Artwork for podcast Your Aged Care Compass
Bringing Dad home from hospital
Episode 28 • 29th October 2024 • Your Aged Care Compass • Coral Wilkinson & Michelle Brown
00:00:00 00:26:02

Share Episode

Shownotes

Dad had four strokes in 2017, his last year with us. He developed delirium after each stroke. Dad did not recover so well after the fourth stroke and his needs were high. We discuss what that looked like for us from a caring role, and what aged care programs we were able to access to support us to bring Dad home from hospital.

Our priority was Dad's quality of life. We were in the very fortunate position of having strong family support and some extra money that allowed us to meet Dad's care needs at home.

In this episode:

  • Dad’s high care needs after his fourth stroke
  • Dad had to regain enough function to be able to come home
  • Advocating for Dad when he was unable to speak
  • Staying with Dad at the hospital
  • How we prepared for Dad’s discharge
  • Why we didn’t want Dad to go to an aged care facility
  • Transition Care Program (TCP) and how we used it to get Dad home
  • High care needs don’t always mean moving someone to a residential aged care facility
  • Caring for a loved one with high needs at home can be difficult but if a family wants to do this, they should be supported to do so
  • Prioritising Dad’s quality of life
  • We paid for a private carer and did as much as we could ourselves to help meet Dad’s needs as his package funding wasn’t enough

Resources mentioned:

Related episodes:


Connect with Coral Wilkinson: 

Follow See Me Aged Care Navigators:

  

More about Your Aged Care Compass podcast: 

Do you support an older loved one at home and you're ready to give up because it’s just too hard? Your Aged Care Compass is for you.

We're Coral and Michelle, the sisters behind our business, See Me Aged Care Navigators.

Coral is a registered nurse with over 30 years’ experience in both health and aged care. A former assessor with the aged care assessment team, an advocate and author, there’s not much Coral doesn’t know about Australia’s aged care system.

Michelle is a former pharmacist with over 30 years in the public health and private sectors of pharmacy. Michelle is the client care manager for our business. 

Our story started as one of supporting our parents to remain in their own home, to be as independent as possible and remain connected to their community. When we eventually needed extra support, we achieved this because we know Australia’s aged care system so well. We knew what programs could assist us and our parents.

Your Aged Care Compass podcast brings together not only our personal experience in supporting our parents but also our vast professional experience in supporting other families to keep their loved ones at home. 

We'll help you makes sense of Australia’s aged care system and bring you topics related to ageing as well. Legal, financial, health, forward planning and more.

 Your Aged Care Compass will guide you clearly and compassionately to the right support at the right time for your ageing parents and loved ones. 

Like what you hear? Please leave us a rating and review. We’d love you to share this podcast with any friends or family who have older loved ones.

Transcripts

Michelle:

Hello everyone, and welcome to today's episode,

2

:

Bringing Dad Home from Hospital.

3

:

I'm Michelle, and I'm really

pleased you've joined us today.

4

:

For the past couple of weeks, we've

been talking about how our dad was

5

:

diagnosed with Alzheimer's disease,

and what happened afterwards.

6

:

During Dad's last year with us, which

was:

7

:

well, being hospitalized each time.

8

:

Coral spoke about this in last week's

episode, describing the delirium

9

:

Dad developed after each stroke.

10

:

Dad recovered quite well after the

first three strokes in:

11

:

fourth stroke didn't see him recover

as well, and this stroke left him

12

:

with significant functional deficits.

13

:

Today, we're going to be talking

about how we brought Dad home from

14

:

hospital after that fourth stroke.

15

:

His needs were high, and he

required a lot of support.

16

:

Coincidentally, you've just been

over here in Perth Coral, speaking

17

:

at the Carers WA Conference.

18

:

Your presentation

discussing Dad's story too.

19

:

Acknowledging all the carers who have

tuned in today and are listening to this

20

:

episode, we just want to say thank you

and let you know how amazing you are.

21

:

It can be so isolating and exhausting

being a carer, but when asked,

22

:

carers always say that they wouldn't

change anything, that it is a

23

:

privilege to care for a loved one.

24

:

And as we promised our friends, Michelle

and Catherine of Home Instead, who we

25

:

caught up with at the conference, we'd

give them a shout out on our next episode.

26

:

So, hello Michelle and Catherine.

27

:

Coral, during last week's episode, you

spoke about the hospital admissions

28

:

Dad had for his knee surgery and

then after the strokes and how

29

:

he developed delirium each time.

30

:

The functional deficits that resulted

from the strokes meant that Dad not only

31

:

had to recover from the delirium, but

he had to regain enough function to be

32

:

able to be discharged home from hospital.

33

:

After the fourth stroke, it might have

appeared that Dad's options were limited,

34

:

given he had lost significant functional

ability and needed two people to help

35

:

with his activities of daily living.

36

:

Talk us through that hospital

admission for the fourth stroke, Carl.

37

:

Coral: So Dad had already had three

previous strokes during:

38

:

they all presented pretty much the same.

39

:

He had a sudden loss of speech.

40

:

Uh, he developed a facial droop, and he

suddenly became weak on his left side and

41

:

wasn't able to support his own weight.

42

:

When Dad exhibited these signs again

in August:

43

:

away, and then she called us and

we all headed into the hospital.

44

:

In the emergency department,

dad was seen straight away.

45

:

As we know, treating a stroke within the

first few hours from onset of symptoms

46

:

will give the person the best chance of

recovery should the stroke be from a clot.

47

:

At the time of presentation, no one

knew, of course, if the stroke had

48

:

been caused from a clot or a bleed.

49

:

So while all the investigations were

happening, and all the conversations

50

:

happening around us, Dad was trying

to communicate, but he couldn't.

51

:

He couldn't talk.

52

:

So we had to try and work out what

he was trying to say and relay

53

:

that to the doctors and nurses.

54

:

He also couldn't stand by himself, so

he couldn't be taken to the toilet and

55

:

he couldn't have anything to drink as

his swallow reflex was impaired too.

56

:

I remember just looking at his face

and feeling his desperation and

57

:

confusion and realising how completely

disempowering the situation was for him.

58

:

Michelle: What happened next, Coral?

59

:

Coral: He was transferred to the

stroke unit shell and he was placed

60

:

in a four bedded room near the

nurse's station for acute strokes.

61

:

It was a busy room with three

other acute stroke patients and

62

:

nurses were continually coming in

and out monitoring these patients.

63

:

As I mentioned last week, Dad

developed delirium after each stroke.

64

:

I had alerted the nurses that I

wanted to stay, but in the acute

65

:

room there wasn't any room for me

with all the monitors and equipment.

66

:

So we negotiated.

67

:

The nurses moved Dad into a single

Which was still close to their station

68

:

and brought me a recliner chair.

69

:

I stayed with dad and attempted

to keep him calm and settled.

70

:

And of course, being a nurse could

identify any deterioration and

71

:

notify the nurses should this happen.

72

:

Michelle: Coral, were the

nurses appreciative of this?

73

:

Coral: Yeah, they really were.

74

:

They really were.

75

:

Shellen, look, understand

that, I'm in a bit of a unique

76

:

position because I'm a nurse.

77

:

you know, that I had that knowledge

of stroke and deterioration

78

:

and, could easily alert them if

something wasn't quite right.

79

:

And, there was some apprehension and

they did have to speak to the doctor

80

:

about, was it okay taking dad from

the acute stroke bay or the room and

81

:

putting him in a single room because,

you know, they wanted to monitor him.

82

:

So there was some conversation, but

I think because I had that clinical

83

:

knowledge the doctor and then the

nurses were comfortable with doing

84

:

that, but with dad being so restless

and agitated and having that delirium,

85

:

they accepted that I was actually

helping them out by staying with dad.

86

:

Michelle: I guess that's why I asked

you, because I feel that in terms of

87

:

their already overburdened workload, this

would have made a big difference to them.

88

:

Coral: Yeah.

89

:

Michelle: The family roster

with Mum and Sandy began.

90

:

And you tried to insure someone

with, with dad as much as possible.

91

:

Coral: Yeah.

92

:

The nurses were just so busy.

93

:

Like they're always busy.

94

:

And I knew if no one was, you know,

with dad, he'd climb over the side rails

95

:

of the bed and crash onto the floor.

96

:

He was that restless.

97

:

Michelle: Yep.

98

:

So what did the following

days look like then?

99

:

Coral: Well, they were very busy days

with his doctors reviewing him and the

100

:

physiotherapist, occupational therapist,

and the speech pathologist assessing him.

101

:

He was paralyzed on his left side, so he

needed a lot of help with all his personal

102

:

care, his transfers, and his mobility.

103

:

He was wheelchair dependent at this time.

104

:

Uh, he was also on a texture modified diet

due to his swallow reflex, being impaired.

105

:

So he needed help to eat as well.

106

:

Like I just said, he was very agitated

initially, but that did begin to resolve

107

:

during the time he was in hospital.

108

:

So that as he began to settle,

we were able to pop him in a

109

:

wheelchair and take him outside.

110

:

He still couldn't communicate so

it was really difficult for him

111

:

to express his needs and for us to

understand what he was trying to convey.

112

:

He wasn't making much progress

with regaining his function and

113

:

I knew there was a conversation

looming about Dad's discharge plan.

114

:

I knew what the conversation was likely

to be as I'd seen it so many times with

115

:

other families in this position over the

many years that I worked in the hospital.

116

:

I knew that the treating team were

thinking that dad's care was too

117

:

high and too high to be taken home

by us and I anticipated that they

118

:

were going to suggest transfer

to residential accommodation or a

119

:

nursing home directly from hospital.

120

:

Michelle: And that was the one

thing that dad never ever wanted.

121

:

Coral: No, he didn't.

122

:

want that shell.

123

:

And look, we didn't want that as well.

124

:

You know, by this time, dad's dementia

was so advanced that, I honestly believe

125

:

it would have been catastrophic if he had

moved from hospital to residential care.

126

:

He just, he was so severely

cognitively impaired.

127

:

And, you know, after these strokes,

the impact on his ability to do

128

:

anything for himself, he just couldn't.

129

:

and I knew that, you know, it

just wasn't an option for us.

130

:

Michelle: Definitely not.

131

:

Coral: yeah.

132

:

Michelle: So, so what did you do?

133

:

Coral: So I initiated this

conversation with my colleagues.

134

:

I explained to dad's doctors

and the physiotherapist in the

135

:

occupational therapist that we

could manage dad's care at home.

136

:

And I asked them to

support us specifically.

137

:

I asked for the treating team to refer

dad to the transition care program.

138

:

Michelle: So explain to our listeners what

the Transition Care Program is, Coral.

139

:

Coral: So Transition Care Program,

or TCP, is one of the Commonwealth

140

:

funded aged care programs shall,

under the broader aged care program,

141

:

and it comes under the flexible

care aspect of that broader program.

142

:

Being one of the aged care programs

that's funded by the Commonwealth,

143

:

this program, TCP, is available, to

anyone discharging from a public or

144

:

a private hospital across Australia.

145

:

TCP is a 12 week program of clinical

support to assist people moving from

146

:

the hospital back home after a health

event that has caused them to lose

147

:

their function and independence.

148

:

It's kind of like a rehab

program in your own home.

149

:

based on what your needs are, if you're

approved to go home on transition care

150

:

program, you'll have a team of clinicians

Might be a physiotherapist, might be

151

:

a, dietitian or a speech pathologist,

could be an occupational therapist,

152

:

could be a nurse, social work, any number

of those clinicians, that are working

153

:

within TCP will come and visit you at

home to help you regain your function.

154

:

Michelle: Right.

155

:

How did dad's treating team

respond to your request?

156

:

Coral: Well, they were sceptical I knew

that, that they would be sceptical.

157

:

they were apprehensive that we

could manage dad's care at home,

158

:

even with him being on TCP.

159

:

But they agreed to make the

referral and the TCP team came

160

:

to assess dad in hospital.

161

:

Michelle: So dad was approved

to go home on TCP, but he also

162

:

had a level 4 home care package.

163

:

Did that cause a problem, the fact that

he already had a home care package?

164

:

Coral: No, it didn't.

165

:

So, having a home care package is

not an exclusion criteria for TCP.

166

:

Dad was able to keep his home care

package, but it was paused while

167

:

he was on the 12 week TCP program.

168

:

Michelle: But Coral, we hear that some

people are denied TCP because they

169

:

are on a high level home care package.

170

:

Can you explain this please?

171

:

Coral: Yes, look, unfortunately,

this is something we hear.

172

:

Like I said, having a home care package,

even a high level package such as a

173

:

Level 4, Doesn't exclude people from

this program, but some TCP teams feel

174

:

that if the person has a high level

package, that they should be using their

175

:

home care package funding to support

their needs, even after an event as

176

:

significant as a stroke, but dad's home

care package funding was already maximized

177

:

as his needs were already so high.

178

:

So there wasn't any funding

to draw upon from his package.

179

:

I explained this to the TCP team,

and look, I was assertive in my

180

:

conversation about Dad not going

into residential accommodation.

181

:

Uh, that we were going to take him

home, and it was my expectation that

182

:

we should be supported to do this.

183

:

Michelle: Absolutely.

184

:

And look, I remember this time well,

you know, as this is when you called on

185

:

me to come over and help with the move

for dad, from hospital back to home and

186

:

listeners, just so you know, yes, I felt

incredibly guilty a lot of the time that

187

:

I wasn't there helping more, but it was

unwritten and it really was a case of

188

:

if things got too much, I got a phone

call and I was on the next plane over.

189

:

Yeah.

190

:

Coral: I think what you've just said,

Shel, raises something, um, It's an

191

:

important consideration for the families

to, reflect on and consider because,

192

:

you know, we were in a privileged

position, before coming to work for

193

:

me, you were a pharmacist, so you had

a lot of clinical insight as well, me

194

:

being a nurse and working in that space.

195

:

and then our youngest sister, Sandra.

196

:

Who lives here as well was able to assist.

197

:

And then, you know, our brother, Alan,

who lives in Sydney, you know, was

198

:

there to call upon if needed as well.

199

:

But, it takes a village.

200

:

This, it was a big undertaking.

201

:

So when I talk about this story, it's not,

with the suggestion or the expectation

202

:

that it was an easy thing to do or it's

achievable for other families as well.

203

:

it was a big undertaking, but at

the same time, if a family, Wants

204

:

to do this or their older loved one.

205

:

They should be supported to do it.

206

:

And no, at that time I had been

the ACAT assessor in the hospital.

207

:

So what that meant was my role as the

ACAT assessor was to step in when there

208

:

were situations like this, when the

treating team said, you can't take mum

209

:

or dad home, or you can't take your wife

home because her needs are too high.

210

:

She has to move into residential care

and this was so distressing for so

211

:

many families and as the ACAT assessor,

assessing people in the hospital, a

212

:

person can't move into residential

care without having that approval.

213

:

from the ACAT.

214

:

So, sometimes I would go in

and, and it wasn't a given.

215

:

When the medical team called me to

do these assessments, I wouldn't

216

:

go in and just go, yep, sure.

217

:

You're going into the nursing home.

218

:

Let me do my assessment and tick the box.

219

:

I did speak to the family, and

I wanted to make sure that,

220

:

That's what they really wanted.

221

:

Because, you know, as, people who are

familiar with my story know, this was

222

:

one of the reasons why I left my job in

the public health system and launched,

223

:

CME Aged Care Navigators is because my

wonderful colleagues in the hospital

224

:

Didn't know how the aged care system work.

225

:

And so they weren't really, they

weren't aware what was achievable

226

:

with a person going home.

227

:

So, sometimes the default was,

they needed too much care.

228

:

They have to go into a nursing home,

but families were putting up their hands

229

:

and saying, We want to give it a go.

230

:

we want to take mum or dad

home and just see how it goes.

231

:

and I firmly believed then and

I do now that people should be

232

:

given the opportunity to do that.

233

:

So when I was called into those

situations previously, we'd have that

234

:

conversation and I would actually go

back to the treating team and say,

235

:

I'm not going to do this assessment.

236

:

I'm not going to approve a person to

go into residential care because They

237

:

want to take their loved one home.

238

:

And this is how we're going to do it.

239

:

So giving them the solutions, giving

them the education, talking them

240

:

through and showing them what was

achievable, rather than just saying, Yep.

241

:

No, sorry.

242

:

mum's not going to come home.

243

:

We're going to put her in accommodation.

244

:

Michelle: yeah.

245

:

And that's in that situation, it's

not the family's decision and the

246

:

family should be given that decision.

247

:

And Coral, you know, I remember

when we brought dad home and he was

248

:

still in a wheelchair at that stage.

249

:

And just after he arrived home, he

wanted to get out of the wheelchair

250

:

and sit in his recliner chair.

251

:

So we both helped him to

stand and to transfer.

252

:

Do you remember what we said?

253

:

Coral: I sure do shell.

254

:

I remember we just looked at each

other and you said, what have we done?

255

:

Michelle: He just couldn't bear weight.

256

:

He was a dead weight.

257

:

Coral: I know.

258

:

And I remember second guessing

myself, at that point, but

259

:

you know, me, I'm determined.

260

:

So there was no way we

weren't going to make it work.

261

:

And I could see.

262

:

You know, I knew that dad was determined

as well, and I could see the, possibility.

263

:

And he had, the previous three strokes,

he had bounced back from really well.

264

:

So, me being the optimist, I

knew that we could make it work.

265

:

Michelle: Yeah.

266

:

The thing I remember from that time as

well, regardless of the fact that he was

267

:

well down his dementia journey, every

time I arrived in Cairns, I could see

268

:

that spark of recognition in his eyes.

269

:

And to me, that was worth everything.

270

:

You know, he knew who I was.

271

:

He knew where he was.

272

:

Yeah.

273

:

And I think the whole idea of

him being feeling safe in the

274

:

surroundings that he knew to be

familiar was the most important thing.

275

:

Coral: Oh, honestly, Shel,

you're absolutely right.

276

:

It made such a difference.

277

:

It really, it was really quite remarkable.

278

:

You know, he did, with disgust,

he developed a delirium after this

279

:

stroke as well, but that resolved,

after we got him home and he was

280

:

so much more settled at home.

281

:

Michelle: So we had the physiotherapist.

282

:

and the allied health assistant

prescribing exercises for dad.

283

:

the occupational therapist had recommended

some equipment, which we purchased, and

284

:

the speech pathologist checked on him and

reviewed his gag reflex to establish if

285

:

he could start on a normal diet again.

286

:

He didn't like the

thickened fluids, did he?

287

:

Coral: No, he didn't.

288

:

And sometimes I'd let him have

a few sips of unthickened water.

289

:

Michelle: Yep.

290

:

Coral: I sat him upright, I made

sure he wasn't distracted, and

291

:

I gave him small sips at a time.

292

:

I told the speech pathologist, who

I knew and worked with, and she,

293

:

you know, she gave me this look and

she said she'd prefer not to know.

294

:

But it was about quality of life.

295

:

I knew his dementia was catching up with

him, and after this stroke, I knew we

296

:

were moving towards his end of life.

297

:

So, those small moments of

having a sip of normal water

298

:

felt like the right thing to do.

299

:

Michelle: And remarkably, he

didn't ever inhale the water.

300

:

He did not get aspiration

pneumonia, did he?

301

:

Coral: No, he didn't chill.

302

:

Michelle: Nah.

303

:

So, Dad concluded his 12 week TCP program

and his home care package recommenced.

304

:

Then what happened?

305

:

Coral: Well, Dad, as you

know, had always been active.

306

:

he was an accomplished

sportsman all his life.

307

:

So, keeping him active wasn't

that difficult, even though his

308

:

dementia was advanced by this stage.

309

:

His carers supervised and assisted

him with ongoing exercise each day and

310

:

gradually he became strong enough to walk

again and he walked independently as well.

311

:

I mean, you know, using a mobility aid

just was not an option because his,

312

:

you know, his dementia had advanced

to, he was so cognitively impaired.

313

:

He.

314

:

Wouldn't remember to use a mobility aid

and, you know, he just refused to use it.

315

:

So, remarkably, he did manage to

learn to walk independently again.

316

:

Keeping him awake, as I mentioned

last week, was important

317

:

so that he slept at night.

318

:

And of course, we took him on those daily

car drives to manage the sundowning.

319

:

Michelle: Yeah, and you mentioned

earlier that dad had a level

320

:

four home care package Coral.

321

:

Did this provide enough funding

to meet dad's high needs?

322

:

Coral: No, it didn't even come

close, Shel, to providing, the

323

:

amount of support that Dad needed.

324

:

By this time, we had changed the

services that Dad was receiving

325

:

to be all carer support.

326

:

But we had to supplement that care

that Dad was receiving from his

327

:

package by paying a private carer too.

328

:

I remember for a period of time we were

paying a private carer 600 a week, which

329

:

was beyond our ability to pay ongoing.

330

:

And I did manage to get that down

to 400 a week, by stepping in

331

:

ourselves to provide that care.

332

:

But that level of care that we need,

The level four funding, you know,

333

:

as I said, it didn't come close.

334

:

So to be able to keep dad at home,

we had to be resourceful and look

335

:

at what else we were able to do.

336

:

Michelle: Yeah.

337

:

And we were lucky, you know,

we had a little kitty of money

338

:

set aside for a rainy day.

339

:

So we were able to do this.

340

:

But not everyone is in a position to do

this , and then their options are limited.

341

:

Coral: Yeah, you're right, Shel.

342

:

I know that if we didn't have that

rainy day kitty, nor the family support

343

:

that we had, that dad would have had

to have moved into residential care.

344

:

Michelle: Yeah.

345

:

So I returned home by this time

and you and Sandy kept supporting

346

:

mum and help mum to care for dad.

347

:

But eventually he became so weak

and mostly bed bound, which was

348

:

during his last days that I hopped

on a plane and came back again.

349

:

And, and Coral, I'll never forget that.

350

:

those photos you sent from Christmas 2017

and I looked at those photos and I knew

351

:

in my heart that Dad didn't have long.

352

:

You

353

:

Coral: Yeah.

354

:

Michelle: know, it's another big

part of Dad's story, his end of life.

355

:

I think we'll hold that over for

next week, that part of the story.

356

:

Supporting Dad to die at home

was something you've been

357

:

asked about a lot, Coral.

358

:

So we'll conclude today's episode here.

359

:

and meet you back on the podcast

next Tuesday to talk about how

360

:

we supported Dad to die at home.

361

:

Thanks for tuning in today listeners.

362

:

Coral is often asked about taking

older loved ones home from hospital.

363

:

In fact, it's one of the

reasons many people book a Let's

364

:

Talk consultation with Coral.

365

:

When people are told their loved one can't

go home from hospital, that their care is

366

:

too high and they need to be moved into

residential care, it may not be the case.

367

:

It is possible to take an older

person home when their care is

368

:

high, as we've discussed today.

369

:

It's not an easy undertaking,

as we know only too well.

370

:

But if you're resourceful and determined

and can access aged care programs

371

:

to support you, then you should be

supported by the hospital to do so.

372

:

we look forward to you

joining us again next week.

373

:

Until then, take care.

Links

Chapters

Video

More from YouTube