A mesothelioma diagnosis is a life-changing event, not only for the patient but for his or her family as well which makes mesothelioma caregiving a large part of everyone’s life. Here are some suggestions to help prepare you for mesothelioma caregiving– and some to help you take care of yourself in the process.
Emotional Mesothelioma Caregiving
Whether the mesothelioma patient in your life is a spouse or a sibling or a parent, they may have a hard time receiving mesothelioma caregiving from you. Perhaps your husband was used to doing household repairs himself or your mother prides herself on staying on top of her financial paperwork. Accepting new limitations can be hard. Family members adjusting to new relationships can add stress to mesothelioma caregiving.
In addition, pain from the mesothelioma tumor or from the treatments can make even the most good natured person tired and irritable. Mesothelioma caregiving will call on you to step up to support your loved one’s emotional needs, which may be different now.
Here are some tips on providing emotional support:
- Start by listening. Let the mesothelioma patient talk as much or as little as they need. Listen with an open heart and mind.
- Don’t be afraid to give a hug or hold a hand. A quiet, gentle touch can be an important part of mesothelioma caregiving.
- Accept that your loved one may not make the same decisions that you would if you were in their place. Try not to give advice or control the treatment process.
- Have fun together. Join your loved one in whatever enjoyable activities meet their energy level. This might mean taking a walk in the woods, going out for a drive, or watching a favorite movie or TV show together.
- Accept your own feelings. Mesothelioma is a heavy diagnosis and mesothelioma caregiving can be emotional for the caregiver. It’s okay to take some space away from mesothelioma caregiving to feel your own sadness.
Remember that there isn’t one right way to do mesothelioma caregiving. Try not to judge yourself or your loved one. You are both doing the best you can in a challenging situation.
Long Distance Mesothelioma Caregiving
Living at a distance from someone you love who has mesothelioma can have its own stresses. You want to make sure that your family member is getting the mesothelioma caregiving they need, but it isn’t practical for you to be there all the time.
Here are some tips for long distance mesothelioma caregiving:
- Just because you don’t live close by doesn’t mean you can’t provide emotional support. Pick up the phone and call or text or email your loved one on a regular basis. Skype, Facetime, or other services may let you visit in person by TV.
- Put together a support network near the mesothelioma patient. This is a list of people you can call if you need someone to provide a bit of in person mesothelioma caregiving or just to check in and make sure that everything is okay. Make sure these people have important phone numbers such as doctors and hospitals.
- Get to know the resources near the mesothelioma patient. You don’t have to live in the same city to make a call and arrange for assistance.
- Set up a mesothelioma caregiving team through a website such as Caring Bridge.
Even if you can’t be there physically, you can provide important mesothelioma caregiving for your loved one. Reaching out and staying involved will give you peace of mind, too.
Physical Mesothelioma Caregiving
If you do live close enough to provide day to day assistance, your mesothelioma caregiving tasks may include everything from driving to medical appointments to picking up prescriptions to cooking and cleaning. Whether you’re helping with a transition home after surgery or heating up a bowl of soup, every act of mesothelioma caregiving is important.
Here are some tips for physical mesothelioma caregiving:
- As much as possible, let the mesothelioma patient be in the driver’s seat. Ask what they would like to eat. Let them rest when they want to rest.
- Get organized. Make a list of medications with dosages and times. Write the day’s appointments and activities on a dry erase board where your loved one and other mesothelioma caregivers can see it.
- Stay on top of the important things. There will be enough emergencies in your life. Don’t create more by leaving a prescription refill to the last minute so you must rush to the pharmacy.
- Prioritize and let go. Do get the prescription refilled. Don’t mow the lawn as often. At times, mesothelioma caregiving may mean that there is more on your to do list than you can do. Your garden may not be as beautiful as usual. Your home may be a bit untidy. But you make it to the doctor’s appointments on time and the medications are given at the right times. That’s what’s most important.
Above all, be kind to yourself. Mesothelioma caregiving is a big strain on you and you will need extra support too.
Mesothelioma Caregiving Help
You don’t have to do it all yourself – and you probably can’t. Here are some tips for getting help with mesothelioma caregiving:
- If you can afford to hire someone to help with nursing care or housekeeping (or both), do it. There’s no shame in getting help. If you can’t afford to hire help, ask the hospital social worker to connect you with free or low cost community support services.
- Activate your network. Enlist family and friends to share the work of mesothelioma caregiving, so the burden doesn’t fall too heavily on one person.
- Lean on the professionals. A family lawyer may be able to help arrange the mesothelioma patient’s financial affairs. Hospice provides excellent nursing care and advice. Your asbestos lawyer should be able to help with the immediate financial burdens of proper supportive care.
You will provide better mesothelioma caregiving to your loved one if you reach out for support.
Mesothelioma Caregiving for the Long Haul
One of the most important aspects of mesothelioma caregiving is self-care. If you make yourself ill through worry or overwork, you won’t be able to help the mesothelioma patient. You want to be by your loved one’s side right up to the end, so it’s more important than ever to take care of yourself.
Here are some self-care tips:
- Take breaks. Make time to have a cup of tea, take a nap, or read a good book. These little moments to yourself will recharge you so you can be more present for mesothelioma caregiving.
- You don’t have to be a rock all the time. You probably don’t want to burden the mesothelioma patient with your fears, anxieties, and worries (she has enough on her plate). Find a trusted friend or a social worker or therapist you can share these feelings with. You’ll feel better.
- Don’t abandon your personal health routines. You may not have time to get to the gym as often, but even once a week will help you stay physically fit. If you can’t cook the healthy meals you like to eat, try pre-made salads from your local grocery store or order healthy meals from a service such as Blue Apron.
Don’t shortchange your own self-care. You are an important mesothelioma caregiving resource.