The ‘IRS of Caregiving’: Information, Respite, and Support
Some materials reprinted with permission from Caregiving101.com, a leading source of information and help for family caregivers, offers an extensive library of articles available for free.
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 all that will be required for proper care at home.
• How can you learn to safely:
◦ Feed, bathe, groom, or dress someone?
◦ Handle toileting or deal with incontinence?
◦ Handle a complicated medication schedule?
◦ Transfer someone, or help him or her walk?
• What are the physical limitations that the care receiver has now or will have?
• What are the cognitive changes you can expect?
◦ Are there predictable behavioral changes that go along with them?
◦ 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.
• What is the financial situation?
◦ How much money is available to help with care?
◦ Who can access it (is there a Financial Power of Attorney in place)?
◦ Are there debts or other constraints on using the money?
• What legal matters should you know about?
◦ Is there a Will? A Trust? A Medical Power of Attorney?
◦ Do you have a Release of Information filed with doctor(s)?
There may be benefits that you haven’t thought about that can help pay for home care assistance—Medicaid, Veteran’s Benefits and Long Term Care insurance may pay for “home care,” that helps you help your loved one with ADL’s (Activities of Daily Living); they include meals, personal care - including bathing, toileting, and dressing; medication reminders; transfer assistance; and respite for yourself. If none of these benefit “payers” apply, you and your family may need to pay privately for home care help.
Through these benefits or private pay, affordable help is available from a few hours a week to 24/7 care by local home care agencies like Visiting Angels, a company that helps seniors and disabled adults continue to live safely at home.
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.
David Forman, President of Visiting Angels says, “Our Angels can help your loved one prepare for the day with personal care, dressing and meals. Many of our care recipients spend time at day care, and our Angels prepare them for the bus or drive them to the center; many also are met after day care, and spend time through the early evening until a working family caregiver returns home. Those who choose not to attend day care, or are not physically able to get to day care are attended to at home by compassionate, experienced and professionally trained care givers."
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.
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.”
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. (See Family Caregiver Alliance). Forman advises family members to decide who can help physically and who can help financially and work out some mutually acceptable arrangement.
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?