You've got a tough job.
But you can handle it.
I was getting ready to see Elvis Costello play at the Tennessee Theater in Knoxville, thrilled to see this rock icon perform live. Since my husband is not a fan, I was pulling together a playlist of songs I knew he would like. Alison, Oliver's Army, Shipbuilding were all on the list. I gleefully added Veronica to the list, giving it a quick listen as I knew it would be my husbands favorite.
And then I was sobbing.
A song I love and have heard thousands of times -- even that week -- all of a sudden had a new meaning to me. No longer was Veronica a jaunty little tale about a person with memory problems, now it was my story.
I sobbed. And sobbed. And sent the link to my sister so I could make her sob, too. We sobbed together for a while, sending messages back and forth to each other, jointly feeling guilty that we don't do enough to care for our loved one who is sick. Comforting each other and talking trash via text message while I prepared to go to the concert.
This is what caregiving is like for me. I'm the primary caregiver for my aunt who has dementia. She lives in another state. I'm newly married, starting a business and recently lost my father.
Every caregiver experience is different. There is you, the person you're caregiving for and the disease.
You find yourself in the midst of a whirlwind. You know the person you are caregiving for is changing and you know the disease is going through a metamorphosis, but you also realize that caregiving fundamentally changes you and all of those changes are not welcome.
For me, this video perfectly illustrates the life of a caregiver.
I won't pretend to understand what you're going through, but I can tell you that I wouldn't have the time to put these resources together if I didn't have:
- Support from friends and family
- Reliable help
- Trusted resources
- An understanding of the disease
- Tools for collaboration
- Social media
- A way to share information
- Time for myself
On this page, you will find resources I've found helpful while caregiving.
Support from friends and family
I was ill-equipped when I became the primary caregiver for my family member. I didn't see it coming, and I had no idea what I needed to do. Luckily I had friends and family who helped me recognize and tackle the most important issues.
There are health, happiness and financial issues to tend to. You often find caregiving makes you aware of things in your life and relationships that need a little work.
If I can't wear it, spend it or eat it, I don't want it. All the things we accumulate affect our lives and the lives of those we love. You know this if you're a caregiver.
I have dozens of people who help and I know what they have time to do. Without reliable help we couldn't have accomplished all the things we've needed to do over the past few years.
Since I rely on so many people to help us run our caregiving, I also have to remember to be supportive -- and appreciative of those who generously donate their time and talent to help us.
Many people will help out of the kindness of their hearts, but it is worthwhile to find someone you can pay to help you with some of the routine tasks that need to happen.
Everyone has their own methods for finding reliable help, but as I've spoken about this topic around the US, a few helpful resources have emerged:
- Take them a meal: For the times that friends are coordinating taking meals to a friend.
- Lotsa helping hands: A community for caregivers to help connect those who can help with those who need it.
- Care calendar: A meal organizer that allows people to sign-up to take meals to a friend.
- AARP TEK: The technology education center at the AARP. You can find tips for how to use tools and they travel the US offering workshop training.
- Bridging Apps: Helps you find appropriate apps for people with disabilities.
I provide caregiving for someone with Alzheimer's so a lot of the resources that were helpful to me are Alzheimer's related.
- Alzlive.com - For those who care: Practical and inspirational advice for caregivers of people with Alzheimer's.
- Caregiving: Who is doing it right?: A list of people and resources that were helpful to me as I started my journey.
- The creation of an Alzheimer's Village: An understanding of an emerging trend in the industry and something to inspire solutions.
- AARP's Caregiving resources: Information, tools and tips for caregivers collected by AARP, the largest membership based association in the US.
- Managing Mom's Money: A Time article discussing some of the things you will need as you manage the finances of someone else.
- A collection of Alzheimer's blogs: The 2014 collection of the best Alzheimer's and dementia blogs around.
An Understanding the Disease
I needed to understand Alzheimer's to find and provide the support I needed. Finding different perspectives online helped me understand what was happening and what was going to happen.
Tools for Collaboration
You're not just a caregiver, you're running the business aspect of someone's life. You have health and financial issues you have to deal with that are just as important and time-consuming as the caregiving and happiness issues. No one in our family lived in the same city as the person we are caregiving for so we had to quickly devise a way for all of us to stay updated and in the know.
Recognizing we had a collaboration issue was one of the important first steps in the process. Approaching the problem like a business problem helped me identify our biggest problems and find appropriate solutions.
A woman with Alzheimer's lives alone. She is unaware reality is slipping away.
Communications between nurses, friends and family members are complicated, disorganized and redundant.
She isn't getting everything she needs.
Those who are helping are overwhelmed with the day-to-day responsibilities and don't have the time, don't know what needs to happen and don't know where to go for help. Friends and family members want to help, but don't know how to get involved.
There are financial, health, social engagements and assets that need to be managed.
When you are a caregiver, you are the CEO of a small business.
Organize caregiving like a small business.
Provide collaboration tools that work for all caregivers.
Establish clear roles and responsibilities.
Provide historical context for all involved.
Understand how what is happening fits into a larger world picture.
Investigate opportunities for additional revenue streams.
My collaboration tools
The collaboration tools I created were critical to our initial success.
The Caregiver Worksheet was something used to help us keep track of issues.
The Caregiver Organizational document helped us store and keep track of relevant information.
We created the documents as shared Google documents so we could all access and edit them as needed. You're welcome to download the Google Templates for your own use.
Here's a video summarizing my approach.
A summary of the conversation, on Twitter, that happened at Helping Aunt Ginny: Alzheimer's Technology and Me.
Social media has been *extremely* helpful for me while caregiving. If you are a regular contributor to social media you probably already understand some of the ways you can use it. If you don't use social media on a regular basis, there are some really important things you need to understand before you jump in.
Social media networks are not all created equally. The way, and amount of information, shared over social networks varies depending on the community. You may find that you can use social media as a resource, even if you are not actively posting information. If you want to contribute, you must first find your voice.
- Research: you have to figure something out, so you turn to the internet to see what experts and other people in a similar situation have to say.
- Inspiration: a caregivers job is hard. A little inspiration can go a long way.
- How to: Guides for solving specific problems
- What’s next: Looking to see what might be next on the horizon.
- To connect with others: I’ve made some great friends online through the process. A note of encouragement here and there is certainly helpful).
- To vent: Venting is a normal and necessary part of the process. Venting is also the most dangerous way to approach social media. If you absolutely must vent on the internet, I would encourage you to do it in a private setting, with people you trust and I would be careful not to disclose any private information about the person for whom you are caregiving. For example, I wrote an article about bullying in assisted living – but used an example of bullying that happened to me in high school instead of a real scenario.
- To document: I’ve seen beautiful stories celebrating life documented online.
Facebook is the best social media network for connecting with people you already know or finding resources from organizations. Facebook is a (very large) private network.
If you're a visual thinker, Pinterest could be a great place for you to collect links related to caregiving. Do a search for your topic to find like-minded folks.
Twitter is the best social media network for meeting new people with similar interests.
Medium is a group blogging platform closely linked to Twitter. I started contributing to Medium when I first became a caregiver. The tie-in with Twitter made it easy for me to find people with similar interests.
Consult Using Social Media to Help with Caregiving for notes on a presentation related to this topic.
A Way to Share Information
Writing about the experience has been an important release for me and, I hear, helps others.
- The Longest Day: This is a collection of perspectives released on June 21, the longest day of the year and a day dedicated to Alzheimer's Awareness.
- When Mom gets bullied: We hear a lot about bullying in schools; sadly bullying happens to the elderly as well.
- It's not just about losing your memory: I knew nothing when I started as a caregiver. I'd heard lots of advice from friends and trusted resources, but it took a while for me to gain an understanding of what those things meant.
Time for myself
This is one of the most important, and most often overlooked elements of successful caregiving. It's important to devote time to yourself. Without the help from a team of folks, I wouldn't have had the opportunity to pursue my own dreams while caregiving.
- The Importance of a Work Sabbatical: I quit my job when I started caregiving. I learned a lot about myself in the process and am now starting a company that supports my life and responsibilities. I wouldn't have been able to come to that realization without a work sabbatical.
- Elvis Costello: Music has always been an important outlet to me. As a caregiver one of my favorite Elvis Costello songs, Veronica, now has a new, deeper meaning to me.
Thanks for reading. I put this list together to help people who are have found themselves in my shoes. This page is constantly evolving and changing and I love finding new things to add. Contact me if you would like more information or for me to link to one of your resources.
Whatever you do, find something that works for you so you don't feel like this.
Thanks for reading. All of the articles on VirginiaIngram.com are by Virginia Ingram, a freelance writer, account planner and digital strategist who is consulting in the marketing, social media and caregiving world. She writes regularly here and on Medium.com. If you would like to read something similar, choose from the tags and categories below. If you need help communicating to the people most important to you, you should hire Virginia.