blog » August 6, 2018 by Renee Herren

Factors That Shape Your Caregiving Journey With Debbie Howard by Renee Herren

Blog Caregivers
9 days ago
Factors That Shape Your Caregiving Journey With Debbie Howard

Only about 5 percent of families have taken the necessary steps to develop a fully thought-out care plan for their loved ones. Being prepared before the need arises is vital – for the caregiver and the loved one. Debbie Howard, founder of Aging Matters International (AMI), served as the live-in caregiver for her mother, who was diagnosed and died from Stage 4 lung cancer in 2007. While she was caring for her mom, she also ran her Tokyo-based business from her mom’s dining room table in South Carolina. Her new book, “The Caregiving Journey: Choosing Your Best Way Forward,” will be released in October. 

There are several factors that shape your caregiving journey and it's important to recognize them so you can make the best possible care plan. Debbie shared tips on how to navigate the sometimes confusing and overwhelming act of caregiving.

Q: Why is it so important to start thinking about our roles as caregivers sooner rather than later?

One of the scariest statistics I’ve found is that half of all people who are 65 today will need help with their daily living needs as they age – either at home or in some type of assisted living or nursing facility.

The numbers also show (in part because we are living longer these days), an increase in chronic health conditions among those aged 65 plus – conditions that ultimately affect the ability to live independently. Chronic health conditions include high blood pressure and arthritis (affecting HALF of all males and females 65 plus), heart disease (affecting one-third and the leading cause of death) and cancers (affecting one-fifth and the second leading cause of death).

Then we have the memory-related conditions (including dementia and Alzheimer’s), which will affect one in five people aged 70 plus in the near future. The course of disease can be quite lengthy – anywhere from five to 20 years, depending on the rate of progression.

Q: What are some of the main factors that impact and shape our role as a family caregiver, as we work to support our parents and other loved ones with their daily living needs?

Having a plan in place gives you options, more flexibility when the going gets tough, and a chance to make the situation the best it can be. As part of planning, assessing the situation with your eyes wide open is critical. Looking at your loved ones’ current health – both physical and cognitive – is the first step. It’s also important to consider family health history.

Another factor is your loved ones’ financial standing. If they are able to “age-proof” their current home – or downsize to a one-level residence or move to graduated care assisted living facility – this provides more flexibility for you in the planning stages.

Also, family relationships and physical living circumstances – i.e., is your loved one living alone or as part of a couple – and number of children (or not). And the dwelling type – owned (or not), age-friendly (or not), available services nearby (or not), etc.

Q: Are there any other factors I should keep in mind?

Emotional stability and balance is important, too. A person who is well grounded in their outlook on life, has healthy relationships with family and friends, and has interests and hobbies is typically easier to help. Another factor is how open-minded and practical your loved one is about having heartfelt discussions about the entire concept of their aging and dying. These are not easy topics for most people, yet if we can find a way to talk openly about it, it’s very helpful.

Back to the importance of planning. All of these factors – physical and cognitive health, financial standing, family relationships and living circumstances, emotional stability and open-mindedness – need to be factored into creating a plan that works for you!

Two macro factors are proximity and duration of caregiving. Your challenges will be different if you live nearby versus several states away, and if you are caregiving long-term (i.e. memory deterioration) versus short-term (i.e. terminal illness like cancer).

Q: What is the order of priority? Which factors should I think about first?

All are important, but within the context of developing a good plan, I would start with “physical health,” since it has such a big impact on mobility and ability to live independently. This brings up the need for having these potentially sensitive discussions before aging-related problems start to occur – or at least as early as possible. Sometimes, a small healthcare problem can help you jumpstart these discussions.

It’s also important to think about your own situation in all of these areas: again, physical, cognitive, financial health – as well as family relationships and living circumstances, emotional balance and open-mindedness.

Overall, having a good, well-thought-out plan and having a positive mindset going into your caregiving journey will help you make the most of it. It’s also important to “go in strong” in terms of your own life. You cannot pour from an empty cup!

Q: What are the most important things to keep in mind when we are approaching our parents to talk about their future needs?

This isn’t about YOU; it’s about listening to and understanding how your parent feels about their living circumstances going forward. It’s about how THEY see themselves moving toward their later years and end of life, and how you can help them meet their goals. This is a practical consideration of the available options so that everyone – both your parents and YOU – can achieve a good outcome. Having a good plan will give you and your parents more flexibility and choice in the long run.

Q: What are some key planning tips from your upcoming book “The Caregiving Journey: Information, Inspiration and Guidance for Navigating the Landscape of Non-professional Caregiving?”

Planning is one of the best choices you can make to help make your caregiving days brighter and more enjoyable. Even though most people don’t start until “something happens” to force them into action, that doesn’t have to be true for YOU. Making a plan is a process; it usually takes several conversations to get your planning where it needs to be. Starting sooner is better! A key component to your caregiving plan is your own plan for self-care. You can’t help others if your energy and reserves are depleted!

Q: How about emergency planning? What are some easy ways to be ready “just in case” something happens? What if something happens to YOU!

  • Make a digital list of passwords, login details and bank account numbers; notify at least one other person you trust of its whereabouts.
  • Make copies of all keys (house, vehicles, storage units, safety deposit boxes, etc.). Label them and keep them in one place.
  • Create a centralized notebook of important information regarding care of your loved one. Include medical, legal and financial contact information; medications and dosages; dietary concerns; daily household operations.

Q: What if my caregiving responsibilities have already started? What are some things to keep in mind?

At first, you may be asked for only a little support, for example, going to doctors’ visits together or running errands. As your parent ages and needs more help with daily living, you may need to consider adding paid professional help to back you up. For the long-term, you’ll want to be flexible enough to “change the plan” when and if emergencies arise. Make sure to care for YOU, too; staying strong and healthy is important as you move forward with greater caregiving responsibilities. 

Mindy Hudon, M.S., CCC-SLP
I was my mom’s care giver. It’s a tough emotional journey. Thanks.
Mawazna Pakistan
Thank you for sharing such great information.
It is informative, can you help me in finding out more detail on community.mawazna.com/t/how-ca...
Nicole DeAvilla
Excited to have Debbie Howard back! I think I will be on the road driving from Mt.Shasta, but will tune in if I can. xo
Toni B
Sounds like a great topic! See you soon Debbie Howard
Debbie Howard
Excited to "see" you all!
Holly Budde
I’m so disappointed I had to miss this. Have been slowly entering caregiver status for over a year now. great advice Debbie Howard it hits close to the heart ❤️
Debbie Howard
Hi, Holly - sorry you missed it! Hope you could access the transcript from our chat, which was lively! I wish you all the best in your journey! Let me know if I can help.
Debbie Howard
Hi, Holly - yes HUGS are good! Here is a virtual one! Plus, I noticed you're TX-based; I'm in Wimberley! Also, I should let you know that we are coordinating a one-day conference for caregivers in early 2019 in Wimberley (Sat, Jan 19). It'd be great if you can join us - there will be 9 different 1-hr workshops on everything from planning to surviving to "next steps" when caregiving is done. I'll send you more info once we get materials finalized!

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