Finding Your People: A Guide To Online Communities For Caregivers

A Guide To Online Communities For Caregivers

Caring for someone else’s needs is a lot of work, and at times, a thankless job – even when it’s for someone you love. Learning the ins and outs of the various conditions your loved one may be suffering from, figuring out how to navigate Medicare and hospital paperwork, managing the physical toll, and even the financial strain is enough to make anyone second guess why they took on the job in the first place.

But finding a community of people you can lean on can be a real lifesaver. A great community can connect you with others who have experienced what you’re going through. You’ll find people who can answer the questions you may be dealing with, and those you can just vent to about the rough time you’ve been having lately. They can share tips and resources, knowledge and compassion. 

Living in such an online world makes it easier than ever to find a group you can lean on. Message boards and forums are a great place to connect with a lot of people like you, and to get and share a lot of information in one place. 

So what are you waiting for? Here are some great groups to check out. Most of these allow you to poke around a bit without posting anything, which is a great way to learn a lot and also get a feel for the community.  When you’re ready, share your own voice and start reaping the rewards that come with having a large group of caring people to lean on.

Online Communities For Caregivers:

Agingcare.com

The National Association For Continence Message Boards

The Caregiver Space

Know of some other great forums for caregivers to connect? Share them in the comments!

Online Resources For Caregivers

Online Resources For Caregivers

Choosing to take on the role of Caregiver can be daunting. The paperwork alone is overwhelming, let alone the emotional, physical and financial toll it can take.  Where can you turn for help? Luckily, there are a number of great resources out there to help you navigate the various tasks of caregiving.  See below for a list of organizations that offer help and support.

Useful Online Resources For Caregivers

AARP Family Caregiving

AgingCare.com

AssistGuide Information Services

American Red Cross

ARCH National Respite Network and Resource Center

Caregiver Action Network

ElderCare.com

Eldercare Locator

Family Caregiver Alliance

Medicare

National Alliance For Caregiving

National Clearinghouse for Long-term Care Information

Social Security Administration

State Health Insurance Assistance Program

For a more complete list of resources, visit the Caregiver Action Network’s comprehensive list.  

Patient Perspective: Debbie's Story

Debbie's Story - Supporting Her Husband With Incontinence

My husband suffers from incontinence. He has for years. He never thought I knew, but I noticed when he would rush to the bathroom with a change of underwear. I watched as he consistently sought out the restrooms anywhere we went. And I definitely noticed the changed bed sheets when I would come home from work due to leaks the previous night. 

I wanted so badly to help him. To talk with him about it. To tell him that I understand and that it is ok. But how do you tell an ex-army man whose very core is built on pride and being strong that you’re concerned about him wetting himself?

So, I stayed silent for years, and so did he, until finally he couldn’t anymore. We were out to dinner with friends when he had an accident, and had forgotten to bring along a spare pair of underwear. Panicked, he made up an excuse for us to leave immediately, and finally broke down in the car, telling me what I had known for years.

He was so ashamed, but I did my best to show him that I was supportive and didn’t think any less of him because of it. In the end, telling me was the best thing that could have happened, since I finally was able to help him.

We made an appointment to go see a doctor together, and he learned the many options available to him for treatment. He’s doing so much better now.

And though he still has some occasional leaks, he knows that he has me to lean on and doesn’t have to live with the stress of constantly trying to hide it.

I only wish I could have given him the courage to speak up sooner.
 
Debbie R., Omaha, NE

Patient Perspective: Julie's Story

Julie's Story - Caring For Her Incontinent Mother

I’ve always been close to my Mom, but after my Dad passed away 5 years ago, we became closer than ever. We talked on the phone every day and I checked in with her every weekend. She was still very active, even after Dad passed, and continued to play golf every month, meet her girlfriends for bridge and walk her dog two times a day.  All of this changed when she had a stroke.

Suddenly, my very independent Mother was unable to do most things for herself.  Without a second thought, I took her in and cared for her as much as possible as she began her slow path to recovery. It was a shock to suddenly watch a woman that I always looked to for guidance become suddenly, completely dependent on me.  

I’m not going to lie - it’s been difficult at times.  She has always been a very proud woman and to have to ask for help for things like using the bathroom, or worse, to need help cleaning up after an accident, was mortifying for her and uncomfortable for me.  

After some trial and error, we finally developed a rhythm with each other and learned which products worked best for day and night. Even though it’s hard, I’m so grateful to still have my mom with me, and I can’t thank organizations like NAFC enough for providing education on management options during this difficult time of life. Help is there if you need it - you just need to know where to look.  

Julie F., Tampa, FL

Tech Tips For Helping A Senior From A Distance

Tech Tips For Helping Seniors From A Distance

Tech Tips For Helping Seniors From A Distance

As we age, it’s normal to need a little help. Most seniors function just fine; it’s just that sometimes, support from loved ones can make a positive difference. That’s why you're ready to help your parents or senior friend.

Decades ago, you had to live near a senior in order to offer help. If you lived far away, there really wasn’t much you could do; however, technology has changed a lot since then.
These days, you can provide some form of assistance even if you live on the other side of the country. But before you can delve into tech like this, it helps to understand what kind of help seniors often need.

Problems Faced By Seniors

Lumen Learning has a free online course that describes the unique challenges faced by seniors. Some of these challenges include:

  • Financial problems brought on by less income and more healthcare expenses.

  • Ageism, or discrimination and prejudice based solely on the senior’s age.

  • Mistreatment or even abuse by people who should be providing care.

  • Loneliness and few opportunities to socialize.

  • Depression and similar mental health issues.

Of course, one of the biggest challenges seniors face is health. Thankfully, people are living longer than ever; the consequence of that is having more health problems. As Everyday Health explains, many seniors face the same medical conditions:

  • Arthritis

  • Heart disease

  • Cancer

  • Alzheimer’s disease and dementia

  • Osteoporosis

  • Diabetes

  • Disability issues

Apps & Sites To Help You Support Seniors

So how can you help your senior loved one manage these challenges when you live far away? With all of the advancement in technology these days, there are tons of apps, sites, and individual pieces of technology that can help you offer assistance no matter where you live.

For example, video chat can help alleviate loneliness and strengthen bonds between a senior and their family or loved ones. Video games can provide the mental stimulation needed to help fight dementia and can be a source of socialization. There are even health trackers that share information in real time. The beauty of this technology is that all of this can be done when you don’t live nearby.

Also, technology like this isn’t reserved just for you. There’s plenty of helpful technology your senior loved one can put to use. Some must-have technology for seniors include:

  • Tablets, smartphones, and iPads for photos, music, video chat, reading, and games.

  • Hearing aids to help with the loss of hearing that often comes with age.

  • Wireless home monitoring systems in case of medical emergencies.

  • Assistive technology such as LED lighting or stove shut-off systems.

  • Smart home technology that gives seniors the freedom to live independently.

Home Services

There are plenty of other ways to help besides providing tangible technology options. Did you know there are a variety of services available online that you can set up from your phone or computer?

For example, if your senior has difficulty getting to the grocery store, Caring.com lists meal delivery services that can provide regular groceries or complete meals delivered directly to their home.

If your senior loved one needs some extra help around the house, there are plenty of online options for housekeeping, pet sitting and lawn, and handyman services.

These are only a few of the options available, but they go to show that it’s easy to connect your senior loved one with the right kind of assistance through the touch of a button.

It’s challenging to take care of a senior from afar, but technology truly is making things so much easier. Once you’re familiar with the typical problems seniors face, you can help by providing your senior with technology that can boost their independence, or by using online services to give them some peace of mind and assistance. By incorporating the benefits of technology into your long-distance caregiving, you can stay connected and involved. In some ways, it might feel like you were never gone.

How To Have An End-Of-Life-Care Talk With Your Parent

End Of Life Care
End Of Life Care

It’s not something we ever want to think about, much less discuss. But we all get older, and sooner or later, there will be decisions that need to be made when it comes to how we, and our loved ones, want to be cared for toward the end of our life.  Talking about dying is not fun, but it is necessary to do it ahead of time to ensure that everyone’s wishes and needs are met – especially in the event that a loved one can no longer make those wishes heard on his or her own.

When talking with a parent, approach them directly, and let them know that you’d like to talk about how they’d like to be cared for as they get older.  This involves asking them questions about how involved they’d like to be in their medical care (do they want their doctors to do what they think is best or do they want to have a say in every decision), how much they want their family involved, what to do in the event of life-support or a terminal illness, etc. Talking about and documenting these wishes early will help prevent confusion later on and can ensure that your parent’s end-of-life wishes are carried out the way they would like.

Need some help getting things going? The Conversation Project is dedicated to helping people have discussions on end of life and has a great starter kit available on their website. Download yours here.

Compassionate Care: How To Take Care Of An Aging Loved One

Caring for an aging loved one.

Caring for a senior--whether it’s a loved one or a client--can be an overwhelming task at times. It’s a stressful job, to say the least, and it can take a toll on your mood, your mental and emotional health, and your physical well-being. If you’re caring for a loved one, there’s added pressure due to your ties, and if you’re caring for a client, it’s important to make sure they’re well taken care of and that their family is satisfied with your work.

"There's a continuum of ways people become caregivers. Often a loved one suffers a stroke, accident or fall or a chronic condition worsens, and people are thrust into a situation. But few plan for it as well as they could," says director of operations for the Family Caregiver Alliance: National Center on Caregiving Leah Eskenazi.

Here are some simple things you can do to make sure you give the most compassionate care possible to the senior in your life.

Consider your options

When a family member needs assistance, it can be difficult to think about all the options available to both of you. Is it financially viable to keep them in their own home? Will they require 24-hour care? Moving a loved one into your home is a huge step and could have repercussions on your relationships with your family members and your own financial status. Lay out all the possibilities and give it some thought before committing to a decision

Lay down some guidelines

Whether you’re caring for a family member or a client, it’s important to have boundaries. Both of you will benefit from setting some rules, such as what you can and can’t do physically, what your schedule will be like, and what you expect from both the senior and their family members. This can help keep your relationship respectful and will ensure you don’t experience burnout.

Ask for help

If you’re caring for a loved one and most or all of the responsibility is falling on your shoulders, it’s time to ask for help. Keep in mind that you are just one person and it’s impossible to do it all alone without experiencing exhaustion and stress; don’t allow guilt to stand in the way of asking for assistance. Let your family members know that you need someone else to step up and help, and make an effort to support one another as much as possible.

Do some research

There are several groups around the country that will assist seniors who are ill or unable to leave their home; church groups, senior centers, and caregiver programs are all great resources to access when you need a break. Some of these will provide rides to doctor appointments, help with grocery shopping or bringing meals in, or even do light housework. When you need to take a breather, let one of these groups come and help you out.

If you’re going to be caring for a loved one in your own home, you’ll need to prepare the environment first. This can be very involved, so do some research or seek the guidance of professionals.

If you’re caring for a parent or other loved one, it may become necessary for you to become power of attorney at some point. Discuss the possibilities with your family and find out what your loved one wants when it comes to hospital stays; seek the counsel of a lawyer to draft a living will. This will be invaluable should the unexpected occur.