Caring for a Sick Spouse

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For the past forty plus years of our marriage, my husband and I have taken turns being sick and having surgeries. Not long after I married, I came to the realization that my husband would be undergoing knee, ankle, and foot surgeries for the remainder of his life. Dan’s walking abilities would gradually become more and more impaired. This created a hope for us to fulfill certain dreams sooner than later.

This thought intensified when I became critically ill with an undiagnosed neurological disorder in my early forties. Dan became lovingly protective of my health in the ensuing years, especially after my symptoms progressed and I underwent brain surgery. I also became increasingly concerned about Dan’s walking. We often competed over household tasks–who would do which chores so the other wouldn’t have to, both of us secretly doing laundry or shopping before the other had the chance.

I’m not sure who’s done the most caregiving in our marriage, but I can tell you Dan’s done a great job caring for me. I know that when one spouse is caring for the other, it’s easy for caregiving to overtake other priorities in the marriage. Spousal caregiving is tough, and I think that success if found in the small things.

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  1. Find ways to enjoy each other. Focus on the things your loved one has always been interested in and loved. Read or listen to books about those things. Watch a TV show, movie, or series about them. Research a prominent person in that field. Or you might consider taking a fun online class. Complete a project (genealogy, writing, birdwatching, creating an e-book, or organizing family pictures, etc.
  2. Listen to music and recorded books. This doesn’t take time from your daily route and can also be enjoyable for your loved one. Check your local library for books on CD. Be sure to ask your loved one about their interests so you can come up with mutually chosen titles.
  3. Do things you like separately. Find a favorite spot in a local park, library, museum, or space nearby where you can slip away for refreshment. Spend time with friends at least once a week. Ask some from your family, church, support group, or community to give you the opportunity for respite.
  4. Create “islands” of respite each day. Step out of the house and look at the sky. Keep books in the bathroom and take short reading breaks. Ask friends to stop by and visit for an hour or two so you can walk around the black or take a drive, visit the park or library, a movie, or time to drive some place quiet and enjoy the solitude. Spend ten minutes in your garden (or your neighbor’s).  What refreshes you? Find ways to inject mini-burst of these things into your day.
  5. Find someone to confide in. This may be someone who has cared for their ill spouse or a compassionate, affirming friend. Caring for a spouse can stir feelings of anger and frustration, and husbands and wives can feel like they’re betraying their loved ones by sharing confidences and circumstances that can naturally result from the stress of caregiving.
  6. Call a friend or family member every day. You need connection to the world beyond the walls of your home. Take time to stay connected to close friends and family members. Ask about their lives, interests, and prayer needs. Whenever possible, use Skype or FaceTime. You need to see faces, and people need to lay their eyes on you.
  7. teamwork-294584_960_720Ask for help. You need help–regular breaks, physical, and emotional support. If your spouse has adult siblings, ask for their physical help or financial assistance to hire aides, respite workers, or to secure a respite facility on a scheduled basis. If they refuse, look for someone to assist in mediation–a pastor, counselor, or senior care specialist, or possibly even a lawyer. If you have adult children, ask them to help. Include your church or parish when you ask for assistance. Many churches are able to offer considerable help. And always consult county social workers and the Area Agency on Aging to see what services you qualify for. We were grateful to discover free respite care for our loved ones that allowed us getaway breaks a few times a year.

As much as possible (and it isn’t easy), try to compartmentalize spousal care from your personal time together. Try to preserve time for the two of you to simply enjoy one another. One of my most treasured memories is of watching the light in my mother’s eyes as my dad read his diaries to my mom during the years she lived with Alzheimer’s. Even in the debilitating shadow of Alzheimer’s, couples can share meaningful moments together.

PHOTO CREDIT: 9jaFlave

How the Dignity Project for Caregivers Can Help You Feel Less Alone

Dignity CoverI’m privileged to be a caregiving expert for Caring.com, the leading online destination for family caregivers seeking information, support, in-home care, and senior living options for aging parents, spouses and other loved ones. Caring.com‘s mission is to equip others. They equip family caregivers to make better decisions, save time and money, and feel less alone — and less stressed — as they face the many challenges of caregiving.

As part of their mission, Caring.com evaluates products and services that are helpful to caregivers. Recently, Caring.com reviewed the Dignity Project for Caregivers. Caregiving for an aging loved one is a different experience for each person. Whether caring in the early or late stages of life, it’s always great to be reminded that, as a caregiver, you are not alone. Many Caring.com members are able to gain encouragement through constant contact with other caregivers via online support groups. Another option is the Dignity CD, a compilation of songs and stories to help caregivers feel less alone. Here, find out what the panel of family caregivers thought about Dignity.

What Is the Dignity Project?

Dignity is a compilation of music and spoken word selections directed at caregivers of adults. It can be purchased as a CD or listened to as an MP3 through the CD’s website. The songs and stories cover many dimensions of caregiving, with the perspectives of generations of family caregivers, paid caregivers, and others.As a caregiver for more than a dozen years, as well as a caregiving expert, I encourage you to visit Caring.com and check out their wide-ranging, vital resources for caregivers, as well as their review of the Dignity Project for Caregivers

How Adult Day Services Can Help Loved Ones with Dementia

Male caregiver

According to a 2012 report from the Alzheimer’s Association, over 15 million Americans provide unpaid care for  the one in eight older American with Alzheimer’s or dementia.

But a diagnosis of dementia does not necessarily mean that a loved one must be placed in long-term or nursing care. My husband Dan and I cared for my father and my mother, who was diagnosed with Alzheimer’s, in our home for five years. During that time, we found a dementia-related adult day service program that provided the specific type of mental stimulation Mom needed. She attended this program several days a week. It not only provided respite for Dan and me as caregivers, but the program helped preserve and extend my mom’s quality of life.

Adult day services (ADS) benefit both care recipients and family caregivers. Our program was offered at a site sponsored by our Area Agency on Aging and offered the following benefits for the care recipients (in this case, my mom and dad):

  • cognitive programs geared to stimulate the specific needs of those with dementias and Alzheimer’s
  • a supportive environment for my father, who attended with my mother
  • much-needed social interaction
  • music therapy, art therapy, and educational programs I could not provide at home

Adult day services also offer valuable benefits to caregivers:

  • much-needed breaks for social interaction or rest
  • time to focus on work
  • time to focus on other family members

Dan and I were even able to access transportation that picked my parents up at our doorstep and delivered them safely to their caregiving location.

I’m convinced that adult day services extended my mother’s quality of life, and I’m enormously grateful for the staff there who helped educate our family as my mother progressed through the various stages of Alzheimer’s.

So how do you sign up?

Check with the Area Agency on Aging in your community to find a location near you. Schedule a visit and take a tour. Talk with the director and other staff. You may find that different facilities offer different programming. Ask about transportation, meals, services (for instance, the program that provided care for my mother also bathed her), and respite vouchers. And ask if they offer a list of referrals.

Caregiver Respite and Laughing until Your Face Hurts

Members of River City Improv

Members of River City Improv

At the age of fifty-three, I’ve become a groupie. It started four years ago, when my 1,200-square foot house was closing in on me.

At the time, Dan and I were taking care of my mom with advanced Alzheimer’s and my dad in our home. We were also caring for Dan’s dad, who we’d just moved from our house into a Veteran’s facility five miles away. We’d had one week to hustle Norman’s single bed and belongings downstairs and bring in a queen bed and Mom and Dad’s possessions. It was a wild and wooly seven days, with shower chairs, Ensure, prescription meds, C-pap machines, and incontinence products flying in all directions.

During those last three years of in-home care for my parents, my house was the place where I wanted to cry the most but couldn’t find the space. Mom and Dad’s room was just three steps from my own. Before coming back to Michigan from Iowa, Dan and I had owned a five-bedroom, three-bathroom house. We’d enjoyed a master suite in a wing off the back, while our adult kids had spaces of their own in the basement and Norman had the freedom to rattle around in his own bedroom, sitting room, and bathroom. But even with the added space, our house was still a place of stress during those years. We were always listening for the next fall, always checking med levels, always bathing, feeding, hovering, and soothing.

And and much as we loved our role as caregivers, we had to leave our house to truly relax. We were always on duty at home, never truly able to rest when our parents were living with us. And because Dan and I worked alongside each other in a ministry setting, it was even more important that we figured out how to find ways to relax, laugh, de-stress, and communicate on topics other than parents and work.

Respite took some interesting forms over those eight years. We went to a lot of movies to escape the house and find a reason to laugh or cry. I wish I could tell you that we talked our insurance company into paying for our Harley. (In the end, I believe it was a lot cheaper than a stroke, heart attack, or divorce. ) Our road trips were our chance to enjoy nature and let the tension fly. So was the tiny cabin we bought for our daughter for a thousand bucks (yeah, I said a thousand) and renovated as a family. Now that was a respite plan, folks. Stress release with a crowbar and a sledge hammer.

Every caregiver needs to find ways to find respite, and they don’t need to be as expensive or extravagant as a Harley. When we moved to Grand Rapids and discovered a clean, Christian improv company, we quickly became their biggest fans. On two separate occasions,  River City Improv performers have actually stopped the show because of my maniacal laughing. But what can I say? It’s the laughter of a woman who often walks a fine line between faith and freaking out. Dan and I often leave at the end of the night with aching cheeks, having stored up enough laughter for days.

Respite can be found if you’re willing to look and willing to ask. Got a friend with a hot tub or jacuzzi? Ask if you can borrow it for an hour once every two weeks, and while you’re asking, she if they’d be willing to come sit at your house with your loved one. Do you have a lovely historical library? Make it your favorite place to read once a week and soak up the beauty. Do you have a community nature trail? Go for regular walks–alone or with a friend.

Find places that refresh your soul and feed your spirit. They may be as close as the spare room in the basement, the creek in the back meadow, or the bowling alley across town. Throw in a good laugh and let your endorphins run wild. And if you ever get to Grand Rapids, join me with the River City crowd. I’ll be in the second row, laughing until my face hurts.