Major health changes can knock even the most healthcare savvy person for six. Illness, dementia and a changing health or intellectual capacity can take a toll on even the toughest family. How do we nurture a relationship with a loved one when the goal posts change? And how can we continue to care as ageing, disability, illness or end-of-life change the person we once knew?
There are no easy answers when it comes to these sorts of situations. But there are a few things you can try to keep the connection alive
Here’s how to navigate the new normal when a loved one’s health profile changes through major health changes
Face the new stage
Major health changes are almost inevitable. It’s more a case of when the change may occur. One of the most important lessons to learn is that we all change over time. Whether we face accidents that change us, acquire disabilities in our lifetime, or greet the changes that come with disease, illness and age, we all change.
But what doesn’t change is the person we have known and loved. While the impact of the new stage may alter their physical profile, the person we always loved is still there. And while mental health, cognitive or intellectual changes can be jarring and difficult to accept, the person we know is still present. Even if the lucidity windows are small.
Take the stage as a new one. Just as we move from toddler to child to adult, we move through disability and age with the same transitions and impacts. Remembering this can help adjust our reactions to a person to be more responsive.
Let yourself off the hook
Never feel bad for needing to take time to digest major health changes. The news can and does influence our lives and relationships on a significant level. Recognise that you can grieve and care for someone at the same time. And this is neither self-indulgent nor a poor reflection on your relationship with the person in front of you. We all face forms of loss when a person’s ability to communicate with us or to be who we once knew changes.
It is OK to grieve for what is lost. To feel an absence where that person used to be in a conversation or what they might say as advice is perfectly normal. If you are sad for moments you won’t enjoy in real time again, this is perfectly fine.
By allowing yourself to feel the pain and loss, you have greater opportunity to find a new way to connect.
And cut yourself some slack
Now is not the time for regrets about time you haven’t spent. Or to focus on the vacuum created by a changing health profile. If at times you feel overwhelmed by your loved one’s illness or disability, it’s OK to step away.
And don’t fall into the trap of comparing how you cope with someone’s situation with what they are dealing with. Or look at others who are more stoic or seemingly better able to cope as better at the situation than you. There is no right or wrong answer when dealing with loss of this kind. Don’t punish yourself for failing to live up to your own or someone else’s measurements.
Major health changes have a way of creating a lot of uncertainty. And that uncertainty can cause us to doubt ourselves in ways we may not have envisaged.
Instead, lean in on self-compassion. Transform the criticism within you into practical steps, self-love and tenderness. Once you do that, you’ll be better able to give yourself and your loved one the support they need.
Don’t make it all about the disease or disability
Once a person faces major health changes, their life becomes one endless measure of tests, medical conversations and focussing on the changes they are experiencing. Many cancer patients, people with disabilities or people who have faced major changes to their health profile become experts in these changes.
But every expert needs a day off, too.
While we may be keen for details and want to stay informed, sometimes talking about anything but the illness, disability or disease is exactly what the doctor ordered. There is comfort in reliability and the mundane turning of life. And it can make your loved one feel connected and supported.
Don’t be afraid to come armed with talk of the kids’ achievements, renovations, how good the footy was on the weekend, or how great the hot new restaurant is in town.
It can give them a much-needed break from the anxiety and all-consuming nature of major medical health changes.
Be present with your loved one
One of the best gifts you can give someone who’s health profile is changing is to be with them as though they are valuable, loved and supported.
If you and grandpa used to read the paper on the phone, read it to him. If you’d crack jokes about the silly world around you, don’t be afraid to bust out that one liner. And if you would play music, sing songs, talk about beers or share the surf report, do that too.
Being able to be there together to share what you know of each other can really help keep you together. Major health changes shouldn’t change how you wish you could relate with each other.
Also, even if they are unconscious and may not respond, talk to them as though they are still able to hear you. They may be able to hear you and benefit from the soothing sounds of your voice. Plus, it gives you the opportunity connect on ground you know well.
Reach out and touch someone
Sitting next to a person and holding their hand is one of the most underrated comforts of life. Massaging their hands or feet, giving them a soothing cool towel the head or tending to basic needs can help you feel connected with each other.
And never be afraid to sit close, give that kiss hello or goodbye, or to give the cheerful wave as you walk in and out the door.
We’re social creatures by nature and any kindness through touch can brighten a day in many different ways.
Make life normal
The main tip is to accept major health changes without making it obvious it is a change. Look for the opportunity to establish a new routine. Find ways to continue your lives around the illness, disease or disability. Don’t let it overgrow the relationship you once had. Instead, add a few more vines with new experiences.
Normalise the conversation surround ill-health, disability and dying. It’s important these conversations don’t stay in the shadows because the information you need to help a person is hidden away, too.
ExSitu can help you get to that information without it being an intrusive or difficult process. Through card sorting and a series of questions, you can be easily on your way to articulating what the new normal looks like to the person you love.
Yes, it can be tough at times to accept that a person is changing or dying in front of you. But there is comfort in the small details and the routines we establish. And these minute moments of control can feel like helpful islands in a sea of change.
One of the best ways to ensure you or your loved one has their needs met appropriately if there are changes is to have an advance care plan. An advance care plan can cover the medical, social and granular changes within a person. It gives a solid roadmap to navigating life post illness, disability or disease.
Want to know more about how you can support your loved ones when change comes calling? Check out Exsitu today.