Results tagged “family caregivers” from Caring For Our Parents

What do family caregivers want? What do they need?

Education and training. Respite care. And, most important, peer support.

Those are the conclusions of the HSC Foundation, which, along with several partners, organized a series of 2009 listening session to hear what caregivers had to say. They were not necessarily caregivers of parents or other frail elderly family members, Some were caring for wounded vets, others for kids with disabilities, and others were African-Americans caring for family members of all ages. HSC calls them "overlooked caregivers." Yet their message is valuable for us all.

I was struck by how important peer support was to all of these people. While assisting kids and vets can be a longer-term effort than caring for an elderly parent, the lesson applies to all families. It is important to get advice from advocacy groups and government officials, but caregivers really want to hear from other caregivers. These family members hungered for an experienced mentor who could provide both practical advice and emotional support.

This assistance will be increasingly important in a world of consumer-directed care. There are many benefitis to giving families the flexibility they need to design individualized care for their loved ones. But with that flexibility comes tremendous responsibility and a need to learn about an immensly complex system of government, non-profit, and for-proft supports. Wouldn't it be nice if these caregivers could receive some comprehensive training as well as peer support to go along with these flexible benefits. 

I understand it isn't easy to convince people to take on this mentor role. Those still caring for parents are usually overwhelmed and have little time to help others. Those whose caregiving role has ended are often exhausted and unwilling to relive their experience. But I suspect many would be happy to play this mentor role if someone asked them. The question is: Who can put them together with those looking for this critical support? 

Those of us who are caring for our parents or other loved ones know how tough it is. The emotional, physical, and financial burdens are sometimes overwhelming. Bathing your father or changing his adult diaper puts both of you in a new, uncomfortable, and difficult world.

But at a Syracuse University long-term care conference I attended last Thursday and Friday, Carol Levine reminded me about the medical expertise caregivers need these days. With patients being discharged quicker than ever to their homes from the hospital or from nursing facilities, adult children and spouses increasingly are being asked to do the work that was once left to highly trained nurses. 

Carol, a former family caregiver herself and director of the Families and Health Care Project at the United Hospital Fund in New York, has a long list of these tasks, for which few caregivers are ever prepared. Among them:

Medication management: It is common these days for a senior with many chronic diseases to be taking a dozen different medications. If you've been a caregiver, you know the drill--the green pill three times a day, the blue pill twice a day with meals, the other blue pill twice a week....Worse are the sometimes deadly interactions among these drugs. With few doctors keeping track of all these meds, preventing medication disaster is up to family caregivers.

Operating medical equipment: This is work that you'd need a license to do if you were not a family member. Is the oxygen tank full, are drugs flowing freely through IV tubes, are wounds being kept clean and appropriately bandaged, are you giving injections properly? And this is the easy stuff. Some family members must do even more complicated work, such as managing complex ventilator care.

Coordinated care: This may be the toughest task of all.Somebody must make sure that all the doctors and other health professionals are on the same page. With a few exceptions (such as hospice), docs and nurses won't do it. So it is up to family members who must learn medical jargon and become disease epxerts in their own right. And keep in mind, as hard as it is for adult children to provide this complex medical care, it can be far more challenging for spouses, who may face their own physical and cognitive struggles.     

There is almost nowhere for family members to go to get this training. I have found only a handful of such programs around the country. The Schmieding Center in northwest Arkansas is a great model. But they are few and far between. 

And even if this training were available, who has time to take classes when they in the midst of a caregiving crisis? 

We all want to be cared for at home, but to make it work, family members will need the training to perform increasingly sophisticated medical tasks. And right now, there are far too few people thinking about where their education is going to come from.   

In the new health bill, Medicare is planning to pay family practice doctors extra money to organize complicated care for the chronically ill--a role known as a medical home. But as family caregivers know all too well, they are the real medical homes--and probably will be for the forseeable future.     

When I was caring for my parents, I thought what I was doing was both the hardest thing I had ever done and the most rewarding. Now, an important new study suggests I was not alone.

The study, called Caregiving in the U.S., is an important snapshot of what life is like for those providing assistance to aging parents, as well as young adults and children with disabilities. The study concludes that a staggering 65 million Americans are providing some assistance to their loved ones. About 17 million are caring for special needs children. The rest--nearly 50 million-- are helping the frail elderly or adults with disabilities.  

Who are these caregivers? Keep this picture in your mind: A 48-year old woman caring for her elderly mother. She is trying to hold down a job even as she spends about 20 hours a week helping her mom, something she's been doing for four years. There is a good chance she is taking time off work to help her mother with transportation, shopping, managing finances, taking medications, and even getting in and out of bed. 

She is getting help when she can from other family members and friends. About 40 percent rely on paid aides for some help, although that's significantly fewer than in 2004, the last time the survey was done. And about 40 percent feel their caregiving puts a "high burden" on them. 

Among those caring for someone 50 and older, the picture is a bit different. Caregivers are older--more than half are over 50 themselves. They are, typically, helping a 77-year-old widow who is living in her own home and who may be suffering from dementia.

The study was done by the National Alliance for Caregiving along with AARP, and funded by the MetLife Foundation. It follows similar studies published in 1997 and 2004. Read it.        

When family caregivers are under a lot of stress, the chances increase that their loved ones will have to move to a nursing home. That's the conlusion of an important new study by my Urban Institute colleagues Brenda Spillman and Sharon Long.

That conclusion may seem obvious to caregivers, but Spillman and Long back it up with some hard data. They found that when family members suffer physical strain, lack of sleep, or financial pressures, their elders are far less likely to be able stay at home. Their research squares with what I saw over and over again with the families in my book Caring for Our Parents.

One family, Steve and Judy Dow of Burlington, Vermont were trying to care for Steve's mom, Judy's parents, and raise two high school kids while working full time--Steve as a contractor and Judy as a public school teacher. It finally became too much, especially with Steve's mother who suffered from severe dementia, and the couple made the decision to move her into an assisted living facility.

There are lots of other reasons why chronically ill seniors are no longer able to stay at home, including their own declining health. But Brenda and Sharon conclude that if severe caregiver stress could somehow be eliminated, nursing home admissions could be cut by more than 70,000. 

Finding ways to reduce these crushing levels of stress is not easy, but this research, which expands on the results of some earlier studies, shows why it is important to try.