Caregiving by the Letters

Using every letter of the alphabet, this multi-faceted guide provides helpful caregiving perspectives for all of us, but especially for family caregivers and the herculean responsibilities they shoulder every day. This is for you.

Life Isn’t Easy

It’s hard to lead with something that isn’t an upbeat thought. I hope “Life Isn’t Easy” doesn’t lose most readers. I’m an optimistic person, so saying this isn’t easy for me. The reality is, it takes significant effort to deliver daily, loving care – effort that almost always results in success, but in your mind, it is often not good enough.

Personally, I’ve had only a slight brush with caregiving for my mother many years ago. I wasn’t “24/7” and her decline was rapid. This is far away from the daily pressures felt by many. Add to the pressure of caring for someone with dementia, and the stress intensifies exponentially.

There are many self-help evangelists and professionals who are trained to deliver guidance, and even people like me with personal perspectives. None are better than any of the other, but they certainly provide unique opportunities to learn something new. I hope my personal sentiments prove useful to you.

Feel free to share this guide with others. There is likely some nugget of value in here for each person. There are many strategies for improving the care you provide – while improving your own health.

As indicated above, life (caregiving) isn’t easy. Fortunately, walking through this guide is as easy as ABC!

ABC: Always Be Charging

Initially, ALWAYS BE CHARGING was a joke about keeping my iPhone charged. It was an older model, with a weak battery, and I even had a battery case for extra juice. I looked for every opportunity to keep the whole thing charged up so I’d always be ready for what’s next.

Sounds like a metaphor for caregiver health doesn’t it?

ABC works for caregivers as well. Be vigilant in looking for ways to rest. I know that doesn’t come easy, but that’s why you always need to be on the lookout. Stay charged up to be “ready for what’s next.”

As new parents (long ago!) my wife and I would try to sleep or at least get a nap when our newborn slept. “Sleep when the baby sleeps!” is something most new parents are told. Even the simple act of reclining, closing the eyes, and trying to clear your head for 20 minutes can make a world of difference. (Instead of trying to take the time to start that laundry, make the bed, take out the trash, or endless other duties tugging at your brain.)

This diligence extends far past just getting in a few winks. Look for ways to actually boost how you feel – really recharge those batteries – not just reclaim a bit of energy. Once you get good at cat naps, you’ll start to identify more robust ways to recharge. Accept that offer to have coffee with a friend. (Hey, if you can’t get out, have them over!) Make arrangements to get out for a few hours. Separate yourself from the every day, even if it is every once in a while.

You aren’t a bad person for trying to improve how you feel. You owe it to your loved one to be the best you can be by using all the tools at your disposal. You should ALWAYS BE CHARGING!

The hope is this article will provide some of those tools. If nothing applies to you, at least it would offer some inspiration. The goal is to NOT solve your problems, but to give you ammunition to solve your own.

For example…

DEF: Delete  |  Engage  |  Flourish

Much has been said about decluttering one’s life. The rhetoric runs the gamut from TV shows about hoarders to Minimalism as a lifestyle. It seems many of us simply have too much stuff!

This DEF discussion though is less about clearing the garage, and more about clearing the calendar! In this case, “decluttering” is a metaphor for simplifying.

In targeting simplification, we’re focusing on clearing the mind. First consider all the things that fill your day. One could argue that only a few of them are of any real value. Sure, each responsibility, activity, or task seems “important” but are they actually “valuable?”

Look at your day and the activities that fill your day, through a new set of lenses. Ask yourself, “does this appointment, task, or activity help me as a caregiver?” Notice the advice is focused on helping you as a caregiver! Of course, you still need to do those things that help your loved one, but you MUST start eliminating those things that don’t help you as a caregiver.

“No” is the most powerful word there is.

• When used at the right time.
• When used if the appointment or activity doesn’t help you as a caregiver
• When used if it doesn’t help your loved one.

It is liberating.

Say “No.” Turn things down strategically. Be efficient in your effectiveness! “DELETE” artfully.

By ridding yourself of non-value-added activities, you start to free up time for those activities that are more rewarding. At first, it may be as simple as getting 15 minutes more sleep at night. (But even that is a great start!) Reward yourself with rewarding activities; activities, that allow you to ENGAGE more deeply.

Be efficient in your effectiveness!

Ultimately, we would all love to engage more deeply with the person for whom we are providing care. However, the value from deeper engagement comes from other family and friends as well. Any time we get closer to those about whom we care, we start to contribute to other sections in this guide. In this case, deeper engagement can add to ABC above.

Look at it this way: it is healthier and more enjoyable to have fewer relationships, but have a much deeper connection in each one (narrow and deep) rather than fruitlessly trying to nurture too many so-called friendships and being frustrated when you can devote only a small amount of attention to each (wide and shallow.)

Personally, I prefer narrow and deep.

If you can DELETE, allowing you to more deeply ENGAGE, you have a great opportunity to FLOURISH. With this newfound “Flourish” you’ve really taken a step up the ladder to enhance your well-being!

GHI: Get Help / Healthy Immediately!

I struggled with which element to highlight: Help or Healthy. In the end, I decided to share both, since getting some help can support your efforts to get healthier.

HELP can feed the HEALTHY

And yes, it is completely understood that the “immediately” part is difficult – whether it’s “help” or “healthy.” The goal however, is to look for opportunities to be successful – with either word.

Asking for Help

There are many ways to do this, with as many strategies available as there are people willing to share them.

The best advice for getting started asking for help is to start small and be very specific. People generally want to help, but they simply don’t know how to offer.

For example, if a friend is going to the store, simply ask them to pick up a few things for you. You of course will pay for your own groceries or toiletries, or ??? – after all, this isn’t a charity run! However, this small action on their part (throwing a few extra items into their cart when they are at the store ANYWAY!) will save you considerable effort.

• It prevents you from preparing your loved one for an excursion out of the house.
• It prevents you from organizing someone else to stay with your loved one during your absence.
• It prevents you from [fill in any number of other things you would need to do to run to the store.]

Bottom line: it saves you a trip.

People want to help – they just don’t know how to do it.

A simple ask, for a simple task.

A simple ask, for a simple task – allows you to save a significant amount of effort. As you begin to piece together multiple simple asks, you gain more time for yourself. When you gain more time for yourself (again, it is understood this is still a small amount of time!) you start to enjoy the benefits of ABC and you get yourself charged up a bit. Each time your recharge, you get a bit healthier.

You really can start to GET HEALTHY / HELP IMMEDIATELY.

Now you see it, don’t you?

JKL: Jolly Kills Lowness

We’ve all heard the trite phrase, “turn a frown upside down.” While it is a seemingly shallow sentiment, it is, in a way, quite true. By consciously looking for opportunities to smile, to laugh, and to simply be “jolly,” we can force our attitude to follow.

Attitude follows Actions

In my corporate career long ago, the first time I had remote employees, I inherited someone who was a great performer. The problem was he frequently came oh-so-close to the “socially inappropriate” line. He meant no harm and was a kind individual, but let’s just say very rough around the edges.

Rough enough to make corporate employees uncomfortable – and at times, me included.

With Caller ID, I knew it was him when my phone rang. The only way I could effectively engage with him at a level where I could provide the managerial guidance he needed was to “get along.” The only way for me to get along was to enjoy the conversations.

When the phone rang and displayed his number, I paused for a second, took a deep breath, and put a big smile on my face. That set the tone for the call by starting me with a positive outlook and enabled me to have a brighter disposition.

Sounds odd, but it worked.

Our relationship flourished and he continued for several years, performing at a very high level until he retired.

Don’t misunderstand this example. I’d be the first to admit your problems won’t disappear just because you smile. But I would also stress that you can start to help yourself improve your own state of feeling just through active smiling. Try it a few times. You might be surprised how the slight improvements start to build on themselves.

If you haven’t used those smile muscles much lately, you may have to force it at times, but:

• Look for ways to smile
• Look for ways to laugh
• Look for ways to take control of how you feel about a situation

Don’t expect more than incremental improvements, but one-by-one, the transformation can be phenomenal. Approach each situation with a JOLLY smile, and it might just KILL LOWNESS.

MNO: Mean Never Occurs

We just looked at a strategy to take action for improving our attitude. Now, we’ll look at more of a preventative approach through MEAN NEVER OCCURS.

What?

Good question. The intention here is to remind us all that when mean or hateful words come from a loved one living with dementia, it is the disease talking – NOT your loved one! Knowing and always remembering this is half the battle.

There is a very good chance your mother or father wouldn’t have said some of the things they do today before they developed dementia. Remember they haven’t suddenly gotten “mean!” When they lash out, it is not “at you” it is “to you.” You just happen to be the primary target in the path of this horrible disease.

They don’t mean it personally, so do not take it personally. Truly in their minds, MEAN NEVER OCCURS.

PQR: Please Query Responsibly

It is often said that asking too many open-ended questions is not the best strategy to communicate with someone living with dementia. While it may seem loving and nurturing to allow them to decide what they might want, too many options can be overwhelming.

For those of you who watched Garfield cartoons with your kids (or just because, since… you know… it’s Garfield) you may remember the Christmas special. In the scene where they are sitting down to Christmas dinner:

Jon: “Hey, Mom, pass the potatoes, please.”
Mom: “Scalloped, whipped, fried, baked, or boiled?”
Jon: “Oh, Mom, you always fix too much food.”
Mom: “I know, Honey, I know. Now what would you like?”
Jon: “I can’t decide. Just give me a piece of pie.”
Mom: “Apple, peach, pumpkin, blueberry, cherry, or banana cream?”

The look on John’s face is the quintessential definition of being overwhelmed with way too many choices.

A better solution is to simply offer one and say, “is apple pie OK?” or allow a choice only between A or B, like “would you like apple or peach pie?” Avoid long lists of options.

Bonus Letter: S

STU is up next, but in this case, S gets to work overtime by being used as an additional qualifier here as well. It sums up PQR:

PLEASE QUERY RESPONSIBLY and SIMPLY

Simplify your questions by knowing the answer before you ask. Life will be simpler for your loved one – and for you!

STU: Share Thoughts Understandably

Being open and transparent is a healthy way to communicate. Issues never have a chance to fester under the surface and build into something much less healthy.

Just like SIMPLIFYING questions when talking with someone living with dementia, SHARING THOUGHTS UNDERSTANDABLY can not only help as a caregiver, but in any social situation.

Be direct in your communication, but elevate the conversation. We’ve all heard of:

“KISS – Keep It Simple, Stupid!”

There’s wisdom in simplifying communication with someone with dementia. Sure, reducing options is one strategy, but keeping things at a higher level helps, too. Summarize where it makes sense. By removing the unnecessary details, you can get to the heart of the matter quickly and with less effort (by both of you!)

Keep the need for information exchange simple. Even the summary for this section can be shared understandably:

• Be kind
• Be direct
• Be simple

SHARE your THOUGHTS UNDERSTANDABLY. If you do, you will be effective – with minimal stress!

VWXYZ: Very Well, Xtra Yawning & Zzzzzs

If you’ve been wondering what the heck I was going to do with the last part of the alphabet, well, I had the same thought. It has had me wondering since the beginning. The best way to wrap this up is by using it as a summary, touching on where we came in.

Caregivers must take care of themselves first. If that isn’t Priority 1, it makes it very difficult to be strong and effective caring for your loved ones. We started this post with ABC, suggesting the need for recharging whenever possible.

And while VWXYZ implies more sleep, it goes way beyond catching extra ZZZs: it is a way of approaching life.

Take care of yourself, so that you can take care of your loved one. When we travel, flight attendants always stress that adult passengers should don your oxygen mask first,

THEN

Place the mask on your children. If you are not able to function because of a lack of oxygen, you will not be able to assist your child.

Ring a bell?

Sleep is good for all of us. Take a nap when you’re able. Get to bed early when you’re able. Sleep in when you’re able.

When you’re able: see a trend?

The advice here is to take advantage of opportunities. They don’t have to be complete days off and stay in bed until dinner. (Like that will EVER happen!) They simply have to be an opportunity to add some letters to the crazy Scrabble game being suggested here.

• Don’t update your Facebook status or check your email when you can get a 90 minute nap
• Don’t start of new project around the house when you can get to bed 20 minutes early
• Do put your feet up – even for 10 minutes
• Do look for ways to engage your family and friends – even if it is for a small amount of support

It. Adds. Up.

Take care of yourself. It will be easier to take care of your loved one!

It is often said that caring for someone with dementia is like caring for a child.

• Simplify
• Communicate with Caring
• Support with Strategy

Do so, and you’ll provide better care at lower (personal) cost.

Be well.