When a family member is diagnosed with mesothelioma or any other type of cancer, it can affect everyone in that person’s vicinity. Not only is it heartbreaking, but it can also bring unexpected financial and personal burdens to those closest to the patient. Mesothelioma caregivers are often spouses or children of the affected individual, and, after diagnosis, their work almost never ends.
The ability of mesothelioma patients to function at 100% is severely compromised once major symptoms start to kick in. Medications and other treatment options can be even more debilitating. Things that they once did easily can become major chores.
Mesothelioma caregivers often have to pick up the slack in that regard while also providing care to their loved one. It can be a difficult proposition, to say the least.
Still, many caregivers would rather offer their own support instead of hiring someone to take care of a family member. They often feel as if they owe it to the affected individual. While mesothelioma patients are certainly suffering, their caregivers also need support and guidance.
There are no perfect mesothelioma caregiving tips to offer, but a little assistance can go a long way.
The Struggles of Mesothelioma Caregivers
In most circumstances, caregivers for mesothelioma take control of the patient’s in-home health and well being. They also work as a de facto personal assistant for their loved one.
Some duties that mesothelioma caregivers perform include:
- Scheduling medical appointments
- Scheduling rounds of treatment
- Remembering to provide medications
- Running errands
- Doing chores around the house
- Providing transportation
- Talking to medical professionals
- Consulting a legal team
- Potentially bathing their loved one
- Providing adequate food
- Taking care of financial issues
They often have to take care of all these things while trying to maintain a life of their own and dealing with their own feelings of grief, fear, and uncertainty. This task is obviously far from easy, and it often leads to high stress, exhaustion, and burn out. On top of that, most caregivers know that mesothelioma is often terminal illness. Knowing that the care they are providing may be the last gesture of love and warmth, they will be able to give their family member can be gut-wrenching.
Because of all these factors, many mesothelioma cancer caregivers experience a barrage of negative emotions on any given day. They also tend to overwork themselves in an attempt to offer the best care they can give their loved one.
Other issues that caregivers can run into include:
- Poor sleep schedule
- Lack of appetite or poor eating habits
- Feelings of resentment
- The difficulty with other relationships
- Feelings of isolation
- Neglecting exercise and other bodily necessities
- Having limited time for themselves
- Monetary issues
Again, all of these can lead to burn out in which caregivers struggle to provide adequate care for their loved one. It is easy to become overwhelmed by the monumental task of taking care of someone you know so well. But, in order to it properly, you need to take time for yourself and seek the support of others.
On the flip side, of course, some mesothelioma caregivers actually feel a sense of positive self-worth and fulfillment when caring for their loved one. The support they provide makes them feel needed and worthwhile. It’s also a great way to identify your own strengths and express love toward the person needing care.
Options for Mesothelioma Caregiver Support
There is no question that caregivers need support. Caring for a loved one can feel like a full-time job, and, if you already work, it can feel like you are burning the candle at both ends. Feelings of frustration, sadness, and even loneliness are not uncommon. It’s also easy to neglect your own wellbeing in the process of caring for another.
In order to provide the best care, however, you need to ensure that you are caring for yourself first. A caregiver who is burned out or is physically or mentally compromised from the task will not be as helpful as a caregiver working at full capacity. Here are a few mesothelioma caregiving tips to help you through the process.
If you’re providing care for someone you are very close to, it can be difficult to ask for help. Indeed, many caregivers might feel guilty for not being able to handle the caregiving responsibility on their own. But, more often than not, family members and friends would jump at the chance to lend a hand. Even allowing someone to run a quick errand for you or do a few chores around the house can help take a load off your back.
In some cases, a family member or friend might even be your substitute if only for an hour or two. If no one you know is available, you might be able to find “respite care” options. Respite care is a term for when primary caregivers need a break and are effectively replaced for a period of time by professional caregivers.
Respite care can be a recurring element in your caregiving plan, or it can be a one-time thing. It may also allow you to go on “vacation” for a week or two even if you don’t actually leave the area. In some cases, Medicare or Medicaid can pay for respite care.
Join a Cancer or Mesothelioma Caregiver Support Group
Support groups can offer a great way for caregivers to commiserate with one another, find resources, and seek advice. You can always vent to family and friends, but no one will empathize quite like a support group of caregivers going through exactly what you’re going through.
Because of the rarity of mesothelioma, you may not be able to find a support group specifically for mesothelioma caregivers. But, many cancer centers offer general cancer support groups. There, you will find people with similar issues even if the exact disease of their loved one is not the same. You can also expect to find people who have been in your shoes for a long time. They can help provide advice and offer resources that you really could not find anywhere else.
There is also always the option of joining a support group online or by telephone. The internet is filled with support group sites where you can find other caregivers dealing with loved ones who have mesothelioma. If large groups aren’t really your thing, you could also always opt for one-on-one counseling sessions. In any event, it’s always good to seek the comfort of others who truly understand your plight.
Try to Maintain Your Routine
When you are a caregiver, it’s easy to get trapped in a bubble. If you spend all day in the pursuit of helping your loved one, it is very easy for you to interrupt your normal daily routine. Indeed, sometimes you can get so overwhelmed that aspects of your routine simply go by the wayside.
Some examples of a routine include:
- Going to bed and waking up at the same time
- Eating meals at around the same time
- Exercising on certain nights of the week
- Having a religious day of observance
- Scheduled date nights with a significant other
Even if you don’t maintain your routine to its exact specifications, you can still do the things you like and need to do. For instance, if you typically go to the gym at 6 PM but can’t make it due to caregiving obligations, then simply go later that night or try exercising from home.
The more you deviate from your standard routine, the more likely it is that your stress will increase. Doing everyday things can help you feel centered and mitigate your stress response to the situation.
Know Your Limits and Set Boundaries
While caregiving, your instinct is likely to put your loved one’s needs ahead of your own. But, there is only so much that you can reasonably be expected to do. In some cases, you simply may not have the time to devote to both a job where you work and a loved one you care for. If you need the job to pay your bills (and, perhaps, the bills of your loved one), then it’s important to strike a balance.
You may need to lay out some ground rules before your caregiving even begins. How often will you be expected to be with your loved one? What types of care are you going to be able to provide? How much time will you be allotted to yourself? Perhaps every other Saturday could be devoted to you and your interests.
Your limitations may also be physical in nature. Maybe you have a bad hip or are just not as strong as you used to be. It can become difficult to help your loved one out of bed or perform a variety of other duties. Home care nurses or helpful family members may be necessary to help you perform all the tasks associated with a caregiver.
Schedule Events to Wind Down
Being able to relax can do wonders for a stressed person. You should always find time to engage in activities that are meant solely for you. If you get wrapped up in the caregiving situation, you may not be able to feel any peace or solace. Something as simple as a walk around the block or drive around the city can help clear your mind.
Other fun and relaxing activities you can try include:
- Reading a book
- Going to the movies
- Scheduling events with friends
- Going out to dinner
- Watching a television show you like
- Attending a concert
You should always have something you can look forward to; otherwise, life can get dreary and repetitive very fast. It’s also always important to understand that you are not cheating your loved one by engaging in relaxing activities. You still need to care of yourself, and part of that means being able to have fun.
Take Care of Your Body
In order for you to be an effective mesothelioma caregiver, you need to keep your body in good working order. It can be very easy for caregivers to neglect aspects of their own health and well-being while caring for their loved one.
Some things you should focus on doing include:
- Eating healthy, well-balanced meals (no fast food)
- Exercising regularly
- Taking your own medications
- Going to the doctor for check-ups
- Sleeping each night adequately
- Getting therapy if you feel inordinately depressed or anxious
Again, it can be very difficult for any or all of these things. Some may be easier than others, however. For instance, you will probably want to cook or order healthy meals for your loved one to improve their health. Simply make or order two plates and provide your own self with nutritional value.
After working and providing care all day, exercise might not be on the top of your to-do list. But, it can actually help relax you and make it easier for you to sleep at night. One of the major problems that mesothelioma caregivers face is sleep disruption or a lack of quality sleep. Exercises like swimming, cycling, and jogging can bring your stress levels down and make it easier for you to rest.
As a caregiver, it may also be easier to forget about your own health issues. An easy way to remember to take your medications is to take them at around the same time you give medications to your loved one. Likewise, if you have doctor’s appointments, don’t skip out on them. In order for you to provide adequate care, you must actually be healthy enough to do so. You also don’t want to get sick with a cold or flu and pass that on to your patient.
In the end, it’s clear that caregiving can be a gargantuan task. It requires you to almost always be “on call,” which can deplete your reserves of energy and increase your stress. But, you can’t let this undertaking completely grab a stranglehold on your life, your health, and your happiness. Ask for help. Get out of the house. Take care of yourself. It’s the only way to provide the best care possible to your loved one.