Taking care of a declining person is a difficult task, more so if the one giving care is a loved one. Caregiving is not just a job for paid professionals. More often than not, the task of aiding a terminal person falls onto the shoulders of their family or even friends. Caregivers are not just those who have completed a course specifically for the job. They are not just those who are assigned to and get paid by patients. These days, caregivers have a new, familiar face, and it’s in the form of a loved one.
Millions of Americans today provide care one way or another to their parents, children, grandparents or siblings who need it. They aren’t all women as well. The profession that was viewed as predominantly female before now has a growing number of male members. According to the data obtained by AARP, men account for 40 percent of caregivers in the US today, a high jump from 19 percent in 1996.
The number of family members taking on the role of their loved ones’ primary caregiver is expected to
rise as baby boomers, or those born between 1946 and 1964, enter retirement. Also with the country still not united about universal healthcare, getting palliative and hospice care for patients remains expensive but no less important. This is where loved ones step in to help.
But having a family member take care of a debilitated patient doesn’t make it any easier. If anything, it could be even more difficult because they are more invested emotionally in their job. It is a fulfilling job, but it’s also physically, mentally and emotionally exhausting.
And for those giving care for their loved ones who have terminal illnesses, their roles transition to giving hospice care. They would not only have to provide physical care, but they would also be expected to provide emotional support to their family and to themselves as they reach the inevitable.
Family Caregiving Challenges
There are several challenges family members face when giving palliative or even hospice care to their loved ones. If you are one of the millions of Americans who are the primary caregiver of a family member, you would know it’s not an easy job to do. Perhaps you could even say it’s one of the hardest that you had ever taken. And it’s not because you don’t love the patient; it’s because you do.
Here are the challenges that caregivers face:
It’s not a subject that many would be comfortable talking about, but it’s a major concern when a family member suffers from an incapacitating illness.
The medicines, equipment and facilities needed for the comfort of the patient cost a lot of money. Hiring a caregiver, full-time or even part-time, also sets back the patient thousands of dollars. For the caregiver, the financial strain could be doubled.
Professional caregivers are paid to do a job. Family caregivers are likely not. Many of them have also quit their previous job to be take care of their sick parent, grandparent, child, sibling or close relative. They have abandoned their own livelihood so they could be there for their family.
Thirty-six percent of family caregivers in the US spend more than 100 hours per month providing long-term care for a family member needing it, according to the data provided by respectcaregivers.org. It is a full-time job for some of them, having quit their previous work before, while others still hold other jobs. About 76 percent of those currently employed have made adjustments to their employment so they can provide care for their sick loved one. Thirty percent of them use their vacation and sick days, 26 percent take on fewer responsibilities at work, and 14 percent quit their jobs altogether.
With their employment compromised in some way, their income also suffers. They also often spend out-of-pocket expenses for their care recipient.
Family caregivers in most US states, with the exception of North Dakota, can be paid if their care recipient is qualified for Medicaid. Nevertheless, the value of the services they provide far exceeds the total Medicaid spending in 2007, as per the data provided by National Alliance for Caregiving with Evercare in 2009. Millions of family caregivers are unpaid workers.
What you can do about it: If you are a family caregiver, ask your loved ones’ Medicaid or Medicare provider if their coverage includes caregiving payment. Start from there. Perhaps they have long-term care insurance or even investments that can help cover care costs. But in any case, don’t be afraid to ask for help from family as well. It wouldn’t have to be financial assistance. If they could provide time, you could devote the time off to other things that could help you earn money.
If you are also working on another job, ask your employer for company programs that offer assistance to employees providing caregiving duties to their family members. Ask if you are covered by the Family and Medical Leave Act. Work out a schedule or plan that would help ease your situation, like working on flexible time or from home.
Explore all options available to you. Your financial situation will surely change and there will be financial constraints, but it doesn’t have to be all gloom. Most of the time, people don’t know that there are help available that could have made their situation lighter a little. You will never know until you explore all options.
Taking care of someone else on a full-time basis can wreak havoc to one’s own physical health. They are essentially putting other’s wellbeing before their own that they are often left exhausted at the end of the day to even take care of their own. They inadvertently neglect the things that they get to enjoy before, such as going to the gym or even going on a leisurely walk.
More than one in 10 family caregivers experience the decline of their physical health, according to 2009 Caregiving in the US data (via the Family Caregiver Alliance). The tasks that they administer for the care recipients around-the-clock every day can completely overwhelm them.
What you can do about it: You cannot fully take care of someone else if you can’t take care of yourself. You need help yourself, and don’t be afraid to ask for it. Ask a family member to contribute their time. Or if there is budget, hire someone on a partial basis to look after your loved one. Use the time off to do recuperate your strength. Go out and do activities that would kick-start your body. Or if you need to, spend that time to catch up on a much-needed sleep. Connect with local family caregiving groups to gather support. Family Care Alliance, for example, offers online and in-person support groups for caregivers. They host activities to help local members de-stress with various activities.
Apart from physical strain and deterioration, family caregivers also often suffer from emotional stress. This is because they are not just providing physical assistance to their patient; they also act as emotional support for the patient and their other loved ones. Regardless of their quality of relationship with their sick loved one before it all, they would have to readjust—or often, completely rearrange—their lives for them. They may do it out of duty, out of compassion, or simply out of love, but in the end, they still have to do it.
And for family caregivers who provide hospice care for their terminal loved ones, the emotional and mental stress could even be worse. They are providing care for someone they knew would not last long, as opposed to someone who could still recover. They sometimes have to bottle up the grief they feel for everyone else because that they feel they need to be the strong one whom everyone can depend on.
Emotional and mental strain also affects those who put their own lives on pause or on complete stop to care for their loved ones. They might have had promising careers before all this. They might even have had been living their life to the fullest. Their sudden transition to becoming a family caregiver, a job that they need to do, could be likened to abruptly ending their current life to begin a foreign one. It’s a duty thrust upon them and they feel they don’t have a choice at all.
The daily stressors don’t help the cause as well. Their patients’ health could fluctuate between good and bad, better or worse, any time. The stress of financial management also affects one’s mental health. It could be just the little things that could upset their already fragile mentality.
What you can do about it: It’s crucial that you seek guidance and counseling for yourself before you can continue with patient care. Again, ask for help always. The AARP recommends consulting a professional. A nurse or social worker can help you determine what assistance you need and how to get it. Talk to someone, join a local counseling group. Allotting time for yourself to recharge mentally every once in a while can work wonders as well.
There are family caregiving groups that offer support to members in the form of organized activities. They give family caregivers supportive environment, allowing them to interact with and learn from each other.
Talk to your family and relatives. This way, the emotional support becomes stronger because it comes from each and every one of you, and not just coming from one side.
Again, allot time each day for yourself. Do something that you enjoy, even if it’s just for a brief time every day. Giving yourself an alone time can do wonders. Remember that your life shouldn’t just be limited to taking care of someone. You should also live it yourself.
The patients are not the only ones whose social life has drastically changed after acquiring their illness. This also happens to family caregivers. Paid professionals, while devoted to their job, treat this as a job at the end of the day. They get to have day offs, live their life outside their work duties, and spend their time with their family and friends.
But often for family caregivers, this isn’t a luxury that they have. Providing care for their loved ones becomes their new life, and this could mean that whatever was in their previous life before would have to go. This includes their social life.
Many caregivers say that their friends have abandoned them after they have taken on their new job. Their friends would first make vague affirmation of their support but would eventually leave them.
The friends perhaps wanted to avoid the sadness that surrounds caregiving, or they have become busy in their own lives as well, making it difficult to match their free schedules with the caregivers’. Whatever the cause, caregivers are left feeling betrayed and alone.
Because family caregivers are now embarking on a non-stop job, they generally don’t have time to develop new friendship anymore, completely abandoning their social life. Dismissing social life as something that’s only unnecessary would only work if the caregiver had not been sociable in the past. It’s a different case if they were.
What you can do about it: Accept from the start that you won’t be able to save everyone in your social group. As AARP has advised, communicate with your friends and keep them informed of your circumstances. Ask for support through group emails and social media posts. Reach out to them. Ask for small favors—such as picking up something from the grocery for you—and then accept help. Thank and appreciate them. Make some effort and those who are true friends will stay. Not everyone will, though.
There will be some friends who will not respond well to requests. They will disappear from your life ultimately. What you can do is to simply grieve the loss of their friendship and move on. Allow yourself to feel and express sadness but remember that it would perhaps be for the better. You can’t blame yourself for the loss and mourn your new circumstance. Don’t beat yourself up for it because you have made an effort to keep your friendship. If they return to you with sincere apology, forgive them and give them another chance. “True friendship is worth repairing,” according to the nonprofit organization.