top of page
  • Writer's pictureKimberly Massey

4 Tips to Lighten the Emotional and Physical Demands of Dementia Caregiving

Updated: Aug 11, 2023


Photo by CDC on Unsplash


There are many demands on a dementia caregiver.


Sometimes to understand a caregiver you have to be a caregiver.


One of the most dangerous responses a caregiver can have when a loved one has been diagnosed with dementia is inertia. Paralysis. An emotional exhaustion or sense of overwhelm that keeps you from moving.


Inertia is a concept in physics in which nothing moves or changes in motion unless compelled by some kind of force. I wasn’t a fan of physics. So, another definition of inertia is “a tendency to do nothing or to remain unchanged.”


Paralysis is also a good descriptor. It’s “the loss of the ability to move (and sometimes to feel anything) in part or most of the body, typically because of illness, poison, or injury.”


With the seriousness and life-altering aspects of dementia, I believe coming to a stop to absorb the shock is not only the most common action, but also the most understandable. Taking time to understand dementia, grieving for the changing future – those are among the first things a family member or caregiver should allow themselves to do.


At some point, a caregiver will start to recognize all the major and minor tasks they are now facing.





There seems to be two responses- one is the hypervigilant get-it-all-done-at-once-and-burn-out-before-it-starts reaction.


To be honest, when facing Alzheimer’s or dementia, we don’t see that often. When we do, I feel like it’s the people who have been through it before, so they have a pretty clear idea of what needs to be done. They still grieve, but they have an action plan at the ready.


42 percent of family caregivers experience depression, mood swings or resentment as a result of their labors. From the AARP: Caregiver Burnout

The other common response is to…put things off.


I say that without judgement.


There are tons of reasons we humans put things off. In fact, recognizing that “a million little things” influence all our actions is a guiding principle of mine. It comes from the idea that the bigger an issue we face, the more factors contribute to our final decision. And, IN ALL LIKELIHOOD, it's almost impossible to pinpoint what factor tipped the scales toward a specific decision.


Why did you buy that house?


Why did you quit your job?


Why did you choose that career?


A million little things. Or maybe even a few big, huge things might slow you down. You are entitled to take the time you need. You need to take the time you need.


But, at some point, standing still begins to affect you more and more negatively. It’s true that most caregivers will experience grief, depression, or apathy. Sheer emotional and physical exhaustion. But standing still becomes more of a burden than moving forward. So, you may want to do something.


Except.


Except….


Where do you start?


Legal matters.


Safety preparation.


Personal education.


Dr appointments.


Financial planning.


These are some of the big things. Little things are also going to creep in. The little things can be just as overwhelming as the big things.


So, what to do?


I’ve found comfort and consistency following these ideas:


Tip #1 - Write it (all) down

The first step in this plan is to make lists work for you. Maybe you already use lists a lot. Maybe not. If you are already a great note taker and list maker, there’s no need to change your system. But here’s a good system if you need it.


You're going to work off two lists. The first is your Holding Place list. It’s Like a computer’s extra memory system. Any time you see, hear, or recognize something that you'll need to do on this journey, write it down. Get a notebook that will be easy to keep with you. Or start a note on your phone. If you don’t know how, just ask someone. They’ll be happy to help.


*Tip: if you're using your phone, create a document and save it to your home screen. It will be just one click away when you want to take note of something.*


*Pro tip. If you've saved your document anywhere electronically, share it with your support person (see below) and work on it together.*


Over time, you’ll probably find yourself writing down things like:


Call the Area Agency on Aging.


Questions to ask the Area Agency on Aging.

  • What services do you provide?

  • What resources are available to help people with dementia?

  • Where do I find people to help care for my loved one?

  • How do I pay for care for my loved one?

Call a lawyer.


Gather financial papers.


Find a caregiver support group.


Start replacing current clothing with easy-on shirts and elastic waist pants.


Don’t edit or hold back. The benefit of making notes is that your brain does not have to keep up with remembering everything all the time. It’s the difference between putting your computer to sleep versus having 30 windows open while it’s trying to restart.


Thirty-six percent of family caregivers characterize their situation as highly stressful. From the AARP: Caregiver Burnout

Tip #2 -Just One Thing list


Next, you're going to start your just-one-thing list.


About once a week or even once a month, you’re going to flip through your Holding Place list and you’re going to make a list of 5-10 things that need, should, could be done in the next month. Hopefully, tasks of different sizes will jump out at you. A big task might be to gather your financial documents. A small one might be to look up caregiver support groups to check out sometime. You don't even have to go. Just see when and where they are.


Choose several and write out your Just One Thing list. Keep this list handy so you can refer to it when you are thinking about your daily things to get done.


But wait! Didn't I say it's a Just One Thing list??


It is. From your Holding Place, you’re going to choose a few things that will make you feel relieved when they’re done. That doesn’t mean you’ll want to do any of them. It may not make you happy to do them.

But you'll be relieved with each task that’s done.


Maybe the relief will come because something important got handled. Whatever it is. Or maybe you’ll feel relieved that you just moved forward.


From that list, the shorter Just One Thing list, choose just one thing to get done that day.



Tip #3 - Break tasks into smaller bites.


From that list, the shorter Just One Thing list, choose just one thing to get done that day. If you can't bear to do that one thing, break it down into smaller tasks. Do you need to make a doctor’s appointment? But you can’t bear the thought of talking to anyone today, much less making decisions? How can we make that task a little smaller? A little more bearable?


  • You might look up the phone number and write it down on tomorrow's to-do list.

  • Look and see if they offer appointment scheduling online.

  • Ask your support person to make the appointment for you.

Then, do any one of those things. There! That's it. You moved forward today.


-----

So, we've covered: use your lists- the Holding Place list and your Just One Thing list. You're going to isolate a few things that you want to be done soon. Then you're going to add one thing to your daily plan (just one thing).


Aannnnddddd if you can't do one thing today, you’re going to break one of your tasks down into something smaller that you can do (take tiny bites).


The proportion of caregivers describing their health as excellent or very good has dropped from 48 percent to 41 percent. From the AARP: Caregiver Burnout



Tip #4 - Ask for help (hear me out).


That brings us to the final point.


Dementia caregiving will become a 24-7 365 activity. At some point, the reality is that your loved one may go to a nursing home or memory care facility. Even if this is the case, many, many things will have to happen first. There will be hard decisions to make.


No one should attempt to do this alone. No one.

Maybe you’re caring for a spouse and you don't have children.

Maybe your parent has dementia and your family isn't on speaking terms with each other.

Maybe you have lots of people around, but they are all too busy to help.

Maybe you tend to be introverted and don’t love interacting with people.

Maybe you have anxiety or depression or ADHD and sometimes you’re hardly able to care for yourself.

Or maybe you have a chronic illness of your own that takes all your energy.


I get it. Truly I do. I can relate to these. I also know that despite all the ways we have to communicate with people around the world, many of us feel more isolated than ever.


You're going to find someone anyway.


Your long-lost cousin. A neighbor you used to be friendly with.

A stranger from a support group.

A stranger from an online support group.

Your sister-in-law that’s a surgeon who runs their own business and is a member of Congress, with six kids, including two sets of twins under the age of three.


And you’re going to ask for help.


And here's a sample script:


Hi, so and so. This is your name here. I don't know if you remember me, but we used to attend art class together. How have you been? Great! I'd like to hear about that sometime.


Let me tell you why I am calling. My mom-dad-wife-brother-sister-aunt-friend has dementia. I am the person they will be relying on as things progress. I know I am not going to be able to do it alone. I have a list of things that need to be done over time. Some things are simple and quick, but there are a lot of them. Would you be willing to help with a specific task on occasion? Like, I have a lot of calls to make. Could you help me make a call each week for the next few weeks?


I know it's a lot to ask out the blue, but it will be just one thing from time to time.


They may say no, and that's ok. But, I’d put money down that if you ask three people, at least one will be willing to help you make calls, do laundry, order supper, or grab milk from the store. And if you don't need those things now, you’re going to ask if they can help you occasionally in the future.


If you can’t bring yourself to call, then send an email or text. Seriously.


You're probably wondering why would someone help if they aren't already close to you? Well, I know of two reasons.

Either they’ve been there before and know how vital it is to not be alone.

Or

They’re relieved it's not them. Either way, you have some support . Either way, you've started to build your support team.


It's nearly impossible to be the only caregiver for someone with dementia without damaging your own mental or physical health. But it can be done with a team.



Ok. Take a breath. Here's where you start.


Open your notes app.

Save the document as “Holding Place”


Write down “make a list.”


Add these things to your list:


Stop and breathe.


Feel your emotions.


Tell your loved one that you are here for them.


Make a list of people who might be able to be there for you.


Stop editing the list and making excuses for people who don't even know you need help.


Write down the list of people you thought of.


Look up phone numbers or email addresses.


Pick one name.


Start your support team.


Breathe.


You don't have to tackle this whole list at once. No matter how far you get today, or tomorrow, move forward more days than you fall back.

We can do this together.


No one should take on dementia alone.



From my tenacious heart to yours,

Comments


20221004_175717_edited.jpg

About Me

Caregivers, Dementia, Starfish and the Ocean

Hello! The Tenacious Heart Project is where I share with you my strong belief that we can do better for caregivers and people with dementia.  


It may be overly optimistic thinking that we can improve something as big and important and caregiver support and dementia.  I do understand that.  But in my nearly 30 years in the nonprofit sector, I have seen lives change.  I know it happens on the individual level and I know it can be done on a societal level.


I have my strengths and weaknesses.  One thing I am good at is solving problems.  I like thinking about solutions and how to put those solutions in place.  As noted already, sometimes I never give up.  That stubbornness has benefited my family and I a lot.  When my daughter needed a health advocate, we looked for solutions.  It took five years to find the right specialist, but since we did 18 months ago, her quality of life is exponentially better.   


The more my dad and family are affected by dementia, the more I am compelled to improve options for caregivers and the people they support.  The Tenacious Heart Project is just one small way I hope to help.  I feel like we are all the starfish on the beach.  One day, thousands of starfish washed up on a beach.  Taking a walk, a gentleman saw a young girl carefully picking up a starfish and returning it to the ocean.  He asked her, why are you wasting your time? You'll never help get all the starfish back into the oven.  To which she promptly replied "maybe not, but I helped that one." And she moved on, putting each starfish she encountered back into the ocean. 

bottom of page