Q. I am new to caregiving. And, when I say new, I mean completely new. I am a workaholic who is divorced and doesn’t have children, and never even had a pet. I am very close with my mother, who I speak with on the phone daily.
Recently, I got some troubling news about mom — that she’s been diagnosed with Alzheimer’s. She’s in the early stages right now, so she is still very much the person I have always known and loved. I’m her only child and my dad died years ago, so I’m all she has. She asked if I could move in with her to help her out. Of course I said yes. Unfortunately, I will have to be a long-distance caregiver for the first six months, since I am currently under contract with my job and cannot telecommute. Then, I will become a freelance consultant and will hopefully be able to juggle work and caregiving.
Since I am so new at this, can you offer any tips for long distance caregiving, and tips for when I move in and care for someone with Alzheimer’s? Thanks in advance for your help!
A. Family members provide 80% of the long-term care in the US, and the need for assistance and education is great—and growing. Similar to many people with a senior parent, most of us are not completely prepared for what caregiving entails, or the tough reality of a loved one’s age-related decline.
Sure, we all know our loved ones are growing older, but we don’t always face up to all the implications. Below are some of the many lessons experienced caregivers have learned, from their ongoing experiences as caregivers, and the difficulties faced (and ultimately overcome) along the way:
-If you are a long-distance caregiver, include local people on your caregiving team. Amy Goyer, author of Juggling Life, Work and Caregiving, describes how her paternal grandparents lived far away, without any other family members nearby. Her family had to manage their care via phone and intermittent in-person visits. They relied on the area agency on aging, home care providers, church members, her grandmother’s hairstylist, and other service providers and neighbors, to keep up with what is happening with her grandparents when she and her immediate family couldn’t be there in person.
-When you move in with your loved one, make local connections. Carlen Maddux, author of A Path Revealed, was a caregiver for his wife with Alzheimer’s, until she passed away a few years ago. He describes how caregiving can be isolating and caregivers often feel as if they are all alone. He stresses the need to make connections wherever you can, and suggests finding support (and counseling, if available) through your religious community.
-Keep the love connection going. Joan Lunden, TV personality and author of Chicken Soup for the Soul- Family Caregivers, stresses the importance of telling your loved one that you love them as much as possible! James Ashley agrees that the love connection will help your loved one to thrive. Show your love with hugs, kisses, and by simply talking to them. For loved ones with Alzheimer’s, remind them of their past, show them pictures from their lives, and help them to experience moments of happiness.
-Finding yourself a qualified senior advocate can help save time and stress. James Ashley, an Alzheimer’s caregiver, stresses the valuable resources a senior advocate can provide that you may not have known about otherwise. A reputable senior referral service, such as your local Area Agency on Aging, or A Place for Mom, can help you with things such as determining the needs and desires of your loved one, and/or find the right living arrangement for him or her.
-Forgive and seek forgiveness. Dr. Alexis Abramson, author of The Ultimate Caregiver, urges family caregivers to forgive a parent who may have been uncaring or abusive in the past, even if you feel he or she may not deserve it. Try your best not to hold grudges, as it will surely affect your ability to care for your parent, and it will also hurt you.
–Take care of yourself first. Feylyn Lewis, a caregiver, believes that self care is something that everyone tells caregivers to do, but for most caregivers, they just don’t have the time. She stresses that it can be a real challenge, so caregivers should be sure to give themselves a break and to avoid being over-critical and feeling guilty when they simply can’t do it all. Her advice is to prioritize tasks and give yourself permission to not do it all!
-Keeping a journal is good for emotional well-being. Carlen Maddux believes that keeping a journal helps caregivers keep track of research and information, and can also be used to vent and track a caregiver’s emotional journey. After his wife passed away, going through his journal became an important part of his grieving process.
–Face the Facts. Dr. Alexis Abramson stresses that even if a family member wants to offer the help, sometimes an aging loved one needs round-the-clock care and constant supervision that a caregiver can’t provide. When that happens, caregivers should acknowledge that someone (or some place) may be better equipped for a loved one, and accept that that is okay.
Seek financial aid and advice. Carlen Maddux acknowledges that caregiving takes a huge financial toll on people in all economic situations and families of all backgrounds. Many of us who can’t afford to care for our loved ones around the clock. In addition to looking for subsidized programs, he encourages family caregivers to invest in an experienced elder care lawyer. His elder law attorney helped his family through the Medicaid process to pay for nursing home care, and he admits that they’d be broke if they tried to do it themselves. He insists that caregivers should NOT let caregiving destroy their financial well-being.
Continually reassess and monitor your loved one’s situation. Amy Goyer conveys that long-distance caregivers should ask those who are local to keep an eye out for red flags, such as mail piling up outside, a dangerously messy or cluttered house, less attention to personal care, repeated falling, or loneliness and isolation. If needed, be sure to make adjustments to your caregiving plan, and increase support, when the time is right to do so.
-Get your Parents Involved in Eldercare and End of Life Planning Gail Sheehy, bestselling author of 16 books, including Passages in Caregiving: Turning Chaos into Confidence discusses the importance of knowing your loved ones wishes as part of end-of life planning. Be sure to meet with an experienced elder law attorney while your loved one is still competent, to plan for when he or she may need more help.
As you can see from the advice above, caregiving for a loved one can be rewarding, and both emotionally and mentally taxing. While caregiving is not always without joy, it is also never without sacrifice. For many, caregiving takes a toll on emotional well-being, physical health, careers, and quality of life. There is also a lack of support and training for caregivers (although resources do exist). Please be sure to take care of yourself and take advantage of services that offer respite and support.
At the Farr Law Firm, we recognize that caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being. Part of taking care of yourself is planning for your future and for your loved ones. Please call us to make an appointment for an initial consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
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About Evan H Farr, CELA, CAP
