Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Episode 2
21 Plays1 year ago
Sheryle talks openly and honestly about the challenges she faced, talking with her 92-year-old mum about her increasing frailty.
Recommended
Transcript
Caring for Aging Parents
00:00:00
Speaker
Today, I'm talking with Cheryl about her experience caring for her mum. Thanks Cheryl, thanks for making the time to have a chat. Oh, it's my pleasure Melissa. I think this is such an important topic that um that we're going to talk about today. Yeah, we do too. Cheryl, let's start by talking a little bit about your mum. Tell us a little bit about her and perhaps you some of the things that were most important to her through that last stage of of her life.
00:00:32
Speaker
So mum was 92 when she went into hospital for the last five weeks of her life. She'd been living independently, clearly with some help from from the family, but she was a very independent and strong woman throughout her life. My father died quite young when he was 49, so she had spent most of her time without a husband, um with my sister and I and our family to assist her. um The last couple of years of her life, I think, were quite difficult. COVID
00:01:08
Speaker
really interrupted her level of independence.
Impact of COVID on Elderly Independence
00:01:11
Speaker
She had have been living in Sydney. She'd been part of a senior's group. She'd gone on bus trips with them. So she she felt that she was still an independent liver then. um COVID came along. And of course, we were all concerned about her. And so she went to live with my sister and my sister lived on acreage and she had little or no contact with other people. um I think it's, we all thought we were doing the right thing by having her live with my sister, that that would ease the, I guess her ability to be looked after and cared for, but of course she took it as a limit on her independence.
00:01:58
Speaker
And so that was 2020 in 20 at the end of 2020, we move mom down to Canberra, which is where I was. And also where my sisters, um children were living. So it was we thought again, this was great. She's surrounded by family and we'd all be able to help her. However, she didn't like the move again, she felt she was being restricted and that other people were determining her destiny or her future and she'd lost that responsibility.
Hospitalization and Communication Challenges
00:02:32
Speaker
In the ah ah beginning of October 2021, she'd had some some illnesses in terms of fluid retention and that was affecting her lungs and her
00:02:45
Speaker
heart and she was unable really to get rid of the fluid and she wasn't very good at taking the medication as directed by the doctor. and She went into hospital on the October long weekend and the heart specialist was quite open with my sister and I and told us that it was unlikely that she would leave the hospital unless it was to go to hospice or into aged care, but she certainly wouldn't be able to go home and live independently again. And the difficulty was, of course, having that discussion with mum because she was, no, no, i'll I'll get better. I've always got better. People have thought I had heart attacks in the past and that wasn't the case. So how do we know the doctor's accurate in um in what he's saying? So those last five weeks,
00:03:36
Speaker
initially were about making sure she was comfortable, making sure that you know the family was there. COVID, of course, restricted the ability of my children to see their grandmother. um Two of them were overseas, living overseas. And ah my son was, my other son was in Dubbo and under lockdown restrictions for New South Wales. so So that that was a bit sad for them, of course, and for her, because she didn't really want to talk to them on Zoom or, you know, eve FaceTime. She didn't even really want to talk to them on the phone. She wanted them to be there and trying to explain to her that that was not possible, um did complicate the discussions.
00:04:22
Speaker
So she had plenty of company and plenty of things that we played cards with her and things like that. But she would always say, don't let them put COVID on my death certificate. And we're like, no, Mum, you do not have COVID. You are not going to die of COVID. you know We were quite upfront with her. we We know that at some stage you will die of heart um failure. not a heart attack, but of a heart failure, because your body simply can't keep going on. And initially, I think she really thought that she could get better and go home. And of course, it became quite obvious three, three and a half, four weeks into her stay in hospital that that was simply not the case.
Expressions of Love and Realization of Frailty
00:05:10
Speaker
And ah I think at the time that she realized that she wasn't going home, she
00:05:16
Speaker
This kind of turned her back, rolled over and didn't speak to anybody after that. yeah
00:05:24
Speaker
oh and the the it It was because that last week where she was literally starving herself to death um was a difficult time for for for all of us. I think for me, um I was particularly glad that I'd taken time, not only during earlier periods in our lives, but certainly during those last few weeks to reassure her of how much I loved her and how much she'd helped and all the great experiences we had together over our lifetimes. But also, there were a couple of things that she expected people might
00:06:10
Speaker
particularly my sister and I to do after she died. And one of those was scattering her ashes. And the place that she wanted her ashes scattered was it wasn't legal to do it there. And and I was quite clear and upfront with her that I would not do something illegal as much as I loved her and as much as I wanted to fulfill her wishes that I was not going to do that. And I'm glad I had that conversation with her so that she knew and Nothing was left unsaid. Gosh. Thank you for sharing all of that. you know What your but you're describing there is actually a really common story of frailty, isn't it? As ah as a person gets older and gets increasingly frail,
00:06:59
Speaker
and And I wonder, you know you mentioned that long weekend in October and and I just ah wondered, how ready did you feel to have those conversations with your mum and with other people in your family? And and how how well did you understand frailty at that point, Cheryl? is really like ah It's a life limiting situation at that point, isn't it? i think we um I think my sister and I had had evidence in the 12 months leading up to that time that but mum was increasingly fail ah frail. um She had had a fall and been hospitalised for a fall. She wouldn't wear her alarm. And so unfortunately, she had a fall outside and was outside for a while. So it it was increasingly obvious she could walk
00:07:45
Speaker
well, she couldn't get herself in or out of a car. So I think we accepted her frailty ah much earlier than she accepted her frailty and the eventual impact that that would that would have. Yeah, goodness. And when you, um I think you've talked a little bit about this, You mentioned that it was really important to your mum to have her family and her grandkids around and in in those last few months of her life, were there other things that became increasingly important to her?
00:08:21
Speaker
um
00:08:24
Speaker
More that mum had always wanted to be the centre of attention and she had achieved that to be honest. I mean, we all gathered around her. yeah We all helped her move. We all went up to see her when she was living in Sydney, but when she came to Canberra, all of us would be there sometime during the weekends. We kind of scheduled different times to see her. So she was always a centre of attention. And initially when she went into hospital, I think she kind of relished the fact that, you know, we were all like almost at her beck and call, whatever she wanted, ah we we'd bring to hospital, we were all there. i I was there early in the mornings, my sister was there during the afternoon. So we were, it was almost as if she achieved the thing that she'd wanted to, was that everybody was there doing the sort of things that she wanted to do, if she wanted by cards or she wanted to chat or whatever she wanted to do, we were doing it for her. and um And I think that that was good because we all got to spend quality time with her. i mean Unfortunately, my children didn't have that opportunity, but my nieces and nephews did.
00:09:37
Speaker
And um clearly my myself and my husband and my my sister did. So we had quality time with her doing the things that she enjoyed doing in the hospital was and very open to us ah taking in a bottle of champagne, for example, which was mom's favorite drink and letting her have a glass while she had dinner at night. or So it was it was good in those first four weeks until she finally realised that she wasn't going home. My sister and I had started to look for um hospice or aged care facility for her because she had certainly lasted longer than the doctors might have initially thought
00:10:23
Speaker
And so there were there was talk about not her going home, but her going somewhere else. And she did not want to go to an aged care home. There's a ah ah lot on your plate and on your sister's plate and other members of the family, no doubt. and how How was it for you, Cheryl, through that time? What were the things that you found hardest? To be honest, it wasn't that hard. i mean i We got into a routine. So I would get up. I'm an early riser. So I get up. i We have a very nice coffee shop near us. I go down, I get coffee. I put them in the car. I'd go over to the hospital. You know, she'd have a coffee.
00:11:04
Speaker
I'd make sure she had some breakfast. So in many ways, we got into we got into a routine. I think all of us, myself, my sister, my nieces and nephews, all of us got into a routine. And in some ways, COVID was a blessing because most of us were working at home so we could manage our time. um quite effectively, andt you know, to fulfil our work requirements, but also to manage our time to to see Martin to give her quality time.
00:11:35
Speaker
Australia opened their borders ah a week. So I was on the 1st of November. Mum died on the 9th of November. Australia opened their borders on the 1st of November. And my daughter who was living who was living in Hong Kong and working in Hong Kong had a project in Australia and her work sent her to Australia like the day we opened our
Family Visits and Discussions on Aging
00:12:00
Speaker
borders. And so she was able to see her grandmother. Her grandmother wasn't in a very good state by that time, like a week before her death, but at least she, my daughter and my mother were very close. okay Yeah, very close. That was an important visit, no doubt. Yes, yes. And I think we were very, certainly, um my husband and I were very pleased, even though it wasn't the best of circumstances, that Si-Ann did have the opportunity to say goodbye to her grandmother.
00:12:35
Speaker
And you've mentioned that the last couple of weeks of your mum's life um were really difficult. um ah Are you comfortable to talk a little bit more about that? Of course.
00:12:50
Speaker
and So it really was the last week when when she had made the decision that she was going to die. And I think if there was something quite difficult about that time, so it's that until it became very obvious to her that she wasn't going to go home and that if she did live, she was going to go into an aged care home, that all of a sudden it was as if we, and i
00:13:21
Speaker
Unfortunately, I think in some way she might have um blamed my sister and I for taking away her independence and making decisions that, you know, in under normal circumstances, she would have preferred to make herself. And of course, she just wasn't able to do that. And I think that was very difficult for her. And therefore, my sister and I felt some ramifications of that in in terms of her I guess, negativity or her disappointment in the in the fact that that had happened and that we had taken away her independence and her ability to make decisions for herself. And did that did that come out as your mum being angry with you, sad with you, reluctant to talk with you? What what did that look like in terms of your mum, I guess, reconciling that?
00:14:22
Speaker
and So I think early on, I mean, in the last, let's talk about the last four weeks. In the last four weeks, it was more about, you know, i why she didn't want to be there, the events which had led up to her being in hospitals such as COVID and going to live with my sister. And then when she realized that she wasn't going home and that that was never going to be a possibility, I mean, she literally turned her back on us and pulled the blanket over her head and
00:14:53
Speaker
there was no further conversation. So we were able to talk to her um or or talk to each other in her presence, but there was no interaction. Difficult. Gosh, that's a lot that you shared. Thank you, Cheryl. um if If you were to Think about others who might be going through this right now or might have this ahead of them in in the coming months or years, you know, caring for a parent with increasing frailty where there might be different levels of understanding around what frailty is. um Do you have any thoughts or advice for those people?
00:15:40
Speaker
I think the one the one of the positive things that came out of my mother passing away was that we we have had, my husband and I, but me in particular have had much more engaged discussions with my children about exactly that, about frailty. um They asked me, I turned 70 in January and they asked me on my birthday, so what's it like getting old? How do you feel about getting old? what What are the negative and the positive impacts of that? They asked other questions about you know ah about being a mother and the the things that we'd done together. But it it has it has given us the opportunity to have those discussions. So what what do you want to happen to you as we you know as you get older?
00:16:34
Speaker
and While my you know clearly my mother wanted to die at home, and I know that that's true for many people, e I have seen that that's unlikely to be the outcome. And so I've had those discussions with my um son and daughter about what that might look like for me, particularly given they live overseas and are unlikely to come back to Australia. So, I mean, there are there are levels of conversations that we have to have about what if they can't get home or what if it's a sudden death or all of those things. And they really do understand that, you know, at 70, let alone at 90, there are things which are different for me. um And I think we are going through that process in a more engaged,
00:17:31
Speaker
grown up way, if that makes sense. Conversations are more open about what we'll do and what will happen and what we, what I would like in those, you know, when we get to that stage. But I also think I'm, like many of my peers, prepared to have I guess, Plan B, i.e. can't live at home going to aged care or going to assisted living or whatever that might look like. So I think I have a different mindset than my mother did about what the, you know, however many years those years might be, but what that might look like prior, um you know, prior to dying and how I will cope with my frailty.
00:18:22
Speaker
Yeah, we you know we hear so often that they they can be quite difficult conversations to open and to know how to contain. And sometimes people can feel a bit fearful of those conversations, but they can really make so much more possible. aren't they were able to talk about the things that are really important to us as we age in the different phases of our of our lives and I'm going through similar conversations with my father at the moment so I'm kind of holding a lot of what you've said and thinking about the difference it's making to me to understand his wishes so that if I have to make decisions on his behalf
00:19:02
Speaker
you know, I have a much clearer sense of the things that are important to him. So I i imagine that's also the case for your children, that they've they've got a reassurance and, um you know, a knowledge about about what really matters to you.
Caregiving Responsibilities in Australia
00:19:17
Speaker
ah Absolutely. and but And I also think that yeah there's a a recognition on their behalf and mine. And and it is one of the conversations I did try to have with mum and I think i I certainly I was content that I'd had that conversation that there is a time in people's lives when they're simply not capable of making the decisions themselves regardless of their mental acuity. It's
00:19:46
Speaker
it actually falls to other people sometimes to make those decisions. Thank you Cheryl. I think there's so much to take out of that um conversation and but's it's an experience that is just ah part of the current ah day-to-day for so many people said and women in particular in Australia today. We know that two-thirds of caregivers are women and they're They're commonly caring for a parent or a partner, but there's also just so much to take from your reflections for people that might be stepping into that role in the next couple of years. So thanks for being so open and honest about that and carving out a bit of time in your day. Oh, that was my pleasure. Thank you for the opportunity. I hope it's helpful too to you and to others. Absolutely. Thanks Cheryl.