Your Must Knows


Your Must Knows

list-820965_640When you begin to care for a family member or friend, you find yourself in a completely foreign land. And, it feels like you immediately need to know how to speak the language in this land.

But, how can you? You didn't expect to be here, you didn't receive training on how to manage here and you certainly didn't receive a map once you arrived. (The Caregiving Years, Six Stages to a Meaningful Journey maps out how to manage today and prepare for tomorrow.)

We've compiled some must-know tips to help. We'll continue to update and add to our list. And, please be sure to add your must-know tips in our comments section, below.

1. Medicare is not Medicaid and vice versa. Medicare, the federal insurance program typically for person’s 65 and over, has very limited benefits to cover long-term care needs, either in a home or in a nursing home. Medicaid, a state-funded program typically for low-income persons, pays for the costs of in-home and nursing home care–as long as a caree’s income is low enough to qualify for benefits.

2. Caregiving will cost you. According to a report, half of surveyed family caregivers spend more than $5,000 per year on caregiving expenses. According to Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update from AARP, the average family caregiver for someone 50 years or older spent $5,531 per year on out-of-pocket caregiving expenses in 2007.

For the most recent data on costs of nursing homes, assisted living facilities, home health agencies and adult day programs, check Genworth's 2015 Cost of Care Survey.

3. You can appeal decisions that discontinue Medicare coverage in a nursing home or hospital or home health. The nursing home, hospital or home health agency will provide you with information on how to appeal. If they don't, ask.

4. Watch how health care professionals provide care to your caree. Before a hospital discharge, tape any training the professionals provide to you. Tape the training at home when a home health aide provides care. And, always makes sure a health care professional washes his/her hands and wear gloves whenever he or she provides care.

5. Check and then double check information you receive. Sometimes, health care professionals share correct information. Sometimes, they don't. It's worth the phone calls to make sure you have the right details.

6. Know the good home health agencies, nursing homes, adult day centers and assisted living facilities in your community (and your caree's if you live in different areas). You may need these providers for short-term help (like recovery after a caree's broken hip after a fall) or respite care (so you can take a break) or long-term (when care at home becomes too difficult). Ask your caree's doctor which providers he/she uses, ask friends for their recommendations. Be in the know because you just never know.

7. Check Medicare-certified providers at Medicare's 5-Star Rating website. Medicare rates the quality of care provided by hospitals, home health agencies, nursing homes, dialysis centers, health and drug programs, and equipment suppliers. Their data can help you make the best decision possible.

8. Research the impact of transferring your caree's assets, including the home, so that you do not incur penalties or jeopardize Medicaid benefits.

9. If you are a caregiving adult child living with your caree in your caree's home, your caree could transfer the home to you without jeopardizing Medicaid benefits. Check with an elderlaw attorney to learn more.

10. If you care for a spouse, know that some assets must be protected for you through the Spousal Impoverish program.

11. Hospitals have ethics committees which can help you if you face a tough decision if your family can't agree on a decision.

12. Watch the caregiving budget, taking into account care needs and the reality of your caree remaining at home. It's easier to find a good nursing home when your caree can pay privately for at least one year. It's really tough to find a good facility that has availability when your caree is on Medicaid.

13. Always ask if a nursing home or assisted living facility accepts Medicaid. If your caree moves to a facility that doesn't accept Medicaid and your caree runs out of money, your caree will have to move. You'll want to avoid a move as much as possible.

14. The best day to look for support is on a good day and early in your caregiving experience. When you create your support on a good day, it will be there for you on a bad day. And, there's nothing worse than trying to drive to a new support group or decide to start a blog on a day when you are too stressed to think clearly. You'll need support. Find it and nurture it on your good days. Use it on your difficult ones.

15. Prepare for the long haul--caregiving lasts longer than you'll imagine or expect.

16. Own it. If you silently hope someone else will say the hard words, make the difficult decisions, take the awful actions, then you'll waste time that could lead to chaos. Others will follow your silent lead, which means no one else  will say the hard words, make the difficult decisions, take the awful actions. It's terrible that it falls on you. But, you can make the situation a little better by saying, making and taking. Take the deep breath and do it.

17. If your caree is over 60 years of age, call your local Area Agency on Aging (find yours at to find out about programs and services which may help both of you. You also can search for help at and

18. If you care for a veteran, check or call 1-855-260-3274 about programs and services to help you.

19. If you care for a family member with dementia, call the Alzheimer's Association 24-hour hot line at 1-800-272-3900 for support and help.

20. If you work, check with your employer about an Employee Assistance Program, which may have programs and services to help.

21. The Family Medical Leave Act allows you to take up to 12 weeks unpaid time off each year for specified family and medical reasons. You can take 12 weeks at once or split up the unpaid leave over days, weeks or months.

22. Find the disease specific organizations and associations (like the Alzheimer's Association, American Stroke Association, Michael J. Fox Foundation) to connect to support and help for both you and your caree.

23. You will struggle to find help, to be understood and to feel like you belong. It's an awful struggle. As much as you can, avoid taking it personally. Let it hurt, then move on. Moving on will help you climb out of the struggle. You will find help, you are understood and you do belong.

24. Document your caree's needs, doctor's appointments, medications, medical conditions in a spreadsheet. You'll be able to search the spreadsheet when you need to know when your caree started a certain med, for instance, or the reason for the last hospitalization.

25. Understand end-of-life so you'll understand what's happening during your caree's end of life. National Institutes of Health has helpful end-of-life guide.

You'll find more resources, insights and suggestion in The Caregiving Years, Six Stages to a Meaningful Journey.

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<a href='' rel=\"nofollow\"><a href='' rel=\"nofollow\">@denise</a></a>, great list. Only thing I would add is know the [inside] appeal process for your health insurance plan and know that if you go through the inside appeal process and they still deny you, you can file an external appeal with the agency that regulates or oversees your plan. (So, in my case it would be the CT Dept of Insurance). Have handy the contact information for your state's patient advocate office. (In CT it's the State of Connecticut Office of the Healthcare Advocate.) They can guide you through the appeal process (and help with other insurance-related issues) and it's a free service.


What an incredibly useful list. Sure wish I had this years ago, but it is still useful for us... we aren't getting any younger here!