By Allan Checkoway
Your elderly parent has been most fortunate to have lived a healthy lifestyle for decades. There are presently no warning signs on the horizon.
When we hear personal stories about long term care “events”, they’re usually conflicted or disturbing and almost always negative. Siblings become angry with each other over who will be responsible for the parents care. When Mom passed away, she didn’t know who Dad was anymore. All their savings went to the nursing home and there was nothing left for the family. Long Term Care is always a FAMILY ISSUE.
Unfortunately, long term care experiences have been known to destroy family relationships. Better planning and communication might have avoided the hurt feelings.
CAREGIVING BEGINS “GENTLY”
We use a Time Bomb to remind us of what happens when we run out of time. Let’s look at the process of caregiving and how it frequently begins.
Caregiving usually begins somewhat “gently”. It’s little more than bringing her some tea so she doesn’t have to walk downstairs. It’s a kind gesture. You’ve noticed Dad’s increasing difficulty with navigating the stairs. This is before the fall resulting in a broken hip, before installing the elevator going upstairs.
Or, she offers to drive to see their grandchildren. He’s reluctant to give up the keys the first time. Then, after his first minor accident in years, he’s more willing to let her do the driving. Then he fails the driving test for his license renewal. Now she has to do all the driving and is secretly fearful she’ll have another dizzy spell while driving.
The caregiving role begins gradually most often, yet becoming more insidious with the passing time. It may have begun driving her to the supermarket or installing grab bars in the bathroom. Before they realize its happening, the caregiver is in over his/her head. Their relationship starts to change and the angry outbursts begin. As they are now just surviving each day, that “loving feeling” is all but a memory. How might they have done it differently?
People don’t go to care facilities when they should. They go when caregivers can’t deal with it anymore and the decision is taken out of their hands! Do you have any idea what dementia does to families? Have you ever envisioned being in a caregiving situation?
We all value being independent yet at the same time have terrible fears about losing our independence.
A life out of control
Consider the following . . . Today you’re healthy, living your normal life with few concerns for the future. You and your wife of many years have shared decades of good health and good times. Imagine during the night you wake up sweating, feeling as if a red-hot knife had been driven into your chest. Two days later, you wake up in intensive care. When you first hear you’ve suffered a massive heart attack, your first thought is you’re just grateful to be alive. As the shock wears off, you begin to organize your thoughts.
Disabilities can, and do, happen that quickly. One moment you’re healthy and carefree. The next, your life has been changed irreversibly. The transition from full wellness to having a disability has been described as being like “walking into a wall”—except much worse.
We all face the chance that we’ll end up facing what might best be described as a life out of control. Your medical condition, the doctors, the nurses, your family, your circumstances will be dictating what your new future will be like. You’ll no longer control your own destiny. The worry free peace of mind you’ve experienced for most of your life is now gone forever.
In developing an article for mobileWOMEN.org, I took a most unusual approach. I envisioned having a sister who spent most of her adult years in a wheelchair. I always would want to protect my sister from ever ending up in a caregiving situation.
Aging parents put their children in “harm’s way” unknowingly. We define “harm’s way” as a financial or psychological downturn that can impact their children. The best example would be caregiving for a parent where the daily stress and strain of caregiving has dangerous consequences.
Let’s explore some undeniable facts that every American senior at age 65 or older faces:
- 50 percent of adults age 65 and older has a disability.
- The lifetime probability facing a 65 year old of developing a disability in at least two primary activities of daily living for at least three months, or becoming cognitively impaired; is 44 percent for males and 72 percent for females.
- An individual with an existing disability faces an even greater risk of another disability
So what do we do when a parent with failing health falls & is afraid to leave the house for fear of falling again? It’s imperative for a family member to be proactive, calling together family “resources” before an accident or illness takes away the opportunity to initiate a voluntary long term care plan on the parents terms.
A suggested action plan for mobileWOMEN.org readers
It’s best to focus on the needs of your aging Dad or Mom whose health is failing. You may want to consider having someone from outside the family to be a family meeting facilitator. A minister, rabbi, priest, social worker/geriatric care manager, possibly a psychotherapist trained in family counseling may all be considerations for a neutral facilitator. It’s well worth everyone sharing that moderate expense for the sake of family harmony. Plus, it will add one more objective caring voice.
Some suggestions for approaching the upcoming failing health and eminent long term care issues facing an aging parent(s).
- Suggest a time when we can meet to discuss your plans for the time when you’ll need to explore alternative assisted living options. (Don’t be surprised to be facing resistance or hearing “we’ve already taken care of that”).
- Prepare yourself for the “independence struggle”. Parents who have lived a healthy life full of family social gatherings have great difficulty when that ends . . . and it will. Your need for patience and understanding will be tested for sure.
- Suggest that at a time of crisis is not the time to be making forced decisions. It’s certainly much easier for us (stressing we’re in this together) to explore all the long term care alternatives and I would be absolutely delighted to help you.
- Be very patient. Remember what a difficult topic (aging, illness, do not resuscitate, health care proxy’s, end of life plans) are.
- Expect that you’ll need to plan on more than one meeting/conversation. At first blush, end of life plans can sound like we’re losing something. The implication that a parent won’t be able to handle their affairs is frightening at best.
We recommend your approach should be one of problem solver . . . “I would like to help you explore some long term care planning to make sure you remain independent in spite of future health issues. I’ve done a lot of research that can be really helpful for all of us. When can we discuss it?
Facing their “senior years, mobileWOMEN have a daunting challenge. That is to make sure they’ve arranged for their own care as well as being able to make eldercare recommendations to their parents.
Doing a google search for long term care issues, risks and solutions can be an overwhelming effort. Problem being, there’s literally millions of resources so finding current, reliable sources can be challenging. That’s why when we do long term care informational seminars for our employee benefit clients we provide the following resources:
The beginning of any discussion of long term care services, caregiving, long term care insurance, etc. should start with a long term care “plan”. You’ll want to share your “plan” with your family and trusted friends. “Planning” can be defined broadly to include financial and lifestyle issues, health care issues, prevention, all the way to end-of-life planning and last wishes. The essentials of planning can found http://longtermcare.gov/the-basics
The types of services available, choosing a provider etc. can be found at http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/home_care/asp
http://www.eldercare.gov/Eldercare?Public/network/arc.asp This site is a link to the Aging and Disability Resource Center (ADRC) to learn about resources on receiving care at home in your local community. There’s also a list of those 43 states that have ADRC’s to help find services and support for your at-home care needs.
This site http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/home_mod.asp describes the changes you can make to your home if you’re limited in your ability to function independently. Some examples are roll-in showers, grab bars, handrails, ramps etc. Tips to remodeling your home to make it better suited to your abilities can be located at http://www.aoa.dhhs.gov/eldfam/Housing/Home_Remodeling/Home_Remodeling.asp
You’ll want to explore assistive devices and technology to help you adapt at http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/assistive_tech.asp Many of the well researched government websites can be found at http://disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderld=140 This site includes links to Medicare, Medicaid & more.
Another site on home modifications with additional info on reverse mortgages, meals-on-wheels, etc. is located at http://www.hud.gov/groups/seniors.cfm For more detailed information on meal services at home and other at-home services double check http://www.hud.gov/groups/seniors.cfm
As we age and become less “spry”, we face the added risk of falling at home. Or falling on ice in the winter is a definite added risk in the northern climes. You’ll want to know how to shop for an emergency response system that’s right for your needs. For a list of “questions to ask” when looking for an Emergency Response System, go to http://www.ftc.gov/bcp/conline/pubs/services/pers.htm
Advancing age and diminishing physical capabilities may make it necessary to explore Assisted Living Facilities. Tips and checklists for choosing a facility can be found at http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/assisted_living.asp
When the need for care exceeds what can be provided at home or in an assisted living facility, then nursing homes will need to be explored. Key statistics from an overview perspective can be located at www.cdc.gov/nchs/fastats/nursingh.htm Other housing options and “housing – plus” should be reviewed at http://www.hud.gov/groups/seniors.cfm Lastly, you’ll want to focus on Medicare or Medicaid certified facilities which can be found at http://www.medicare.gov/NHCompare/
Here’s some additional sites you’ll want to know about that can be enormously beneficial to you that connect with Eldercare Locator www.eldercare.gov/Eldercare/Public/Home.asp This site provides a toll free line so you can speak directly to a specialist that can help with your eldercare needs.
http://www.medicare.gov/NHCompare/ and http://www.medicare.gov/HHCompare help you review and compare information on nursing homes and home care providers.
You’ll have questions along the way about the “M’s”, Medicaid and Medicare, which can be answered at http://www.cms.hhs.gov/MedicaidGenInfo/ and www.medicare.gov You’ll want to download the consumer booklet on “Medicare & You” at www.medicare.gov
Before you rush out to initiate a Reverse Mortgage to pay for any long term care expenses, we urge you to pay careful attention to http://www.ftc.gov/bcp/conline/pubs/homes/ and http://www.hud.gov/offices/hsg/sfh/hecm/rmtopten.cfm HECM’s (Home Equity Conversion Mortgages) are covered extensively at http://www.hud.gov/offices/hsg/sfh/hecm-df.cfm
We’ll all be facing the “end of the line” eventually. Some of us will die quietly in our sleep while others will go “more slowly”. Interestingly enough, it almost never happens the way we think it’ll happen. Regardless, if hospice becomes necessary, this is “uncharted territory” for most of us. That’s why it’s imperative we know where to research hospice when the time comes at http://www.eldercare.gov/eldercare/Public/resources/fact_sheets/hospice_care.asp
[Note: mobileWOMEN.org readers – for a copy of Tips on Conducting A Family Eldercare Meeting . . ., send an email request to email@example.com.]
Allan Checkoway, RHU
Allan Checkoway, RHU most recently authored “I’m Disabled . . . Now What?” , created for people whose lives have been impacted by changes in their overall health. Fortunately, our decades of experiences in working with people who have become disabled, sometimes ending up in long term care situations has given us a unique perspective that can benefit our readers. We’ve taken what we believe to be all the best up to date accessABLE resources from a multitude of resources, putting them all together in one place in “I’m Disabled . . . Now What?” and on our new website www.DisabilityandSeniorResources.com. We are dedicated to helping restore active lifestyles. Allan is presently the Principal of Disability Services Group, an Employee Benefit Advisory firm. Allan’s address is 661 Highland Ave. Suite 103, Needham, MA 02494, tel: 781.400.5055; email: firstname.lastname@example.org