Caregiver's Corner

There’s no question about it, being a caregiver is a tough job. It can take a toll on your physical and mental health. Caregivers are more likely to suffer from depression and have serious health problems (such as heart issues and diabetes) than their peers. Often it’s because they put their own needs aside. They find it difficult to keep up exercise programs, good nutrition, and their own doctor’s visits. And the more hours spent caring for others, the greater the risk of anxiety or depression.

Therefore, your first priority has to be, take care of you. Make sure you are eating properly, getting enough sleep, exercising, and keeping up with your routine healthcare. Remember, you’re no good for your loved one if you’re not taking care of you.

And as hard as it may be, don’t feel guilty about being healthy yourself. Maybe think of it this way – you’ve been given your health so you can be strong and healthy for your loved one.

Here are some other steps you can take to keep yourself in tip-top shape:

Avoiding a Meltdown

Exercise. Seriously. Go for a walk, jog, ride a bike, do some yoga or a workout. Or just stretch. It’s amazing what a few endorphins floating around will do for you.
Get a good night’s sleep. As hard as it might be, learn to turn off your mind at bedtime. And, if needed, there’s nothing wrong with asking your doc for some temporary help in pill form.
Ask for help. Don’t wait until you’re near a nervous breakdown to reach out. And don’t be too proud. It’s perfectly normal to need help. Despite the giant “S” on your shirt, you really are only human.
Find a way to relieve some of the burden. Accept help that is offered. Delegate responsibilities. Ask family and friends for help. Connect with community care giving resources. Check into home health care and non-medical home care services – many are covered by insurance. Some organizations loan or provide free or low-cost medical supplies and equipment (such as hospital beds and wheelchairs). Ask the doctor’s office for recommendations.
Set-up an update system regarding your loved one’s health status and needs, as well as your own. There are a lot of options available – e-mail, create a blog, establish a phone tree, use a free online service such as CaringBridge.org or Carepages.org. You can always put updates on your outgoing voicemail message. Or simply delegate this duty to someone you trust. The last thing you need to worry about at the end of the day is that unwanted call or e-mail, when all you want to do is escape from your day-to-day responsibilities.
A one-stop online tool to organize helpers is the free, easy-to-use group calendar at lotsahelpinghands.com. It’s a private group calendar where you can define volunteer activities such as rides and meals. Friends and family can view and sign-up for the available tasks and the system automatically sends out e-mail reminders of upcoming obligations. Community members also have access to a private message board (perfect for posting updates), photo gallery and a Well Wishes Board.
Prioritize and plan. Have a daily routine. Make to-do lists.
Be flexible and take one day at a time. Days rarely go as planned. Things are going to change day-to-day, hour-to-hour, and sometimes even minute-to-minute.
Keep a sense of humor and positive outlook. Keep humor flowing – it’s not weird or crazy to find humor in odd situations, even in dealing with sick loved ones. That’s what helped get us through the toughest of situations.
That said, you’re not going to be “up” every minute, nor should you be. Everyone has their moments. Not only is it OK, it’s perfectly normal and actually good for you to release your frustration, fear or sadness. Holding in your emotions and putting on a smiley face does you no favors and is simply not healthy.
Take a break. Call someone you trust to care for your loved one, and take time for you. Your loved one will be fine without you (really), and you’ll be more rested and in better spirits.
Cry. It’s OK! Crying actually eliminates hormones associated with stress, makes you feel better and allows you to have a clearer head.
Schedule time for yourself. It’s not just OK to take a break, it’s necessary. Exercise, knit, get a massage, pedicure, read a book, listen to your favorite music, meditate, or go to a movie.
Make time for others. Stay in touch with friends. Participate in social activities. Even if you don’t feel like doing so, give it a shot. You just might be surprised at how much better you’ll feel afterward.
Take time to do nothing…and I mean nothing. Allow yourself the luxury to just “be.” Take a deep breath – it’s amazing how much it will clear your head.
Have a support system of your own – be it friends, family, or a support group. Join a local support group for caregivers or one of the many online groups, such as those found at www.acor.org. Connect with other caregivers in waiting rooms or through mutual friends. Sharing your frustrations or simply chatting with someone who is walking the same path is invaluable. Surround yourself with those who make you feel good. And be sure to discuss things other than your loved one and their illness.
It’s really not all about the patient. Yes, your loved one is the number one priority right now, but is not the only priority. Don’t feel bad if you get tired of discussing your loved one. It’s only human to be “over it” at some point. When folks ask how things are going, remember it’s OK to tell them that you’re not in the mood to talk. Everyone needs a break sometime.

Help Your Loved One SOAR

First of all, you probably won’t be able to do all of these things. No one can. But as a caregiver, your most important jobs are:

Support – provide a hug, be a shoulder to cry on, help them with
their basic needs.
Objective – focus on what’s best for your loved one, and filter out the rest.
Advocate – you are your loved one’s eyes and ears.
Resources – provide reliable info and the places to get it
(if your loved one wants it).

This list is far from exclusive. You’ll likely find yourself filling many roles as a caregiver: motivation coach, sounding board, nurse, short order cook, maid, personal assistant… The list is virtually endless. But however daunting this journey may seem, you can do it. You may feel overwhelmed at times, but remember, you’re not alone. And I repeat, you can do it.

Support

A hug and a compassionate ear go a long way.
It may be hard, but be as positive and supportive as you can. There’s no room for negativity when you’re dealing with illness.
Encourage and motivate, but avoid giving orders. Give choices. As a patient I began to feel like a toddler. My life was out of control, I was being told what to do, people were using words I didn’t comprehend, and I had no idea what was happening to my world. The last thing I wanted was one more person telling me what to do, no matter how good their intentions.
Your loved one already feels like a burden, try not to make them feel worse.
Let them vent. Since you are one of the people closest to the situation, you might get the brunt of the frustration and irrational thoughts. Try to listen, don’t judge, don’t try to fix things, don’t take it personally and don’t criticize. (Easier said than done!)
It’s not their fault. Don’t lose sight of the fact that your loved one didn’t choose to be sick, but was handed a tough battle.
Be respectful of your loved one and his or her needs, including the need for privacy.
Reassure your loved one that they are still important and loved. Being sick does not change that.
Help with daily needs. Something as simple as showering or preparing a meal can be overwhelming when going through treatment or after a surgery.
If your loved one insists upon doing everyday things for themselves (and they probably will), be sure to remain within earshot. They certainly know their body, but it’s easy to overestimate what you’re capable of doing. I fell in the shower more times that I can remember, even after getting a shower stool. So stay close, just in case.
Help your loved one manage medications. At one point I was taking more than 50 pills a day and my mind wasn’t as sharp as usual. Dosages change and drugs can be added in and removed on a regular basis. Managing changing prescriptions, refill schedules, dosages and drug delivery systems can confuse anyone, no matter how “with it” they are. I got a large daily pill organizer and my caregiver sorted my pills for me once a week. That way we all knew what pills I had taken and when and which prescriptions needed to be refilled. Also keeping a clear log is vital.

Objective

Be realistic and encouraging, but don’t give your loved one a false sense of hope.
This is your loved one’s life. Try not to interfere or undermine their decisions. Realize that everyone has different values and risk tolerance. Ultimately their decisions are the final decisions.
Be aware that despite your best efforts, you might treat the your loved one differently because you’re trying to protect them. You might be building a barrier that will be hard to break down later.
Use tact when you say things. Emotions are already fried. Try to talk to your loved one at least as politely as you would a stranger.

Advocate

Passivity has no place. If your loved one is not able, you must be their proactive voice.
You are your loved one’s eyes and ears. It’s important that someone goes with your loved one to all appointments.
Make sure all questions are answered.
Take notes and understand everything. It’s OK to ask a lot of questions. If you don’t understand, ask again. This includes treatments, tests, follow-up schedule, meds, side effects – everything.
Stay in the loop. Keep track of the schedule of doctor visits, treatments, follow-ups, tests…

Resources

Research is one of the most important steps in treatment and recovery, as a fully informed individual is more likely to make the most appropriate decision. And those who consider themselves adequately informed report less stress and a greater sense of well being during the illness.

Often times your loved one feels too fragile, fuzzy-headed or overwhelmed to do it themselves. This is where you can come in. Do the necessary legwork then provide the info to your loved one, as they are ready for it. But don’t force it.

Some important information to know:

Understand the disease and how it progresses.
Be informed of the treatment options available.
Know the standard staging and follow-up tests, and their recommended frequency.
Familiarize yourself with the part of body affected by the disease or proposed treatment. For example, if the doctor wants to take out an organ, you should really know what that “bonus” piece does.

Where can you find this info?

Ask the doctor for printed info or online sources they recommend. Most waiting rooms have a good deal of information available.
Internet. An amazing resource, however, proceed with caution. (There should be big, flashing warning when you type “cancer” into a search engine.) Google can be your best friend, but it can also be your worst enemy. Keep in mind that the information you find online will often be worst-case scenarios. Be sure you check sources and dates of information. (I originally diagnosed myself with 1968 medical book. Never made that mistake again.)
Local organizations. Your local American Cancer Society has a ton of quality literature available at no charge, as do most disease-specific organizations.
Our Resource page. Check our resources page for a list of organizations and publications we have found helpful.

Why is this so important?

If you don’t know what’s normal, you won’t know what to expect or report.
You can’t always rely on what one person tells you. A close family member was told there were no options for her colon cancer because of her “poor health.” (She wasn’t in poor health.) We asked specifically about a chemo protocol that is fairly standard, but was not presented by the doctor. Our family member eventually had this chemo and went into remission nearly five years ago. Her doctor also didn’t see a need for a follow-up colonoscopy until five years after completing treatment. Wrong answer! She goes in annually.
Bottom line, any doc or nurse worth their salt wants an informed and involved patient. It makes their job easier. And sometimes the patient needs help getting there.

Hospital Specifics

Despite everyone’s best efforts, there may come a time (or two) when your loved one is admitted to the hospital. Unfortunately for you, this doesn’t mean you automatically get that time off. When someone is admitted to the hospital they may not able to advocate for themself as well and sometimes need more help from their caregiver once they’re an inpatient, not less. It’s just a different type of help.

Conservative estimates claim that 275 people die daily due to hospital error, equivalent to a 747 crashing every day. That’s more than 100,000 people per year. Nearly all of the time, hospital workers are competent professionals who are doing their best. (We won’t discuss the other type here. But trust me, they do exist.) But they are human, over-worked, and make mistakes. Only difference, their mistake can cost a life.

Inpatient Tips

First and foremost, passivity has no place. You must be a proactive voice for your loved one, if they are not able.
Have someone with the patient 24/7 while they are in the hospital. You are the patient’s advocate.
Place a notebook on the patient’s tray table, and keep it with the patient. Don’t take it home with you. Write down everything. You may think it’s easy to keep everything straight, but trust me, it’s a whole lot more difficult than you expect. When you’re in the hospital, days, hours, and even minutes run together and blur.

Write down the name of every doc or specialist with notes from their visit.
Note what the nurses are doing, when and why (changing IV bag, blood draws, etc.)
Keep track of all meds given – name, dosage, time, frequency, reason.
Any tests, treatments, procedures – when (day and time), where, why, who ordered and the results.
Any other hospital staff who visit – nutritionist, pharmacist, social worker.
Every time someone comes into the room, ask what they are doing, get the details, and write it down.
Track the patient’s blood reports, temperature, blood pressure, pulse and oxygen sats.

Make sure you know what treatments, drugs or infusions the patient is getting. If you have questions ask the nurse or doctor. They should be able to provide written information for most drugs, including uses, interactions, and side effects.
Make sure your loved one is getting all of their normal meds unless the doctor has ordered a specific change. At one point I was taking 50 pills a day. Needless to say, the staff had a bit of a problem getting everything straight. I was in the hospital for a week for a complication that did not affect my ongoing drug treatment needs, and not one day did I get everything I needed without having to ask (and sometimes argue).
Check the meds your loved one is given. If they look different or not what you expected, ask. Check the name, color, size, wording, dosage, and quantity. Often times the drug from home will look different simply because the hospital is using a different brand. But don’t assume that’s the case. ASK! I’ve been given a drug that was listed on my Allergy Alert wristband. I had just come out of surgery and shockingly didn’t have my wits about me enough to ask what injection I was being given.
If you have questions for or want to see the doctor, check with the nursing staff to see if the doctor has a particular time they make their rounds each day.
Don’t assume the nurses or aids will help with the daily cleanings (sponge baths, teeth brushing, applying lotion). If your loved one is unable to do these things, offer to help.

Give them a sponge bath each day, or at least help them wash their face, arms and neck (fill the bucket with soapy warm water, ring out the wash cloth, and even help them do it). It not only feels good, but it you know it will get done.
Help rub lotion on their body.
Give them a toothbrush with toothpaste on it, and a cup of water.

Keep your loved one’s belongings on the bedside table (including reading glasses) and leave them where they can reach them.
They might need help in and out of bed, chairs and to the bathroom.
Offer (or apply) lip balm regularly, as lips tend to dry out in the hospital.
If your loved one isn’t on a restricted diet, offer to bring in their favorite meal or snack. A home cooked meal is heaven in a hospital bed. Hospital “food” is notoriously anything but satisfying.
Make the hospital room as comfortable as you can. Have your loved one wear their own clothes if possible (I always do), slippers (with grippers) from home, and bring lip balm, lotion, and a bottle of hand sanitizer. Bring in pictures (family, pet, vacation spot), a calendar (if it will be a long stay), blanket, pillow, iPod, and movies. If it’s near a holiday, decorate for the season. I was in the hospital over Thanksgiving one year and just before Christmas another. My IV pole was decorated with Christmas garland. And addressing Christmas cards with holiday music playing was one of the best afternoons I ever spent in a hospital bed!
Bring snacks for nurses and aides. Something as simple as a plate of cookies or a bag of M&M’s would do the trick. A good friend brought a box of See’s Candy suckers to her hospital room. Every time someone’s sweet tooth kicked in, they would head to her room and check on her. Needless to say, she got quite a bit of attention from the staff. Brilliant!
Encourage visitors if your loved one wants them, but be respectful if they don’t. They are sick, and need their rest as they’re doubtfully getting much sleep during the night.
Talk to the nurse about the possibility of a “do not disturb” time for sleep that applies to both visitors and staff.
Be considerate of the surroundings – the people next door or even in the same room. Keep the visits down to a dull roar.
Don’t use the bathroom in the patient’s room. For their physical well-being and yours, the only person who should use this bathroom is the patient.
Make sure everyone washes their hands – you, other visitors and especially the hospital staff. Anyone who comes in contact with your loved one must wash his or her hands first. No exceptions. And be firm.
DO NOT let anyone who is sick come to visit. This includes a runny nose, sore throat, cough, fever… Stay away!

Benefits

Being a caregiver can be an exhausting, thankless job. But it can also be one of the greatest experiences of your life. Caregivers are the glue that holds the world together so their loved ones can manage their illness and recovery.

Caregiving can create a positive emotional change in your life. It gives you a sense of purpose. You feel useful and capable, and know you are making a difference.
Caregiving can bring you and your loved one closer together. Going through an experience like this together creates a bond like nothing else can.
Most likely you’ll come out of the experience a different person, and those who truly are there for you during a health battle will be the people you hold the most-dear for the rest of your life.