Caring for Mum and supporting Dad – our caring journey across three states and eight years so far

Real life stories of how people care for their ageing parents can be inspirational, enlightening, or at the very least, help us feel that we’re not alone. In this article, Andrew Peter Heil shares his family’s journey in caring for Mum.

What’s with the wine? The first signs

I’m not a big drinker but a good friend is an excellent winemaker and holds an annual dinner for his new release wines. It’s a riot of an evening. It’s so enjoyable I invite my parents who love both red and white, and get along famously with my friends. They fly to Sydney where I live, from their home in Melbourne for the weekend. Towards the end of the night my mother, who is sitting opposite, pushes her chair back in an attempt to stand up. She falls backwards but is saved from hitting the floor by my friend opposite. I don’t think too much of it at the time putting it down to more than a few vinos. My friend is more shocked or concerned than I am.

Fast forward 12 months and she has a near identical fall at the same dinner, which I again put down to the large amount of frivolity.

Later in 2018 my uncle organises a post-AFL grand final dinner for the wider family which we all attend. He pulls me aside and questions whether my mother is okay and asking why she is holding the wine glass the way she is. I look over and recognise what he is talking about. She looks like someone from the ancient world presenting a giant chalice to the gods by gripping the stem of the glass with both hands. I agree it looks awkward but put it down to the severe osteoarthritis my mother has had for two decades. Whilst I don’t directly address whether she is okay, I am thinking she is what one might call “dottery” having reached 70. My sister asks me a couple of times about Mum’s health around the same time (we both live Sydney and see Mum perhaps every second month). I maintain the dottery hypothesis and tell her not to worry.

The secret is out

Now it is Spring 2019, and my parents visit and stay with me in Sydney for a long weekend. I arrive home from work and Mum is sitting at the dinner table dressed immaculately, but something is clearly wrong. She looks stunned. Dad remarks she tripped on sandstone stairs on a walk at the beach. She was distracted by someone walking down the stairs towards her, and let go of the rail falling backwards. I ask if she hit her head. She had and the fall was significant. Her shoulder is bruised and her foot sore. Dad has given her a whiskey and himself one – no doubt they are both in shock. Off we drive to emergency at Prince of Wales Hospital in Randwick on this Wednesday night. It’s busy, so we wait three hours in the waiting room.

We get to see an emergency doctor who asks what happened and for any underlying conditions. Dad says ‘she has dementia’. I notice it and don’t say anything but it all makes sense.

I’m not upset that she had received a diagnosis and neither she nor Dad had told me or my sister. It’s something I would expect my Mum to want hidden – more from not wishing to be a burden on us despite the discordant logic. Dad I guess was sworn to secrecy in caring for Mum. I don’t question it.

We’re not in an emergency bay but in the corridor as emergency is inundated. Three presumably ill or injured inmates from Long Bay jail in handcuffs walk past with prison guards accompanying them. Another man is comforting his elderly wife who has broken her arm and is trying to make conversation. Despite all this, I am calm and my mother looks serene on the hospital gurney. Perhaps knowing her underlying condition is no longer hidden.

We’re in the corridor for another near two hours. Then she is moved to one of the short-term emergency beds where the lights are much darker and she looks even more calm and serene. Doctors tell us she will be monitored and x-rayed and for us to get some sleep.

Dad and I are in the car. He volunteers immediately that Mum had been referred by their longstanding GP for dementia assessment. I instinctively know that this must have been a long process, and that he’s been caring for Mum for some time. He adds that she had sworn him to secrecy which I again don’t even question. I’m a realist and pragmatic, and it is what it is. I ask for the documentation when we get home in the early hours of the morning.

Looking for answers

I remember my friend Michelle’s website . When friends launch or promote community services I generally notice. I’m a volunteer myself. I’m used to researching in a hurry. I find it helpful before jumping straight into health.gov.au. Dad retrieves the hospital documentation and I read the diagnosis – Fronto Temporal Dementia (FTD). I have never heard of this so immediately Google the term. It seems to make sense but something feels a little off. We visit Mum the next day and then she is transferred to the dementia ward at the hospital where we are told she will spend a few nights. She is under observation and undergoes assessment for her shoulder and foot.

It’s a shared room of six patients. Mum looks much younger and far lower down the dementia path than the others. I see a nurse walking the corridor with a man who looks like he is gripping her to death. He is in a precise pattern of extremely intense shuffling up and back. I’m told he is a polymath. A woman in another bed is attended to behind the curtain by a male nurse. Immediately she’s screaming she’s being inappropriately touched over and over (which we could see she wasn’t). The nurse is not alarmed and is professional but it’s sad to witness.

A dementia specialist speaks with us and is very kind. She reads out loud that Mum has been diagnosed with Fronto Temporal Dementia and that the shoulder and foot don’t require surgery or a cast. For someone who generally asks a lot of questions I ask surprisingly few. She notes that Mum should have the family house assessed for dangers of falling. Apparently there are houses and apartments without steps that have walk-in showers big enough to put in a shower chair or can be easily modified. I doubt this very much.

Mum returns from the hospital to my house in Sydney. It’s not ideal as it’s a small terrace with steps and a bath shower but it means I can help out Dad in caring for Mum. I return to the FTD diagnosis and purchase an ebook on FTD. I read it cover to cover and whilst some symptoms I am seeing in Mum are relevant there are others that just aren’t relevant at all. Notably mood swings, impulsiveness, promiscuity are non-existent in Mum. She has other characteristics not mentioned.

Symptoms worsening

Mum and Dad return to Melbourne after a few weeks of living with me. Mum says she’s okay. We see each other at Christmas time when we visit. I can tell the fall has had an impact on Mum. She moves far more slowly, she is unsteady on her feet and requires an arm when walking. She is walking less and shorter distances than previously, and her gait has worsened. Dad has taken over all the cooking and cleaning duties in caring for Mum. I wonder what else he is doing and know it must be a lot. I ask him to book her into Exercise Physiology on at least a weekly basis. He agrees and they find a good one in Melbourne that works on balance and strength.

Border crossings

It’s March 2020 and the spectre of COVID is large. Queensland is closing its borders on 25 March. I tell Dad that all states will follow suit. I offer Dad my house in Sydney which is next to my sister’s, her partner and their three month old. I say I will go to Queensland and see out the COVID period. The family has had a Gold Coast apartment for 25 years and it’s currently vacant. They leave the next day with less than 12 hours’ notice. It’s not a decision with panic or emotion, just a pragmatic one.

Quickly this becomes a good decision for Dad and Mum. I make it into Queensland as the border closes. Queensland has very limited restrictions compared with Sydney and Sydney’s are far less than Melbourne’s it seems. Best of all – Mum and Dad are able to spend time with their first grandchild.

We speak regularly on Facetime. It’s mid-June and the Queensland border opens so I tell Mum and Dad to drive up and get far away from the cold of Sydney and Melbourne. Mum’s osteoarthritis does much better in warmth and it’s pretty clear things are going badly in Melbourne.

They arrive and I spend three weeks with them on the Gold Coast before I head back to Sydney and return to work in the office. Mum has gone downhill and requires constant support walking. Speech is becoming very slow. Dad tells me he’s counting her falls. She’s up to 40 plus falls.

Finding help – for both of them

I find them an Exercise Physiologist on the Gold Coast, and look into external care to help take the pressure off Dad in caring for Mum. We investigate options under her Home Care Package Level 1 she has been assessed for and approved. I quickly realise she is far beyond this. The bedroom in the apartment is upstairs, as is the shower. There are 22 stairs to get to the apartment. Obviously this isn’t a long term solution but we purchase a walker, a raised toilet seat and some other items to assist her balance. We find a weekly visit covered under the Home Care Package providing Dad a few hours respite.

I work in IT and it’s fairly easy for me to navigate myagedcare and understand entitlements. I train people in systems and think it’s probably confusing for most. It requires credentials, authorised access approval, codes and recall of website information. I need to make at least two phone calls to the help line when I get stuck. I think it would be overwhelming for the vast majority. Fortunately I never get stuck in a bureaucratic system loop. But circular web links on myagedcare are frustrating.

On my last Sunday night on the Gold Coast we have dinner around the communal apartment BBQ with 3 other couples. It’s a good night and my farewell. We leave the dinner and Mum, despite being held, takes a fall on the path. I tell Dad I think it’s because she had both red and white wine and mixing the drinks is bad for her. We go inside the house and Dad puts Mum to bed. I hear a crash from the bedroom and find Mum on the floor beside the bed flailing about. I think she’s hit her head and it’s bad, but I can’t find a cut or bruise. I help her back into bed. It’s distressing for me to see her in that state. I tell Dad and he breaks down for the first time I’ve ever seen with tears. He thinks it’s his fault she was drinking alcohol and blames himself. I tell myself I need to be careful with language around Dad. I know it’s serious and that he is her full time carer. Everything I’ve read includes sections for carers – I know the risk for carers getting burnt out and worse.

Dad and I talk about him starting looking at a more appropriate house to live in. He’s onto this. But Mum wants to return to Melbourne for Christmas. I think it’s a bad idea but Mum has been through a lot and it’s what she wants. They drive the 1,800 kilometres together somehow. We have Christmas there and it’s wonderful. and sure enough the borders are closing again some months later. Luck is again on my parents’ side. They get back to Queensland before COVID shuts down Melbourne and Sydney in 2021. I am locked out so Dad is on his own again with Mum. Fortunately she receives another review before leaving and is assessed level 4 for Home Care Package. It has a six-month estimated wait for funding. I am interested in government policy and this rings true.

The need for respite

Dad’s caring for Mum is intense. He shares he only has three hours per week to himself when the Home Care Package carer arrives. Briefly a second provider enables some additional respite for Dad but change of personnel and poor administration end this. Dad spends these three hours searching for a place without stairs or steps which proves difficult. He also spends it visiting aged care facilities to find a provider that will offer respite under the myagedcare arrangements. This is even harder. Most are not taking respite places and the ones that are leave a lot to be desired.

Dad knows facilities. His mother had a stroke whilst living home alone in the 1990s. She was in two different places until her passing. His mother-in-law the same. His cousin lived alone until deemed unsafe and Dad assisted him into a facility before his passing. He knows the system well. Pushing and pushing to get the best for his loved ones is an oft repeated mantra.

Dad narrows the search for a respite provider down to three places. He gently harasses the admissions officer at his preferred place to the point they no longer return calls. Out of the blue, a respite place has become available for three weeks. Mum is taken there and is accepting. Dad visits her every day in week one, until the Clinical Director tells him respite is for the carer – please don’t visit. Dad goes to his favourite destination in north Queensland where he and Mum used to holiday. We speak every day, and he is holding up well, but I am feeling frustrated not being able to help due to border closures.

Dad finds a property that is suitable for Mum and himself and makes an offer that is accepted. It’s a big deal. Purchasing a new property is far from ideal in your late 70s caring 24/7 for a partner with dementia.

The border will be open in December 2021 between NSW and Queensland. I plan to arrive on the first day of re-opening to support Dad in caring for Mum indefinitely.

The catalyst

They have been in the new place for about five weeks and are settling in. She has her 50^th fall, but this time it’s bad – hitting her head again and drawing blood. Dad calls me to say she is in hospital. He’s driven her there in the panic rather than call an ambulance. I understand why. At the same time, we receive notification that she’s been approved funding for a Level 4 Home Care Package. Dad tells me he’s pushed back the meeting with the doctors two days, so we can both meet them when I arrive. I see Mum and she’s looking banged up and a bit stunned again. Her speech ability has declined further.

That afternoon we head off to an aged care services provider under the Home Care Package and we explain she’s been offered a level 4 HCP. We get a sales pitch which isn’t a great experience. It reminds me of being shoved a restaurant menu by a front of house spruiker. The options list runs to four pages and has all sorts of fixed price banquets. I quickly learn the number of hours supported under a Level 4 HCP is not much more than a Level 1. It won’t make a dent in Dad’s caring for Mum. Dad knows this and we guess what’s coming when we meet the hospital team.

Proper diagnosis

The specialist explains she’s been diagnosed with Progressive Supranuclear Palsy. She has the subtype with Parkinsonism or Parkinsonian characteristics referred to by some as PSP-P. He says it’s a complex diagnosis and understands why she was previously misdiagnosed with Fronto Temporal Dementia. I remember I was never entirely comfortable with the FTP diagnosis, but it doesn’t matter in the scheme of things.

The PSP-P explains the many falls, awkward gait, difficulty of speech, vertical gaze palsy, rigidity, sensitivity to light, gaze abnormality and delay in motor functioning. It is rare and a very sad condition as the mind seems to be working whilst the functioning of the body declines. It is mild dementia on a progressive scale. They say life expectancy from diagnosis is five to nine years. I ask what the common cause of death is and the specialist states pneumonia from food entering the lungs or from a severe fall. It sounds bad. They place her on medication for the first time and state it will help. I am relieved there is a proper diagnosis.

Next step in caring for Mum – residential care

On the way to the meeting, Dad takes me to the aged care home where Mum had respite some months earlier. The admissions officer is lovely and greets Dad like an old friend. Dad tells her Mum is in hospital and we guess that they will say she needs 24/7 care in a facility. We also guess correctly that they will look to discharge her as quickly as possible into whatever facility is available given it’s just a few days before Christmas. Luck is again on our side. Dad’s number one preferred place where Mum had respite, has a permanent bed available. We ask them to hold it a day while we visit the specialists which they agree to.

We tell the hospital team a Level 4 package won’t cut it and they are adamant we can’t jointly care for her anyway. We advise a bed is available where she had respite and we see the relief in the eyes of the staff member responsible for discharge. She offers to break the news to Mum with Dad and I present. We meet with Mum and the staff member asks her in a gentle way where she thinks the best place for her to be cared for is. I think to myself the phrasing could be better. Mum shakily points to my Dad and says ‘with my husband’. It brings a tear to my eye for one of the few times in my life. The worker is experienced, and very gently explains that a care facility is the best for her and us. She does a good job and there is no pushback or emotion from Mum. She knows.

A few days before Christmas she is discharged and admitted to the facility. I am so proud of my Dad and so pleased to share this moment with him. I think he had been caring for Mum, cooking, cleaning, shopping, dressing, toileting and showering her for close on three years. By caring for Mum, I mean watching her the whole time given she is now up to in excess of 60 falls. His only respite was when she was asleep – but it’s not real respite. Now the physical and emotional draining is lifted and I am there with him.

I am also proud of Mum. She has never complained and is not complaining now. Stubbornness for sure from that era, but I am nonetheless amazed at her stoicism.

Mum settles into the aged care facility well. We bring her home for Christmas Day 2021 and are joined by my sister, her partner and her near 2-year-old. It is a great Christmas and I think how lucky we all are. The medication has helped a lot. I know this isn’t the usual experience. Whilst young, I remember the unhappiness with the system and the level of care afforded to both my grandmothers and the stress it placed on the family. This has not been like that, and for that I am grateful.

How we’re going caring for Mum

It’s now two years since Mum was admitted to the aged care facility. She is doing well despite more falls and the progressive nature of the disease reducing her quality of life. She has a great geriatrician we get on well with. We’ve gotten our financial and legal affairs in order throughout this time by necessity. This includes updating Dad’s will and power of attorney which are vastly out of date. It’s far easier than I thought it would be.

Spending time living in the same city as Dad for the first time since the late 1990s has been amazing. Visiting Mum with him every other day has been even more rewarding. My sister and her toddlers appear regularly on Facetime with Mum. When she smiles, her smile lights up the room. Same with the few sentences she can make out.

It’s important that while Dad is there for Mum, he’s getting to live his life too. Recently we went to Budapest for the World Athletics Championships. Now Dad has booked himself his first ever solo holiday to Japan this year.

Telling friends and acquaintances about our experience caring for Mum comes naturally to me. Of all things in life we talk about, it’s one that grips the attention of all age groups and demographics. Everyone has a story in return. I feel I’ve helped a lot of people and Dad constantly gets calls from friends when their loved ones decline in health or they struggle with the caring. He does have a great bunch of very supportive friends who visit and I hope I have them one day. If only people talked and shared their experiences more.