Beyond the basic activities of caregiving (read: personal and medical care, housekeeping, etc), we family caregivers also often carry the great responsibility of fostering our loved one’s well-being through creating experiences of meaning and joy.
If you haven’t started caring yet, or you are currently caring, my advice is find out right now while they are able to express what they love, so you can make sure these things continue when their abilities change. There is no time to waste!
It is important to collect as much data and information about your loved ones’ preferences and experiences NOW while you can.
You will need to know what makes them “tick” down the road to soothe and console them and, quite frankly, make it worth getting out of bed sometimes.
In this post, we’re going to look at what questions in a conversation around what is important to your loved one might look like.
You might be aware that my grandma has Alzheimer’s. Looking back, one of my few regrets is not spending more time getting to know my grandma as a person. Since I’m her only living family, there’s not really anyone I can ask about her past. I have to rely on what little she actually remembers and build on that. Since I can’t go back in time, I try to look back what things we when as I was a child and try to recreate those moments. I search old photographs for clues.
Even if you feel pretty sure of the answers, it’s still worth talking to your family members (even writing it down) to get an even better idea.
Note: If you read these questions and think to yourself, “Wow, I don’t know anything about my folks,” don’t feel bad. Take the time to get to know them now on a new level as an adult.
Here are some key things you will need to know to be able to increase your loved one’s joy:
What is their routine?
We are all creatures of habit. Our daily rituals and activities mean a lot to us.
As people get older, they gradually become less in control of their day. If we know how the the general flow of their day goes, we are better equipped to keep that routine going for them to the greatest extent possible, so they can feel safe and more in control.
What hobbies did they have when they were younger?
If you asked my grandma right now what her hobbies are, she would only tell you about what she does everyday as of late.
Growing up, I remember my grandma always had a baller flower garden. She had tons of plants inside. She sewed clothes and all types of home goods. She loved reading. There were books and magazines and newspapers piled all over her house.
Talk to your folks if you can, look through mementos, and use your noodle to collect the data you need to fill their time with meaning later on.
What were they known for back in the day?
Even when we are getting older, we have a lot to contribute. If you can find out what their special skills, gifts, and talents are, you can exploit them to add extra meaning to your loved one’s days.
Everyone I have talked to so far says my grandma was super smart and everyone always looked to her for the answers. At her 80th birthday party, one of her childhood friends told a story of them dueling pianos from their bedroom windows. I’ve unearthed old clippings talking about awards and honors my grandma had received over her lifetime.
I use these clues to build on them to create opportunities for her to find joy and meaning in new ways.
What animates them?
Recently Grandma had to tag along to the senior center with me because she didn’t have a Sidekick that day and I had to deliver meals. We planned to have lunch there and we discovered they would be having a Guitar Jam after lunch. People started piling in for it and next thing you know, there are a bunch of folks dancing in the middle of the room. My grandma lit up. She had a smile on her face and a twinkle in her eye. You see, she used to go to the ballrooms to dance with her own folks and that’s how she met my grandpa.
Pay attention to moments like these. Once you recognize them, you can recreate them later.
What are their favorite things?
If your person can’t remember, think back to when you were growing up. What were some of their signature meals? Did they have a special recipe that was handed down from the past? Store these things in your memory bank for later, or when you’re helping them plan and prepare meals
My grandma loves soaps and game shows. She always has. I also remember watching ice skating with her when I was little. Before she got sick, on Saturdays she would always turn on Lawrence Welk when I was leaving. Find out what shows they like to watch to help them when mindlessness is needed.
We don’t spend a lot of time thinking about this, but we tend to be particular when it comes to what we wear. My grandma used to always wear polyester skirts and her sneakers. She was always very concerned about her shirts. She’ll wear a crew neck or a polo shirt… but forget about a V-neck or anything that is “too revealing.” It’s important for us to know about these preferences, so we can remember them and help our loved ones stay comfortable.
Places & People
Let’s get real here: Since you’ve gotten older, your folks have probably built a life for themselves that you might never know about if you don’t take the time. You’ll want to find out your loved ones’ favorite haunts and hideaways, the places they go “where everybody knows your name.” If you begin caring after a long term hospitalization like I did, you will want this information so you can help them restore those connections and recreate those experiences for them (to the greatest extent possible).
When I was a little girl, my grandma listened to country music. That was it. When I started caring for her, she didn’t really respond to it the same way.
Sometime last year my grandma shared with me that she loved Liberace. This is one of the few very specific things she’s ever told me. Her parents took her to a concert even, when he came to Kansas City. Ever since, we listen to Liberace pretty much any time we get a chance. Liberace is like instant joy for my grandma.
Music is a very powerful tool for caregivers. Just a basic google search on the benefits of music for the brain will tell you everything.
Knowing as much about your loved one as possible will take you far in your caregiving journey.
Quality of Life as People Decline
Advanced directives. Living wills. DNRs. These are terms you might have heard in the hospital if you’ve been there with your loved one. They’re part of a subject that can be uncomfortable, but is still important to broach.
If you’re caring for a loved one, you might not want to think about the fact that they are on a downward path. Despite this, before it’s too late, you should talk to your loved ones about what joy looks like, all the way until the very end.
We need to ask questions before people are suffering from a chronic/terminal illness or nearing the end of their life about how they would want to live out their last days.
In the event of life threatening emergencies and illnesses, some of the interventions used can be very painful and can increase and prolong suffering.
While your loved one is able to make informed decisions and express their wishes, you should get clear on what they would want in the event serious life-sustaining measures and medical interventions are needed.
Advanced Directives & Dementia
This blog post recently made big waves. The author recounts her experience with her parents, and watching her father fade away from dementia.
Most conversations around Advanced Care Planning do not dare touch dementia. But the fact remains that no one is safe from dementia, and what a person would want for themselves and those involved should be considered *just in case.*
If you do nothing else as a result of this post, please read With Dementia, More is Needed than a Boilerplate Advance Directive https://theconversationproject.org/tcp-blog/with-dementia-more-is-needed-than-a-boilerplate-advance-directive/
As much as we hate to think about it, we will all move on to greener pastures.
Here are some questions to ask your loved ones about when that time comes:
- How do they want to be remembered?
- Do they want a big funeral or a small celebration?
- Do they want to be buried or cremated? Do they want to donate their bodies to science?
- Would they like to establish an endowment or have a memorial in their name?
These conversations are difficult to have. Like many others, I suggest monopolizing on current events in your life or in the news, using them as prompts to begin a dialogue about what the good life will look like all the way through to the bitter end.
Using a tool might help make the conversation go a little easier, too.
When a person’s final wishes is all mapped out, it’s not just a relief for the person, but also their family. During times of intense grief and loss, it’s hard to make funeral arrangements. If there’s a plan in place, you can focus on what’s important- honoring and remembering and holding onto the joy.
The topic of joy came last, but it might be the most important. We can have joy- no matter where we live or how little we have- as long as we know how to create it. The hope of having joy is what keeps us moving forward everyday. Fostering this is one of the supreme privileges of caregiving.
I hope you found the Coming Out From the Rock Series helpful. These are questions I wished I’d asked and things I wished I thought about before I became my grandma’s primary caregiver. There is a lot more to long term care and caregiving than people commonly think about before they are thrust into it. Hopefully, with a little time and talking, you’ll be more prepared to care.