This site focuses on the long-term family lesbian and non-lesbian caregiver. While there are some men who take on the role of care-giving 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 record-keeping. 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 shower head 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. They may be unable to tell you what was said.
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.
Brief Recap
No one is born knowing how to care for others. You learn as you go. So use the tools available to you. Set up as large a support system as you can as soon as you can. Hone your communication skills. Remember Self care. And try to move through your new world with love.
Care-giving on even the best of days is hard. Your world becomes smaller and smaller as you care for someone long-term. Their world becomes your world. You may have to struggle to remember the advice given by almost all caregivers: remember to practice self care.
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