Caring for a loved one who is dying can be extremely difficult. You might experience some emotional turmoil that could affect your patience, and you may feel overwhelmed by the physical tasks associated with caring for the patient.
The process of caring for someone who is dying in your home isn't always easy to navigate. There are many things to consider, including how to deal with emotions like anger or guilt, as well as practical concerns like what kind of help you should seek when you need it. It's important not only to know about these issues but also to have a plan in place so they don't catch you off guard during this trying time.
We've created a guide on how to care for a loved one at home while they're dying so that you'll be prepared if something happens and know what steps to take next. You'll learn what warning signs indicate that professional help is needed, as well as tips on coping with grief and finding support from others who are experiencing similar hardships.
Being a caregiver at the end of life basically means you're caring for a loved one who is dying. This can happen in your home or theirs, and it comes with its fair share of challenges.
Being a caregiver at the end of life means your loved one is nearing the end of their battle with illness, and they're likely unable to care for many tasks themselves. You'll need to be patient with yourself as well as them, providing emotional support and helping out where you can with physical concerns that might present themselves.
One of the most important tasks during this time is to be supportive. This means being there for your loved one but also communicating with other family members through phone calls or visits.
It is important that you don't take on the caregiver role in a way that will cause emotional distress for yourself. A support network can sometimes help alleviate some of the emotional tolls that come with this type of caregiving.
When you take on the unique role of caregiver at the end of life, there are many different aspects that you will be in charge of. There's no doubt that this process can be extremely difficult emotionally, but it's important to know what tasks might fall under your responsibility so you can coordinate with other family members and make sure things run smoothly.
Making sure your loved one is comfortable during this time can mean so many different things. It is everything from hygiene to pain management. Let's go over some tips on how you can help your loved one feel more comfortable during this time.
Skincare starts with helping your loved one with things such as bathing, shaving, and applying lotion. When helping your loved one with these tasks be sure to be gentle to their condition.
If they are uncomfortable, talking them through it step by step can help. If they are in pain, applying lotion with your hands can help the overall comfort level.
If a task feels difficult at first do not force it. Take it one step at a time. The idea is to make sure that you are both comfortable throughout the entire process.
If they are unable to wash their own hair then it is up to you. If they have a bathtub, then gently lower them into the tub and wash their hair there.
If they do not have a tub, then having a bowl on the side is fine as well. You can just wet a towel and put it over your loved one's head so you can maneuver around their condition.
Once you have gently washed their hair, then you can get them out of the tub and dry them off. Make sure to be gentle with this process as well.
If they are up for it, brush their hair. If not, don't worry about it. Again it is important to do everything one step at a time. Start with washing then gradually move to brushing and styling. Just take your time with the process.
Keeping a person clean can make a world of a difference. Remember the dying process is long and it is important to keep them as comfortable as possible.
How do you help your loved one? Do they have personal hygiene preferences? Maybe they would prefer going natural during this time. It's all up to them. As their caregiver make sure you speak with them about what they would like to do.
Even if they don't have personal hygiene preferences, it is still important that you take care of their body at this time. You may find that they would rather take care of some personal hygiene on their own. Perhaps they can change their clothes themselves, or even brush their own teeth without your help.
The last thing you want is to make them feel like they are a child again just because they need help with certain things. So let them do as much as possible by themselves during this time.
If your loved one is able to get themselves to the bathroom on their own then you don't need to help them much. However, it is important to be nearby should they need anything.
If your loved one is bedridden or wheelchair-bound then this process will require more your help. Before you start, think about what it will take for your loved one to use the bathroom safely and comfortably during this time.
One major thing to remember is if they are using a bedpan or a urinal. Be sure to clean it immediately after they have been done. If the room that your loved one is in has carpet then cleaning up after them can be difficult. It is best to purchase disposable shower curtains to prevent any messes from happening on their floor
Taking medications can be difficult especially when your loved one is bedridden and cannot get themselves to their medication. Take the time to really learn and understand what medications they are required to take, what the purpose of the medications are, and the side effects to be aware of.
You want to maintain a strict schedule with the medications. You can do this by setting a timer on your watch or phone to guarantee that the medications are being administered in a timely manner. If your loved one is using any medical devices make sure you are comfortable with operating, cleaning and maintaining these devices.
It's a good idea to have your loved one's medical team numbers handy in the event that you need to call someone should the devices malfunction or require maintenance that you are unable to perform.
It is important to keep your loved one's strength up during this time. Not only for you but also for them. They will need to eat a healthy diet if they want to fight through the dying process with as much energy as possible.
You may find it difficult to feed them because of their condition, however never be afraid to ask for help. If you are feeding your loved one make sure the food is easy to chew and swallow.
Otherwise, follow their doctor's dietary guidelines. If they are unable to eat then ask their doctor about supplements such as Ensure or Boost shakes that they can have throughout the day.
If your loved one cannot open their mouth do not be afraid to ask for help . There are many devices on the market now that make it easier for people to open their mouth, chew and swallow. Ask your loved one's doctor about purchasing these devices.
There may come a time where your loved one's mobility will become more difficult. This may result in them needing extra help getting around.
Make sure that you have a wheelchair or walker nearby at all times in case your loved one needs to move around. Also, clear the room of any unnecessary furniture so they can easily get around their room without hurting themselves on anything.
If your loved one is bedridden or using a wheelchair then make sure you have something sturdy to hold onto in case they need to get up quickly.
During this time you will be working very closely with your loved one's nurses, doctors, social workers, and palliative care team. It is important to have a clear line of communication and to stay in contact with all members of your loved one's medical team.
Your loved one's nurse is the professional that you will most like to spend the most time with and will be there regularly to help with any medical needs. You can communicate directly with your loved one's nurses by providing their phone numbers in case you need to get in contact with them at any time of day.
They may come and go while you are there for personal time and you will need to coordinate with them as well. This is an important part of the coordination process because if your loved one needs anything it's much easier for their nurse to take care of it rather than you having to leave your loved one unattended to take care of this.
You can feel secure knowing that their nurse is there to assist with any additional needs your loved one may have during this time.
Your loved one's doctor will also play a key role to help your loved one through this time. Sometimes you may be dealing with the doctor directly and other times it will be through your loved one's nurse.
They can provide you with any information that they feel is necessary for you to know about their condition, their upcoming treatments, and their prognosis. Your loved one's doctors will also assist you with any questions or concerns that you may have.
They can offer insight and guidance during this time and will help to coordinate the care provided by other members of your loved one's medical team.
Your loved one's social workers are there to help you coordinate the care that is being provided by the medical team.
They will ensure that your loved one has all their personal needs met during this time. This may include helping you obtain any supplies or equipment that is needed for your loved one to be comfortable and happy while they are at home with you.
The palliative care team is a group of professionals that work together to provide care to improve the quality of life for your loved one. Their role is to meet with you and your loved one in their home or at the hospital to provide support, information, guidance, counseling, bereavement counseling services through this difficult time.
They are meant to coordinate all aspects of care with your loved one's medical team including doctors, nurses, and hospital staff.
Their goal is to work closely with the patient, family, and caregivers to ensure that everyone is being cared for as effectively as possible.
Your loved one's palliative care team may also provide bereavement counseling services after your loved one has passed away. They can help you and your family cope with the loss of your loved one and ensure that you have access to all the support that is available to you during this difficult. They will also meet you to discuss what kind of care your loved one needs and how they can provide support for you as well.
The right clergy or spiritual adviser can be a tremendous comfort to you during this time. They may provide the guidance that you need to help you and your family cope with this difficult time. A spiritual adviser may help your loved one to find peace during this time. If you want a specific kind of support from them, it's important that you discuss their role in the care of your loved one before they pass away so that you know exactly what kind of support you can expect from them.
You should not have to go through this alone as a caregiver. There are many organizations that provide volunteers and home health workers to assist your loved one, sort through their personal belongings, and help you plan the funeral arrangements for your loved one after they pass away.
You may also find community members who are willing to help you in a variety of ways during this time. Don't be afraid to ask for assistance when you need it so that you don't have to handle the burden of care alone.
Start by asking the health team you are working with as well as social workers. They can provide you with a list of resources local to you. This is a great place for you to start.
Managing your loved one's mental and emotional stress during this time is important. It can be difficult to balance supporting your loved one while also attending to their needs, especially as you are becoming familiar with the caregiving process. This may affect how your loved one copes with their illness and it can make them feel like less of a person.
Here are some tips to keep in mind for managing your loved one's mental and emotional stress:
If you're feeling overwhelmed by the stress of taking care of your loved one or managing your own emotions, it is important to also take care of yourself. As part of providing support to your loved one if you are feeling overwhelmed, give yourself a break. You can't support your loved one if you aren't taking care of yourself first.
While your role as a caregiver requires a lot of physical tasks, the daily support and companionship that you are providing your loved one are one of the most important things you will do. You will be the person that they will be talking to most often. You will share their feelings, their worries, and their fears. It is a very stressful time for everyone involved and part of your role as a caregiver is to be supportive and listen.
Here are ways you can be supportive:
It may be difficult for them to see any other way through their illness and this can lead them to feel hopeless. Reassuring them that you are there for them and that they'll be okay is a great way to help them cope with what they're going through and it will give you some comfort too.
They may have a lot of things they need to get off their chest. They may not want to talk so ask them what you can do for them and how you can help. You are there for support, if that means just being silent then that is okay too.
Just being their caregiver doesn't mean you always know the right thing to do. They may be having a bad day or they may not feel like talking at all times so be patient and ask what they need. If you are finding this difficult, remember that it is okay to ask for help.
You're not alone in this process. There are many other people who have been through this and can provide you with tips and advice as well as a listening ear, so don't be afraid to reach out for help if you need it.
It can be difficult for your loved one if they're in an unstable and uncomfortable environment. They may start to feel like they don't have control over anything, which will make them upset. You want their last days or weeks to be as peaceful and calm as possible, so it is essential that you create a comforting space for them to be around.
If your loved one is not able to walk or move much, then keep their room clean and clutter-free, bring them their favorite foods to eat, play some soothing music that they enjoy, put up pictures of family members or friends that they can see easily. Just these little changes will help make the space more comfortable and more like home.
As much as you want to help your loved one, it may be difficult for them if they feel like they are no longer an independent person. Don't do things for them that they can still do by themselves (i.e. Helping them get dressed) Don't use words that will make them feel frail or weak. It is so important to help your loved one believe that they are still strong and capable of doing things on their own, even if it can't always be possible for them anymore.
If you are finding this difficult, try practicing what you'll say beforehand so that when they ask you to help them do something they can't, you'll be able to give them an answer that they will understand and may even make them feel better.
Your loved one may not be able to do some of the things they used to and so it is important that you help them with what they still can. At this time, it is also more important than ever for your loved one to feel like they still have control over their life and surroundings. It's important to find that balance. Here are some tasks that you may be taking over as a caregiver.
Part of making sure that your loved one is comfortable is ensuring that their space is maintained. Cleaning and decluttering spaces such as the bedroom and/or bathroom are part of these tasks. Doing the dishes and laundry as well as running errands to pick up household products to maintain everything is part of the tasks you will be responsible for.
If your loved one has pets that will be staying with them during this time, then it is important to consider how their needs will be met.
Dogs and cats need food and water. They also need walks, toys to play with, daily attention, and grooming. Be sure to enlist the help of other family members when caring for pets when you're in the position of caregiving.
Oftentimes, once a loved one is really in the process of transitioning to hospice or an in-home facility, they won't be able to walk their dog, feed them (unless you are able to help out), play with them, or groom them. Pets can get jealous easily, so be sure to make time for them and give them lots of love.
It is important to remember that if a pet is not receiving their needs met they could become aggressive or depressed. You can learn more about how pets are impacted during this time here.
If your loved one is still living in their own home it is important to make sure that all their bills are up to date. If you are designated as the responsible part then it is important to create a budget and keep track of what money is coming in and what bills need to be paid and when.
It is recommended to make this process as automated as possible. Set up a direct deposit for any funds that your loved one is receiving. Set up automatic payments for any rent, mortgage payments, or utilities. Be sure to take the time each quarter to review your loved one's finances to make any adjustments needed. This could be canceling services that may no longer be needed or resisting some expenses.
This process could be anything from making the decision to move your loved one into a care facility or end of life hospice up until their death. These decisions are difficult, but they also aren't easy for you either. Take some time, talk with other family members and make sure that everyone is on the same page before making these decisions and discussing them with your loved one.
Laundry is never a fun job. It's messy, it's stinky, and it takes time. But when you're caring for a loved one who is dying, doing laundry becomes an especially important task because the patient may not be able to do as much of their own cleaning or even walk around so well anymore.
Most people find that they need to change how they approach laundry during this time period in order to make things easier for themselves and for their loved one.
Here are some tips:
This will depend on your loved one's end-of-life wishes. Some people may want to continue receiving treatment for as long as possible, some may choose hospice and the comfort of their own home, and others may want to stop all treatments so the journey can be a bit less painful. Remember that you still have a voice in this, and you don't have to agree with the decisions your loved one makes.
If they want to continue receiving treatment, you can offer yourself as their support person so they know that someone will always be there for them as long as they need it. If hospice care is what they choose then remember to take advantage of all the resources you are provided with by the hospice company.
If your loved one has decided to stop receiving treatment, make sure that they know how much their life means to you and discuss your memories of them so they can pass knowing how important they were in your life. There are lessons here about living as well as dying.
We all want to be remembered and your loved one may want your help to document memories as well as write final letters to friends and families. You can help your loved one by providing them what they need such as writing utensils and paper. But also providing them things that may trigger their memory such as photos or keepsakes is another way to help your loved one during this time.
If your loved one is unable to write you can assist by documenting their thoughts and feelings on their behalf. And arranging to have these letters delivered. You also may want to consider any other memorial gifts that will help your loved one to be remembered during this time as well
Every situation is different and every end of life journey is personal - both to the deceased and to the caregiver. These are just a few of the more common things that might fall under your responsibilities as a caregiver at the end of life and will help you prepare for what lies ahead.
It's important for you to take care of yourself and your needs in order to be in the position to help someone else. Learn to say "no" or seek help if you need some time for yourself. Be sure to still eat, sleep, and exercise even if your loved one is sick.
It can be very difficult emotionally to see someone you love go through this process, so it's critical that you work on maintaining healthy emotional boundaries between yourself and your loved one. Be sure to get support from other family members or friends who can help you when it's time for you to have some me-time.
Here are some ways that you can take care of yourself while still being there for your loved one.
It's ok to ask for help. We have a tendency to want to handle everything ourselves, but sometimes you need help.
If you're feeling burned out, overwhelmed, or just need someone to talk to then allow yourself the time you deserve. You can't help your loved one if you are not in a position where you can give them your full attention.
A good night's rest is important for your health and well-being. If you're having trouble sleeping then consider setting up some quiet time during the day. You can listen to relaxing music, meditate, take a bath, read, practice yoga or just rest outside in the sun.
When stressed out it's easy to let your eating habits go down the drain. You need to maintain a good diet, even if you're not hungry.
If you don't feel like cooking then maybe consider having someone else come in and cook for your loved one or yourself. Try not to skip meals as this is the best way to end up with sugar highs and lows that will impact your mood, concentration, and energy.
Exercise is so important in maintaining good health, even if you don't feel like it . If the weather is nice then go for a walk or take your loved one with you, ask them if they'd like some fresh air. If it's not nice outside then consider going for a walk at the shopping mall, even if you don't buy anything.
Also, make sure that you see your doctor regularly and follow any treatment plan they make for you. This is important in maintaining your health as well as reducing stress which can be a trigger to illness.
If you are too overwhelmed to schedule anything then try taking things one day at a time. Ask your loved one what they think about spending some time together or doing something that you both enjoy with friends or other members of the family who want to help.
A great way to get help is by coordinating meal prep with other family members and friends. This will not only save time but also the worry of having to have a healthy meal ready to go for both you and your loved one. Apps such as Meal Train can help with coordinating.
As previously mentioned, be sure to pay attention to the foods that your loved one wants and enjoys. Further, take the time to plan a well-balanced diet to ensure your loved one is eating healthy and maintaining their nutrition.
Make sure you have some "you" time every day. Take the time to go for a walk, read a book, or watch your favorite TV show. This is just as important to maintaining good physical and mental health as taking care of meals and being there for your loved one.
Remember that this process can seem long and draining, so take the time to go out and do something with friends or family members.
Schedule these times with others so that you don't feel like your loved one is always wanting your attention. You can also consider having someone watch your loved one for a few hours while taking some much-deserved me-time. Some ideas might be:
Spa day. Take a day off and schedule a spa day. This is a great way to take time for yourself to relax and refresh.
Walk outside / go on a hike. Take a day to go outside and get some fresh air. Go for a walk, hike or bike ride and enjoy the outdoors. This is a great way to reset.
Hobby. If you have a hobby then take some time during the day or even at the end of the day to spend time on your hobby. This will give you a chance to take your mind off of things.
Seek counseling if it is wearing on you mentally. This can be draining and take a toll on your mental health. If you feel like your stress is becoming too much to handle then find someone who you can talk with for a few minutes. A social worker can provide you with referrals for any of the resources below.
Support Lines. You can get support from free phone hotlines where you are anonymous. You are not alone in how you feel, and reaching out for help is getting that weight off of your shoulders so you can focus on yourself.
Support groups that meet in person. Support groups can also be a great way to get through this. You can find support groups that meet in your community or at a hospital near you. You can find more information by contacting your local hospital and speaking with the social worker.
Professional counseling. If you don't feel like you can find the strength to go on and need some professional counseling then reach out to your doctor or contact a social worker at your local hospital. You can also find mental health care providers through insurance companies or by contacting your local hospital and speaking with a social worker. Remember that this process is long and it may be helpful to talk with someone who is not directly involved in caring for your loved one. You don't have to go through this alone, so reach out to those you trust for help.
Many people have to take time off from their jobs when a loved one is in need of extra care at home. If you know that this will put a strain on your finances then research some financial support available to you.
You can also contact the social worker or hospital staff member for referrals to charities or programs that may be able to help you with your financial situation.
You will be working closely with the medical team as you care for your loved one at home. Be sure that you get all of the training and support that you need from them so that caregivers like you can take the best possible care of your loved one and also keep yourself healthy.
Many service providers including hospitals, hospices, and nursing homes offer training and support sessions for caregivers. You can also contact the social worker or hospital staff member for referrals to these services.
Here are some additional things to keep in mind during this time.
Having everything readily accessible will make the process easier for everyone involved. Further, make sure that they have a living will and that everyone involved knows what is in it. This way there is no confusion about who they would want to make health care decisions for them if the time comes.
It's important to have an honest conversation with your loved one's doctor or healthcare provider so that you know what to expect. Many things can change as treatment progresses, and knowing all of the details ensures that everyone involved is on the same page about how events will unfold.
It's also important to know what their end-of-life plan is in case the patient can no longer speak for themselves. Make sure that you have discussed it with them so that you know what they want and can do what they wish. This is also a good time to talk about funeral arrangements with both your loved one as well as close family and friends.
For example, some people prefer to be cremated versus having a burial. If you need help figuring out the best plan you can read more about cremation versus burial here.
Also keeping in mind ways to commemorate your loved one as well as asking them how they would like to be remembered is important as well. If your loved one chooses cremation there are beautiful cremation urns that you can purchase and even cremation jewelry for close family.
If your loved one chooses a burial they can be remembered through photo engraved jewelry.
With so many options it is important to have these conversations with both your loved one as well as close family and friends.
If the patient's illness progresses and they require more care, then you may be eligible for certain medical equipment or home adaptation that can help. Be sure to speak with your doctor so that you know all of the available options. When caring for a loved one who is dying in your home, it's important to try and keep life as normal as possible for you and them.
While the situation may be difficult to deal with, try your best to maintain a sense of normalcy. Try to go about daily life in whatever way you would before their illness advanced. This will help keep the patient comfortable and allow everyone involved some time away from what is happening at home.
When a loved one is dying, you may experience many different emotions. It's important to speak with your doctor or healthcare provider about these feelings so that you can cope with them effectively. While taking care of someone who is dying can be difficult, it's important to maintain as much normalcy in the situation as possible. If there are some things that you're unsure of, then it's important to speak with your doctor or healthcare provider.
Yes, there are many different programs that offer financial aid for those going through the process of caring for a loved one who is dying. Here is a link to just a few of those programs.
It's difficult to say how long it will be until death occurs, but there are some signs that you can look out for. These include shallow breathing, irregular breathing, and changes in the patient's skin color. If you are unsure of what to do or where to go next, then speak with your doctor or call hospice services for further guidance.
Caring for someone who is dying can be difficult and emotionally draining. It's important to speak with your doctor or healthcare provider about what you're experiencing so that they can help provide coping mechanisms for you.
It may also help to speak with someone who has been through the process before. If you are suffering from an anxiety disorder, then it may be beneficial to speak with a mental health professional.
It's often easier for a patient to have care at home, but there are many different factors that influence this decision. If you do decide to provide care at home, then hospice services can help you manage.
Death can occur when the body has had too much damage done to it and cannot recover. There really is no limit on how long it can take for this to happen, but some illnesses advance more quickly than others. If you are unsure whether or not your loved one is dying, then speak with your doctor or call hospice services for further guidance.
There are some warning signs that may indicate when you need to call for further assistance. They include difficulty breathing, changes in skin color, and irregular heartbeat. Additionally, it's important to watch out for symptoms of depression or anxiety so that you can gain the right treatment as soon as possible.
An end-of-life caregiver is someone who helps provide care to a loved one in their home when they are dying.
It's difficult to say how you will react in a situation like this, but there are some things that may help you cope with the emotions. To find out what you can do to stay strong when a loved one is dying, click here.
The best way to care for a dying loved one is by doing what's needed and not trying to fill the sad loneliness with words. Spending time together, such as reading or watching TV can be comforting. Ensuring that their physical needs are met will help them feel more comfortable and at peace. When you do talk, let your words include hope and comfort rather than fear, anger or sadness because these emotions may make it difficult for your loved one to find relief before passing on.
These little things might seem insignificant but they can make a world of difference when your loved one is in pain and you can't do anything to ease it. And remember, if you are unsure about what to do or where to turn, then speak with your doctor or call hospice services for further guidance.
October 19, 2021 by Frances Kay