Inspire Insights: What You Learn From Caregivers

By Kathleen Hoffman, PhD MSPH

According to the AARP’s 2015 report, “Valuing the Invaluable,” around 18% of adults in the US provide care as unpaid caregivers to family members. Over half of these caregivers are women. 1, 2 Of Inspire’s 1.3 million members, about one-third are caregivers. Yet the number of caregivers in a community truly depends on the medical condition: the rare disease community, Tuberous Sclerosis Alliance Support Community on Inspire, has over 13,000 members, over half of which (53%) are caregivers.  Likewise, the Alzheimer’s Foundation of America Support Community on Inspire has almost 16,000 members, half of them are caregivers.

Medically complex caregiving

In 2013, Pew Research stated, “We are starting to see the effects of an aging population and the financial pressures that many people are facing, especially in the ‘sandwich generation’… Instead of outsourcing nursing care, people are stepping up to the task, like it or not, trained or not.”3  In fact, caregiving has evolved in the US from buying groceries, housekeeping, bathing and dressing, to providing health and nursing care like managing medications, giving injections, tube feedings, monitoring blood sugar, preparing special diets, and operating medical equipment, according to AARP’s report.1

Difficult medical tasks, like administering intravenous fluids, or caring for wounds are done without preparation, support or guidance; according to the 2015 study, two of three caregivers said there had been no visit by a supervising healthcare professional in the past year.1

Last year, Inspire spoke with three caregivers about different aspects of their caregiving experience. Renata Louwers cared for her husband from his diagnosis with stage IV bladder cancer in May 2013 to his death in April 2014.4  Even simple tasks become complex, according to Louwers. “When someone is semi-conscious, just the process of getting them to sit up and swallow a pill at the right time is hard…the activities of daily living get really, really hard. How do you go to the bathroom? How do you take a shower? It was the hardest most isolating thing…and I remember feeling like, why is nobody talking about this?”4

Help may be available but as Louwers stated, “in the middle of it, it’s hard to find what you need when you need it – that was my experience. For example, hospice provided a bed for us when I wanted to care for him at home, but after they delivered it, I had no way to get him into it. We were advised to call the fire department.” 4

Loneliness and separation from others is common.5 “I was taken aback by how isolating the experience was,” she said. “Much like there’s a culture of silence around death, there’s a culture of silence around caregiving.”4

Caregiving in the medical setting

That isolation can be increased by interactions with healthcare providers. Fifty percent of caregivers advocate in the healthcare setting for their loved ones, making appointments, keeping records and asking questions.1 But during hospitalizations, their needs can be ignored, according to Jennifer Brothers. Brothers became a caregiver for her husband Ken, who was diagnosed with bladder cancer in 2011. She now has a masters degree in social work, helping struggling families in the healthcare setting, some of whom are dealing with cancer.

“In a hospital setting you’re picking up the pieces after a medical provider has said something. I’ve watched a few times when doctors did it well and I’ve watched when they’ve botched it,” she said. “In the room it’s about the…patient and medical providers are responsive to them. But, there are other ‘patients’ in the room. You watch family member’s faces as news gets delivered. Remember, caregivers are traveling, making sacrifices, sleeping on uncomfortable couches…. Caregivers have different needs and they have a right to have their needs met too. I wish there were better training for doctors to be more like social workers. Just to get on people’s level, be at their side, and know this is hard news to hear…. I also wish that every medical center had social workers to provide this kind of support. That’s where I want to make a difference personally and professionally.”6

Financial burden of caregiving

It takes time to be a caregiver. Because of this, caregivers’ financial status worsens the longer they are caring. Sixty percent of caregivers state that they have modified their employment in some way to accommodate caregiving; examples include “cutting back on their working hours, taking a leave of absence,” even “receiving a warning about performance or attendance.” Some have become “self-employed” for the flexibility this arrangement affords.1 Caregivers share this stress as well on Inspire:

“I posted the other day about the 7 years journey my wife and I have been through with Alzheimer’s, and how the deep devotion of the love between us and our love for God, who gave us strength, helped us make it through, although we are now in Hospice at home.

BUT, the financial burden has also run its course….As I woke this morning, i sat at my desk and looked at the stack of bills, utility, car note, etc., immediate bills there is just no money left for this month. I have a part time caretaker that helps, I can’t pay and groceries and other supplies have just about run out. These are the things that I feel the most helpless about.”

Caregiver health and burnout

The stress caregivers are under impacts their health. Almost 20% characterize their health status as fair to poor.1 Within a variety of Inspire communities, caregivers discuss burnout.

It just seems you have to put yourself on the back burner. I did that and have begun to have horrible stress issues…I am now seeking help here [on Inspire] and have gone to discuss these issues with my GP who has been wonderful. My husband was recently put on the transplant list and we are hoping it will be soon…. Crying often and feeling like I am out of control… I am starting to work on getting out more often and doing things as often as I can…. It is hard because when you are out, you are thinking you should be home taking care of him and housework which I find hard to keep up with. YIKES!!”

Another member agreed.

“Oh boy do I know how you feel! My husband…has IPF and we are seeing more changes in the last few months… We will have to have O2 set up for him at night. I have no experience with Oxygen at all except while in Hospital. So it is one more thing I will have to learn…. We as caregivers have a big job to do, like arrange medical and all the chores. Plus we have to hold them through the tears and sad times. I can not imagine not being with him, so going through this good, bad and ugly I cling to, just to be with him. It is so frustrating for me not to be able to fix this and to hear there is no medication for them. I hate this disease so much and wish for all it could be cured.”

During her interview, caregiver Kristy Petty, discussed the burnout she experienced caring for her partner, Jo Beth, who had been diagnosed with stage IIIc colorectal cancer. Kristy remembered, “at that time, there was no one I could be one thousand percent honest with. You just feel alone. Jo Beth would go through so many emotions and I said, ‘you are allowed to feel whatever you want to feel.’ She would say things to me and we could talk about it and process it. But I couldn’t do that with her, and I wouldn’t.” 7

Reflecting on that time, she said, “looking back, I would give myself permission to take care of myself. A lot of caregivers think we don’t have time to take care of ourselves. For me, physical activity relieves stress. Or staying in our pajamas on Saturday. Or asking someone to sit with Jo Beth so I could go to the grocery store. I didn’t really leave.”7

A caregiver on Inspire whose family member has lung cancer wrote about burnout:

“A caregiver’s journey is hard. It’s hard to be uplifting and constantly kind and patient. It’s hard when we are scared and can’t show it. It’s hard when we are mad. Mad that they got sick. Mad that we have to shoulder all this emotional and physical pain of theirs. Mad that we have to work through all the possible treatments options without having a clue what will work. Mad that we have to organize, talk to insurance companies, go to appointments, be a nurse after surgery and debilitating chemo. Mad that we have to do all this and hold down a job.”

Caregiving comes in many forms and family caregivers are as varied as the US population. People of all ages and ethnicities are caregivers. Caregivers may also be patients themselves. On Inspire, caregivers are actively engaged in searching for information about the people that they care for, and seeking support. They have stories to tell and an enormous amount of knowledge to share that can, if heard and acknowledged, help to accelerate medical progress.

To learn more from caregivers on Inspire, please contact us.

See our eBook “Experts by Experience 2017”

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