Family Care Givers Often Stop Caring For Themselves

Thu, July 21, 2011

KMUW / Briana O'Higgins

In a report released Monday the AARP says in the course of a year, 61.1 million people, or around 1 in 4 adults, provide care for a chronically ill or disabled loved one. And as baby boomers age and medical technologies improve, those numbers will only rise.

The unpaid work of caregivers is valued at $450 billion, but as KMUW’s Briana O’Higgins reports, their needs are often ignored.

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Dwayne Smith lives alone in a modest family home in Wichita’s College Hill neighborhood. This is the home he once shared with his family, including his wife Pat, who has Alzheimer’s. Pat has lived in a nursing home for three years, but for 10 years before that she lived at home with Dwayne, who was her caregiver.

Smith: Pat was the May Queen at WSU in 1953, so my strategy through all these caregiving years has been how to outwit the May Queen.

Recent research deems caregivers “the hidden patient,” and in the case of Alzheimer’s caregivers, many die before the person they are caring for. That, says Conni Mansaw, caregiver care coordinator with the Sedgwick County Department on Aging, is partly because caregivers neglect themselves,

Mansaw: I deal with a lot of people that say it has been 5 or 6 years since they have seen their family physician.

And part of staying healthy says Dwayne Smith, is mental health,

Smith: Another important factor in order to meet the challenge of care giving head on is self coaching. You got to work to help yourself stay psyched up to do this job.

Smith speaks on the topic of care giving to medical students, health professionals and fellow caregivers and attitude is a huge part of his message. He attributes out-loud self coaching to getting him through.

Smith: I say Dwayne, you are lucky to be at this point in your life. Lucky to be involved in a cause bigger than yourself, lucky to have a new job now. The most important job you have ever had, and I always do my job. I say Pat, you gave your best, you deserve my best. And I say Pat you are the best thing that ever happened to me.

Smith also has suggestions for lessening stress throughout the process, including what he calls the paralysis of analysis. To avoid this, Smith had a list of functions his wife had to maintain to be able to stay in the home.

Smith: These are specific points and I figured the breakdown of any one could be reason to make a move to a care home.

Smith decided he would check in on his wife’s ability to eat, sleep and move around, as well as her disposition and safety. As these began to breakdown, he made other arrangements for her, knowing he would no longer be able to serve as her primary caregiver.

While Smith’s experiences can be helpful to many caregivers, Conni Mansaw says for some family dynamics play a huge role in caregiver stress.

Mansaw: For instance if you have a son or daughter that is taking care of mom or dad and maybe there is a history of verbal abuse, or some neglect or abandonment issues, and now that son or daughter is in this role of care giving, they are still dealing with the past, so for then to provide care for that loved one is very difficult.

Also, says Mansaw, there is an increasing number of caregivers from what has been called the sandwich generation, households where an adult child is taking care of one or both parents, and their own children.

Part of Mansaw’s job with the county is to get word out about services available to caregivers, including homemaker services, meals on wheels and respite care,

Mansaw: Sometimes people just need something like a wheelchair ramp, so we have a minor home repair program. Senior services has volunteers that will come out, they rake leaves, they mow the lawn.

Mansaw says, as with most things, the county's caregiver assistance programs have seen some cuts, but that there are services available on a sliding scale. Plus she says asking is free, and the most important thing is to seek out help before there is a crisis situation.

Phyllis Spade also believes in dealing with a situation before things get out of hand. And for her and her husband, that meant professional care.

Spade is 86 and lives in assisted living, where she has been for five years. Prior, Spade and her husband lived in a home together, but with her husband’s ailing health and a house to keep up, they were finding themselves overwhelmed.

Spade: And our daughters conspired and they said you have got to move to where you have some help. You cannot continue to live here independently, and we resisted, especially my husband.

After extensive research the Spades and their daughters decided on Sedgwick Plaza retirement community.

Spade: We moved here in February, and it was late March and we had one of those big blizzards and my husband looked out of the window and he said to me, you know, we have pretty smart kids.

Spade’s husband passed away a year and a half after they moved to Sedgwick Plaza, but because they had made the move before things got dire, it made the situation easier on Phyllis.

As Dwayne Smith says, it is all in how you respond to the situation

Smith: You must eliminate why from your vocabulary, you must not ask, "Why is this happening to me?" because there is no good answer. So you have to hit it head on, you have to find pride in being able to do the job and have to think constantly of better ways to do it.

As the population ages more and more families will have to hit the care giving question head on, meaning more assisted living facilities, more nursing homes, and many adult children in their 60s and 70s with their own chronic conditions, caring for a parent over 90 years old.