A Brief Topic Guide to the Site
All of the posts on this site can be divided into a series of topics that may become important for newer caregivers to learn about.
These topics are reflected in a series of Introductory posts that could be read together first to help make the site make more sense.
One way to begin is to read the following Posts first:
Intro to Family Caregiving
Intro to Advocacy and Communication
Intro to Self Care
Intro to Conflicts and Challenges
Intro to Skills (for Family Caregivers)
Intro to Care Needs and Plans
Intro to Safety
Intro to Mobility
Intro to Technology Tools
Intro to Support Teams
Intro to Emotional and Behavioral Changes
Intro to Legal and Financial Terms and Issues
Intro to Transitions (in different care settings)
Intro to End of Life (Planning and Grief)
Intro to Family Caregiving
While there are some men who take on the role of caregiving for a loved one, the overwhelming percentage of family caregivers are women. When they begin caring for a loved one, they usually also have their own lives and families. They may have spouses and children of their own. They may even be single. They have jobs and full lives.
When a family emergency occurs, those lives, those worlds get interrupted. Families get together and have conversations about their loved one. Sometimes they get the news that their family member may need assistance to help them live by themselves, or to continue to age in place. Someone will become that assistant, that caregiver.
Will your other family members leave their home to move in with your loved one with you? These are questions that come up from the very beginning. These situations sometimes have to be sorted out quickly.
Advocacy and Communication
Once you agree to take on the role of primary caregiver, you may have a whole lot of information and tasks thrown at you all at once. One of the most important roles you are going to have to take on is communication, both spoken and written.
You will have to speak for yourself and your loved one in a variety of different settings with vastly different groups of people typically in health care, social services, or government services. One of the largest roles you will play is that of Advocate.
You are the voice who amplifies the needs of your loved one. You may face problems within the healthcare system with health professionals who are understandably focused on one thing: making their patient well enough to go recover somewhere else.
It will be up to you to let medical professionals know if the patient isn’t getting what is needed during a hospital stay. It will be up to the caregiver to make sure medical professionals know when it seems clear that a patient is simply not ready for the recovery portion of care just yet.
And you are going to need to put as much of your experience as possible in writing, whether it is the hospital experience or daily activities at home. You will have a lot of duties that include paperwork, journal notes, and different types of recordkeeping. Start your notes from day one and set up a routine time for writing things down every day.
Creating a Safe Environment
If your loved one has not been released by the hospital or perhaps nursing home, medical professionals will require you to set up you or your loved one’s living space for maximum safety of your loved one.
If your loved one is designated as assisted living, you may have to make a lot of changes. You might have to remove rugs, make sure stairs have rails on both sides, make sure your bathroom has grab bars. You might have to change your showerhead so it can be held by hand.
You might even have to have a shower chair that will fit easily in your bathtub. A lot of these items may first come as a family expense, though eventually insurance may pay for some of it.
Care Assessment and Care Plans
At the same time, you will be heavily involved in assessments and plan making. Setting up your loved one’s home also involves special plans for emergencies. You are the primary caregiver and advocate for your loved one. This makes you the very first responder, so you need to know when to act, and who to contact first.
You will write contact lists and emergency numbers. You will institute a protocol for who is contacted depending on what situation is taking place. It is up to you to assess and create working plans to cover emergency medical situations, unexpected utility power disruption, and natural disasters. Hopefully you can get plans written out before your loved one returns home.
Companionship And Medical Management
You will become the constant in your loved one’s life. You will also become their closest companion over time. But as the primary caregiver you will have many responsibilities. So be sure to take advantage of technology, local groups and agencies, and any of the new tools that will make your life easier.
In addition to creating contacts and emergency plans, you play a huge role in household management, medical management, and record keeping.
You will try to handle health issues as they arise. You will need to know what normal status looks like so that you can recognize when something is not right. Know how to raise low blood sugar with regular items that should be around the house.
Keep track of household over-the-counter medications. You want to keep up with the drug lists: What they do-Why they have been prescribed- What the side effects are and how you might recognize them.
You need to be at every medical appointment. You need to be both listener and note taker. It will be up to you to ask questions with your loved one as part of the conversation so that everyone knows what the newest medical status is. These will be a huge part of your job.
You may provide different levels of mobility assistance and help with exercises in the physical and occupational realms.
In some situations you might need to step into the realm of cognitive support. Memory issues happen a lot. You may need to learn how to handle lapses in speech, and the frustration that comes from memory loss and difficulty getting your thoughts out.
You might find that hunting for things may take up a significant portion of your time.
Medical professionals may have you work with your loved one to improve some cognitive functions.
Emotional and Physical Challenges and Conflicts
Family relationships are complicated, but since you are the point person, you will have to deal with other family members. Remind them that when they are called on for some reason, it has to do with the health and/or well-being of their loved one. It is not about you or what they think of you.
And the bad news is that your loved one’s household will become your household. You will end up managing a good portion of typical household jobs: Cooking, Cleaning, Laundry, Budgeting and Finances, Groceries, Online Shopping, and Research.
Crisis Management
You need to be a total badass boss when it comes to Crisis Management. In a time of emergency, you must do your best to keep calm. By the time you experience your first emergency you would have already set up medical and social plans of action. (This includes packing a go bag for just in case).
You may call a nurse first or you may end up calling 911. Attempt to stay as calm as possible. 911 operators will walk you through questions they need answers to. They will tell you what you might need to do while you wait for emergency responders to arrive.
It will be up to you to know where information cards are located; have a medicine lists and hospital cards (on recent operations or procedures) ready; know about the operations your loved one has had in the past. First responders will ask for all of that information.
If your loved one is taken to a hospital emergency room, take the time to make sure you have everything the two of you might need for a hospital stay. Pack your electronics, blankets, a change of clothes, and your favorite snacks. Don’t forget your wallet and some cash if you have it on hand. And try to remember to pack as much patience as possible. Also try to remember that hospitals tend to be very cold. You might want sweaters or jackets with you.
Be aware of your loved one’s wishes when it comes to emergency medical care.
Use your advocacy skills, high-level communication skills, and listening skills.
Staying with your loved one 24/7 is a personal choice. But you want to try to be with them for as long as possible each day.
When your loved one is in the hospital they might be in so much pain that they don’t really concentrate on information medical professionals may be giving them. Even though it may look to the doctors/professionals like their patient understands exactly what they have been saying to them. This may not be the case.
If you aren’t there when the doctor comes through, but come to visit later, your loved one may not even remember that the doctor was in the room with them.
If you are there, you will be able to communicate with doctors, nurses and other health professionals to get a much more accurate a picture of what is really going on with your loved one
You need to listen to what they say and watch what is going on. You want to make sure your loved one is treated with dignity and respect.
As a caregiver you need to keep up with your loved one’s medical conditions; the possible treatment plans currently available, and new technology that might make your lives easier. That ongoing education is a must.
Advocacy and Communication
Advocacy is rooted in love and compassion. Empowerment may just be at the very heart of Advocacy. You will need to learn to navigate health care systems with confidence and resilience. It will empower your loved one and yourself.
Given the medical community, family relationships, and the world in general, Advocacy is a vital skill that lesbians and all caregivers are going to need. As caregiver you will actively be speaking up for your loved one’s well-being, respect, dignity, and personal wishes.
At some point in time, you will be speaking with all kinds of healthcare professionals who may not listen to you, or try to brush you off because they are too busy at the moment. You’re the one who must intervene when the doctor doesn’t seem to be listening to their patient for whatever reason.
You and/or your loved one could come face to face with many issues such as discrimination, cultural bias, and actual barriers to care. Try to recognize the challenges and actively respond to them. Every patient has certain rights. Make sure your loved ones get the treatment they need in a highly dignified manner.
But how do you do this? Through effective Communication. I won’t lie, as a lesbian family caregiver, communication has to become your super power. Once you become a caregiver you need to take the written and verbal communication skills you have, then actively work on upping your game.
You will be writing and talking to your family members, your support teams, and all manner of Healthcare Professionals, both in home care and in medical fields, and of course, the local emergency room. As a lesbian you have probably become aware that you sometimes need to be your own self advocate. As primary caregiver you will also become your loved one’s advocate.
In close proximity to your role as communicator will be your role as listener. You will be expected by everyone around you to practice active listening.
When working with your loved one you will be looking for clues as to their health status at any given time. Tap into your observation skills. They will become as important as communication and listening.
You will become aware of your loved one’s emotional, mental, and physical states. This is important so that you quickly recognize depression and other negative emotions. Then you can assess whether it is brought on by medications or it is personal.
Depression can be an issue that occurs in long-term health situations. And you will probably be there to witness it.
You will constantly deal with different types of medical professionals. Doctors may be abrupt and dismissive after giving you a short explanation of what’s going on. This is where you want to step in and ask questions. You want to find out as much as possible.
You want to be sure the Doctors know your loved one’s situations, and that your loved one knows what doctors are saying. You have to make sure that your loved one is always a part of the conversations.
You might consider staying with your loved one at the hospital 24/7. In some places, doctors make their rounds really early in the morning. They come into a room, wake a patient up and discuss their findings. Your loved one isn’t going to remember a word that anyone said to them.
Someone else needs to be there. Sure you can call the nurse’s desk for information, but it may take a lot of time before someone gets back to you. And the nursing staff may not know everything that the doctor mentioned. You can ask to have the doctor call you as well.
If you are a lesbian caring for a straight patient, your life status may or may not be known. But be aware that when it is known, there can be some stigma that may follow you.
If your loved one is a lesbian, you may have to actively make sure your loved one gets the care they are entitled to. Remember, communication and advocacy are your overarching superpowers. Eventually medical professionals will begin to listen to you, even if they do so reluctantly.
There is one more issue a caregiver should be aware of. Unfortunately not all medical professionals treat their patients well. If you see mistreatment happening you really need to report it.
Caregiving for family members can be a real challenge. You may have good relationships or you may have a more negative situation where family members have trouble accepting your life choices.
Expect some emotionally heated conversations. Unfortunately, it will be your job to always be the bigger person. Try to de-escalate all negative situations.
It will be up to you to remind everyone that their number one priority is the well-being of your family’s loved one. It doesn’t matter what issues they have with you because it is not about you. Hopefully your issues will pass without someone actively trying to get in your way.
Self Care
Self-care is a necessity for caregivers, including lesbian individuals who provide care for their loved ones. It is part of your job to learn to recognize the importance of self-care, learn to manage stress and burnout, and build a support network within your family AND within the local LGBTQ+ community.
Caregiving is physically, emotionally, and mentally demanding. Caregivers tend to neglect their own well-being in favor of caring for others. But self-care is essential for maintaining resilience, preventing burnout, and sustaining caregiving efforts in the long term.
Even though the bulk of your attention will always be on others, try to remember that self-care is something you need in order to keep taking care of others. You must give time and attention to yourself. Be sure to nurture their your physical, emotional, and spiritual needs as well as your loved one’s.
Steps you can take to keep from reaching the burn-out point.
Set very clear boundaries to protect your time, energy, and emotional health. Learn to say no. Communicate your boundaries assertively and without guilt. Prioritize your needs. This is essential for effective caregiving and maintaining balance in your life.
Develop a consistent self-care routine that incorporates activities and practices tailored to your needs and preferences. Schedule regular time for self-care into your daily or weekly routine, treating it as a non-negotiable priority. Find rituals that nourish your body, mind, and soul.
Don’t hesitate to seek professional support from therapists, counselors, or support groups specializing in LGBTQ+ caregiving and mental health. Talking to a trained professional can provide you with valuable insights, coping strategies, and emotional validation as you navigate the challenges of caregiving and family conflicts.
Build a support network within the LGBTQ+ community. It can provide you with emotional support, understanding, and solidarity for lesbian caregivers.
Some Strategies for Building a Support Network:
Participating in LGBTQ+ caregiver support groups or online forums can connect caregivers with peers who share similar experiences and challenges.
Attending LGBTQ+ events, social gatherings, or community activities can help caregivers forge connections and build supportive relationships within the community.
Seeking support from LGBTQ+-affirming therapists or counselors can provide a safe space for caregivers to explore their feelings, process emotions, and develop coping strategies.
Incorporate mindfulness and stress management techniques into your daily life to cultivate resilience and reduce the impact of stressors. Whether it’s practicing deep breathing exercises, progressive muscle relaxation, or mindfulness meditation, prioritize activities that help you stay grounded, centered, and present in the moment.
Surrounding yourself with supportive friends, family members, or fellow caregivers who understand and validate your experiences. Cultivate meaningful connections with individuals who uplift and encourage you, providing a safe space to share your thoughts, feelings, and challenges without judgment.
Be sure to monitor your own mental health. Stay attuned to your mental health and seek help if you experience persistent feelings of sadness, anxiety, or overwhelm. Pay attention to warning signs such as changes in sleep patterns, appetite, or mood, and prioritize seeking professional assistance if needed. Remember that prioritizing your mental health is an essential aspect of effective caregiving and overall well-being.
By prioritizing self-care, implementing practical strategies for managing stress, and building a support network within the LGBTQ+ community, lesbian caregivers can cultivate resilience, maintain well-being, and navigate the challenges of caregiving.
Intro to Dealing With Conflict
Lesbian family caregivers aren’t just tasked with the job of car in for a loved one. They are also tasked with negotiating family relationships at the same time. If there were tensions in the past, expect those tensions to pop back up over time. This challenge can take on a high-level of complexity in negotiating relationships.
Best ways to deal with Conflict
Take a step back from your personal feelings and emotions even if they are highly justified. You need to practice on empathy for the other party parties involved. De-escalate where you can. You have to be the bigger person. Even when you’ve had enough and just don’t want to anymore.
Be an active listener. Even if you totally disagree, see if compromise is possible. Try to find some common ground.
Your Number One Job dealing with bad situations cannot be stressed enough: prioritize self-care. Make it part of your daily routine. You must maintain your physical and emotional well-being. This will make you a better caregiver.
Enforce those boundaries. Build a caregiver support network along side your loved one’s support networks. Best case scenario, family members put aside their differences in the best interest of the loved one.
Embrace conflict with as much understanding and compassion as possible. Hope for family support despite what might continue to be a somewhat negative relationship.
Remind people it isn’t about you or about them. It is about the care and well being of your loved one.
You are going to need very high levels of communication skills. You are going to spend a lot of time speaking up for your loved one and for yourself. As a lesbian you are probably used to situations where you could literally choose between totally going off on someone and actively attempting to get things calmed down.
Take a breath. Take a step backward and try to verbally de-escalate what could end up very badly. You have an overarching goal: You want to keep the team together in order to provide the best possible outcomes for your loved one.
Negative situations serve no one well. It may be up to you to form those support networks even knowing things might become very negative and you will have to deal with that.
Know that everyone might never be on your side. Some might even try to get in your way. Know your relatives. Keep your expectations real.
If things go bad, be firm about the boundaries that you set-up; and pick your battles carefully. Care giving is hard work on the best of days. Know that it is vitally important to seek professional support when you need it. You also need to practice self-care on a daily basis.
If loved ones (relatives) are open to it, educate them on what it means for you to be a lesbian. Explain about the layers it adds to every situation. Explain how valuable their support can be. But only if they are open to it. Know that you will probably use every Conflict Resolution strategy you know about before you reach the end of your time as family caregiver.
An Intro to Skills a Caregiver Might Need to Cultivate
Practical Skills are the skills you will use every day while caring for your loved one. They may seem like daily duties because some of them will become regular duties. Skills will be needed in personal care, mobility and companionship, running your loved one’s household, medical management, record keeping, advocacy, and crisis management.
Skills you may need to brush up on are: communication, advocacy, compassion, empathy, and dedication to the well-being of others.
Personal Care
You may be needed to help a loved one with basic ADLs-( activities typically done every day). You may not need to do all of them. You may do just the tasks your loved one now needs help with. It could be grooming, dressing, toileting, bathing, even cooking and feeding.
Medical Management
There will be a number of medication tasks that will be up to you to take care of. Expect to deal with schedules, prescription renewals, portions, what specific medications are for, or even what their side effects can be.
You may need to monitor certain vital signs daily. Over time you will accumulate the tools you need to do that. Four basic items you will need, often include: a stethoscope, an oxygen reader, a blood pressure cuff, and a thermometer.
If your loved one is a diabetic you may need to administer lancet shots and check blood sugar. You might learn how to handle blood sugar too low or too high. You might learn how to raise low blood sugar with regular items that should be around the house.
If your loved one has mobility issues you may be responsible for moving around in the home, and all transport outside the home.
Almost all of these things will be part of your daily routine. Depending on the health of your loved one you also might give daily shots, breathing treatments etc. You might also have to assist with daily exercises. In some situations you might need to step into the realm of cognitive support. Medical professionals may have you work with your loved one to improve cognitive functions.
Memory issues happen a lot. You may need to learn how to handle lapses in speech-frustration. You could also play hunt the keys-Glasses etc. Hunting for things may take up a significant portion of your time.
You will end up learning about whatever may be part of your loved one’s treatment plan. It will be up to you to help your loved one stay as independent as possible for as long as possible.
Household Management
You may be doing meal prep or even all the cooking. This is an area you may wish to delegate to others, if expenses will allow for it, or if other family members take it on.
Your loved one’s household will become your household. You will end up managing a good portion of typical household jobs: cooking, cleaning, laundry, finances, groceries, online shopping, and research.
Daily Mobility
If your loved one has mobility issues you may be responsible for moving around in the home, and all transport outside the home.
Record Keeping
As the primary caregiver, you need to keep track of nearly everything going on in the life of your loved one. You will probably work with medical and health professionals to create your loved one’s treatment plans. You will be the one who sets up the family emergency plans. You will be recording vital signs. You will be keeping track of all medication information.
And you need to record the physical, mental, and emotional status of your loved one. It is important to recognize when your loved one is in pain, distress, anger, frustration, even depression. Recording this information may help you do that.
Communication and Advocacy
One of the largest roles you will play is that of Advocate. You are the voice who amplifies the needs of your loved one. You may face problems within the healthcare system, problems getting you and your loved one the health, governmental, or legal support your loved one is entitled to or qualifies for.
You and your loved one should always try to make sure you are on the same page. Communication and collaboration are necessary to build a relationship based on trust.
Communicate, listen, treat your loved one with respect and dignity. Your loved one deserves that.
Ask questions and raise concerns over issues you may have noticed. If there are pets in the house you may need to learn about wound care. Your loved one could be taking medications that cause blood thinning. Find out whether your loved one bleeds a lot if getting a cut or scrape. It sounds small, but it can turn into a huge issue.
You will become responsible for coordinating all of your loved one’s medical care You will deal with an entire host of healthcare professionals, so you need to communicate clearly. You need to advocate for your loved one.
When dealing with health professionals and everyone else it is up to you to make sure your loved one gets the best treatment possible. If you see any kind of possible discrimination, don’t stay silent. Call it out.
Question the treatment plans and make sure everyone is on the same page. Make sure that your loved one understands what is going on and is in on the conversation. Make sure your loved ones are treated with respect and dignity.
Crisis Management
You need to be a total badass boss when it comes to Crisis Management. In a time of emergency do your best to keep calm. By the time you experience your first emergency you would have already set up Medical and Social plans of action. You may call a nurse first or you may end up calling 911. Stay as calm as possible. 911 operators will walk you thru questions they need answers to.
They will tell you what you might need to do while you wait for emergency responders to arrive.
Know where information cards are located. Have a medicine list ready. Know about the operations your loved one has had in the past. If your loved one is taken to a hospital emergency room, take the time to make sure you have everything the two of you might need for a hospital stay.
You might pack up your electronics, blankets, a change of clothes, favorite snacks, your wallet, and some cash if you have it on hand. Hospitals keep room temperatures a little on the cold side. You might want to plan for that.
Be aware of your loved one’s wishes when it comes to emergency medical care. Use your advocacy skills because you are going to need them. You will be using high level communication skills.
Staying with your loved one 24/7 is a personal choice. But when a medical emergency occurs, your loved one may spend their energies focused on the pain, or drugged up. While they may seem like they are cognizant of what is going on around them, they rarely remember anything that is going on.
Doctors in some hospitals make their rounds early in the morning. Typically a patient is asleep. The doctor may wake the patient up then hold an entire conversation with them, fully believing that the patient knows and understands what was said. But if you go see your loved one and asked what the doctors had to say, they remember very little.
As caregiver, you want to try to be with them for as long as possible each day. You will need to communicate with doctors, nurses, and others. Then listen to what they say is going on. Make sure you ask questions. You want to make sure you understand exactly what is going on, while making sure that your loved one is treated with dignity and respect.
You will always have to be learning. You need to keep up with your loved one’s medical conditions, their medications and the side effects of those medications, and the possible treatment plans currently available. Ongoing education is a must. With AI technology, things are changing rapidly, and it may help you keep up with what’s going on as it pertains to the needs of your loved one.
Intro to Care Needs and Plans
When you are chosen/decide to become your loved one’s caregiver, you will need to learn about the immediate status of your loved one. Before you can help them you have to know what they are capable of and what they will need help with.
Healthcare professionals typically do a majority of early assessments of patients. But you may be asked to observe your loved one’s behavior at home to see if something was missed, or something is no longer necessary.
Why is this initial assessment important?
You need to know if your loved one’s living space is safe for them. If they have tools that will help with mobility shortcomings and safety issues. You need to know if, and how well your loved one functions on a daily basis. What do they need help with now?
You also need to know their current mindset. Are they handling changes well, or do they get frustrated with knowing there are things they used to do, but now really have to struggle with?
You need to know these things because you are the one who will work with health and welfare providers to come up with plans that will hopefully address any issues that come up.
Assessment of care needs can take many forms, and usually caregivers can get much of the needed information from health care professionals, family members who have been close to your loved one, and even your own self-assessment after seeing your loved one and hearing the story of what has been going on with them. This step is probably more important than you think. It is imperative to know where you are beginning. You need that baseline before you can do anything.
Care Plans
It could help you immensely to put together a realistic care plan after you have talked with everyone about the abilities and disabilities of your loved one.
The medical professionals will already have their plans begun. But you have to look at multiple factors and situations. Your care plan needs to be designed to be a kind of on the job guide of what needs to be done if a particular situation comes up. It will go well beyond what your loved one’s healthcare team has in store.
Before your loved one can remain at home, a social service team will come into the home and evaluate it in light of your loved one’s new situation. They will assess the building for safety issues. They may give you a list of things you have to change in the house in order for a loved one to come home. They may even offer some suggestions for equipment that can make it easier for a patient to do some life tasks on their own.
Care plans should be designed to help you in a variety of possible emergency situations. Your loved one may need treatment for a disease that can theoretically be done at home, like insulin shots or other shots that may cover a more temporary issue that has come up. You may notice some side effects from new medications interacting with old ones.
Or you may have a house emergency in the guise of a Tornado, fire, or flood. You need to know exactly how that situation is going to be handled.
You want to put in writing what your plan of action will be. Know what activities and exercises you might have to do, and what medications may be scheduled and when they are scheduled.
Keeping it all in your head sets you up to fail. If you need help, or something happens to you, other family members are going to need help when stepping in to take over for you. So write it all down. It may even become your working checklist.
To recap:
Your care plan will probably cover: Health Professional and Family Contacts, The Healthcare Team’s Medical Plans, Emergency Plans, and Daily Activities. It is not static. It may change a lot over time.
Intro to Safe Environments
Creating a supportive and safe environment for your loved one is not just important. It is essential. A calm safe living space and structured daily routines promote emotional well-being and independence. So how do you design a calm space that supports emotional well-being and reduces anxiety?
Start by trying set up the house so that rooms are comfortable, safe, and conducive to relaxation. Begin by minimizing any clutter. Make sure there is adequate lighting. Try to incorporate soothing colors, familiar objects, and comforting textures in each room. Create designated areas for relaxation or sensory stimulation that can also provide your loved one with opportunities to unwind and engage in activities that promote emotional comfort and stability.
Remember that familiarity is a powerful tool for reducing anxiety and promoting a sense of security. You want to try to maintain a familiar and consistent environment by preserving familiar routines, belongings, and surroundings. Avoiding unnecessary changes or disruptions can minimize stress and confusion, leading to a sense of stability and predictability that promotes emotional well-being.
Establishing predictability and routine in daily activities may help your loved one feel more in control of their environment, which in turn, reduces anxiety. You can, and should create daily schedules that include regular mealtimes, activities, and rest periods, so that everyone knows what to expect and when to expect it.
Add calendars or task lists to help reinforce routines and provide visual cues. A firm routine can promote calmness. It can decrease some of the anxiety that might stem from too many changes.
Balancing independence and support is essential for empowering your loved one. You really want them to maintain their autonomy even while they receive the assistance they need. You should provide opportunities for your loved one to fully participate in daily tasks and decision-making where it is possible for them to do so.
Be sure to respect their preferences and capabilities. Offering a few choices, providing encouragement, and offering assistance where needed can help your loved one feel empowered and supported. This provides a sense of dignity and self-esteem.
As the primary caregiver you will have to learn about the importance of creating a supportive environment, designing a calm living space, and structuring daily routines to promote the emotional well-being and independence of your loved one. You can enhance the quality of life for your loved one. Hopefully you will be able to create an environment that promotes comfort, security, and dignity.
Intro to Mobility
If you as caregiver are at your loved one’s home and medical professionals have deemed it possible that they can come home, a number of things have to happen before official approval is given. Hospital and medical professionals will only release patients when they know someone will be there to help them, and the home environment is safe.
They also require a social service check of the home. A person will walk through the home and then give the caregiver a list of their required recommendations for patient safety. They may also ask about members of the family who will live in the home to try to ensure physical safety from elder abuse.
If there are mobility and/or issues you may have to remove rugs, put up safety bars, secure railings on flights of stairs. They may require you to have certain medical tools on hand-blood pressure, oxygen, stethoscope, thermometer, and even diabetic equipment if your loved one has blood sugar issues. This is on top of what your typical medicine cabinet should already have on hand.
You may need to make sure you have certain personal assistance items like reachers, back scratchers, magnifying glass, canes, walkers, or wheelchairs, and good lighting in the house.
There are some situations where full room renovations may need to occur. Or when the house is not suitable for a person with fragile balance, and difficulty walking or even moving. It might not be financially feasible to set up a kitchen suitable for someone who now needs a wheelchair.
One might have to consider a move to a one level granny pod that can be specifically set up for the wheelchair bound and a caregiver. Again, financial situations play a big role in what people can do for loved ones who suddenly need help in ways they have never needed before.
A lot of these items may end up being a personal expense, at least at first. It may be paid for by insurance later. This can mean that you often have to keep up with your loved ones insurance-based allowances.
But no matter what, there will always be out of pocket expenses. It can be a good idea to make sure you have a medical miscellaneous category in your loved one’s budget.
Here are some tools for seniors facing challenges in performing simple tasks:
Grab Bars:
You want to put them in bathrooms, near toilets, and in the shower or bathtub. They can provide support and stability for seniors when standing, sitting, or moving in slippery areas.
Raised Toilet Seats:
It eases the process of sitting down and standing up from the toilet, reducing strain on the knees and hips.
Adaptive Kitchen Tools:
Some tools include ergonomically designed utensils, easy-grip cutlery, and adaptive kitchen gadgets. They can help your loved one stay independent in the kitchen. There are tools that help with meal preparation, cooking, and eating.
Reacher or Grabber Tool:
Enables seniors to grasp and retrieve items without bending or stretching. You might want to have more than one in the house. They are very handy tools. They can be used throughout the house, especially in areas with items that are hard to reach.
Walking Aids:
Some mobility tools like canes, walkers, rollators, even wheelchairs may be needed to get around inside the house. They provide stability and support while walking, reducing the risk of falls.
Automatic Pill Dispenser:
They help seniors keep track of medications and ensure they take the right dosage at the right time. They are typically refilled weekly, by your loved one, or you.
Lift Chairs:
They can assist seniors in standing up or sitting down more easily, particularly for those with mobility issues.
Stair Lifts:
They help with movement between different levels of the house for seniors with limited mobility.
Non-Slip Mats and Rugs:
You might want to put them in high-risk areas such as bathrooms and kitchens. You want to do everything you can to reduce the risk of slips and falls.
Large-Button Phones or Smart phones with Accessibility Features:
Do what you can to make it easier for seniors with visual or dexterity challenges to connect with others. Social interactions can be a positive influence on your loved one.
Voice-Activated Assistants:
They can make it easier for seniors to control lights, thermostats, and other devices using voice commands, promoting convenience.
Magnifying Glasses and Large-Print Books:
They aid seniors with visual impairments in reading and other close-up tasks. They can be important when helping your loved one get back to hobbies that they may love.
Easy-to-Use Remote Controls and Phones:
These tools can simplify the process of operating televisions and other entertainment devices.
Adaptive Clothing:
See if you can find clothing with Velcro or magnetic closures. It makes dressing and undressing easier, especially for seniors with limited dexterity.
Personal Emergency Response System (PERS):
Typically these can be worn as a pendant or bracelet. They can provide a quick way for seniors to call for help in case of an emergency.
When considering tools for seniors with declining physical capabilities, it’s essential to assess their specific needs and preferences. Consulting with healthcare professionals, occupational therapists, or other experts can help determine the most suitable assistive devices for individual situations.
An Intro to Technology Tools
Don’t forget Internet research into platforms and applications (apps) that can make your caregiving life easier. They can include:
· TeleHealth and Virtual Health Care
· Remote Monitoring and Wearables
· Phone and Medical Reminders
· Smarthome features
· Legal and record keeping apps
While technology can really help to streamline caregiving tasks, yet another skill a caregiver needs is computer literacy. You need the tools that provide up to date information in the caregiving arena. One of your tasks will focus on keeping up to date with new information and learning to use it to your advantage.
Computers and new information can equal a learning curve, time devoted to learning something that could have been spent doing something else entirely. But it has to be done.
This is one of the reasons it helps to have a built up support team. Some of the issues that will come up demand time away from being with your loved one. But someone else can be there to give you the time you need.
Introduction to Caregiving Apps
There are online apps that are now being used to help both caregivers and the patients they are caring for. One type of online platform is referred to as care coordination.
This is a tool that allows for multiple groups of people to share information with each other, organize information, and collaborate to find solutions to problems together.
It can all happen much more rapidly online, saving caregivers a lot of time. It also allows for situations where multiple caregivers might need direct access to personal information to collaborate with each other as needed.
It makes it easier to set up care plans, divide up caregiving tasks, collect stats, and organize information necessary to both personal and health issues of your loved one.
It can be life saving to have information organized and sharable, especially in circumstances where there is a sudden trip to the hospital.
These experiences can be emotional and you aren’t always clear-headed enough to remember everything that you might need. Having your loved one’s medical history instantly available can be helpful during a hospital stay.
An ongoing list of medications and how your loved one reacts to those meds is one of those things that you can forget as you gather materials for trips to the hospital. Having them organized and easily accessible is a massive time saver.
You can also use many types of platforms to share ongoing information with family members. Perhaps keeping loved ones informed can help alleviate fears due to lack on information, and reduce conflicts between family members.
Telehealth and Virtual Healthcare services are offered on phone and internet platforms. While Telehealth isn’t particularly new, it was extremely helpful during the Covid 19 shelter in place event.
After people began going out into the world again, Telehealth slacked off. But it is a great tool, especially for patients who have reached the point where going to doctor appointments become way too much of a burden and chore.
While it may not be fiscally feasible for everyone, there are smarthome features and devices that can be of great assistance to families caring for loved ones who are aging in place. Smarthomes can be set up to enhance safety and accessibility for your loved one’s life.
From smart lighting, to automatic thermostats and security systems, the home itself can become a tool in the caregiver’s toolbox.
Within the home you would have access to voice assistants and speakers, an upgrade to your nanny/baby cams. They are hands free, which can be freeing for those who have issues such as arthritis that can make it difficult to hold items for any length of time.
They can offer up medicine reminders throughout the day without the need to have a person call and do that. They can also be a connection between family and friends who want to check in on your loved one without the added burden on a loved one to have to prepare for visitors.
Other tech tools not to forget about can include smart glasses and hearing aids. Every day new enhancements in hearing aids are being studied and improved.
There are tons of improvements in the category of wearable devices as well. Beyond remote safety monitoring, fitness apps can track vital signs, activity patterns, and many other health metrics that can make information about your loved ones readily available to be passed along to medical professionals.
When looking at tools and applications that put people online, it becomes important to consider safety and security. Data is precious and medical information is and should continue to be private. Look for platforms that understand this and use those over fairly open platforms.
These platforms can be tools that help to facilitate conversation, help with organization, and offer up support for caregivers, families, and patients. And even monitor health issues remotely.
Many of these tools are helpful to both the patients and the caregivers. When understood, they can provide information more quickly, and take tasks off the already full caregiver’s plate.
Though Tech tools will not replace you yet, they can assist you with a variety of caregiving tasks that will make the caregivers life a lot easier. You’ll be able to track medical stats that you may need to pass on to medical professionals.
With the advent of AI, we are beginning to see more advances and higher levels of capacity in remote patient monitoring. These systems collect and analyze health data on an on-going basis. This can lead to earlier detection of issues, allowing for earlier interventions to nip problems in the bud.
AI also enhances predictive healthcare on an individual level. The AI can identify patterns and problems faster than human beings might. These data points can help caregivers target problems before they become too large.
Alongside AI, other technologies can play larger and larger roles in patient care. Some of these technologies include: Robotics and Automation, AR, or Augmented Reality, and VR, or Virtual Reality.
Robotics and Automation can help with real world physical tasks that can include mobility support, household chores, even medication management. There are automated pill dispensers that can be set up to dispense the proper medications as needed.
Maybe someday in the very near future there will be a case to be made for Robotics, automation, and companionship.
Right now AR and VR can offer their expertise in therapeutic areas. Cognitive stimulation-even virtual training for caregivers and family members could become a reality soon. They may even help within areas of pain management for those dealing with all manner of chronic pain.
There are experiments tracking AR and VR to see how the well being of patients can be improved. There has always been the knowledge that companionship sparks more positive attitudes in patients, and health often improves as a patient’s attitude improves.
There are also other apps and platform types you can leverage to make your tasks easier. There are tons of financial apps available to organize household budgets, to help manage medications, and to help put together legal documents you are going to need. These apps not only organize materials, they can help you put together the plans that are uniquely suited to you and your loved one’s situation. Don’t overlook them. They could be of great assistance to you.
Specifically for the caregiver, there are a number of stress reduction apps available. You might find yoga, deep breathing, relaxation, even guided imagery apps to help with that stress reduction. You can track your mental and emotional health and stay aware of how close you might be to burnout, before it hits you all at once.
You’ll find quick and fairly easy access to mental health care advisors, when you need someone to talk to or a place to vent when things begin to get to you. And there will be times that they will.
There are also apps and platforms for getting together with other caregivers who may be able to help with problems you are having, or simply to listen to what is happening with you at any given time.
There are also numerous training apps and websites that can teach caregivers how to do caregiving in healthy and manageable ways.
These days technology plays larger and larger roles in healthcare and healthcare management. It continues to play a heavy role in medicine management and chronic disease management. The role of technology in Alzheimer’s and dementia is expanding daily. There are many apps that focus on Cognitive and memory enhancement as well.
As a primary caregiver, it could help you immensely to keep up to date on what’s available to help both you and your loved one.
An Intro to Support Teams
When you begin your family care journey, things may already be in progress with regard to your loved one’s cure, but the care may not really be organized in a cohesive manner. That is going to be up to you.
It can be a lifesaver for you to actively put together a number of different types of support into play. Don’t be afraid to ask for this help. In fact, you are the primary point person. You might want to demand the help you need upfront, so that everyone knows the situation and doesn’t devalue your position or try to undermine you.
Your healthcare team is probably in place by the time you become your loved one’s caregiver. But you want to be sure family members are up to speed on what’s going on; and what you need to make life better for your loved one. Discussions with family on your loved one’s care needs should already be in progress.
Don’t hesitate to ask if family members, or even friends and neighbors want to, and are able to help either tangibly or monetarily. They can sit with your loved one and/or provide household assistance. They can even provide cooking or laundry services.
There are a lot of care agencies available to you if your income (or a combined family income) can make non-family help a part of your working team.
Local communities may offer Senior day care. There may even be a meals on wheels program. Paid and Volunteer Home Health Aides can be hired to come in once or twice a week and help with the workload.
Use your local resources. Running a household and Caregiving are two different jobs. Caregiving is your first priority. Do delegate things that you can. Don’t try to do everything yourself.
It is also important to remember that you need support too. As a lesbian you might want to keep up with the local LGBTQ community. You may have access to counselors who may offer support while you went when needed.
Local LGBTQ+ Resources may give you back a connection to community that you may feel like you are losing. Over time, this can become an issue.
People don’t say it enough but self-care really is all-important for caregivers. Delegating tasks, keeping an eye on stress, and learning the very hard task of recognizing when you are getting close to burnout is absolutely essential. Healthcare professionals recognize this. One common support system offered for care-givers is called Respite Care.
What happens in Respite Care is that a facility with space will take your loved one for a short span of time to give you time to rest on your own. It exists to help prevent exhaustion and burnout for caregivers. It can be a lifeline if you need it.
To Recap:
Types of support systems often include:
Family
Extended local family
Friends and Neighbors
Hired assistants
Home care assistants
Volunteer care assistants
Healthcare Professionals
Councilors
Respite care
Intro to Emotional and Behavioral Changes in Loved Ones
When you become a family caregiver, you also become the constant companion of a loved one. You will be there for all the highs and lows that will occur. Your job is to look out for some of those changes in mood and behavior. Mood swings and agitation can occur for a lot of reasons.
It might be caused by pain, discomfort, medication side effects, or changes in routine. Sometimes it can be a part of a reaction to medications. Sometimes a loved one is simply getting frustrated with all the things they can no longer do.
You might begin to notice that there are triggers or patterns that may be contributing to agitation or distress. By addressing underlying causes and providing reassurance and support, you may be able to help to alleviate some of those mood swings.
Triggers can sometimes include environmental factors, physical discomfort, unmet needs, or even changes in routine. Other factors such as time of day, social interactions, and environmental stimuli may also contribute to behavioral changes.
If you can learn to identify even a few of those potential triggers, you may be able to counteract them and create a less stressful environment. You’ll want to de-escalate movements from confusion to frustration and anger.
Behavioral changes in loved ones can present significant challenges for caregivers, adding an extra layer of complexity to the caregiving experience.
Whether due to cognitive decline, illness, or other factors, behavioral changes such as agitation, aggression, or withdrawal can strain caregiver relationships and require specialized intervention.
Recognizing the complexity of these behavioral changes is crucial for caregivers to respond empathetically and effectively. By developing a deeper understanding of behavioral dynamics, you can provide more effective support and enhance the quality of care for your loved one.
Caregivers should be aware of these behavioral manifestations and recognize that they may fluctuate in severity and frequency over time. Understanding the underlying neurological changes and adapting caregiving approaches accordingly is essential.
As a family caregiver, this may not be in your wheelhouse. It might be time to invite experts into the equation and use their knowledge and experience wherever possible.
Caregiving can evoke a wide range of emotions, including joy, fulfillment, guilt, sadness, and exhaustion. You may experience conflicting emotions as you learn how difficult a role you are going to play in your loved one’s world.
Understanding the emotional impact of caregiving is essential. Not only are you responsible for the needs of your loved one, you are also responsible for recognizing your own needs.
Over time you may find that you need some mental and emotional support for yourself as well. It is important that you keep an eye on your own stress levels. Learn stress reduction techniques and practice them. Self Care becomes more and more important over time.
Intro to Legal and Financial Issues in Caregiving
If/When you can afford to get a lawyer, get one. Caregivers often have to initiate conversations with loved ones concerning a loved one’s personal assets, and their end of life decisions.
You’ll be exposed to Wills and Trusts, Estate Management, Funeral and Burial Planning, and different kinds of Health Directives. These are all personal and financial wishes and situations that can/will occur over time. Best case scenario, you don’t ignore these issues until it is too late.
When a person dies, several things happen very quickly. No matter how prepared you are, you can never be prepared enough. You don’t want to have to make decisions while you and your other family members are in a highly emotional state. Do these things while you are clear-headed.
Your loved one’s estate is made up of debts and assets. You don’t want to tie up any possible assets in Probate. Probate is a legal process that eats up your time and your money. Depending on your economic situation Probate can go on for a very long period of time.
Depending on where you live, there is a general standard for time periods involved in each step of the Probate process. You have three months to register with the Probate office but you don’t actually have to go into Probate. That takes a lawyer, a number of fees, and a book’s worth of legal forms. It also takes family agreement.
Then an Executor is appointed. Any creditor with a debt belonging to your loved one has to be contacted. Then they have six months to respond. That is already 9 months after the death of your loved one that you have to pay to keep up the utilities, property taxes, and other bills, while you wait for Probate to end.
Probate is a nightmare. Do everything you can to avoid it. Some ideas are about putting specifics in Wills and Trusts. There is also a Pay on Death scenario that may be used, and something called Quitdeeds.
Basically, take an inventory of all your loved one’s assets and make sure accounts and deeds have additional names on them, or everything is in trusts. This can keep assets out of probate.
There are many healthcare related situations and issues that also have legal aspects.
You may have loved one’s who have already taken care of issues prior to events that now require a caregiver. If that is the case, you may be required to know where everything is located so events can be put in motion when necessary.
Your loved one may need to appoint people to do various jobs There are several legal forms for that.
POA (Power of Attorney) deals with legal and financial aspects of a loved one’s life.
A Healthcare Power of Attorney or a Living Will beneficiary has to have many conversations with their loved one to get a true sense of what their loved one wants to occur medically over the course of their illness or incapacitation. Then those decisions made by your loved one need to get put into legal documents.
The Healthcare POA relays those decisions to medical professionals usually in high level stress times like a full-blown hospital emergency.
There are special Health Instructions sometimes called Advanced Directives that may apply to your situation.
There are full DNR’s. (DNR Means Do Not Resuscitate). If a patient has a DNR, Medical Professionals have specific health points when they stop attempting to keep a patient alive.
No one has to use a DNR. It is an option some people want as the quality of life can matter more than having more time; but being unable to do what they love.
Another issue that may be discussed is called Guardianship and/or Conservatorship. Guardianship and Conservatorship are legal arrangements designed to protect individuals who are unable to make decisions for themselves due to incapacity or disability.
Behavioral changes in your loved one can have legal implications that caregivers need to navigate effectively. This might trigger conversations about guardianship and decision-making, and who speaks for the loved one and acts on their behalf.
It is an issue that can happen when your loved one has cognitive issues or might just be an addict. Again, it will be up to the caregiver to make sure their loved one’s wishes and desires are honored and dignity is upheld.
Legal forms really do need to be in place while you are caregiving. Not only do you need to know all the wishes of your loved one, you will be the one who has to advocate for those wishes when dealing with the medical community. There may be times when your loved one won’t be able to speak for themselves.
Medical Professionals, legal professionals, and your family members must understand what those wishes are. The caregiver’s job is to communicate with each of these groups and make it known what your loved one wants.
You may have situations where family members don’t always agree. It can fall to the caregiver to do what the loved one wishes, then deal with the fallout. Unfortunately these issues tend to cause a lot of rifts between family members. That is one of many of the costs of care giving.
In advocating for your loved one’s wishes and rights you may come across the term” ethical decision-making!” You want your loved one to have high quality care done with dignity. Medical Professionals need to recognize the autonomy of every patient while balancing decisions based on the care and safety of their patients.
This situation can occur when a patient is making decisions that hurt them. A lot of times the illness involved is cognitive. Thought processes have changed for the patient and they aren’t making good decisions.
They may want to do or not do things that are in their best interest. A caregiver is going to have to decide between keeping a loved one safe and alive versus agreeing with the loved one’s current desires while not in a state that is typical of themselves.
Some techniques a caregiver can fall back on include shared decision-making and informed consent. But don’t forget that there will always be ongoing communications with everyone involved.
If things get out of hand Ethical Committees are professionals who may be able to help. It can be impossibly nerve-racking trying to negotiate the intersections of care with dignity; the knowledge that a loved one has had behavioral changes that could lead to self harm, and the wishes of a loved one stated when they were in their healthier state of mind.
An Intro into Types of Transitions in Caregiving
What are types of Transitional Care? Basically we are talking about moving between different care settings; and the effects they could have on your lives when a set routine at home gets interrupted.
Because your loved one may be moving between facilities, you must put on your cloak of advocacy. You will be speaking for your loved one to groups of professionals who are meeting your loved one for the first time. You know things they don’t. You have to make sure they know some of what you know so that they can put your loved one in the best possible position.
You may have to be sure they know very specifically what your loved one’s wishes are. You will be the one who gets to deal with all the medical and legal paperwork unless someone else in the family has been given health attorney power. It is important to know these things before an emergency occurs.
Let’s say that you’re at home with your loved one, but they get sick. You have to get your loved one to a hospital to be checked out. At the hospital a determination is made. Should the patient need hospital care or is home care going to provide what the patient needs?
If they are admitted you’ve moved from Home To Hospital. When away from home and sick, your loved one may feel alone and highly vulnerable. These days you can stay 24/7 at the hospital with a loved one.
But why would you choose to do that? In many cases, when someone is sick, they may seem cognitively sound and able to understand what medical professionals say to them, but that is not necessarily the reality.
People who are sick put their primary focus on pain. The doctor may be talking and the patient may seem to be listening, but sometimes they really aren’t. They might not remember anything that was said. Someone needs to know what is going on.
A caregiver in the room can cut down on a lot of miscommunication when family members ask a loved one what the doctor has said to them. A caregiver can ask questions, can get clarity and definition of the ongoing problems. Staying with the patient at a hospital is something to really consider.
After a stay at the hospital a patient either goes home, or goes to a recovery/ rehab/ nursing home facility. Nursing Home care is going to be a different experience for the patient and the caregiver. This situation could last for days, weeks, or even months. It won’t be permanent unless that decision is going to have to be made.
But the caregiver won’t be allowed to stay at the nursing home with the patient. If you have a loved one who hates even the thought of being alone, this is an added stress on top of the fact that they have been ill and need professional recovery facilities.
As caregiver, this can mean going to the nursing home every day during visiting hours. It can mean you fall behind on knowledge of your loved one’s current status. It can be a very stressful time, even though it might look like you have time off to others.
Nursing homes also provide long-term care. But these days hospitals and insurance fight over how long a person can stay within the hospital environment. So nursing homes often get patients that stay temporarily for hospital Recovery. There are also many short-term patients who need that in-patient rehab therapy to recover from injuries.
You will be handling the home care. Over time the duties can become heavier and heavier. This is why you want to start off your care duties by setting up support networks. You will not be able to do it all alone.
If your situation leads to end of life, you may run into Hospice Care and Palliative Care. Each facility and type of care is handled differently. The challenges of moving between facilities adds a certain level of stress to both the patient and the caregiver.
Caregiver duties will change given the type of facility. For everyone change is hard. Some of these transitions can be rapid fire, giving no time to prepare for what might happen next. It is something that a caregiver should be aware of, just in case something happens. And it probably will.
Intro to Hard Conversations
Advance care Planning can include both medical and personal planning, and as caregiver you may be the one who must help with that, especially if your loved one hasn’t considered what their end of life might mean for their loved ones.
End-of-life planning is not merely about preparing for death; it’s about ensuring that wishes are honored, and loved ones are cared for after you’re gone. It’s about taking control of your destiny and leaving behind a legacy of love and compassion.
There can be peace of mind that comes from knowing that their affairs are in order and family members are provided for when possible. Not everyone has the luxury of leaving behind items of great value for their loved ones, but they can make after death events easier to handle if directions or wishes are already in place.
These tough conversations turning on a personal note may include personal asset inventory and a legal will or trust. They may include funeral wishes and pre-plans. There may be discussions about beneficiaries and how assets might be distributed.
If none of this has been put in motion yet, you may have to let your loved one know how important it is to do this while still in some state of good health and clear mind; so that their wishes are made known and someone else doesn’t have to decide on the fly.
Once someone dies, things happen pretty fast. Decision making time is very short, and done in a time fraught with high levels of emotion. You want to decide things with clearer heads.
You need to know what your loved one’s wishes are when it comes to end of life medical care. They may want full care clear up until end of life, they may want specific things that might be put together in an advance directives package, and they may want hospice and/or palliative care.
If they have a DNR (Do Not Resuscitate), hospitals will do everything up to a certain point medically speaking.
With hospice care it is about comfort. Whatever the patient wants, whatever pain relief available, whatever personal thing they may want to do if they are still able. Palliative care focuses on religion and personal beliefs of the patient. They can help in situations where a patient is ready to die, but also has a great deal of fear about dying.
These personal end of life things might also include a lot of legal paperwork and personal decisions. You will need to have medical decisions notarized, and a lawyer might help with pre-planning funerals and estate and asset issues.
If your loved one hasn’t done these things yet when you start caregiving, you may want to initiate conversations to let them know that doing the pre-planning, having these legal documents in place can be what makes it possible for their personal wishes to be met.
What may not be talked about enough is that when the end of life is approaching and your loved one knows it, they may really need your emotional support. They may waffle between fearing death, and wanting it to occur. You will be there for every second of what might be a rocky time for you and the loved one you are caring for.
Talking with your loved one and with other family members can ease the situation for everyone, though perhaps not by much.
This could be a time when you need more support from loved ones and professionals in order to get through it. If you need support, don’t hold back. Get that support, because you have a lot to do at this time in your loved one’s life journey.
Don’t push yourself into physical, mental, and emotional exhaustion. Your family is going to need you. You are the bridge to your loved one at this time. Only you will be able to pass on what family members need to know.
As family caregiver, you are the person who will have experienced everything your loved one experienced. You are the one who will have watched the slow everyday deterioration of your loved one. You will be the one who still has tasks to do after your loved one expires, so grieving may come to you a little later than for others. But eventually it comes.
Meanwhile those tasks you have to do may bump up against the emotional responses you might get from other family members. This is a highly emotional time for everyone.
There are now several avenues of support. Should you feel that talking to others and receiving other perspectives from people who have been where you are at, there are a lot of available groups
Grieving and support
A note on grieving
The thing that is important to remember is that grieving is highly individual. Coping with Loss isn’t going to be easy for any family members and friends. Everyone loves in different ways, and will mourn the loss differently. There is no right or wrong way to feel or to grieve
A number of coping strategies lie in the realm of creative expression. Maybe try art, writing, journaling, even music. Some find themselves again in acts of meditation, exercise, and physical activities. Every person is different. You must find what works for you.
FIN
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