Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority

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Published: Feb 26, 2010 12:32 pm
Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority

Caregivers are often a very important part of a person’s fight against myelodysplastic syndromes (MDS). Patients need to focus on their health and may not be well enough to drive themselves to doctor appointments or to keep up with house chores. They also need someone that they can talk to about treatment options and about the emotional roller coaster they may be experiencing.

Patients lean or even depend on their caregiver, and yet as a caregiver, you are also going through an emotionally and physically difficult time as you watch a loved one struggle with MDS and as you do all that you can to help.

One of the best ways to help your loved one is by finding the balance between caring for your loved one while also taking care of yourself. It can be tempting to focus all of your energy and strength on your loved one’s needs. However, staying healthy is the first step in tackling the challenges of caring for a loved one with MDS. Taking care of yourself gives you the strength to take care of someone else.

Over the next few weeks, The MDS Beacon will address many important aspects of caring for MDS patients in a series of articles. This article includes key tips for keeping yourself healthy while caring for your loved one. Future articles in this series will focus on additional issues important to caregivers, including tips for attending doctor visits with your loved one, coping with your feelings of loss and grief, and understanding your loved one’s perspective as they are going through this difficult time.

Keep Your Body Healthy

Keep your immune system strong. Continue with regular doctor check-ups and any regular medications. It’s important for a caregiver to keep track of any previous health problems while staying on the lookout for any new symptoms that may develop, especially stress-related symptoms. Stress can affect your body, emotions, and behavior. It also weakens the immune system, making your body more susceptible to viruses like the common cold. Symptoms of stress include headaches, back or chest pain, high blood pressure or heart disease, an upset stomach, difficulty sleeping, anxiety, depression, irritability, lack of focus, over eating or under eating, or increased smoking or drinking.

Eat a balanced diet. This is especially important if you eat with your loved one, since someone with MDS needs to maintain a healthy diet. To increase energy, avoid soft drinks and candy in favor of nuts, beans, whole grains, fish, green vegetables, bananas, dried fruit, and yogurt. To help improve your mood, eat foods that make you release endorphins like chickpeas or dark chocolate.

Exercise. Any type of muscle activity, even something brief like stretching or dancing around the kitchen, can increase energy. Ideally, a caregiver should try to maintain at least 30 minutes of physical activity about four times a week. This can be anything from running to yard work to playing outside with a pet (more exercise ideas).

Get plenty of rest. Generally, an adult needs around eight hours of sleep a night. Missing an hour of sleep every night for eight nights in a row can make the brain as sleep-deprived as if it had stayed awake all night long. You can also try to nap when your loved one does to catch up on missed sleep, or practice meditation and other relaxation exercises during the day (more sleep tips).

Keep Your Mind Healthy

Take a break. Even spending just a few minutes watching TV, reading, working on a favorite hobby, or doing relaxation exercises can increase energy and help you refocus on caring for your loved one.

Let go of the less important things. Although it may be difficult to cut some things from your daily routine, health should become the top priority for both you and your loved one. Let go of less important activities or concerns for the time being: order takeout instead of cooking dinner, vacuum and dust less frequently, do not worry about folding the laundry immediately or do it while watching TV, and organize mail into piles of important mail that needs to be dealt with quickly and mail that can wait.

Ask others for help. Often, family and friends want to help but do not know how. A caregiver can reasonably ask for help with any basic task including cooking, cleaning, childcare, yard work, and running errands. If you receive too many phone calls or emails asking how your loved one is doing, consider choosing a family member or friend who can notify others of your loved one’s health. Keep that person informed, and ask them to tell others about updates. You can also create an email mailing list so that you can update everyone with one quick email, or start a blog or web page on CaringBridge or CarePages. There is a limit to what any one person can do, and asking for help can keep you healthy, as well as possibly relieving any guilt your loved one may feel for depending entirely on you for care.

Stay in touch with family and friends. Illness has a tendency to make people feel isolated, including for caregivers. Whether by phone, email, or a coffee date, preserve outside relationships separate from your loved one to help you stay strong and to get support.

Be honest about your emotions. Caring for a loved one with MDS can make you feel scared, angry, guilty, lonely, or sad, as well as a host of other complicated emotions. In many cases, your loved one is going through similar emotions. Talking about your feelings together can bring you closer together as a team against MDS. If you do not feel comfortable talking with your loved one, try talking to friends or family or seek counseling. Also, caregiver support groups can provide an opportunity for camaraderie and support from individuals in similar situations. However, seek professional help if you or your loved one have signs of severe depression or anger.

Long-term, maintaining your own health makes you more effective as a caregiver, giving you the energy and strength to provide the best care possible for your loved one as they fight MDS. The key is to remember that by taking care of yourself, you are also indirectly caring for your loved one.

For more information about caring for a loved one with MDS, please see Part 2 of the series, which is about attending doctor appointments, Part 3, which is about coping with your feelings of loss and grief, or Part 4, which is about understanding your loved one’s perspective.

Photo by Ed Yourdon on Flickr - some rights reserved.
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