Mesothelioma is a tough illness. It often hits unexpectedly. It also hits hard, in most cases, and its treatments are debilitating and life-changing. It’s rare that a person that was once healthy and independent can continue being that way once they develop mesothelioma. He or she is going to need help, whether it’s now or sometime in the future. That’s where a caregiver enters the picture.
Who are the caregivers?
In most cases, the caregiver for a person suffering from cancer is a family member, usually a spouse. However, the job of caregiver can fall to just about anyone who is able and willing to do the job, which is never easy.
Son, daughter, sister, brother, niece, nephew, cousin. Anyone is a candidate. All it takes is a great deal of stamina and the willingness to deal with all sorts of emotions, from fear and anxiety to anger and frustration to sympathy and depression. It’s a tall task.
Friends can be caregivers, too. Many cancer patients, especially older mesothelioma patients who are being struck down in their later years, may not have family members to which they can turn, so close friends step in and do the job. It’s a huge sacrifice for anyone, so friends considering this option should think long and hard about the responsibilities and consequences before jumping in with an offer.
Mesothelioma caregivers can also be hired individuals who have no existing attachment to the patient. Caregivers are hired when no one else is available or when the job simply becomes too big or overwhelming for a family member or friend. Professional caregivers for mesothelioma patients should be trained in dealing with terminally ill patients and, hence, can be a good alternative when necessary.
What is required of the caregiver?
There is no simple list of tasks for anyone who signs on to care for an individual with mesothelioma. Know, however, that once you make that decision to be caregiver, the responsibilities can grow as the individual begins sicker and less able to care for themselves.
Physical support – The role of a caregiver often starts with providing tangible support for the patient. In other words, the caregiver will need to do the physical things that the patient can no longer do. This might involve tasks such as driving back and forth to doctor appointments or treatments; doing housework including cleaning, cooking, food shopping and laundry; taking care of the sick person’s pets; caring for other members of the victim’s family; and more.
Emotional support – A caregiver is often leaned upon for not only physical tasks but also to lend the proverbial “shoulder to cry on”. A caregiver often winds up acting like a counselor, which can be very draining for the caregiver. While it’s okay to “be there” when the victim wants to cry, rant, or otherwise act out, it’s important that the caregiver know his limits. Part of the responsibility of the caregiver is to understad where to draw the line, and it might be necessary to offer the suggestion of a professional counselor/therapist if the emotional responsibilities become too heavy.
Financial assistance – If necessary, a caregiver may need to help the cancer patient sort out his or her finances. This could include paying bills and other small financial tasks. However, you may need to be willing to help with some financial planning issues as well. Mesothelioma is an expensive disease and often there are challenges to deal with involving insurance companies, wealth realignment, and more.
As with other issues, caregivers need to know where to draw the line when dealing with a patient’s finances, especially if it’s not a spouse. Often, calling in a professional is a good idea, if the cost is not prohibitive. An attorney may also be able to assist with gaining compensation from parties responsible for the victim’s disease.
Important Things to Remember
Being a caregiver for someone who is very sick or dying is one of the hardest things you’ll ever have to do and it’s not for everyone. Some people may dive right in and be fine while others will suffer quick burnout, even with the best of intentions.
Remember, however, that the best interest of the patient always comes first, though there are some things that are easy to forget when you’re facing day after day of difficult tasks and high emotions.
The patient is an adult – Just because someone is sick, it doesn’t mean they’ve lost all of their abilities and all of their rights. Until they can no longer do so, the cancer patient has the right to make their own decisions.
You are there to facilitate those decisions. When a point comes that they can no longer make safe or logical decisions, then it’s time to talk about other options.
Let him/her do what they can handle – It’s difficult for anyone to lose their independence. So, as a caregiver, your job is to let the patient do what they can do for as long as they can do it. That might be assisting with household tasks, balancing their checkbook, or participating in activities with friends. If you take over everything before it’s necessary, they’ll feel worthless and will likely begin to suffer from depression.
Do what you promise – Don’t make promises to the patient that you can’t keep. If you tell them you’ll take them to visit a dear friend, then put it on the calendar and do it. If you promise to make their favorite meal on Monday, don’t forget to buy the ingredients. There’s so little that a terminally ill patient can look forward to, so – feel free to make promises – but be sure to keep them.
Seek help from others – Gather a list of others on whom you can rely. In some instances, this might be difficult. But there will be times when you need a helping hand, so be prepared. Being a caregiver is rarely a one-person job, so look to family and friends for assistance and plan ahead if you need some time off. No family or friends? Look for other options like facilities that provide respite care or temporary live-in nurses or aids.
Take care of yourself – You know your limits. If you feel yourself becoming either physically or emotionally exhausted, look for help. This might be in the form of a friend or counselor to whom you can talk or you may even find some online sources that can assist you by providing a pick-me-up or other help. (See below) Remember, you are of little help to the patient if you are suffering as well. You can only be there for the long haul if you take time to renew and refresh once in a while.
Indeed, caregivers are charged with a difficult task. Caring for a loved one or friend, especially if they’re chronically ill, is physically and mentally taxing and the responsibilities are endless and often daunting. Hence, it’s important – not only for the well-being of the caregiver but also for the person for whom they are caring – that the caregiver remains well-informed and as healthy as possible, both physically and psychologically.
This involves finding consistent support so that when the going gets tough, they’ll know where to turn.
Being a good caregiver also means gathering as much information as possible on the intricacies of caregiving and on other topics like specific diseases or disorders or other knowledge specific to one’s particular situation.
Technology has made these tasks much easier. Online forums help caregivers not to feel isolated and they provide someone to talk with, even if it’s not face-to-face. Websites that are dedicated to the issues of caregivers provide much information about a variety of topics and are often written by individuals who are or have been caregivers and are willing to share their knowledge and experience with others.
Caregiver.com – This site very much focuses on caring for aging and/or ill parents, but provides lots of great information no matter the specific scenario. It also provides resources for professional caregivers. The publisher, Caregiver Media Group, founded the site about 20 years ago and also produces Today’s Caregiver magazine, an excellent periodical for caregivers. Articles in the magazine are written by both professionals and non-professionals and include a myriad of topics. It’s available as a print item or online. The site also includes info on diseases like cancer and other terminal illnesses.
Caregiver.org – This site is published by the Family Caregiver Alliance. It focuses mostly on families who are tending to loved ones stricken with terminal or disabling health conditions. Similar to the site above, it provides tips and advice written by caregivers or experts and also offers information on where caregivers can find workshops and conferences and other support gatherings in their area.
Caregiverslibrary.org – Through the National Caregivers Library, one can gain access to a plethora of caregiver resources including articles, forms, and checklists that will assist in helping the caregiver do the best job possible. The site also offers links to external resources, both government and private. Also check out the online “store” where one can purchase books and other helpful materials pertaining to caregiving.
Caregivers can get more mesothelioma information here, or call Lee directly – 855-397-6640