Q. I am a caregiver for my husband, Ed, who has had Parkinson’s disease for fifteen years. While fully coherent, his physical capabilities have been greatly reduced. Confined mainly to a wheelchair, he requires my help to dress, shower, toilet, walk, and exercise, and has trouble communicating and swallowing food.
Normal routine has set in, but unforeseen circumstances can sometimes occur. Although I take vitamins and exercise regularly, sometimes I wonder: What if I fell and broke my leg, and my husband and I were both immobile? What if I got Alzheimer’s and no longer had my wits about me? Last year, I had the flu for a week during a time when our respite care worker was unavailable, and my daughter left her own family and took a costly emergency flight from California to help. We can’t expect her to do that every time.
Do you have any suggestions for a caregiver, for when they fall ill themselves and can’t perform their duties?
A. Caregiving brings up a lot of difficult emotions. Not surprisingly, the high stress of caregiving (often called “caregiver burnout”) greatly increases the likelihood of serious health problems in the caregiver.
A recent survey conducted by the UCLA Center for Health Policy Research found that nearly a third of the estimated 3 million-plus informal caregivers in California reported emotional stress so severe it disrupted their lives. The same study found that nearly 75% of the middle-age caregivers were overweight or obese, and a proportion of them already have chronic health problems: Nearly 10% have diabetes; more than 6% have heart disease; more than 34% have hypertension. These caregivers will likely need their own caregivers if their health deteriorates.
In addition, if a caregiver is experiencing chronic emotional stress, it can affect virtually every organ system in negative ways, according to NIH. Prolonged stress has been shown to cause numerous health problems, such as high blood pressure, panic attacks, backaches, sleep disorders, and more.
So if you’re a caregiver, it’s very important to keep a close watch on your health, both physical and emotional. The strategies below should help make caregiving easier and less stressful, so you are less likely to fall ill yourself:
- List your tasks — and get help when you need it: Get it all down on paper so you can clearly see the big picture. Then, don’t be ashamed or afraid to ask for help with specific tasks from a sibling, a neighbor, or someone in your church, synagogue, or mosque, or from a respite care professional.
- Put yourself on the to–do list: Your own health can suffer when you cut corners on your own self-care practices to make time for all the other things you’re trying to juggle. Therefore, you need to put self-care — such as exercising or meditation — on your list and treat it like any other important appointment. If you don’t know how to meditate, please click here for an excellent free e-book that will quickly explain the benefits of meditation, and quickly teach you with several different meditation techniques.
- Sign up for respite care — and use it: Every once in a while, you will need a few hours, a few days, a week— to decompress. That’s where respite care is invaluable, whether it means another relative who steps in temporarily, a professional aide who comes into the home for a brief time, or a geriatric care facility that’s set up for short stays.
- Take mini-breaks during the day: Don’t wait for respite care to give yourself a breather. Building a few 10-minute breaks into your day can work wonders. Use the time to meditate, listen to music, or take a quick walk (even if it’s just around the house).
- Find someone to talk to, when needed: Talking about your situation to a listening ear can relieve an enormous amount of pressure. Vent to a friend. Talk to a therapist. Even better, join a support group so you can connect with others in your same position. You can find Internet-based groups through ElderCare Online’s Caregiver Support Network and the Caregiver Action Network.
- Strengthen your relationships: Hard conversations (and decisions) go easier when adult children, parents, and siblings feel like they’re on the same page. When bolstering those relationships, include frank discussions about caregiving and end-of-life wishes, so you don’t have to embark on them during an emergency. Make sure your loved ones have indicated their wishes in their estate planning documents.
Although you may be taking preventative measures, such as eating right, exercising, and meditating, you never know when there will be a challenge, such as an illness. Therefore, it is wise to be prepared in advance.
In case you get sick, be prepared:
- Keep a two-week supply of medications in proper containers to correspond with times of day for dispensing.
- Prepare a list of responsibilities by time of day so that someone taking your place will know what is required.
- Don’t be afraid to call emergency medical personnel if you are really in trouble and isolated
- Keep extra meals in your freezer to cover several days and keep handy the names of restaurants that deliver.
- Prepare a list of the contact information of people to call for help, beginning with those who might stay the longest, including others who could offer even an hour or two. Be sure to discuss this plan with the people on your list and make them familiar with your needs.
- Make long-term plans for your loved one, should you become seriously ill or worse.
- Make sure you have your medical records and those of your loved one updated and easily available.
- Work with an experienced elder law attorney (preferably a Certified Elder Law Attorney such as myself) to ensure that the Incapacity Planning documents, such as an Advance Medical Directive and Financial Power of Attorney, are in place.
- Consider Medicaid Asset Protection using our Living Trust Plus™ Medicaid Asset Protection Trust so that if something happens to you, and your loved one suddenly needs nursing home care, at least your loved one will not have to go broke paying privately for nursing home care.
Caregivers: Take Care of Yourself
At Farr Law Firm, P.C., we recognize that caring for a loved one strains even the most resilient people. We commend all you caregivers — strong, courageous, and committed to providing long-term patient care. We hope you take advantage of services that offer respite and support.
Remember, part of taking care of yourself is planning for your own future and as well as for the future care needs of your loved one. To make an appointment for a consultation, please contact us.
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
