Most people prefer to stay in their own home as long as possible as they age or deal with a life-limiting illness, according to an AARP survey. Depending on needs, managing this successfully may mean hiring outside help, such as personal care helper, a home health aide, or a nurse’s aide. Whether a person’s health takes a sudden downturn or the decline is slow, at some point it will be important to do a realistic assessment about the need for help with home health care.
There is a human tendency to ignore that which distresses us—to rationalize that things aren’t really so bad—and to say someone else needs help, but not us. As human as this tendency is, it is not helpful to the person who needs the help and to the people caring for them as best they can.
Getting help with in-home health and personal care is more common than you think. More than 4.8 million direct care workers—including personal care aides, home health aides, and nursing assistants—support older adults and people with disabilities or life-limiting illnesses in the US (Source: PHI).
Care provided by family and inner circle caregivers and direct care workers is inextricably linked. Nearly a third of family and inner circle caregivers report that the person they provide care for also receives care from a direct care worker (Source: PHI).
Determining if outside help with caregiving is needed
Asking the difficult questions can be informative, whether you are living on your own and considering getting support, or you are the caregiver thinking that outside support would really help.
Questions to ask yourself if you are the person considering hiring help:
- Is it harder to get in and out of the bathtub?
- Has driving become difficult?
- Am I managing my medications correctly or not sure?
- Are cooking and cleaning much more of a chore than they used to be?
- Is grocery shopping overwhelming?
- Do I need help bathing or getting dressed?
- Am I just tired?
- Does it all feel like too much sometimes?
Questions for caregivers who are considering additional help fall into four categories:
- Personal Care: Does your person need help with activities of daily living like bathing, eating, dressing, toileting, grooming, and mobility?
- Healthcare: Does your person have complex health needs that require a caregiver with medical training? Do they need someone to take them to medical appointments? Or just medication management?
- Emotional Care: Is your person housebound and alone most of the time?
- Household Care: Does your person need meals prepared for them and the house cleaned? What about laundry?
More questions for caregivers to consider:
- What do you need? What tasks are difficult for you to perform, whether due to scheduling issues, or the task itself?
- What can you delegate to hired help and what caregiving tasks are particularly meaningful to you?
- What tasks could hired in-home care or home health care workers perform that would allow you to be more of a spouse, friend, son, or daughter to your person? It can get emotionally complicated to both give care, particularly intimate care, and maintain familial relationships.
A question for everyone is: When is help needed?
- Just in the morning with bathing, dressing, and meal prep?
- During the day only?
- Certain days of the week?
- Twenty-four hours a day/seven days a week?
The range is very large. A few hours a day or once or twice a week may be sufficient at first, depending on needs. As time goes on, needs tend to increase.
The answers to these questions will generate a list of tasks or needs that will help you decide what kind of help is best suited for your situation.
Some for-hire caregivers specialize in personal care and light housekeeping; others provide medically-trained assistance, and some offer both.
The answers to the questions above will also help you decide how much help you need. All of this information gathering will help you construct a job description for caregivers in your home. A thoughtful, detailed job description will be very helpful in speaking with individuals that you may hire and with agencies that provide caregivers. The job description is also helpful when crafting a personal care agreement for family members and individuals that you may hire.
I know in-home help is needed, but the care recipient is objecting. Now what?
You may be watching your parents struggle on their own, or you may be overwhelmed with trying to care for someone. You know that additional help would make a huge difference. And yet, the care recipient really, really doesn’t want 1) any help at all; 2) strangers in the house; and/or 3) anyone other than you or other family members to do anything.
This is a tough yet common situation. People deserve to be treated with respect and to have their autonomy honored; on the other hand, that one person’s autonomy and dignity should not require everyone else to sacrifice their own lives and autonomy. There are often life-long relationships to be honored, or navigated, at the same time. If care is forced on someone, they may sabotage it.
So, what to do?
Caregiver.org has a number of suggested strategies in this situation.
Listen to the care recipient’s concerns and fears. Maybe you can allay some of them; maybe just being listened to will help the care recipient come to terms with the change (and it is a big change being asked). Try not to argue or debate; just listen and validate. This doesn’t necessarily mean you agree with what is being said, but you listen. Breathe deeply as indicated.
Start slowly if possible. Only have the caregiver come for a few hours a week until a relationship is built between the caregiver and care recipient.
Use a trigger event as an entry point, like losing a driver’s license. You can present the caregiver as a ‘driver’ who supports the care recipient’s autonomy. This has the advantage of being true and also allows the caregiver to quietly assume other caregiving duties as appropriate.
Turn it around so the care recipient is doing you or someone else a favor. The caregiver will “help you out.” You know the “care recipient doesn’t really need the care,” but you would feel better if they had someone there. You have a “friend” who is lonely and would like to spend some time with the care recipient.
Allay fears about the costs of in-home care. Depending on the situation, for instance if someone else is managing the care recipient’s finances or someone else is paying for the care, tell the care recipient the care is “free” or sponsored by a former employer or a community program. Worries about money, or just a belief that it would be a waste of money to have hired help in the home, are common.
Lean on an authority figure. “Your doctor says this is necessary.”
The best strategy is the one that works in your situation. A lot depends on the mental acuity of the care recipient and relationships among the interested parties. The more trust that exists and the more decline the care recipient is experiencing, the more the deceptive strategies will be successful. It feels really weird, if not outright wrong, to lie to someone you care about and are trying to take care of but try to keep the goals in mind.
The goals are:
- The care recipient is safe and well-cared for.
- The care recipient’s dignity and self-esteem are supported and their autonomy honored to the degree possible.
- Relationships are maintained. Getting into a knock-down-drag-out fight with your father that ends with you telling him he is either getting an in-home carer or you are leaving is not a desirable outcome. And it happens. Sadly, usually he doesn’t get the help, and you don’t leave.
- The family and inner circle caregivers are also supported, both in their caregiving and in maintaining, if not nurturing, their own lives and relationships.
Consider what may be at stake. If a white lie will facilitate these important goals, it may well be an excellent, if not virtuous, strategy.
The questions and considerations presented here can be part of an ongoing or repeated conversation about care needs. Answers that seem right today may not be as applicable a few months from now, so it’s okay to revisit your decisions or build a case for getting additional in-home help over time. Hopefully, you now feel like you have more tools for determining if and when additional or professional at-home caregiving support is needed.
Once you have recognized that you need help with home care or in-home health care, it is time to start preparing your home and yourself for that support. Learn how to get ready for help in your home.
