You are the caregiver who has finally conceded that “outside” help is needed and you’ve taken the plunge. You’ve done your homework (or not) and hired home care workers. You’ve already sorted out whether to use an agency or to hire private contractors. You may have made your decisions with reams of information or with little information at all. Paid caregivers are now in place to help care for your loved one.
Yet, the situation still does not feel under control, and you feel stressed. Your loved one might even be delighted with the caregiver, but you’re not happy about some aspects of home care. What next? Whether the care receiver lives with you or alone or with other family, you may find that several more hats have been added to the ones you’ve already been wearing. On top of being a spouse, an adult child, and a loving caregiver, perhaps you now feel you need nurse’s aide skills with a smattering of R.N. and M.D. skills; accounting skills with knowledge of employer responsibilities; and supervisory skills covering personal care, household care, and the special needs of people with dementia. And you’re asking: “Isn’t this why I hired help?”
There are many possible sources of stress in utilizing home care services. Family members might provide help in various ways, but some might have no role where home care is concerned. Family members who live with the care receiver probably have a role in home care, but how they relate to paid caregivers may be uncertain. If there’s an agency involved, does the agency have a role other than providing a worker? If there’s a professional care manager, what is that person’s role? Once you determine who is on the team, then you might ask, “who wears which hats?” Maybe the team does not expect you to do anything other than hire the home care worker. Or, maybe the team expects you to do everything. Sorting these issues out early in the home care venture (or adventure) can make the plan work more smoothly.
Family Caregiver as Care Manager
A second source of stress may arise when a care plan is too vague. In the “care management” model, the care manager follows a process which includes assessment, planning, implementation, and evaluation. If you have already hired home care workers, knowingly or unknowingly you’ve completed the first three steps. It’s expected, and more than okay, to evaluate your plan as often as needed. Assessing, planning, implementing, and evaluating are a continual process. Care plans need to change from time to time. They also need flexibility. Both the care receivers and the caregivers (paid or family) will have some variation in their abilities and needs from day to day.
A care plan is a written plan that outlines the paid caregiver’s duties. A written schedule is useful as well. If there is more than one caregiver, it might even be essential in order to assure that all tasks are covered.
A written care plan is particularly helpful if last minute substitute care is needed, so everyone knows the plan for the day. Because consistency in routines is useful when working with someone with dementia, the care plan is a way to provide details of those routines. The plan may even provide hints on what strategy works in getting the care recipient to cooperate with bathing or other activities.
A third to way to minimize stress in home care involves communication. A notebook in the care receiver’s home is essential if the care receiver has dementia. The caregivers can communicate with each other or with you about how the plan is working. Some paid caregivers will bring new and useful ideas to you on how to care for your loved one. Some will think that they know more than they do. Read carefully. The comments of some paid caregivers may reveal that they need more training or are not suitable at all.
The notebook is also a way to track variations in the schedule: “John was pacing all day and refused to shower.” “Ann asked for a shower today.” In addition to getting a sense of how your loved one is functioning, you will also get a sense about whether certain workers have more difficulty getting your loved one to cooperate (and whether, in general, they are skilled in taking care of someone with dementia).
The notebook will also provide you with other useful information about your loved one. When care receivers are unable to report reliably about essential bodily functions, the communication book is useful way to note whether the care receiver eats and drinks enough; whether he or she has adequate elimination; whether there are any new concerns about mobility; whether there are any skin problems; and the like.
However, the communication notebook does not replace the need to check in personally with the home care worker.
Some of your stress may be related to having set up no plan for supervision or checking in. It may be difficult to start this practice after a problem arises. Both you and the home care worker will probably benefit from regularly scheduled meetings or telephone conversations. The communication notebook will not cover it all.
If you’ve been lucky, you’ve hired someone who stepped right in and took over without a problem. A really good home care worker will even have skills to take care of you as well as your loved one. Be prepared for the possibility of wearing the “being taken care of” hat. If your loved one lives with you, your paid caregiver may want to cook for you or clean for you. You will need to decide what you are comfortable with. The home care worker may be sympathetic about how difficult it was for you to be up all night with the care receiver. This same home care worker will want to hear positive feedback from you about the care that she is providing. This home care worker may even want to coach you about how to provide care. Yet, if some part of her care provision is a problem, this same experienced home care worker must get that message as well.
Thus, it is useful, early on in the home care venture, to set up a plan for checking in with the worker regularly, either face to face or on the telephone. It is useful to create a safe space where the home care worker can share her expertise with you and where you can share your preferences for care for yourself and your loved one.
It is also essential to sometimes be at the care receiver’s home to do “odd jobs” while the paid caregiver is there. While you are occupied with the “odd jobs,” you will have an opportunity to see and hear how the caregiver interacts with your loved one. If your loved one is responsive and involved when this caregiver is around, you may be able to overlook the fact that this caregiver is not neat about making a bed. If you know that your loved one argues with you every time you try to give a shower and you see that the caregiver has a way to gain cooperation, then you are reassured that you have hired well. On the other hand, you may overhear another paid caregiver arguing with your loved one about resistance to taking a shower. Then you must decide if that worker needs further training or has crossed a line into unacceptable behavior. In all likelihood, your loved one with dementia cannot give you reliable feedback about each paid caregiver.
You protest, “I am not a manager or a supervisor.” If you feel you truly are not a good supervisor, can anyone else on the team do this job? If you have hired through an agency, clarify whether the agency supervises its employees on a regular basis at the care recipient’s home. Determine whether the agency supervisor has the skills to supervise your loved one’s care. Is the plan for supervision detailed in the agency’s contract? If you have hired a private contractor or have hired through an agency that does not provide regular supervision, would a private care manager be useful and affordable for you? It is guaranteed that the home care plan will not run itself. If you are not a supervisor, then you’ll probably end up as chairman of the board. You won’t escape involvement unless the rest of the team bails you out somehow.
What Else Is Essential?
Many aspects of home care need close attention. There are really good home care workers, and unfortunately some really unsatisfactory home care workers. However, most are neither stars nor failures. Most home care workers bring a mix of talents to the job. Your responsibility is to determine whether their strengths outweigh their weaknesses in meeting your loved one’s needs. It is useful to contract with any home care worker on a trial basis. It takes two or three weeks to determine if your loved one, the home care worker, and you are a good match for each other. Personalities and individual styles make a difference. Whether it is important to match up with other team members also needs to be determined.
- The home care worker should be able to make a connection with your loved one and provide companionship. If your loved one is no longer able to connect with others, does the worker demonstrate gentleness and respect in working with him or her?
- Tasks that involve the health or safety of your loved one should be demonstrated to the worker, be demonstrated back to you by them, and reviewed from time to time. For example, your Dad, who is a big man and is paralyzed from a stroke, transfers bed to chair in a specific way. A good worker will be able to safely maintain this routine. If your loved one uses oxygen or a Hoyer lift or a transfer bench, after demonstration by you and redemonstration by the worker, the worker should understand how to use the equipment safely and appropriately. If there are medical treatment plans to be followed (such as routine medications, daily weights, therapeutic diets), the worker should follow your instructions exactly. The worker should also follow your directions on what to do if, for any reason, the plan cannot be completed as directed.
- It is essential to discuss emergency procedures with the home care worker. You should ascertain the worker’s understanding of how and when to call 911. Some workers are new to this country and are unfamiliar with many aspects of day-to-day life in the United States. Do not assume that the worker knows these procedures. If your loved one has a written “Do Not Resuscitate” directive, does the worker know where it is? Does the worker know which part of the team needs to be called about the emergency? If a situation is not an emergency but is urgent, how do you want the worker to handle this? Do you want the worker to take messages from the doctor or the visiting nurse? Is your contact information up-to-date?
- Accountability is essential and needs to be discussed even before the start of care. If your loved one cannot be left alone, coverage for absences must be clarified. Will the agency or private contractor provide back-up? Is this acceptable to you? Sometimes the answer is yes and sometimes no. Care receivers will have problems despite the best of care. And care receivers will definitely have problems from substandard care. There are times when workers need to be fired. There are times when the worker needs to be reassured that she did the best that she could. And by all means, there are times for praise.
A Final Word
A home care plan does not totally relieve you of your involvement in your loved one’s care. The situation will still be stressful in some ways. If the plan you have developed cannot be fixed, change it. Change the duties; change the worker; get professional advice. Allow that things will not go exactly as you envision. Focus on the priorities. Is your loved one safe? Is your loved one’s health being maintained? Is your loved one connected to the home care worker? If you answer yes to these three questions, then maybe some of the rest is not so important.
For more information, see the FCA fact sheet, Hiring In-Home Help and ask an FCA staff about a Caregiver College workshop where you live.
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Email: [email protected]
FCA CareJourney: www.caregiver.org/carejourney
Family Care Navigator: www.caregiver.org/family-care-navigator
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues, provides assistance in the development of public and private programs for caregivers, and assists caregivers nationwide in locating resources in their communities. For San Francisco Bay Area residents, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease, and other debilitating health conditions that strike adults.
This tip sheet was prepared by Family Caregiver Alliance. ©2016 Family Caregiver Alliance. All rights reserved.