When you take on the huge responsibility of caring for someone you love, it can seem like the obvious choice. It feels like what you are supposed to be doing. But unless you have done it before, you may not know what you are signing up for.
The physical demands are only part of it. The emotional impact can be just as demanding.
First, let’s ask ourselves: Why are we doing this?
Because we love them?
Because we want to?
Because we don’t want anyone else to?
Because they need special care?
Whatever your reasons, write them down and put them on the refrigerator or your nightstand—somewhere you will see them months down the road and remember. These reasons are a reminder, not a promise to do everything alone. Your circumstances and the support you need may change.
And know that if you don’t think you can provide this care, it doesn’t mean you love them any less.
FIRST THINGS FIRST
Let’s start with a quick list of things to keep in mind:
- Dignity is not an option
- Suffering is not a requirement
- Communication is key
- Remember the person
- Patience
- Asking for help is not weakness
- Hospice is there for you too
DIGNITY IS NOT AN OPTION
When you can no longer care for yourself, the loss of privacy and independence can weigh heavily on you. Needing someone to help you bathe, get dressed, or use the toilet is deeply personal. That vulnerability is not something to take lightly. Needing help does not make your dignity any less important.
Imagine needing to change the diaper or incontinence brief of someone who has always been fiercely independent—the person who took care of everyone else. It can feel difficult and awkward for both of you. This is where communication matters.
Look at it from their perspective. Telling them you really don’t want to do it can make an already vulnerable moment harder. Talking about it beforehand may feel awkward, but it can help tremendously. Ask what would make them more comfortable and what words they prefer you to use.
If humor is part of your relationship and they welcome it, by all means use it. You can share a laugh and still explain what you are doing, ask permission, and give them time to respond. Some people will want you to talk them through each step; others may prefer a quieter approach. Let their wishes guide you.
Every person is unique, and your relationship with them is unique. This is where we remember the person.
REMEMBERING THE PERSON
When the body can no longer keep up with the spirit, the person you are caring for may not seem like the same person you have known your entire life. Remember who they are: their likes and dislikes, their habits, and the little things they have always insisted on. Those details are essential to giving them the dignity they deserve. Keep listening, too—their preferences and needs may change.
This is where patience matters. If there are things they still can and want to do safely, let them do them, even if you could do them more quickly yourself. Let them wash their dish, fill their pill container, put batteries in the remote, or feed themselves, even if it gets messy. Offer guidance and careful supervision where needed, while giving them room to make the effort. Follow any care instructions that apply to the activity, including eating and swallowing.
Supporting their efforts, rather than rushing to take over, can make a real difference in how they feel about themselves. Give them time, ask before helping, and remember that being able to do something for themselves may matter far more than how quickly or neatly it gets done.
SUFFERING IS NOT A REQUIREMENT
Dying and suffering do not have to go hand in hand. Never assume that discomfort is simply something your loved one must endure.
Comfort often begins with small, everyday acts: gently moisturizing dry skin, keeping nails comfortably trimmed and clean, brushing or washing their hair, and helping them settle into a comfortable position. These are meaningful parts of caring for someone.
Pay attention to itchy skin, rashes, aching muscles, difficulty swallowing, or signs that a position is uncomfortable. Addressing concerns early with guidance from their care team may prevent greater distress. Left unaddressed, small problems can become painful and much harder for both of you to manage.
Gentle changes in position may help them feel more comfortable between the position changes recommended by their care team. Ask someone to show you how to move them comfortably and safely.
The little things are not little when you depend on someone else to do them.
This applies to you, too. When you repeatedly miss meals, go without a shower, forget to drink water, or have no time away from caregiving, your discomfort and exhaustion can build. Your needs deserve attention before you reach a breaking point.
Eating something, taking a shower, drinking water, and having someone take over so you can rest are basic needs. Make room for them consistently, and ask for help when caregiving makes that difficult.
We cannot prevent every form of suffering. But tending to small needs regularly—for your loved one and yourself—can help keep manageable discomfort from becoming a much bigger problem.
HOSPICE IS THERE FOR YOU, TOO
When the hospice team asks how things are going, include yourself in the answer. If you are missing meals, barely sleeping, or afraid to leave the room long enough to shower, tell them. Those details matter when planning your loved one’s care.
You don’t need to know exactly what help to request. Start with what is difficult:
“I’m afraid I’ll hurt her when I move her.”
“Can you watch me do this and tell me if I’m doing it correctly?”
“I need a break, but I don’t have anyone who can take over.”
Ask for a demonstration, and ask again if you need one. Something that seemed clear while someone was showing you may feel very different when you are doing it yourself.
Ask about support for you as well: talking with the social worker, emotional or spiritual support, volunteer availability, and options for a break. Hospice can arrange short-term inpatient respite care when appropriate, giving the caregiver time to rest. Ask your team what is available and whether there are any costs.
Be specific about the time and help you need, and ask what the team can arrange. Together, identify any gaps that still need to be covered.
You do not have to prove you can manage everything before you deserve support. Letting the team know what you need is part of caring for your loved one—and yourself.
FINDING EVERYDAY SUPPORT
This is where companies like ours become especially relevant. At MAKA Premium Care, we help with everyday personal care, companionship, and support that gives family caregivers time to rest. If you’re outside our service area, ask your hospice team whether they know of local providers offering this kind of help.
You are still welcome to reach out to us. We can offer practical caregiving advice, help you think through what support you need, and assist however we can—even when we cannot be there in person. Our mission is to change the way people see, understand, and experience dying. Supporting families through these everyday moments is part of that mission.
HOW DO I KNOW WHEN I NEED HELP?
You don’t have to wait until you can no longer cope. If you are unsure how to perform a care task, cannot manage it safely, or regularly go without food, sleep, or basic personal care, it is time to bring someone else into the conversation.
Help can mean having someone show you a technique, arranging assistance with one difficult task, or finding someone who can take over regularly. Be specific: “I need someone who can help with bathing,” or “I need someone to stay with Dad on Tuesday afternoon so I can go to my own appointment.” Ask the person helping to confirm what they can do and when.
If your first request does not lead to the help you need, tell the care team what is still unresolved. Needing more support is information they need to help you plan.
DO TODAY
- Ask your loved one one question: “What would make you more comfortable today?” Give them time to answer in whatever way they can.
- Choose one familiar task they want to do, and give them time and the support they need to participate safely.
- Write down one care task you feel uncertain about and ask the care team to demonstrate it with you.
- Make one specific request for help, including what needs doing and when you need it.
- Check your own basic needs. Choose a meal, a shower, a drink of water, or a break that you need today, and arrange support if you cannot step away safely.
AM I DOING THIS RIGHT?
There may be days when you finish everything on your list and still wonder whether you have done enough. There may also be days when the list has to wait because your loved one needs your attention more than anything else.
Return to the person in front of you. Are you listening? Are you protecting their dignity, making room for their choices, and asking for guidance when something is unfamiliar? Are you letting others know when you need support?
Those questions can help you decide what to do next. You can learn a new skill, change an approach that isn’t working, and accept help along the way.
You can be a loving, capable caregiver and still need someone to teach you, reassure you, or take a turn.
Source: Medicare’s hospice coverage
For practical family support, call MAKA at 385-640-1211.