiring a wheelchair
Unable to sit up without assistance (will slump over if not supported)
No longer able to smile
Check the Hospice Foundation of America for what is included and not included in hospice care, how to choose a provider and how to begin the process.
This Sunday, June 13th marks the two year anniversary of my dad’s last breath on this earth. I’ll be taking off on a family road trip that day and thinking a lot about how much he loved to drive and explore and what an honor it was to call him daddio.
May you find joy in loving one another well.
Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on Ways & Wane she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.
This nonprofit gives free advice about Medicare programs that could provide financial assistance. Call to schedule an appointment with someone from your state.
Programs of All-inclusive Care for the Elderly (PACE)
This is a Medicare and state-specific “shared care” program for those who qualify. (You don’t necessarily need to spend down assets like you would to qualify for Medicaid.) It is not available in every state.
One support group participant was so excited that they qualified and will receive help through this program!
If you need more strategies to pay for care (or have a good idea to share), jump on our next support group call.
Are you grieving? Or are you slowly losing someone to dementia? Interviewer Elizabeth Dameron-Drew of Ways & Wane talks to Emma Payne of Grief Coach, a texting service to support people who are grieving, and the friends and family who want to support them, but often just don’t know how.
Mother’s Day is frequently a day filled with emotion, especially if your mother is suffering from dementia. Acknowledging the emotion—the joy, the grief, the regret, the love—and creating a plan for the day, transforms it. I gathered some sweet ideas for you, whether your own mom is still with you or not.
If your mom is with you (but not entirely), try these ideas.
Share happy memories about her from the past, reminding everyone who she is.
Celebrate all her senses with her favorite music and yummy scents.
Get a manicure together. (Maybe the grandchildren can do nails for you & grandma!)
Look at a picture album together.
Tell stories from her life where she was funny/bright/successful, etc.
Take an easy trip to a park or a beautiful drive. Just get out of the house.
Simply cherish that she’s still with you, even if the dementia has caused her not to know you.
If your mom has passed away, remember her in one of these ways.
Try out a hobby she loved. Maybe doing so will provide new insight into her.
Repurpose a piece of her jewelry.
Make a donation in her honor.
Frame her handwriting (maybe it’s a recipe card or a note).
Spend time with others who loved her too and enjoy reminiscing.
Celebrate another mother in your life.
Take a break from social media so you aren’t bombarded with Mother’s Day pictures that could make the day even harder for you.
If you anticipate that other family members will be grieving that day too, consider including them in the planning of something.
Whatever the day looks like for you, may you feel love and express love!
Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.