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Caregivers are some of the unsung heroes of our society. They spend time taking care of elderly relatives in addition to, or sometimes instead of, living their own lives. Having a caregiver in the family, an elder doesn’t need to spend as much money to get the help he needs. He stays at home and is happier than he might be at a nursing home. Because caregivers do all this privately, nobody notices much. But caregivers need care too.
The caregiver life
Caregiving is not an all-or-nothing situation. A daughter who lives nearby and checks in on her mother, takes her to appointments, and watches for problems is a caregiver. A wife who retires early to stay home and watch out for an ailing husband full-time is a caregiver. And there are lots of other examples.
The caregiver life is not easy. Being on call for a loved one, whether you’re in the home or not, brings on stress. Somebody needs to do this, and you’re it. If you mess up. your loved one suffers. If you don’t do such-and-so, disaster awaits. What if she falls and you can’t pick her up? If he takes a turn for the worse, will you react in time? More and more stress.
Caregivers need care too
If you are a caregiver, think about this. Your being there and doing what you do is important. If you break down or can’t do it any more, who will? So it’s essential that you take care of yourself so you can take care of your loved one.
A dear friend spent years taking care of her husband after an industrial accident left him severely disabled. He had things he could do, and could get around some, but his special needs kept her from working outside the home.
My friend got very good at working around his needs and meeting enough of her own to keep going. A social butterfly, she managed to supply her church with foods for events, hold an annual supper at her home, and serve as a reader in church. She also hosted craft night every month until her husband’s condition worsened.
Sounds great? No, because she worried constantly. The trips to the specialists meant three-hour drives each way. He had pain medications that could be dangerous. He developed medical issues much more often than non-disabled people do, and he got moody and resistant at times. So as much as she loved doing for others and fulfilling her social obligations, sometimes she had to drop everything for him. It set up conflicts that hurt her, even though she had clear priorities.
You have needs too. If you can go out for a couple of hours to do the grocery shopping, that’s good. Then you can also go to your medical appointments or a social event. But if you need someone to be there when you go out, find a couple of people you can rely on and schedule accordingly.
Or you may be able to get some in-house help for your loved one. It could be physical therapy after a hospitalization. Make a plan to get some alone time when the PT is there. Have a friend who is good at caregiving? Maybe they would look in while you pop out.
In some states there are workers available to come in to keep your loved one safe while you go out. And you can hire private care workers if you do not qualify for any free or low-cost help offered in your state.
Having someone come in and provide care to give you a break is called respite. It’s not a substitute for you but it will keep your loved one safe and cared for while you recharge. Find out what is offered in your state by calling your state’s social services hotline or adult and elderly services office.
What if I get sick?
Another friend took on the care of her husband for nine years. He was quite a bit older than she, and had a bad head injury in a car crash. After that, he could not work or live on his own. He was unable to calm down in the hospital or nursing home. The drugs they tried only made things worse. So she retired early to take care of him.
What made things tough for her was that she has health issues of her own. Once she put him in a memory care unit because she had to have two months to recover. He was distrustful of the place and other residents and was relieved to come home after, and afterwards he sometimes got mad at her for having put him there.
After that she hired people to come in to supplement her daughter’s help. When she needed shoulder surgery her doctor referred her to a home health agency too. Then she got help and so did her husband. Her husband’s health finally gave out and he had hospice coming in. That was a great help to him and to her.
She was much less able to work a social schedule in but she had family in the area so they had family birthday celebrations and get-togethers that also enriched her husband’s life. They lived in an area with lots of available services, including adult day care, which her husband tried for a while. Although the temporary help was not always to her standards, it gave her opportunities to get the care she needed.
Help may be out there
If you find yourself becoming a caregiver, you will need to know how to get respite and additional care for your loved one. You may need a wheelchair ramp installed or other things, such as grab bars in the bathroom. You may be able to get help from a state or county office of elder affairs in getting those installed.
Calling the social services hotline or adult and elderly services office, reading bulletin boards at the doctor’s office or getting an appointment with the social services person at your clinic or hospital can all help you find supports and help that you and your loved one need.
Even the federal government knows caregivers need care too. A new law passed in January 2018 by Congress called the RAISE Family Caregiver Act requires the Health and Human Services secretary to develop, maintain and update a national strategy to recognize and support family caregivers.
RAISE stands for Recognize, Assist, Include, Support and Engage. As the RAISE Act goes through its process, family caregivers will join an advisory council made up of stakeholders of all sorts of people involved in caring for people who have disabilities, long-term illnesses, and functional impairments.
The end result will be a national strategy including the smartest ideas from around the country on how best to make family caregiving work well for caregivers and their loved ones. This will give the states some tools to help caregivers with respite, education, resources and more.
Are you a caregiver? I’m sure I missed a lot…Please comment!