Caregiver Support

Caring for a loved one can be hard work. However, the National Family Caregivers Association says that people who recognize themselves as caregivers are more proactive, engaged and confident. As a result, they provide better care and are able to do so longer, even as their loved one's care needs increase. Caregivers who access and use support services also report fewer negative emotions, such as depression, anxiety and anger. By seeking and accepting help, along with planning for the future, you can provide the care your loved one deserves while also making sure your needs are taken care of.

Through the National Family Caregiver Support Program, your area agency on aging and other local providers are ready to assist you with supports that may include:

Training, resources, information and support groups;
Respite care, adult day and medical alert services;
Personal care, chore services and home delivered meals;
Yard work and home repairs;
Durable medical equipment and home modifications; and
More.

Contact the area agency on aging serving your community for information and referral, as well as a free in-person assessment to identify your needs and link you to available resources.

Are You a Caregiver?

Approximately 1.7 million Ohioans provide some level of care for a loved one who is older or who has a disability, according to AARP. You may be a caregiver if:

You feel like you've swapped roles with a parent, spouse or other family member.
You help someone with chores like cleaning, grocery shopping, cooking or transportation.
You help someone with daily activities, such as bathing, dressing and eating.
You help someone manage finances, file insurance claims or pay bills.
You skip meals or forgo exercise and the things you enjoy because someone needs you.

Brochure: 10 Questions That May Change Your Life (and the lives of the people in it)

Caregivers are spouses, children, grandchildren, grandparents, brothers, sisters, aunts, uncles, friends, neighbors and more. Approximately 60 percent of family caregivers are women, many of whom have their own families and jobs. In Ohio, family caregivers provide care that, if provided by paid caregivers, would cost $16.5 billion each year, according to AARP. More than three out of five workers have had to make some adjustment to their work life, from reporting late to giving up work entirely, to care for a loved one. Ten percent of family caregivers go from full-time to part-time jobs because of caregiving responsibilities.

Fact sheet: Whom Does Caregiving Affect?

Infographic: WHY Should You Support Working Caregivers?

The Successful Caregiver's Toolbox

Caregiving is unique to every family and every relationship. What works well for one family may not be appropriate for another. What one family member finds easy to do may be difficult or even impossible for another. However, there are some key skills virtually anyone can use to be more successful at caregiving. The successful caregiver's toolbox includes strategies to plan for the future, discuss needs and preferences and take care of yourself.

Planning
Communicating
Self-Care

Whether you are new to caregiving or have been a caregiver for years, you can benefit from having a plan. Too often, people don't think about what it will take to support an older loved one until there is a problem. No matter where you are in the caregiver's journey, it helps to take some time to consider where you are going and how you and your loved one want to get there.

Here is the information to gather and questions to ask to build the foundation of your plan:

Finances

Make a list of all accounts and where they are held.
Consolidate and simplify accounts where possible.
Review Social Security and veterans’ benefits.
Make sure all beneficiary designations are up-to-date.
Streamline bill paying.

Insurance

Make a list of all insurance policies and where they are located.
Review homeowners, auto and liability insurance to make sure they are adequate, appropriate and up to date.
Review health insurance coverage and consider whether it would be appropriate to add a Medigap policy to pay for costs not covered by Medicare.

Legal Documents

Do they have a will or an estate plan?
If so, does it reflect their current wishes (i.e., does it pass property to the correct people and have the correct people taking charge)?
Do they have an up-to-date durable power of attorney for finance?

Living Arrangements

Is their current housing situation suitable?
Do any changes, updates or modifications need to be made to the house?
Have they made contingency plans for illness, disability or death of a spouse?
Is there money available to pay for those contingencies (e.g., savings or long-term care insurance)?

Health

Make a list of their doctors, as well as any medications they are taking.
Do they have an up-to-date durable power of attorney for health care?
Does their durable power of attorney for health care contain a health-care directive that spells out their wishes for life-prolonging care?
Do they have an advance directive or living will?
Do they want a “Do not resuscitate” (DNR) order or a “Do not intubate” (DNI) order?

Every caregiving plan must be based on the wishes and consent of the people involved. Family members should never plan or intervene in the lives of their loved ones without their knowledge or consent. When you discuss planning with your older loved one, remember to start small and build slowly. When starting the conversation, remember TEMPO:

Timing - Make sure you and your loved one have plenty of time to talk without interruptions or concerns about being someplace else.
Experience – Tie the discussion to personal experience. For example: “Mom, I just finished working on my will. I was wondering when you last looked at your will?”
Motivation – Know why you want to have this conversation. Of course, you have your loved one’s best interests at heart, but your life and your family matter as well. Your loved one will appreciate you being truthful with them (and yourself) about why you want a plan.
Place – Hold your conversation in an environment where your loved one is comfortable, but that also has little noise and few distractions and interruptions.
Outcome – Focus on the conversation, not quick answers to your questions. In talking about caregiving, you want to lay the ground work for mutual respect and a willingness to share information and discuss feelings, wishes and needs.

If you find that your loved one is reluctant to talk about their care needs or situation, know that this is normal. Many people don’t like to think about needing help from others. Be persistent, but respectful. Try using examples from your life or people you both know. Find something that is important to them, such as choosing the care they prefer or activities they wouldn’t want to give up, and build from there.

It may also be helpful to involve someone else in the conversation that your loved one respects, such as a trusted friend or family member, clergy member or a professional, such as a doctor, attorney or financial advisor.

When you’re a caregiver, it can be easy to place the needs and preferences of your loved one before your own. But how can you care for others when your own needs are not being met? If you’ve ever flown on a commercial airline, you probably are familiar with the pre-flight instructions about unexpected changes in cabin pressure that advise you to put on your own oxygen mask before helping others with theirs.

If you have a loved one living with a chronic condition or disabling disease, illness or injury, you may experience another kind of pressure change: the one that comes with balancing caregiving duties with everyday life. Failing to do so can lead to stress and feelings of guilt that ultimately interfere with your ability to care for your loved one. We’re not saying you should put your own needs ahead of others’, but it is important to find and maintain balance.

Physical Health

Take care of your own physical health. Doing so will ensure that you have the strength and energy you need to provide for your loved ones.

Stay active and get plenty of exercise. While caregiving certain requires its fair share of physical activity, it’s important to devote 20-30 minutes every day to simple exercise that raises your heart rate. Walking or lifting dumbbells are effective exercises that require little preparation and are easy to fit into your caregiving responsibilities.
Eat well. The time and physical demands of caregiving can make it challenging to eat right. Pressed for time, you may be tempted to skip meals or rely on convenience foods that you can grab quickly and easily. Stay on a regular meal schedule and eat a variety of foods, including fresh fruits and vegetables to ensure you have the energy you need to make it through the day.
Don’t ignore your own health needs. See your health care professional regularly, and especially if you are sick or injured. Keep up on maintenance medications and take time for recovery, as your provider recommends. Have a plan for who can take care of your loved one if you need to take time to care for yourself.

Stress

We often experience stress in our day-to-day lives, but being a caregiver can add greatly to that stress. Caregivers often feel like they’re being pulled in many directions and that they can’t do all the things they feel they need to do, let alone the things they want to do. You won’t be able to fully eliminate stress, but you can keep it at manageable levels.

Prioritize needs. If you feel like you can’t do everything expected of you, take time to determine which tasks are the most important and focus on them first. Seek help with lower-priority items, and give yourself permission to let them go.
Take a break every day. Give yourself at least 10-20 minutes of “me time” every day. Read a book, play a game, check social media, listen to music or talk to a friend. Don’t allow yourself to be distracted or interrupted – you deserve this time.
Reward yourself occasionally. Don’t underestimate the power of an occasional indulgence. Buy yourself some flowers, have an ice cream cone or buy a new outfit. Whatever makes you feel happy.
Keep friendships and build new ones. It can be easy to put your social life on hold as a caregiver. Take the time to maintain friendships and foster new ones so that you have a support network when you need it. You may be surprised at how willing your friends can be to help.
Deal with difficult situations. Things will get tough from time to time. When you’re in the moment, your attention and energy will be focused on making it through. However, once the situation is over, it helps to take time to think about and learn from the experience. Decide what you can do to avoid the situation in the future or handle it better.

Guilt

Caregiving often comes with a range of emotions, but guilt can often be the toughest one to deal with. You may feel guilty that you can’t be there for your loved one as much as you believe they need or want you to be. You may feel guilty about tending to your own needs when your loved one wants your help. You may feel guilty about making others depend on themselves more so that you can focus on caregiving. Whatever the reasons, you can help yourself feel a little less guilty with these tips.

Give yourself permission to be imperfect. Few caregivers can do everything they think they need to do. Do your best and accept that your best will do.
Forgive yourself in advance. You will be unable to do everything you feel you should do. You will make mistakes. You will get angry. You will get frustrated. You will feel like giving up. Accept that you will sometimes fall short of your own expectations, forgive yourself and keep moving forward.
Understand the source of your guilt. Is it internal (you feel like you could have done better) or external (others tell you that you should have done more)? Force yourself to be objective and know why you feel guilty. Then you can put emotions in check and deal with the root cause.

Dementia 101

Dementia is a medical condition that significantly impacts an individual's ability to think independently and apply reason to common situations. Symptoms can include short-term memory changes, confusion, difficulty finding the right words to express oneself, changes in mood, loss of interest in things someone once enjoyed, difficulty completing normal tasks and repeating tasks.

Dementia is a degenerative brain disease and currently has no cure, though medications may offer moderate relief of symptoms early in the disease. However, several medical conditions common in older adults that can cause short-term memory loss and confusion that may look like dementia, but that can be treated. These include urinary tract infection, vitamin B and B12 deficiencies, dehydration, malnutrition, anesthesia, stress, depression, medication and lack of sleep.

While we do not yet know exactly what causes dementia, the most common risk factors, according to the National Institute on Aging, are: age, alcohol use, diabetes, down syndrome, genetics, high blood pressure, clogged arteries, mental illness and smoking.

Alzheimer’s Disease is perhaps the most well-known type of dementia, but there are other types, including vascular dementia, Lewy body dementia, frontotemporal dementia, Wernicke-Korsakoff Syndrome and Huntington’s disease. Because each type is different getting the correct diagnosis is key to understanding how your loved one’s dementia will progress. Knowing what to expect will make caregiving easier and more fulfilling.

Dementia Caregiving
Myths
Early Symptoms

The key to providing care for a person with dementia is to understand that they see the world differently than you do, and the world they see is real to them. This can sometimes make communicating with them somewhat challenging. However, it can be easier when you keep it positive.

Always treat adults as adults.
Face them and make eye contact. Avoid trying to have conversations in loud places or with distractions such as crowds or the TV.
Try to keep TV viewing and other entertainment light and upbeat. People with dementia can sometimes get confused between reality and what they see on TV.
Speak slowly and clearly, using one question or statement at a time.
Answer questions starting with a positive, such as “yes!” and then redirect. For example, when your loved one thinks you are someone else, try gentle redirection such as “I haven’t seen ‘Joe,’ but I’m here, I’m ‘Mary.’”
Use positive language. Instead of phrases like “Don’t go there,” try “Let’s go here.”
Avoid challenging or closed-ended questions. Instead of saying “Don’t you know where you are?” ask, “Can I help you with something?”
Avoid asking or telling them to remember something. That may trigger an aggressive response.
If you need to walk away from a stressful situation with your loved one, do so. Separation will calm you down, which, in turn, will to the same for them.

Someone with dementia sees the world differently. As a caregiver, you can help create an environment that is both comfortable and comforting, and protects your loved one from common hazards. Since dementia can affect vision, adding contrast to the environment will help your loved one get around and identify things around the house. For example, use a brightly colored seat on a white toilet, or use different color dishes and silverware. However, keep in mind that rugs and patterns in carpets or tile that are in contrasting colors may cause your loved one to misidentify them as holes or steps.

MYTH: Dementia will eventually become Alzheimer’s disease.

REALITY: The term dementia is very broad and simply refers to brain failure that is happening as the result of an underlying disease. While 60-80 percent of those living with dementia have Alzheimer’s disease, there are other causes of dementia that will not necessarily progress into Alzheimer’s symptoms.

MYTH: My grandma had dementia, so I will get it, too.

REALITY: Although having a family history of dementia slightly raises an individual’s risk of developing the disease, the most significant risk factor is age. According to the Alzheimer’s Association, one in nine people age 65 have Alzheimer’s disease, but that increases to one in three after age 85.

MYTH: Dementia can be caused by things I eat or am exposed to.

REALITY: Maintaining a healthy diet and exercise routine is important for your brain, as well as your body. However, be skeptical of claims that a specific food or nutrient is a significant cause of dementia.

MYTH: My loved one’s behaviors, such as wandering and agitation, are caused by the disease.

REALITY: Dementia changes how a person understands and responds to the world around them. However, a lot of behaviors common to dementia are triggered by something in the environment, such as body language, obstacles, contrast and more. Like others, they respond to what’s around them, but because of their dementia, their responses may not be what you expect.

MYTH: I must stop someone with dementia from wandering.

TRUTH: When safety is not a concern, it may be best to allow your loved one to wander. Instead of stopping them or trying to redirect them, ask them what or who they’re looking for. This can give you some insight into their reality and builds trust.

The Alzheimer's Association offers 10 early signs and symptoms of Alzheimer's disease and recomend that you schedule an appointment with your or your loved one's doctor if you recognize any of them. They include:

Alzheimer's Disease: 10 Early Signs and Symptoms

Memory loss that disrupts daily life
Challenges in planning or solving problems
Difficulty with familiar tasks at home, work or leisure
Confusion with time or place
Trouble understanding visual images and spatial relationships
New problems with words in speaking or writing
Misplacing things and losing the ability to retrace steps
Decreased or poor judgement
Withdrawal from work or social activities
Changes in mood or personality

Kinship Care

Grandparents and other relatives sometimes become the primary caregiver for children when their parents are unable or unavailable to do so.

Caregiving has many faces in Ohio, and includes situations in which grandparents or other relatives or friends become primary caregivers for children when their parents are unable or unavailable to do so. These arrangements can be temporary, but often are permanent. In a system that typically favors the immediate family, these "extended" families often face unique challenges.

Find resources at the State of Ohio's Foster, Adoption, and Kinship Care website.

Assistive Technology of Ohio is a federally funded nonprofit organization that is part of the College of Engineering at The Ohio State University. AT Ohio helps Ohioans of all ages remain independent as their physical abilities change. Their services include device lending and rental, computer refurbishing, training and more. Devices that can help older adults remain safely and independent in their homes include: Low hearing and vision aides, medication reminder systems, communication devices, dining assistance devices, home automation equipment and more. Call 1-800-784-3425 to learn more.

Caregiving - Curated tweets by OhioDeptOfAging