The I.R.S. of Caregiving: Information, Respite, and Support

By Donna Schempp, LCSW

The first stages of caregiving are the most challenging. This is when you are least informed about what’s needed and expected, and when you feel the most insecure and uncertain. In addition to information about the disease/disability your loved one is dealing with, you need to understand his or her medications and medical interventions. 

1. What knowledge/skills will you need to be able to care for him or her?
2. Where can you get trained to do the tasks required? How can you learn to successfully:
   • Feed, bathe, groom, or dress someone?
   • Handle toileting or deal with incontinence?
   • Handle a complicated medication schedule?
   • Transfer someone or help them walk?
3. How does this disease progress and how will that affect the care receiver’s ability to take care of him or herself?
4. What are the care needs now and what are they likely to be in the future?
5. What are the physical limitations that the care-receiver has now or will have?
6. What are the cognitive changes you can expect?
   1. Are there predictable behavioral changes that go along with them?
   2. How do I handle these changes?
      If you are caring for someone with dementia, for instance, you need to learn the strategies for communication that will make you more successful and increase cooperation.
7. What is the financial situation?
   1. How much money is available to help with care?
   2. Who can access it (is there a Financial Power of Attorney in place)?
   3. Are there debts or other constraints on using the money?
8. What legal matters should you know about?
   • Is there a Will? A Trust?
   • Has the Medical Power of Attorney been completed (also called Living Will)?
   • Do you have a Release of Information signed and filed with the care receiver’s doctor(s)?

You might not be aware of community caregiving resources, but they are there to help you. You can find help in most communities for transportation, home-delivered meals, daycare programs, home repairs, and more. To learn about them, contact your local Area Agency on Aging (AAA) and find out what’s available locally—not only for your loved one but also for yourself. (In many communities, AAAs can be reached by dialing 211). There may be benefits that you haven’t thought about—ask about Title IIIE funding, part of the Older Americans Act specifically for caregivers. There may be Veterans benefits. Other benefits can be found at Eldercare Locator, or FCA’s Family Care Navigator.

RESPITE

Caregiving is often a 24/7 job, and everyone needs a break sometimes. Getting away can give you perspective and remind you that there’s a world outside. Taking a respite break from caregiving can give you a chance to connect with others, share, laugh, catch up, renew. But it can also be a time for just doing things that are relaxing for you, such as reading a book without interruption, taking a nap, or going for a walk. This break is a necessary step in taking care of yourself so that you can care for someone else.

Respite can take many forms, from going away on a mini-vacation, to having someone in your home for a few hours so you can run errands or get to the doctor yourself. A local adult day care program may offer enough hours of care—including transportation—so that you can go to work or attend to your other needs and interests. Some residential facilities also offer temporary respite. There may be funds available through your Area Agency on Aging as well as organizations in your community that can help you to get the break you need (also available through the Veteran’s Administration for those eligible). Faith communities, disease-specific organizations and your network of friends might be able to help.

At first, it may not feel easy to take a respite break. First, there is our own internal reluctance to leave a loved one, particularly if he or she feels abandoned if you leave. Or there is the fear that something will happen while you’re away and only you know how to care for him or her correctly. You might feel guilty and not be sure you have the right to have a good time if your loved one is suffering. You may be concerned about the cost. But remember, you must care for yourself, too.

SUPPORT

You can’t do it alone! And, like respite, getting support for your caregiving situation will help you take better care of yourself. The longer you are a caregiver, the more isolated you can become. How many times can you say, “I can’t get together with you” before people stop calling? But this lack of social interaction will lead to poorer health for you. One reason caregivers don’t get the help they need is that taking care of yourself feels like just “one more thing you have to do.”

But we all need someone to talk to. Special caregiver support groups in your community or online can help to reduce the feeling that you’re all alone and help you learn coping skills from others who are in similar situations.

Adding stress to an already difficult situation, caregiving can also create family discord, particularly if you feel you’re not getting the help and support you need from members of your own family. Resentment can build on all sides. If you are dealing with family conflict, it might help to have a meeting. 

Asking for Help

Most of us find it hard to ask for help. About 50% of caregivers get no outside help at all. When someone asks if there’s anything they can do to help, most of us usually say, “Oh no, that’s OK, we’re doing fine.” When you’re a caregiver, it can be even harder. Whom can you call and what can you ask them to do? Learning to accept help early in your transition to being a caregiver will make it easier down the road.

Little things on a regular basis can mean a lot. Maybe someone would bring an occasional meal or dessert. Having someone help with household chores can be an opportunity to socialize as well as get things done. Maybe someone can just come and sit with your loved one so you can run to the grocery store. Make a list of things that you need help with. Post it on the refrigerator. If someone asks to help, show them the list and let them pick something they’d like to do. That way they’re more likely to enjoy the task. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal prep instead of a ride to an appointment.

Taking Care of YOU

Caregiving has many challenges and also many rewards. But you need to honor your own needs as well as commit to caring for someone else. That’s the only way you will be able to sustain your patience and your caring and be successful over time. There are many things to learn and most caregivers are just “making it up” as they go along. Getting information and training will help you feel confident about the many tasks you perform. Information is available online, at disease-specific websites, at Family Caregiver Alliance, through your medical providers, Area Agencies on Aging, some employee assistance programs, support groups, senior centers, and your community. Start by saying “I am a caregiver and I need help.”