Family Caregivers Play Big Role in Alzheimer’s Disease
Wednesday, February 20, 2008
One in eight families in San Diego County is affected by Alzheimer’s Disease. The mammoth task of taking care a loved one with the devastating disease usually falls on a relative. In fact, two-thirds of the caretakers are the adult children of the Alzheimer’s patients. Reporter Amita Sharma spoke with a San Diego man who quit his job to look after his father who is in the middle stages of Alzheimer's. The two men see this time as a chance to reconnect.
(Jesus emerging freshly dressed from his morning bath.)
Jesus Gomez: Guapo Jeffe, Guapo ….Es only Uno. (You handsome man)
Meet Jesus Gomez. This spry and dapper man just turned 80. And at this stage his life is rife with contradictions.
Gomez: Jina Nu Disakar
Alzheimer's Facts & Figures
•Every 72 seconds someone develops Alzheimer’s Diseas
•The direct and indirect costs of Alzheimer’s and other dementias amount to more than $148 billion annually
•A person with Alzheimer's disease will live an average of eight years and as many as 20 years or more from the onset of symptoms.
•More than 7 of 10 people with Alzheimer's disease live at home. Almost 75% of the home care is provided by family and friends. The remainder is "paid" care costing an average of $12,500 per year. Families pay almost all of that out-of-pocket.
•Half of all nursing home residents suffer from Alzheimer's disease or a related disorder.
•The average cost for nursing home care is $42,000 per year but can exceed $70,000 per year in some areas of the country.(Source: Alzheimer's Association)
Ric: I have to separate every article of clothing otherwise he may want to put the vest underneath the shirt sometimes.
The confusion, the forgetfulness are all signs of Jesus’s Alzheimer’s Disease.
Ric: The funny thing is he has a subscription to GQ and he can’t dress himself.
It’s levity like that that helps both son and father cope with the disease’s progression.
Jesus: When you first found out that you had Alzheimer’s Disease, what went through your mind?” That I have what? No, no, no, no. I don’t know. Who says that? The doctor? Yeah? I’m going to go and talk to that doctor. I don’t have any, any disease. Right? Poquito.
Jesus’s son Ric gave up his job at Univision in Palm Desert last August to be a caregiver. Putting Jesus in a home wasn’t an option.
Ric: Family is family. That’s number one.
He moved in with his father soon after his mother died of breast cancer.
While my mom was sick, I realized what he was capable of and what he was not capable of, and that meant in my book that he needed some assistance.
Assistance like cooking his meals, and doing it with flair.
Ric: I try to cook the foods that my mother cooked. Sometimes he’ll sneak in and say Ricky you know that food was almost better than your mom’s stuff like that but I know he’s just joking because nobody could cook as well as my mom.
Jesus: Padre, muhito spirit desanto.
Assistance like making sure his father exercises, takes his medication and supplements, sifting through his mail and seeing that the elder Gomez’s mind gets used.
Ric: It’s a full day’s work.
And it's almost constant companionship.
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Ric: We go out to restaurants. We go out to family gatherings. We’re salt and pepper in that regard. He’s met a lot of my friends and associates. He goes when I go record commercials and record anything that I have to be working on. He’ll join me at times and he enjoys watching me work.
This time is also a chance for Ric to bond with his father in way he didn’t when he was younger.
Ric: I’m learning a lot about his stint in the Korean War. I get to be reminded about it on a daily basis. He did a wonderful thing for his country and he worked for the Naval Supply Center for 30 years so I get to hear about those stories quite a bit so he has some fond memories.
Jesus says he enjoys this time with his son the most.
Jesus: My son is everything that I have. He’s the only son that I have. He’s my, how far you say? What’s that mean Mi Mejor Amigo. He’s my best friend and you know and whatever I need he, you know, he give me.
Jesus has a daily routine
He gardens in the morning. He cleans while listening to Mexican music on the radio. And he relaxes by taking in Mexican soap operas. But given Jesus’s disease, the days do come with their challenges.
Ric: I wake up this morning at 6:30. He’d already made his bed and he was laying on it and he looked intense and I said “Dad, everything okay?” He says you still have the nerve to talk to me? And I’m going what did I do? He goes “You don’t remember?” He was very angry. He was very, very angry and I go what’s up? You said I made my bed wrong. You said this. You told me this. You told me this. I said, “who, who, last time I spoke with you. I gave you the sign of the cross. I said I love you. Sleep with the angels. That’s all I did. You think maybe you dreamt this, maybe you had a bad dream?” And he thinks about it and says “yeah, it was a dream.”
Those exchanges, Ric says, are becoming more frequent. And they leave him frustrated.
Ric: I hit myself a lot mentally because I think that at times, am I doing the right thing? Am I going overboard? Am I spoiling him? And then I think about it. I’m being like a parent. And I think that anybody who has been a parent knows that all parents questions themselves continuously.
The frustration and second-guessing run both ways.
Jesus: I say I can’t remember anything. I can’t remember and I still you know within a few more minutes I oh wait a minute, yeah, I know now.
Ric says at times he has to count to 10 to build patience with his dad.
Ric: Sometimes I’ll lose my temper and I’ll say things I shouldn’t say but at the same time it’s not my father. The illness is progressing and I have to keep that in mind.
He says writing about his care giving also helps. He’s started a blog called “The Trouble With Jesus” Blogspot.com But there are times when even that isn’t enough.
Ric: The Alzheimer’s Association has a 7-day, 24-hour hotline and I call it sometimes when I’m a little frustrated.
It’s those hotlines and counseling sessions and support groups that help people like Gomez cope with the stress, fatigue and sometimes depression that come with taking full-time of a loved one with Alzheimer’s.
Diane Beach: Often times, the caregivers don’t even recognize that this is going on because they’re so focused on the person they’re taking care of so I always tell people it’s imperative as a caregiver that you take care of yourself.
The local Alzheimer’s Association’s Diane Beach is with the San Diego chapter of the Alzheimer’s Association. She helps educate people about the disease. Jesus is in the middle stages of the disease. But those who are more advanced rely more on their caregivers for the most basic self-care.
Beach: They may be getting direct help with bathing. They may be doing the diapering. They may be actually brushing the teeth and putting out the clothes and then dressing them. Those responsibilities become more and more intense as the disease progresses so the care giving becomes much more intricate and stressful as time goes on.
Money is also a huge stressor for caregivers. California does have a law that protects spouses of Alzheimer’s patients from having to put all of their assets into caretaking. But adult children make up more than half of the Alzheimer’s caregivers. And they’re not protected. Ric says he and his father are lucky. They’ve saved well over the years. They have medical insurance and because Ric still does part-time work, they can afford someone to come three times a week to help with caretaking and cleaning. Ric says he can also count on his extended family.
Ric: It would be very scary for any individual that wouldn’t have those components in their lives.
And there are a lot of caregivers who fall into that category which makes them and the people they take care of extremely vulnerable.
Diane: Luckily there is Medicaid which will pay for nursing home care once the person is considered poor. But you know most families don’t want to do that. They really want to keep their loved one at home. So they borrow. They go into debt. This may be part of what was a college fund.
David Shenk: It’s a family tragedy now and it’s getting to be this social political catastrophe.
David Shenk is the author of The Forgetting: Alzheimer’s, Portrait of an Epidemic .
Shenk: We are at a really dark time in federal spending for Alzheimer's. We need a lot more money for this. We are headed for a train wreck. Baby boomers are going to turn 65 starting in 2011. Bill Clinton is actually at the leading edge of that. He's in the first year of the Baby Boomers so he's going to kind of signify the beginning of the Baby Boomers getting old.
Alzheimer’s already costs about $100 billion annually. Once, the baby boomers are in full bloom of the disease, that price tag is expected to jump to almost three quarters of a trillion dollars. All of that makes finding a cure imperative. But government funding for research has flattened over recent years. One way to stem the cost is to put more money into research. But funding for finding a cure has actually gone down. Ric Gomez thinks he knows why.
Ric: It’s not sexy. It’s not rock and roll. Everything you’re talking about and I’m talking about at this point is about aging. It’s about aging with grace. It’s about facing our maker one way or another. So people don’t want to talk about that. I mean if there’s an issue our American culture is very concerned about, it’s about dying. We try to avoid it like nothing else.
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