Unfortunately, there is no elder care equivalent of “What to Expect When You’re Expecting,” or “What to Expect: The Toddler Years.” But you are not alone in the wilderness. This page features quick ideas or links to more information that is scattered about out there. And readers can contribute too! Just send your favorites via the Contact page for consideration.
Not every idea will work for all, care recipients are all different, and caregivers are all different; but something from either the experts or those in the trenches will make a difference—at least some of the time.
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Tip: 15 must-read books for caregivers from Care.com.
Few roles are more complex than that of a caregiver. Becoming a caregiver to an aging parent or a loved one often means being thrust into a role that requires a whole new set of skills, a wealth of emotional fortitude and the ability to juggle complicated needs related to health, finances, aging and well-being. While there’s no guide book that can tell you exactly how to manage this transition, there are books for caregivers that can help and support you on your journey. Check out the list here.
Tool: Aging Matters Podcast
I had the pleasure recently of joining Mary Lucas and Jason Kong on the Aging Matters radio show, a program of Life Transitions in Raleigh, NC. You can listen to it and other interviews on topics such as aging, hospice, caregiving, dementia, senior moves, and more. Find the feed here.
Tip: Hallucination or Vision Change?
When a person living with dementia acts in strange ways, we may assume they are hallucinating and the dementia is getting worse. But it’s more likely to be caused by field-of-vision changes. In this video, Teepa Snow explains what is happening.
Tool: Iris Waichler, MSW, LSCW, podcast with Micheal Pope on Life is a Sacred Journey
I enjoyed being a guest on Life is a Sacred Journey back in April (you can find the link on the media page of this website). I recommend you have a listen to her conversation with Iris Waichler, both a mental health professional and a caregiver herself, first for her mother and then her father. She talks about the importance of self-care and how to make time for yourself. View the podcast here.
Tool: Adria Thompson, certified dementia practitioner and consultant
I had the pleasure of attending a conference featuring Adria Thompson as keynoter. She has both professional and personal understanding of dementias. (Yes, there is more than one kind, with different manifestations.) Her website has some great videos. Check them out here.
Tip: Cleaning Out a Parent’s House
I recently found a helpful article about cleaning out a home, good for an elderly parent’s home, but also for your own: Twenty Quick Tips to Clean Out Your Elderly Parent’s Home. #19 is one of the hardest and my favorite: “Learn how to let go. Letting go of your parent’s things often feels like you’re letting go of a part of them. While this is easier said than done, take strides to learn to let go. This won’t be easy, but it is possible. Remember that your memories of this home and the belongings live on even if the things are no longer with you. For those belongings that are especially hard to say goodbye to, consider taking a photo.” For more, here is the article.
Tool: Senior Move Managers
Elderly parents downsizing or moving to progressive or assisted living? Check out the National Association of Senior Move Managers (www.NASMM.org). Read a first hand account on Your Stories on this website.
Tool: Legal and Estate Planning
The time is now to have plans in place for yourself and your loved ones. It will provide peace of mind and make everything easier as aging and decline come about. A good place to begin is see if your county has an Area Agency on Aging (AAA). They are a wealth of resources and programs. A great website for finding resources on aging in your state and county is www.HHS.gov/aging-resources. Five documents everyone should have are: Wills/trusts, Power of Attorney for Finances, Power of Attorney for Healthcare, Health Care Directive (Living Will), Beneficiary Designations. Look for your state’s forms online or with your AAA or consult an attorney (particularly one that specializes in elder law).
Tip: Hospital Delirium
Get familiar with hospital delirium, its symptoms and causes. Hospital staff may not be looking for it, so caregivers must be hyper-vigilant when their care receiver is hospitalized and after their return home. Jane Gross, in Bittersweet Season: Caring for Our Aging Parents—and Ourselves, writes that hospital delirium affects nearly one-third of hospital patients over seventy. “. . . they become unglued psychologically and/or cognitively; entering the hospital in what seems to be a fully intact state, only to become delirious while there.” It can be triggered by such things as medication errors, anesthesia, CT machines, or not having their hearing aids or glasses. Read this AARP article about it: Dealing with Delirium: Tips for Caregivers.
Tools (and Tips): Compassion Fatigue in Caregivers Ted-X Talk
(From reader, Jane W.) “Taking your elderly loved one to a neurologist to be tested is a step that can help. For me, it clarified what had become a tangle of incidents into a medical diagnosis we could learn more about and address.”
Tool: Finding Company on the Journey
There are many podcasts and Facebook groups for caregivers. Here are a few. Do you have favorites? Let us know by filling out the contact form here.
Look for these Facebook Caregiving Groups: Get in the Lifeboat, Slow Medicine, AARP Family Caregivers Discussion Group, Family Caregivers Support Group.
Tip: Spotting Elder Abuse
Elder abuse and neglect is common in the US, and learning to spot it in your loved one’s facility is critical. Learn what it is, what to watch for, how to tell willful neglect from lack of staffing, and report it when you see it. Remember, you can’t always rely on your loved one to get the facts right, one way or another, so watch for clues. Perhaps this site will help: NursingHomesAbuse.org.
Writing down your thoughts and feelings (preferably with a pen) on a regular basis has been proven to have a long list of mental and physical benefits, including reduced stress and depression, improved ability to withstand stress, infection, and disease, and improved sleep.
Here are 10 prompts helpful for caregivers from Daily Caring (and a link to 15 more). #1 is “List five good things about today.” Some days you might really have to think, but chances are they are they, however insignificant they seem.
You might also start a blog (I recommend a free WordPress account). It can be completely private (i.e. only visible to you), or you can share it with just a few friends and/or family, or make it discoverable by anyone.
Tip: Mild Cognitive Impairment vs Dementia
Not all forgetfulness is dementia. Healthy people experience a slow decline in cognitive abilities as a normal part of aging. Mild Cognitive Impairment (MCI) is a middle stage between the occasional forgetfulness of normal aging and the serious cognitive decline of dementia. Learn more about the differences among normal aging, MCI, and dementia on this helpful article from the award-winning Daily Caring website. Mild Cognitive Impairment: Not Dementia, But More Than Normal Forgetfulness
Tool and Tip for Caregiver Stress
There’s no doubt about it, caregiving is stressful. Period. Doing something about it can seem impossible. But we are no good to anyone if we don’t take care of ourselves first. Here is a quiz from AARP to find out what your stress level is. Stress varies from day-to-day; try taking the quiz every day for a week, based just on that day, then look at the overall picture. (Daily Caring, an AARP website, provides suggestions for stress as well. Not all will work for everyone, of course.)
In the moment of frustration, remember the Shuni Mudra (see below), the seal of patience. Tap your thumb and middle finger together to remind yourself to breathe rather than give in to an outburst.
“Entering into the logic of Alice in Dementia Land.” Nominated for best supportive actor in my years as a family caregiver, David Robinson—a geriatric care manager—saved my caregiver life. In this video, he shares common behaviors of those with dementia and suggestions for dealing with them. Specifically he refers to those with alzheimers, but though my mother’s cognitive dissonance was not at that level, it was critical information for my interactions with her. If you haven’t time for the full nine minutes, skip to minute 4.00 for specific suggestions for how to make your loved one feel safe and secure, the ultimate goal.
AARP Family Caregivers Discussion Group For those of you who are family caregivers: I’ve been participating as a caregiver ally on the AARP Facebook page “Family Caregivers Discussion Group.” How I wish I had known about it when I was in the midst. A place to vent and learn. I recommend it to you. Search for the group and fill out the form to be approved to join.
Stages of Dementia I’m a big fan of Teepa Snow, a dementia specialist. In this 12-minute video, she describes the stages of dementia as GEMS. There are many videos and podcasts of her very accessible tools for caregivers; GEMS is a good place to start.
Shuni Mudra: The Seal of Patience Tapping your middle finger and thumb together when patience has worn thin, reminds you to take a deep breath—a pause to calm yourself before you speak, or explode in frustration. Or time to decide not speaking at all is the best response.
Six tips that stop the unfair self-judgement that happens inside your head and help retrain your thoughts so you’ll treat yourself more kindly. (From DailyCaring.com)
Notice when you’re speaking negatively to yourself. (“I’m the worst daughter in the world.”)
Distract yourself yourself from negative thoughts. (Take a deep breath, redirect your thoughts.)
Avoid comparing yourself to others. (You’re probably comparing your worst moment with their best.)
Look at the big picture. (Pick your battles, do your best, let go of slip-ups.)
Talk to (or text with) other caregivers. (Everyone is doing their best, and everyone misses the goal.)
Keep a success journal. (What did you do well today?)
One of the first things to change when our cognitive abilities diminish is sense of taste and smell. Who knew? Nothing tasted right to my mother (plus she had digestive issues), so I was always on the lookout for food she would and could enjoy. Often that meant something new, so she couldn’t say it didn’t taste like it used to.
The Therapeutic Lie Sometimes it just serves no one to tell the truth, the whole truth, and nothing but the truth. Arguing the truth with someone with dementia is counter productive. Reassuring them that they are right, even if they aren’t, helps them save face. And saves caregiver sanity—although it can be maddening. If cognitive dysfunction is mild, keep the lie mild. “Yes, you have had this soup before; you liked it.” (Knowing your parent will refuse anything new.) If dementia is more serious, match it. “Well, I think maybe I do see a giraffe in the back yard.” Validate whenever you can. And it is not easy.