Category Archives: Family Caregiver Profiles

Dads of Disability: An Early Father’s Day Gift from a Jedi Knight

cover-dietzGary Dietz is author of “Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them).” Gary’s son, Alexander, has an interstitial deletion of the lower arm of chromosome 13.

Dads of children with disabilities are just like Dads with children who are not mentally or physically disabled. We have our good days and bad days, our heroic moments and selfish times, our regrets and our triumphs. Let me tell you about an early Father’s Day gift I got this year.

My fourteen year-old son, Alexander, has attended a specialized residential placement for the past two years due to multiple behavioral, intellectual, and sensory issues rooted in a 13q genetic deletion. Despite this drastic life change, we rock out at dinner every Wednesday night and charm the locals. We have sort of adapted to only seeing each other at home every other weekend. Together, we have done a pretty good job of sharing our home this past year with my significant other of three years and her two younger children.

But challenges arise, and they are not always with Alexander!

It is a three-hour roundtrip drive to pick up Alexander and bring him home for blended family time together. Although  I  look forward to this time together, things can go wrong—keys get locked in the minivan, soccer game schedules change at the last minute, Alexander might need to leave a movie after only 30 minutes—and it leaves me feeling uncharacteristically jealous of Dads with typically developing children. A Dad never really gets completely over the whole “comparing” thing between typically developing children and children with special needs. Despite my son’s excellent behavior, decent communication of his needs in the movie theater, fun on the playground, and patience with the schedule changes, I can feel a bit jealous of the other kids’ ability to just go to their soccer game and actually stay through the end of the movie to have a more typical Saturday than I get to have with Alexander. A daddy micro-meltdown isn’t really allowed. Just when a grown-up is ready for a good tantrum, the wisdom of children shows up and we realize how much fun our weekends together can be. My eight-year old stepson, Avery, stepped up on one challenging Saturday and announced: “It’s time to have some boy time. Girls stay upstairs. The boys are going to have a light saber battle downstairs.”

The force is strong in this one.

The next thing I know, Avery led Alexander and me downstairs, set up some rules, handed out the light sabers and then we started the epic light saber battle. Physical fun! Boyhood playing with toy swords!  Alexander was really doing well, much better than I think Avery expected. But we were all having fun. We were running around like crazy Jedi Knights and swashbuckling with our laser swords.

In those few moments of light-hearted fun I had a rare, brief glimpse of my son in a very typical activity and the “disability” melted away for that time.

A Happy Father’s Day to all the Dads out there—on their swashbuckling days and their meltdown days. We are all united in the love for our children of all abilities.

Visit www.dadsofdisability.com  to read Gary Dietz’s blog and find information on how to purchase his book.

I Thought It Was My Job – The Stress of Caring for Mom

When I started taking care of my mom I thought it was something that I needed to do. You can’t make up for all that parents do for you in a lifetime in just a few short years so I saw it as a calling. I thought it was my job. In life, there’s a kind of symmetry. You’re supposed to care downward for your kids and upwards for your parents.

It was running me ragged but I didn’t feel like I was getting burned out. I never asked for help directly, but my friends told me I was going to burn out. Thanks to them, I got help and I’m so glad for it.

Let me go back a bit and kind of fill in the background. My name is Chris and I’m the father of two boys. Gabriel is 9 and turns 10 in October and Nash just turned 5. My mom, whose name is Natalie (and the kids call Grandma), will turn 88 in August. We lost my father two years ago mid-June. He spent two weeks in the ICU after having a heart attack. They were all set to put in a pacemaker, and he had woken up and was talking, when they discovered he had a septic infection on the morning of the surgery. They lost him.

It was tough and it was kind of a rollercoaster.

Once we got his service taken care of and life got back to “normal,” Mom finally went into the tests we’d been putting off. She’d been having chest pains and just two months after we lost Dad, the doctors decided Mom needed quadruple-bypass surgery. She spent the next few months recovering.

Ideally someone in her situation would exercise as much as possible, and she did the required rehab – but only 36 weeks is covered by insurance. As a result we’re just trying to maintain. I don’t expect we’re going to see any marathon running in her future.

Mom now spends most of her time in bed. She has a lot of pain management issues – her hips and back hurt when she puts weight on them – even sitting up can cause her pain. So she spends most of her time horizontal. The pain meds also make her tired and drowsy because she’s on so much of them. I think she sleeps a lot.

I don’t think we’d be in the spot we are now if Dad hadn’t died. They were very symbiotic. They went everywhere and did everything together. This wasn’t because they needed to, it’s because they wanted to. My mom commented one time that she was not a woman’s woman. She said, I never had knitting clubs or bridge clubs – your father and I did things together. He didn’t do those things either – he never really went out with the boys or things like that. They weren’t clingy, but just liked each other’s company. I invited Dad to lunch one and day and he said, let me see what your mom’s doing. I kind of thought maybe it would be just him and me and he told me: “I’m not going to go anywhere without your mother.”

I don’t really mind doing things for my mom and I’m not a stranger to stress. I’m an air traffic controller in Kansas City. It’s the kind of job that has periods of boredom punctuated by moments of extreme terror. My father was a flight instructor in the Navy in WWII and I started flying lessons in college. He and I flew together. Aviation is something I enjoy and that helps make my job less stressful.

Once again – I thought caring for Mom was my job. She liked it too. I’m an only child and I think she’d rather I do everything around her house. She’d rather have me changing her sheets instead of a stranger. She’d rather have me go grocery shopping instead of a stranger.

After Dad died and she got sick we looked at moving her into a facility. A friend of mine helps to run one so we went and visited but it didn’t fit for a couple of reasons. First, Mom is still a fairly private person and, whether she is right or wrong on this, her perception in living in a large building with essentially 300 apartments in it and coming to a community area to eat was a loss of privacy. Second, the apartments were about a third of the size of the place she’s in now. She wasn’t sure she wanted to downsize and she also didn’t want to go through the emotions of moving and getting rid of things. Also, she’s not an invalid. She still drives her car. She can get in and out of the bathtub and bed. She cooks her own food and can go to the bathroom on her own.

But my friends knew I needed help. I was with my boys, tromping around the woods in a park. We were literally wading through creeks and chasing frogs when my friend texted me about an in-home care option. I said, sure, it’s worth learning about. Within five minutes, a text rang in from Patty Garrett asking when we could get together. In case you don’t know, Patty runs the Homewatch CareGivers in Kansas City.

Since Patty has come into out lives I think it’s turned out to be a great benefit. The time that mom and I spend together is now is quality time – it’s not just being together while I’m taking out the trash or cooking or whatnot. Mom used to say, why don’t you sit down? And it’s because I had a short amount of time to get a lot done.

The woman coming in is also a good person for mom to talk to. If I was not there – Mom kind of said she didn’t have a reason to get up.

Our caregiver comes in for four hours a day three days a week. They’ve inventoried her pantry and fridge, cleaned and folded the laundry, gone shopping. Sometimes they just sit out on the patio together and watch the world go by.

This is way better than having her in a facility. I think moving her at this point would be a lot of upheaval and this staves that off for a while. And this keeps her in her home.

I traveled for work last week for the first time in a long time and it was nice to know that somebody was going to check in on Mom.

Patty used to say, we’re anxious to give you back your relationship and I thought that was touchy feely, but that’s exactly what’s it’s been.

 

Chris Followell and his family live in Kansas City where he works as an air traffic controller.

Join the discussion at Homewatch CareGivers’ new interactive forum: www.malecargivercommunity.com.

National Family Caregiver of the Year Finalist Spotlight: Patricia Hurt

“She went against everything the doctors and nurses said and she willed this child to live,” said Sue Cook, owner of Homewatch CareGivers of Summerlin.

Patricia Hurt has been providing care for her daughter Amanda for an incredible 21 years.  Despite a normal pregnancy, Amanda was not supposed to live more than two or three days after she was born, but because of sacrifices and efforts made by her family she has been able to experience life beyond childhood.  Yet, in some ways she will always remain a child.  “It’s as though the family has had a baby all this time.  That’s the biggest struggle they have.” Said Sue.  “Although we all love our children and take care of them as they grow they still mature and leave us.  This will never happen for them, this is a lifetime commitment.”

“I was amazed at the unity of this family for Amanda,” said Therese Elliott who nominated Patricia for the National Family Caregiver of the Year Award.  “Their entire lives have been centered around caring for this child.”  Every decision made in the household is made to enrich Amanda’s life at the expense of the rest of the family.  Patricia and her husband have 5 other children, and it is with the support of their amazing family that they are able to carry on.  “Had it not been for the complete devotion of this mother and the support of this beautiful family Amanda would have never lived this long,” said Therese.  “I have been caring for families for the past 14 years and this family is the most caring, loving family I have ever met.”

The sacrifice for Patricia is great, “she gave up an outside life for a long period of time.  That’s a difficult situation for any person, but I think it’s within a lot of us.” Said Sue.  Patricia home schools her 8 year-old daughter so she can plan her day around the care that Amanda needs.  She has to do everything for her, which requires complete 24-hour care.  Patricia has quit her job and battled health obstacles and sleep disorders due to stress.  In order to avoid being overwhelmed Sue suggests looking to others for help.  “I think that you have to look to other people.  I think they’ve been fortunate to have such a big family who are willing to help, however most of the time it comes back to looking outside the family unit.” “One of the most important things is to look for the options and don’t be afraid to ask for help.  In the beginning this can be difficult, but it’s something we all have to keep in mind when we are struggling.”

In home care can provide respite for family caregivers and aids the caregiver in “stepping outside his or her caregiving role for a period of time,” said Sue.  For more information on Homewatch CareGiver’s in home care services click here.

Caregiving for the Young: Tim Betz Family Caregiver Spotlight

“Celia and Grandpa Tim bonded immediately after she was born,” says Tim’s daughter-in-law Jenni.

Tim Betz was thrilled to welcome his granddaughter Celia into the world after only having sons himself.  The two quickly bonded as they spent the first year of her life playing together nearly every day.  He always held her when she cried throughout the diagnostic process.  Tim held her still as Celia sensed his love overwhelming love for her.  “The most compelling part of this story is how great of a grandfather Tim is,” said Freddie Rufus, Q.A. Communication Representative of Homewatch CareGivers Columbus.

Shortly before her second birthday Celia was diagnosed with Batten Disease, a fatal neurodegenerative disorder.  There are no treatments for Batten, and Tim’s visions of future birthdays and graduations with his granddaughter started to slowly slip away.

A new reality constructed around the whole family as medical bills began pilling up.  Tim and his wife began taking care of Celia at their home and as two years passed the family saw Tim’s compassion and care as hospice nurses came and went every other week.  Caring for Celia required a great amount of time.  Tim and his wife began crushing pills, pureeing foods, changing diapers, and rocking Celia in the middle of the night. Luckily, Tim was a trained nurse practitioner; therefore the care Celia received was excellent. “When she develops a cough, he percusses her chest for hours each day.  When her weight dips, he concocts a special blend of high-fat porridge.  When she’s in pain, he holds her hand, sings to her, and strokes her hair,” recalls Jenni.  Tim sacrificed time with other family members and survived health issues of his own while he and his wife cared for Celia for at least 24 hours each week.

Celia’s time with her grandparents allowed her parents a much-needed break and an opportunity to bring in more income to pay medical bills.  When Tim isn’t caring for Celia he spends his time raising awareness for Batten Disease, in hopes of raising funds for research.  “Not a lot of people have heard about this condition,” says Freddie.  “It’s important to give the knowledge about what the syndrome is.  At first the symptoms seem normal, but it is important to be able to recognize the difference and create awareness about the disease.”

Celia is four years old now, and her brain continues to wreak havoc on her body.  She suffers seizures, has gone blind, and is bedridden.  Although the time Tim spends with his granddaughter is not how he imagined it, “he spends perhaps more time with her now than he might have where she healthy,” says Jenni.  “He realizes their time together is limited, and considers it a privilege to help with her care.  We consider it a blessing.”

Twin Brothers and the Fight Against Cancer

National Family Caregiver of the Year Spotlight

“Reading nominations for people like Tom unleashes the caregiver inside of us and suddenly we are able to reach farther than we had before, and give more than we thought we could give,” said Richard Williams, owner of Homewatch Caregivers West Los Angeles.

Tom Hendrix was devastated when he learned that his twin brother, Joe, was diagnosed with non-Hodgkin’s lymphoma.  It was decided that Tom would become the caregiver for his brother throughout his fight with cancer.

“The 11 years of Joe’s battle was a roller coaster journey,” said Judith Opdahl, Executive Director of The Wellness Community, who nominated Tom for the Homewatch CareGiver’s 2011 National Family Caregiver of the Year Award in L.A..  Joe faced many aggressive treatments, including a stem cell transplant—for which Tom was the donor—and a heart transplant.

Ms. Opdahl met Tom and Joe at The Wellness Community in California, where both attended support groups. Tom, accompanied by his wife Tanya, attended a group for caregivers and Joe attended a group for patients.

“Throughout my tenure, I have seen many cancer patients across our threshold, and many caregivers express love and support for them—but none stand-out quite as vividly as Joe and Tom Hendrix,” said Ms. Opadhl.  She watched Tom and Joe fight for recovery in a very special way that she have never observed in spouses or partners.  “They seemed to feel each other’s happiness and pain,” said Ms. Opdahl.  “Tom used to say to me, ‘I really don’t know what Joe is going through… but I can feel it’.”

Unfortunately, Joe succumbed to his cancer earlier in 2011, after his heart transplant became infected and his immune system was too compromised to recover.  Tom and Joe decided it was not worthwhile to attempt another heart transplant.  “In Joe’s final days, many friends dropped in to express their love for Joe, and their gratitude for the brother that would not leave his side,” recalled Ms. Opadhl.   Tom slept round the clock on the floor at Joe’s bedside until he peacefully passed away.  Tom continues to visit The Wellness Community to tell stories and remember his days with Joe.

“They were big strapping guys, so dealing with the weakness that comes from cancer was difficult. You loose control of what—and how much—you can do. This is especially true when you’re big and athletic and accustomed to walking into a room and people give you space because you’re ‘the guy’,” said Mr. Williams.

Everyone who witnessed the brothers during this time agrees that it was complete change in roles and Joe could not have made the adjustment without Tom’s help.

When asked what was most memorable about Tom’s story Mr. Williams recalled, “The fact that they were twins – they jumped-in together and were a team, it was particularly touching.”

“Tom was an emotional support. He also coordinated things for his brother, he slept in the room with him in the hospital. Anything his brother needed… he was there for him.  A paid caregiver can do that as well; they can be at your disposal, be in the hospital with you, said Mr. Williams.  “However, there is nothing like family and paid caregivers are there to support the family – paid caregivers supplement what the family does and we could never hope to replace that relationship.”