Tag Archives: respite care

Caregiving goals for a new decade

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Gerhard Gellinger/Pixabay

A new decade is upon us. It’s hard to believe that we are about to begin not only a new year, but a new decade.

Caregiver advocacy will remain a focus of mine, because there is so much work that remains to be done. We’ve definitely made some progress over the last 10 years, but here are the main areas I’d like to see positive movement in over the next 10 years.

Respite care: Caregivers need regular breaks, plain and simple. Sadly, many caregivers never get a break, leading to burnout and increasing their risk of becoming ill and needing care. We need to break that vicious cycle, but there are no easy answers. Respite care requires care providers and facilities that can step in and care for a loved one while the caregiver takes a break. Many communities lack such services or have very limited services. I’d like to see more funding, at the federal and state level, and some innovation in this area to bridge the care gaps and give caregivers the breaks they so deserve.

Support in the workplace: Caregivers are hard workers, but the time they may need to take away from their job in order to care for loved ones puts their careers at risk. It shouldn’t be this way. Not all jobs can be done remotely, but for those that can, employers need to dedicate resources and support teleworking for caregivers. Alternative schedules and flexible schedules is also essential in the modern workplace. We need to allow caregivers to earn a living and provide care for their loved ones. Universal family care would address many of these issues. No one should have to quit their job to become a family caregiver.

Effective Alzheimer’s treatment: There have been several disappointments over the last decade when it comes to drug trials that once held great promise in treating Alzheimer’s. Most have failed or underperformed. There is a threat that pharmaceutical companies may turn their focus to other diseases that may be easier to crack. But there are many bright minds in the scientific community who are dedicated to the cause. I won’t be so overly optimistic to hope for a cure, though that would be the best news of all. A treatment that could delay the most severe symptoms would be welcomed.

Better end-of-life care: If the previous decade has been about aging in place, the new decade should focus on how we are going to support end-of-life care, especially those who choose to die at home. From pain management to respite care to a lack of home hospice care in rural areas, we are not delivering the “good death”  that we are capable of as a society.

I wish you and your family a happy new year and hope this will be the beginning of a decade where we all can thrive and develop a more compassionate society.

 

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Recharging when you can’t take a vacation

For caregivers, taking a vacation is often a non-starter. Even if someone was to gift a caregiver a cruise or a resort stay, the effort it takes to find care for loved ones makes what should be a relaxing trip a stressful endeavor.

When I was researching options for Respite Care Share, I ran into that feedback time and time again. Who would watch my loved one? Even if I could find someone, I would worry about them the entire time I was gone.

Mini-breaks can really make a difference. I had last week off from work so I treated myself to a massage and a salt room treatment. I also visited a cat cafe, which always is a mood lifter. These were all short sessions, no longer than an hour, but they were effective self-care options.

 

So this holiday season, consider giving the caregiver in your life a local option for recharging. Some great options include gift certificates for a massage or other spa service, a restaurant gift card, or tickets to an entertainment event. As part of the gift, either offer to sit with the caregiver’s loved one, or find an adult day care or home health service that can provide care. The idea is to keep it short and simple and hassle-free for the caregiver. That way, they are more likely to use the gift and most importantly, enjoy themselves!

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Medicare and Respite Care – What Does it Cover? — The Imperfect Caregiver

Respite care is an issue I care about passionately, prompting me to launch Respite Care Share a few years ago. This guide offers an excellent overview about what respite care benefits Medicare covers. 

When it comes to our loved ones that may be living with health conditions that hinder their ability to perform everyday functions, we want to provide them with the best care. Statistics show that often, it is a family member that takes on this role as a full-time caregiver. Being a caregiver is one of […]

via Medicare and Respite Care – What Does it Cover? — The Imperfect Caregiver

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May 2, 2019 · 5:05 pm

Caregiver centers offer resources, respite

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Photo: Pixabay

I’m always interested in seeing how local communities are addressing the needs of caregivers. While it might be more convenient if such programs we’re centralized, there is quite a bit of innovation taking place at the community level that probably wouldn’t be possible with the red tape associated with federal government projects.

I was reading about the first caregivers center on Long Island, which is set to launch next year. The Family Caregiving Center will open at the Peconic Bay Medical Center in early 2018, providing caregivers with information on local resources, education seminars and counseling from care coaches.

Long Island, like other communities that are spread out geographically and lack efficient transportation options, faces challenges in serving its caregiver community. The caregiver center’s dedicated space will offer a respite for weary caregivers, while their loved ones are receiving hospital services.

The program’s director said while the hospital has been offering a family caregiver support group for the past few years, it’s become apparent that caregivers need more support. The director said it was a poignant conversation with a patient that really drove that point home. When she was sitting at a patient’s bedside in the ICU, she asked the patient if there was anything she could do to help. The man said his daughter could use support. He said that while he was receiving great support as a patient, his daughter wasn’t receiving any help as a caregiver.

That man’s selfless request helped spark the creation of the Family Caregiving Center. It will no doubt help many families for years to come.

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Power of animals to offer brief respite for caregivers

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I visited a local cat cafe for my birthday, and it’s a nice way to spend an hour surrounded by cats with a good cup of coffee. It made me think about how spending time with animals offers the harried family caregiver a convenient, affordable respite from the drudgery and stress of daily duties.

I’m always on the lookout for ways caregivers can slip away for an hour or two and recharge, while their loved one is at adult day care or being cared for by someone else.

For those who love cats, watching them can be relaxing and entertaining. Just observing a cat sleeping is calming, and kittens offer plenty of entertaining hijinks during play time. Petting a purring cat has been shown to have a calming effect.

Dog lovers can visit animal shelters or rescue organizations. Many times, volunteers are needed to walk dogs or just socialize with dogs waiting for a forever home.

Owning a pet may be overwhelming if you are a caregiver, so these options allow you to still connect with the joy animals offer without adding to your workload.

Another thing I love to do is visit butterfly habitats. I found that to be such a soothing, surreal experience, walking through an area filled with fluttering butterflies.

Some may have zoos or other wildlife retreats near them that they enjoy visiting.

Anything that gets you outside of your head for a brief period of time, and focused on something delightful is a worthwhile respite. (It would be nice if caregivers could enjoy a week-long getaway of their choice, but we know that’s difficult to do in many cases.)

We also know that animals can have a positive impact on those with dementia and other diseases. I remember visiting a cat cafe in Montreal, and the daughter had brought her mother, who appeared to have dementia. They both enjoyed their visit.

For more respite care resources, visit Respite Care Share.

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Marking National Family Caregivers Month

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I learned a lot about caregiving from my mother.

Before November slips away, I want to recognize that this is National Family Caregivers Month. I love this year’s theme: “Take Care to Give Care.” Supporting family caregivers is something I believe strongly in, and I am grateful I have the opportunity to give back.

My development of the Respite Care Share concept continues, and I’m working on the poster presentation that will take place at the 2017 Aging in America conference. Along the way, I’ve met many dedicated family caregiver advocates. We have a long ways to go, but as with most things, a grassroots-level, community-based approach will generate quicker results than waiting for government action.

The Caregiver Action Network offers good tips for family caregivers on managing their own health.

  • Stress: Family caregivers often face a tremendous amount of stress, yet ignore their own mental and physical health. I was certainly guilty of this when I was a caregiver. It’s important to take steps to minimize and manage stress, and promptly address any health issues that arise.
  • Healthy lifestyle: It’s easy to throw out healthy habits like a nutritious diet and regular exercise when you are overwhelmed with family caregiving duties. But a poor diet and sedentary lifestyle can make one feel sluggish, and more vulnerable to experiencing health consequences from stress. There was a walking trail adjacent to my mother’s condo, so I went almost daily for walks, which helped relieve stress.
  • “Rest. Recharge. Respite.” I love this mantra from the Caregiver Action Network. My sleep was disrupted every day when I was caregiving for my mother, and there was no way to avoid that (leaking colostomy bags always seem to occur at 3 a.m. and will not wait!), but I tried to make sure I got a set amount of hours of sleep each day. I did take breaks when Mom was stable enough, and that really helped.

A big thank you to all of the family caregivers out there, who are facing another hectic holiday season. There are many people focused on providing greater support for family caregivers, so don’t give up hope.

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What’s the best support a caregiver could receive?

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I am participating in the OpenIDEO’s end-of-life challenge and my idea made the top 50 cut.

The challenge is to reimagine the end-of-life experience for ourselves and for our loved ones. I focused on the end-of-life experience as a caregiver, and the importance of respite care. When caregivers become burned out, everyone suffers. Everyone needs a break, and the end of life can be a longer road than expected. That’s why I submitted the idea of Respite Care Share, which would offer free or discounted vouchers that caregivers could use at hotels and on vacation rental services like Airbnb. Caregiving assistance while the caregiver is away would also be part of the package.

While Medicare covers an allotment of respite care days, and will place a patient in a facility during the respite care period, I found that respite care can be restricted depending upon if there are available beds in a participating facility. Even if you can place your loved one in a facility or find appropriate home care, a nearby weekend getaway can help clear the mind and renew the spirit.

Now I need your help in propelling the idea forward.

The idea as it stands now is that the caregiver respite vouchers would be presented as the centerpiece of a caregiver care package. These packages would include vouchers for respite care and other services, such as massage and other spa services, yoga classes and other personal enrichment services that focus on relaxation.

If you would be so kind as to respond to this 3-question survey, I would greatly appreciate it:

Caregiver Appreciation Survey

Feel free to leave comments on this post as well and share the survey link with other caregivers.

Bottom line, whether you are a current, former or future caregiver, how likely would you be to use respite care vouchers? Is there another form of caregiver support you would rather receive? What else would you want to know about the program?

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The gift of taking a break

It has been so long since I have taken a real vacation that I can’t even remember where I went the last time.

The last several years, taking a real vacation was simply not an option. When you are a caregiver, you are on call 24/7. This is true even if you are a long-distance caregiver. Any time I went away for a few days, I was concerned if I lacked a cell phone signal. Wonder if Mom needed me? Wonder if Dad took a turn for the worse? While I found some enjoyment in weekend trips to the mountains, I never truly could tune out of life’s responsibilities.

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This time, in a trip that was postponed for several years, I took a full week off to visit Florida, stopping in Sanibel Island, Key West and St. Augustine. Sure, it was expensive. Yes, I don’t need any more debt.

joy beachBut if I’ve learned anything over the last several years, it’s that life is unpredictable. Over the last year, several bloggers I follow have lost a parent or other loved one, just like I have. After we have served as dutiful caregivers, the future opens back up for us, and that can be both beautiful and intimidating, like the ocean I viewed over vacation.

I’m trying to be mindful of not putting life’s pleasures on indefinite hold. We don’t know how long we have here, and how long our health will hold up to allow us to enjoy traveling.

Whether you are a caregiver or not, we all need respite from the daily grind. It’s not always feasible to take a trip, but taking a break can come in many forms. I encourage everyone to take time out just for themselves, whether it’s an hour, a day or a week. It’s not selfish to do things for yourself; it’s crucial to your mental, emotional and physical health.

I would love to hear how you recharge, even if you can’t take a traditional vacation.

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“Your mother is driving me crazy”

If you have been following my blog over the past few months (which I greatly appreciate by the way) you know I have been serving as a caregiver for my mother, who was diagnosed with colon cancer. She has made great strides in her recovery. Tomorrow, I’m going home for hopefully a three-week respite until the week of Thanksgiving. I know there are caregivers that never get a respite for years while caring for family members, so I am indeed grateful.

That said, Mom and I are like oil and water. Mom is an extrovert to the extreme; I’m an introvert to the extreme. We were never meant to live together for an extended period of time as adults. I’m a very independent person that, at 38 years old, balks at the idea of my mother telling me what and when to eat, what to wear and how to act. Mom was used to having my Dad to cater to for 40 years, and he was extremely dependent upon her. The man could not have made a cup of coffee for himself. Their relationship was a sign of the times, where the man worked outside of the home, and the woman was the queen of all things domestic.

I know it has been hard for Mom to adjust to losing a great deal of the personal control she had over her domestic life. However, as caregivers know, that doesn’t mean you allow yourself to be bullied. Setting boundaries is a very important step for caregivers, and I have stuck to mine, even if Mom has been displeased with having to deal with her adult daughter versus the little girl that she forever sees in her mind.

So bottom line, neither Mom or I are saints. We get on each other’s nerves, and that’s just the way it is. But through the most difficult of times, I have thought about one of the last sane things Dad said to me, as I was departing from a brief holiday visit a few years ago. I couldn’t wait to get away, back to my life. I told Dad to take care. Dad said, “Your mother is driving me crazy.”

Now, I’m not blaming Dad’s dementia on Mom’s control freak ways. As I said, Dad was very dependent upon Mom, long before the Alzheimer’s set in. But living with my mom these past two months does give me a better appreciation of what Dad experienced. I think Dad was much better at tuning out and letting things just roll of of him than I am.

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