Caring for A Loved One At Home
Caring for someone with a serious illness often involves more than families expect at first. Meals, medications, bathing, mobility, appointments, symptom changes, and interrupted sleep can gradually become part of the daily routine.
Most family caregivers were never trained for these responsibilities. This guide covers practical ways to make care at home more manageable, what changes are worth reporting, when to call hospice, and how to look after your own health while caring for someone else.
Caring for a Loved One at Home Can Change Over Time
Caring for someone at home may begin with relatively simple help, such as preparing meals, driving to appointments, picking up prescriptions, or checking in more often. As an illness progresses, more of the day may begin to involve hands-on care.
That can include things like:
Most people haven’t been trained to do these things before becoming a caregiver. Hospice nurses, aides, social workers, and other members of the care team can teach specific tasks, answer questions, and help families adjust as care needs change.
Support Independence Where You Can
A serious illness can take away a great deal of control. When it is safe and practical, continuing to let a loved one make everyday choices and participate in their own care can help preserve some of that independence.
That may mean choosing what to wear, deciding when to bathe, feeding themselves, brushing their own hair, walking a short distance with assistance, or deciding when they want visitors.
There is no need to force independence when a task has become exhausting or unsafe. The point is simply not to take over something the person can still do comfortably just because doing it for them would be faster.
Small changes around the home can also make everyday tasks easier. Frequently used items can be moved within reach. A chair may make grooming or washing up less tiring. Clothing that is easier to put on can reduce frustration.
As strength and mobility change, the hospice team can help families decide when a task is still appropriate and when a different approach would be safer.
Create a Routine That Makes Care Easier
A rigid schedule usually isn’t necessary. A few predictable parts of the day can reduce how much there is to remember and make it easier for another family member to step in when needed.
A simple routine might keep track of:
Keep the system somewhere easy to reach, whether that’s a notebook on the kitchen counter, a whiteboard, a calendar, or notes on a phone so that it can be easily referenced.
Helping With Personal Care
Bathing, dressing, using the bathroom, changing clothes, and basic grooming can become harder as strength and mobility decline. Family members may gradually take on more of these tasks, sometimes without much instruction beforehand.
It helps to focus on what is comfortable, safe, and manageable that day. A full shower may work well one week and be exhausting the next. Washing up at the sink, using a shower chair, or completing personal care in smaller steps may be easier.
Some practical adjustments can help:
Hospice aides can assist with personal care, and the care team can show family members safer ways to help with tasks between visits.
There may also be days when a loved one simply doesn’t have the energy for the usual routine. Personal care can be adjusted around how they’re feeling rather than treated as something that has to happen the same way every day.
When Moving Around Gets Harder
Weakness can make ordinary movements much more difficult. Getting out of bed, standing from a chair, walking to the bathroom, or shifting position may begin to require help.
This is also one of the areas where caregivers can unintentionally hurt themselves. Trying to lift or catch another adult without the right technique can lead to falls or injuries for both people.
If mobility is changing, tell the hospice team rather than trying to work around the problem indefinitely. They may recommend or arrange equipment such as a walker, wheelchair, bedside commode, shower chair, or hospital bed when appropriate.
More importantly, ask someone to show you how to help.
Safe ways to assist with standing, repositioning, or moving from a bed to a chair depend on the person’s strength, balance, weight-bearing ability, and medical condition. A nurse or aide can demonstrate the safest approach for that individual rather than leaving the family to figure it out through trial and error.
A noticeable change in mobility is also worth reporting. Someone who suddenly needs much more help walking or standing than they did a few days earlier may need to be assessed by the hospice team.
Medications and Changing Symptoms
Medication management can become one of the more complicated parts of caring for someone at home, especially when several prescriptions are involved, or medications are taken at different times.
The simplest approach is usually the best: keep the current medication instructions in one place and follow the plan provided by the hospice team.
It may help to keep track of:
If the hospice team provides a medication log or asks the family to record certain doses, keep it somewhere everyone involved in care can find it.
There will also be situations that don’t fit neatly on a schedule. Pain may increase. Breathing may become more difficult. Nausea, anxiety, confusion, restlessness, or other symptoms may appear or change. When that happens, the caregiver’s job isn’t to diagnose the problem or start adjusting medications independently.
If the instructions aren’t clear, a medication doesn’t seem to be working, or symptoms change unexpectedly, call the hospice team before guessing what to do next.
That call gives the nurse a chance to ask what is happening, review what has already been given, and decide whether the care plan needs to change.
For a fuller explanation of how hospice addresses pain and other symptoms, see Pain and Symptom Management in Hospice Care.
Eating and Drinking May Change
Appetite often changes as serious illness progresses. Foods that once sounded good may become unappealing, portions may get smaller, and someone who used to eat three full meals may begin eating only a few bites at a time.
For caregivers, that can be hard to watch. Preparing food is such a familiar way of caring for someone that it can feel wrong when they no longer want it.
In many cases, it is better to offer food and drinks without turning them into a struggle. Small portions, favorite foods, softer foods, or eating at a different time of day may work better than trying to maintain the person’s old routine.
Pay attention to changes such as:
Let the hospice team know when these changes appear. They can help determine whether food textures, positioning, medications, or the overall approach to meals should change.
As someone moves closer to the end of life, eating and drinking may decrease considerably. This can be upsetting for families, especially when it feels as though the person needs more food to regain strength. Our Understanding the End-of-Life Process resource explains why appetite, thirst, sleep, breathing, and other body functions can change during this time.
Know What to Notice and When to Call Hospice
Family caregivers spend more time with the patient than anyone else, which means they are often the first to notice when something is different. You do not need to decide whether a change is serious before calling.
Contact the hospice team when you notice things such as:
Sometimes the reason for calling is less specific. Something may simply seem different.
If a person who normally talks throughout the morning suddenly becomes unusually sleepy, or someone who could walk to the bathroom yesterday can barely stand today, those changes are worth reporting.
You do not need to wait for the next scheduled nursing visit. Hospice staff can help determine what needs attention now, what can be watched, and whether someone should come to the home sooner than the next scheduled visit.
Keep Important Information in One Place
Caregiving comes with a surprising amount of information. Medication changes, phone numbers, questions for the nurse, equipment deliveries, symptoms, appointments, and instructions can pile up quickly.
A simple notebook, binder, whiteboard, or shared note on a phone can help keep everyone working from the same information.
Useful things to record might include:
It does not need to be elaborate. A notebook on the kitchen counter with the date and a few notes can be enough. What matters is that the information is easy to find, especially if more than one person is helping with care.
It can also make phone calls with the hospice team easier. Instead of trying to remember when a symptom started or when the last dose was given, you have something to refer back to.
Let Other People Help With Specific Things
Friends and relatives often want to help but don’t know what would actually be useful. That’s how caregivers end up hearing, “Let me know if you need anything,” over and over while still handling almost everything themselves.
When someone offers, give them a job, like:
The task doesn’t have to involve patient care to be useful. Taking one ordinary responsibility off the caregiver’s plate can free up time and energy for everything else that needs attention.
If several people are offering help, it may be easier to have one family member coordinate meals, errands, or visits rather than managing each offer individually.
Your Health Still Needs Attention Too
Caregiving can make personal needs surprisingly easy to postpone.
Meals get skipped because something else needs to happen first. Sleep becomes interrupted. A caregiver’s own prescription runs out, or a doctor’s appointment gets pushed back because leaving the house feels complicated.
Sometimes that can go on for quite a while before anyone notices how depleted the caregiver has become.
Try to protect the basics where you can:
Needing time away from caregiving does not say anything about how much you care about the person. Sometimes an hour to shower, eat somewhere else, take a walk, or simply sit somewhere without listening for the next need is exactly what allows someone to keep going.
Hospice can also help families understand what caregiver assistance or respite options may be available.
Caregiving Can Bring Feelings You Didn’t Expect
There isn’t one correct emotional response to caring for someone who is seriously ill.
A caregiver can feel deeply loving and still be frustrated. Grateful for more time and exhausted by what that time requires. Sad about what is happening while also wishing the uncertainty would end.
Fear, anger, impatience, guilt, resentment, sadness, and relief can all appear at different points.
Some caregivers begin grieving long before a death occurs. They may be watching changes in the person’s personality, independence, memory, strength, or ability to participate in family life. That sense of loss can begin even while the person is still present.
Those feelings don’t need to be turned into a lesson or pushed aside because someone else “has it worse.” They are part of what prolonged caregiving can involve.
If the emotional strain is becoming difficult to manage, the hospice social worker, chaplain, or other members of the care team may also be able to talk with the caregiver directly.
You’re Part of the Care Team, You Aren’t the Whole Care Team
Family caregivers often notice things that no one else sees.
They know how much the person normally eats. They recognize a change in the way someone speaks, sleeps, walks, or breathes. They may notice that a medication seems to help for fewer hours than it did last week or that getting out of bed suddenly requires more effort. That information is useful to the hospice team.
But being close to the patient does not mean a caregiver should also be expected to know how to manage every symptom, solve every equipment problem, understand every medication, or handle every personal-care task without help.
Hospice brings different people into the care for a reason. Nurses address medical needs and changing symptoms. Aides can help with personal care. Social workers can help with practical concerns and family issues. Chaplains can provide spiritual care when wanted.
Other members of the team may become involved as needs change. Our How Hospice Supports Families resource explains more about the ways hospice can help the people providing day-to-day care.
For a closer look at respite care, caregiver education, social work, spiritual care, and other assistance available through Living Waters, see Hospice Support Services.
When Care at Home Is Becoming Hard to Manage
It may be time to call when daily care is becoming harder to keep up with, symptoms are changing, the caregiver is no longer sure how to safely manage certain tasks, or the amount of care required has increased beyond what the family expected.
Living Waters can review what is happening, answer questions, and help determine what changes in the care plan may be appropriate.
Phone: 909-315-8113
Email: csr@lwhospiceca.com
Address: 22300 Van Buren Blvd. Suite 102
Riverside, CA 92518
Phone: 928-565-9000
Email: csr@lwhospiceaz.com
Address: 3711 US Highway 68
Golden Valley, AZ 86413