From Partner to Carer: Navigating Difficult Role Transition

Making the transition from partner to carer can be sudden and provide a big challenge to your relationship. Kia Handley and The Sugar Doctor talk about how to navigate shifting dynamics in your relationship when one partner requires an additional level of care due to illness, accident, or disability.

[Full Transcript Below]

You can listen to the show live on Monday mornings from 9:30 am on ABC Newcastle at 1233AM or stream live here.

[Original recording on ABC website here]

Kia Handley is: Not a car! Presenter ABC Newcastle. Loves vintage, Eurovision & great stories.

You can also find the incredibly talented Kia Handley on ABC  Newcastle Mornings here, Twitter @kiahandley  Facebook kiahandleyjourno and on her podcasts: This Retro Life & Let’s Talk-  Rural Mental Health, PLUS even more amazing gems here.

partner to carer wheelchair
Photo by Audi Nissen on Unsplash

Episode Transcript:

When news came through of  Kobe Bryant’s death in a helicopter crash recently, I saw lots of people in the following days lamenting just how short life is, how you never know what’s around the corner. And I guess in that cliché way its totally true. To not die wondering, and to live each day to its limit is a great thing to live by. But its not just death that can rattle your life plans. Illness, injury, it can completely change the path that you, that your entire family is on, and when we’re talking about love, that can mean going from partner to carer in the blink of an eye.

So how do you navigate this? Tara Whitewood is a Relationship Coach with The Sugar Doctor, regular guest here for you on ABC Newcastle Mornings, Good morning!

Tara: Good morning Kia

Some of those stories that we were just hearing, you know, they’re really heart wrenching. This is a really hard thing for anyone to go through.

I think so, it's heart moving, heart wrenching , and also really moving, the time that you spend with a partner regardless of your circumstance is precious. And sometimes it takes one of these life events to really bring that into focus.

Is it normal to transition from partner to carer?

Kia: Is it sort of a natural progression that if something happens to your partner that you do take on that role?

Not always… but lets first talk about too, the way that we kind of operate in our world as though hard things are unlucky, or that they’re unexpected. It reeks a little bit to me of privilege, and of magical thinking. You know, if we pretend it won’t happen or if we… just do all the right things, you know if we eat well and we exercise and whatever, we'll…

Kia; lead long happy lives...

Tara: You know I just really feel like we live in a complicated world. We live in these fragile bodies, and the expectation that everything is going to be easy or fine, really only sets us up for disappointment. Statistically, the chances are very high that you will encounter some kind of chronic illness or pain, or disability. Whether it’s you know,  a mental illness ,whether it’s physical illness. In your life…. So looking at, at the moment, the statistics say that;

  • 45% of Australians will experience mental health conditions during their lifetime
  • 1 in 5 Australians have some form of disability, and then that percentage increases with age, as we’re aging in our bodies,
  • And the other one that was really interesting for me actually was 35/9 % of Australia’s 8.9 million households include someone with a disability, so now you’re looking rather than at individuals you’re looking at, you know, at households…

So a third of our households include someone with a disability! The likelihood that we’re going to encounter the dynamic of changing roles from partner to carer, is really high!

Is it a Couple Dynamic? Or a Family Dynamic?

Kia: And as John was saying there, it does effect the whole family. We might think of it as the Significant Other becoming the primary carer, but even if you are caring for your mum as an adult, or your parent, or a sibling, or transitioning from partner to carer, the whole family does change, that dynamic does change

Tara: Sure! Sure! And that’s both what people see as the challenge, but it’s also the solution, the solution is inherent in that. When we look at the problem or the challenge of disability or illness as belonging to the person who has that disability or illness, then it’s a really short sighted way to approach life.

When we look at it as being ; hey this is something, you know, it’s ONE other factor in this household that we need to look at as a team. Whether it’s as a partnership or a family or as a broader community, that we’re going to work with. Like WE’RE going to include this dynamic in our lives, and WE’RE going to make it easier and smoother for all of us, and it’s just a part of our new relationship dynamic.

What Beautiful Moments Come From the Transition of Partner to Carer?

Kia:– Blanche D’Alpuget , the wife of late former Prime Minister Bob Hawke, said it was a really intimate time. It was a time they said was quite special that they had to share. What are some of the beautiful moments that can come from being in this situation?

Tara;  I think it’s a real shortcut to cutting through the crap that often comes in a relationship, because you just can’t. You don’t have time for the fluff!

Kia; There’s no time for that!

Tara: You don’t have time. You need to get to “how are we going to get through this.” Whether it’s looking at domestic logistics, whether it’s looking at your social lives, and your lifestyles in the transition from partner to carer. I think some of the really beautiful things that happen…. And they don’t always happen, I mean let’s be clear, sometimes people just …

Kia: And not everyone will…

Tara: just suffer… and struggle, and they’re not even really surviving.

Kia: Not one size fits all in this situation.

Tara: Exactly right, and it depends on your support networks and your circumstances and all of those things.

What Shifts in Your Relationship Paradigm?

One of the beautiful things that can happen is a relationship will shift from the paradigm that we live in right now. That is, that your value is in how beautiful you are, or how much are you doing, how much are you producing, how successful are you, how much money are you making, all that kind of rubbish. And it really shifts to “what are the beautiful qualities that we share” and “what are the beautiful moments that we can celebrate between us” without having to have all the other noise around it. So it is the quiet moments when you are together and you’re having a laugh, through pain

Kia: Well you probably end up spending more time together

Tara: Yeah I think so, and I think time is…you need to be more present in that time as well. You need to be attuned I guess from partner to carer and the person who is ill, or has a disability. The dynamic, the power dynamic, shifts so it’s important to be attuned to that. And it’s important to have times when you’re just friends or you’re just a couple without having the focus always on illness.

How Do You Define the Changes in Relationship Roles?

Kia: Yeah, let’s talk about that. Because it does go from an intimate relationship and maybe things change everywhere from physically, in a bedroom setting, to then the emotional needs as well. To who is providing what. So how do we navigate that change from partner to carer when it does happen usually quite quickly

Tara: They’re really heavily intertwined. I know Cath Mahoney talks about that a lot in her series that you mentioned before, that you really can’t separate the role of carer from friend, or the roles from partner to carer, because as humans we’re complex so there aren’t you know…

Kia: “Now I’m going to wear this hat”

Tara: It’s not “now I’m going to be your mother, and then in ten minutes I’m going to be your friend”. You know? They’re all intertwined. So the way to do that I think is to focus on… ask me that question again?

Kia: laughs, so how do we navigate that change?

What to DO When You Become a Carer

1. Educate Yourself.

Tara: The first thing to do in the transition from partner to carer is to educate yourself. Don’t rely on your partner to tell you all of the things that you need to know – go and read books, join a support group, make sure that you are learning in tandem with your partner.

Because for someone who is experiencing a big change in their life, or even who has lived with it for a lifetime, it’s particularly exhausting to have to explain that over and over again to everyone in your life. Educate yourself.

2. Build Community

Make sure that you build community now (and always)

Make sure that you have other people around you that you can rely on.

One of the really interesting things that I love is that studies show that other people like and trust you more, when you ask for help. So rather than feeling like a burden asking your community to help; “Hey could you go do groceries, or clean the bath, or pick me up and take me for coffee”. People will see you as being more trustworthy, and it will deepen a relationship. Being really open to asking for support from everyone in your life.

Seven minutes away from ten o’clock, we’re talking shifting from partner to carer with your significant other, to someone in your family, Tara Whitewood is having this conversation with you this morning, she’s a Relationship Coach with The Sugar Doctor.

What Are Your Personal Experiences with Becoming a Carer?

I’m asking you to share your experiences as well.

Margaret:

Margaret says “last year my brother had a massive stroke, at 68 years old, he was unconsicious for four weeks then woke. The doctors said he will never walk again so now he’s in a nursing home. They do everything for him as he can’t do it himself.

And I've been looking after my mum for the last two years, and also taking mum to visit her son. Mum passed away September last year, very sad, so now I'm visiting my brother in the nursing home. He’s very well looked after. Being a family member, it does take its’ toll. And you need time to rest, then do it all again.

Steven:

Steven says “my mother is my father’s carer. Following his diagnosis with Alzheimers. The problem is they divorced about ten years ago, but he doesn’t remember.“

Kia: There are so many different levels to this discussion, and I think it is really important to say that one experience is not going to be the same as yours. There are so many different levels of illness, of injury, of family dynamics, that really do change things.

Tara; That’s right, and a lot of callers this morning and a lot of people are texting in and talking about terminal illness, and ageing, and the kind of caring that goes around that.  But we’re also, like you said, looking at invisible illnesses and chronic pain, things like migraines, back pain, endometriosis, nerve pain, MS, chronic fatigue, fibromyalgia.

There’s a whole variety of illness and disability that is more of a lifetime relationship with the person and your family and it can be anywhere on the scale from not happening, to being really chronic on a day. That’s a very different dynamic to navigate as well. On that scale of challenge.

Dating Someone with a Disability

Outside of this if were not the one who is caring, but perhaps we’re a family member or a friend. I know that one of my friends lives with a disability. He met this amazing woman and the first thing her family said was “you are just going to have to look after him”. Which is not true. He is very capable and can do everything on his own, but that was their perception. That going into a relationship with someone with a disability meant you were signing up to a life as a Carer.

How do we, outside that, when our friends are going through this or our family members, need to be that supportive person, how to be that community that you talked about?

3. Build Community

Tara: It’s about really moving away from those identities as the martyr and the carer, and the burden, because it’s just not the case. So in terms of how you offer support, you change your mindset. You must stop thinking like that, because there are these beautiful intrinsic qualities as humans that we share, that are completely unrelated to our capacity to clean a bathroom, or get out and work.

I think that it is really about each individual, each of us educating ourselves.  I love that question because it just reminded me…

Regardless of whether you are in relationship with the dynamic of partner to carer, or you know someone with a disability (and let me tell you, you do, even if you don’t know that).

We ALL need to educate ourselves. Follow people who are advocates for disability. Look for what they are saying on social media. Support people; be advocates in your personal life so that YOU are educating people around you. Then when that happens at some point in their life, you know they’re already ready. We would already be a community who support people with different needs and different abilities.

David

Kia; David has called in this morning from Mayfield, Hi David.

David: Hello

Kia: You care for your wife at the moment?

David: No, unfortunately she passed away. Two years ago.

Kia: Oh, David, I’m sorry

David: She had a disease called scleratoma.  Since her diagnosis in 1995, she battled on through life continuing her career as a teacher until that faded out about 6 years ago and her health through the disease deteriorated significantly.  About four years ago I became a full time Carer for her doing virtually everything for her

Kia: how did you find that transition from partner to carer changed your relationship with your wife, David, what was your experience with that?

David: A hard one to answer I think, Kia, I as virtually by her side all the time. Caring for her, preparing her medications which included an intravenous, for one of the drugs, and she’d been in and out of hospital for quite some time. The last time which was about late June, 2017 she was in hospital, and typical of Lyn she was a terminal optimist!

Kia: I love that

David: Oh she was phenomenal. And she fought this bloody head-on like a bull at a gate. She was determined. She had the opportunity to go to Rankin Park for rehabilitation and she had two goals: to be able to walk unassisted with her frame for about 20 minutes, and she’d go to the loo, or from the lounge room to the bedroom, and the other one was to be able to sit on a stool and peel vegetables to help me prepare meals.

Kia: Oh, so she still wanted to help you. David thanks so much for sharing that story of Lynn, of your experience as well.

It is news time, so we have to wrap up. Tara, thank you so much for coming in,  I feel like we can talk about this, maybe some more.

Tara: My pleasure.