Caring for Family Caregivers Within the Health Care System

Denise

Caring for Family Caregivers Within the Health Care System

Denise
It's one of the ironies of caregiving.

You're a regular customer of the health care system. You're at the doctor's offices, the emergency room, the hospital. You interact so much and so often with nurses and physicians that others see you as a health care professional.

And, yet, according to our 2015 Annual Family Caregiver Survey, only 34% of respondents say they adequately take care of their physical, emotional, medical and dental needs. In our survey results you explained the challenge:

Time and money are at a premium between the cost of cancer care and hospitalization, and me having to quit working for a paycheck to caregive. To spend time & money taking care of me when he is so very sick leaves guilt I cannot bear, not along with everything else. Add to this additional pharmaceutical needs and looking to enter into a clinical trial where I don't even know what won't be covered...cutting back on everything but what he needs.


I do my best to take care of my physical, emotional and medical needs (I do, thankfully have decent health insurance coverage). I fail to take care of my dental needs. The cost is prohibitive - and with no dental insurance and no discretionary funds - it is the one thing and I fail to do. Do I care about it? Absolutely - but with the amount of work I need - I just don't have the money. And the clinic at the local hospital is not an option. Even if I have everything taken out and opt for full dentures - they charge for dentures (an amount I can't cover) and more importantly - the time between appointments is ridiculously long and I won't go completely toothless for over a year.


My schedule is chaotic and unpredictable and my meds need to be timed just right for my Parkinson's disease. I end up forgetting to take it because I'm taking my parents to the doctor or racing over to watch my grandkids because our daughter-in-law is having a crisis moment with her bipolar disorder.


(I am) using all my volunteer family resources during the week so I can work full time.


Not enough hours in the day. I work full-time as a real estate broker and 100% take care of my Parkinson's Disease husband and do everything because he has dementia now.


We're so busy providing care that we can't receive care. Talk about a crisis in the making!

A family caregiver recently shared that she now has the same doctor as her caree to ensure she can see a doctor. One trip to the doctor ensures they both see the doctor. That definitely is a great solution as long as you like the same doctor your caree does. My parents, for instance, like doctors that I wouldn't chose as my doctors.

Why can't the health care system take advantage of our presence in the system to offer us health care services? For instance, hospitals have added specialized physicians -- hospitalists -- to its staff. Why not add another specialist -- family caregiver physicians -- who see family caregivers in the hospital during their caree's hospitalization? The family caregiver physicians can bill the family caregiver's insurance. If the family caregiver doesn't have insurance, the hospital provides the services of a family caregiver physician free of charge, recognizing the investment in a family caregiver's well-being. The family caregiver physician can be alerted when a family caregiver's caree has been admitted and then arrive in the caree's hospital room to meet with the family caregiver to schedule a check-up. At time of discharge, both the caree and the family caregiver receive a plan of care.

What if dentists volunteered one day a quarter to provide free dental care for family caregivers during their caree's hospitalization?

Family caregivers are the health care system. Physicians and nurses provide once-in-awhile-care. But family caregivers give care day in and day out without a break for holidays. Let's make it easy for them to receive the care they need. Let's adjust the system so the system helps rather than hurts the family caregiver.

What do you think? What changes can the health care system make so that the care you need is accessible and affordable?

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2 Comments

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Lillie Fuller

I could sure use the dental! Everything is so expensive and my insurance will also pull my teeth but they won't help me replace them! It's a lose, lose for me.

Goldie

The free dental care would be huge. I haven't been to a dentist in a couple of years because I have no insurance and the dentist offices and clinics ask for payment up front. My next visit would have been to fill three cavities - over $300 - and this is at the \"discount\" dental clinic. No money, so no visit.\r\nI have only once been offered the opportunity to talk with a social worker. I would like regular support visits for caregivers with a social worker or counselor or psychologist who is trained specifically in this area. For awhile our health insurance company had a trial \"nurse advocate\" program for people with chronic health conditions. I had a monthly phone visit with my nurse advocate and she helped me to articulate my concerns. The program was wonderful, especially as it coincided with some of the rough times with my mom. Once I was able to call her when I was at my wit's end and she was very helpful.\r\nNow, it would be good, not only for the sake of my physical/mental/emotional health, but also to help figure out what complaints from my parents are real, are their needs being met, are they getting the right medications. I haven't really had this chance for a long time.