Being a Live In Carer for my Dying Mother

A live in carer is someone who cares for someone whilst living in their home. This is my experience as a live in carer for my mother before she passed away.

Introduction

A Live in carer is someone who (as the name suggests) cares for someone whilst living in their home. During the final phase of my mum’s life, after a 10+ year battle with cancer, I became my mum’s live in carer. 

My mum was described as “The nucleus around which our entire family orbited” and we were exceptionally close. My Mum raised my siblings and I on her own, and despite my father’s physical and financial abuse, we had a pretty amazing childhood.

I was fortunate in that having reached financial independence, I was able to do this without worrying about my career. Being able to care for mum in her own home was a huge part of why I wanted to leave my job in the first place, re-aligning my values back towards a family-first approach (over what had previously been a prioritization of my career, finances and status) and to try and make up for lost time. Looking back, I wish I had taken the advice of people like Lacey Filipich and taken a ‘mini-retirement’ or sabbatical earlier in my FI journey to spend time with my family, rather than relentlessly prioritising my career and side hustles to maintain an aggressive savings rate in the pursuit of FIRE.

There are a lot of things I wish I knew before becoming a live in carer for my mum, which I want to cover in this blog so that anyone who finds themselves in a similar situation can read. It is not always the case that the person you are caring for will have a terminal condition (many people may require extended in home care or live in carers for stable disabilities or conditions), but this is just my personal experience of caring so it will understandably come from the viewpoint of my mother’s terminal tummy cancer diagnosis.

One of the first things I would suggest, is that you read Lacey Filipich’s article ‘What Helped me Care for my Dying Mother, and What Didn’t’. This article was extremely helpful, and whilst very emotionally triggering, is well worth reading. Lacey co-created Money School (a fantastic personal finance book) as well as Maker Kids Club with her late mother Fran, and they had a lovely relationship which she very beautifully captures in her article. It hit very close to home for me, leaving me in tears when I read it, and was a fantastic source of information and reassurance during my own mum’s final phase of life. You can also listen to my podcast with Lacey HERE.

Support services for live in carers

At times I felt a bit overwhelmed when it came to supporting services available for me as a live in carer. I will caveat that not everything on this list is as useful as others (and without trying to sound ungrateful, some support services were not very helpful at all). This is a list of what we used and how we used them:

• Centrelink – Carers Payment (asset tested) or Carers Allowance (income tested) – these schemes provide financial and in home relief carers to help you. At the time of writing, Carers Payment is approx $900 per fortnight, and Carers Allowance was $140 per fortnight and you are entitled to 63 days per calendar year of in-home relief care, as well as out-of-home respite care. After spending 3 full days at Centrelink trying to get this organised, multiple rejections and putting in a formal complaint, I was told that the in-home relief care would NOT be able to administer medication (such as subcutaneous morphine, haloperidol etc) – making the whole thing pointless anyway as that was what we were after. Heartbreakingly, Centrelink approved Carers Allowance and in home support two weeks after my mother had passed.

 

• RDNS (Royal District Nursing Service) and Silverchain are two companies that can provide in home medical support where appropriate. For my mum, we were referred to the RDNS initially through her GP for limited in home support, and then later through the palliative care team at our local hospital for advanced. These registered nurses were literally Angels on wheels. They came to the house each day and drew up vials of injectables into syringes, kept detailed logs, and were only a phone call away. After mum passed, they came to the house and provided the extinguishment of life form.

 

• General Practitioner – my mum’s General Practitioner was really helpful in managing her healthcare and symptoms throughout her cancer battle, but primarily in the earlier stages. They also linked in with her specialists (like her oncologist and surgeon) and helped coordinate scans, blood tests and medications. When mum started to get too sick to attend her GP appointments, we were able to do telehealth for a period, but eventually the palliative care team took over from the GP.

 

• Specialists – my mum’s specialists such as her Oncologist, Surgeon and Palliation doctor were very helpful. At times it was a bit of a firehose of information given which was confusing and overwhelming (especially to my dear mum who given the circumstances often had chemo brain fog or was on significant doses of opioids). Making sure I went to all of her appointments, as well as Facetiming other family members, and taking notes kept these appointments manageable, and helped ensure we didn’t miss any questions we wanted to ask.

 

• Palliative Care team – when my mum’s cancer progressed and she was given a terminal diagnosis, we were referred to the palliative care team. Whilst this was initially very scary sounding, the palliative care team were fantastic and had the experience and skills to help us through a very difficult time. Whilst it’s new and raw for you, they have seen it time and time again. I found the experienced pal care nurses had a lot of practical information to pass on regarding coping as a carer. When it became clear that mum was deteriorating and we were struggling to deal with emergency department hospital admissions, they admitted her to the pal care ward for short stays where it was necessary.

 

• Carers gateway – Carers Gateway is an online free support system for carers and can put you in touch with support networks, health professionals, counselors and even just other carers in similar circumstances to talk to. I used this briefly but in general, I was at my capacity with all of my caring duties so didn’t really get a chance to explore using this service.

 

• (my own) Therapist / Counsellor – I found it invaluable to have a therapist who I could speak to and ‘decompress’ for our weekly sessions. I tried to attend these in person, however, as my caring role increased in complexity and/or mum had additional appointments we switched to telehealth sessions, which was important for my mental health.

 

• Family and friends. This might seem obvious, but it will need to be managed appropriately to be of the best use. Don’t worry about hurting anyone’s feelings, being blunt and to the point is the best way forward with friends and family.

 

“Let me know how I can help’ or its equivalents puts the onus on the person needing help, and they have enough onuses to deal with. Offers like ‘I’m going to the shops this arvo, want me to pick up bread/milk/anything?’ are easier to process and accept“

Lacey Filipich, ‘What helped me care for my dying mother, and what didn’t, 2020.

 

• NDIS – National Disability Insurance Scheme. The NDIS exists to provide funding and support to those with disabilities – including terminal illnesses. We waded through all of the paperwork with the doctors and social workers, ‘dotted the i’s and cross the t’s’ and sent them off. We had hoped for some level of home support e.g. a nurse to help mum shower, an OT to do an assessment for mobility equipment or potential modifications i.e. handrails in her shower, and perhaps an hour or so per week for a gardener or a cleaner from the local community to come through and help at home. Delays (presumably due to a huge backlog), meant the NDIS never acknowledged we had sent the forms in, let alone followed them up. We just ended up paying for private contractors to come and help with the housework to reduce our workload (i.e. cleaner, gardener, pool guy), and when things got really bad the palliative care team started sending out a nurse to help (weekly, and then daily).

 

• Social workers – we didn’t see many benefits from social workers, although they were orbiting there on the fringe at times. Mum wasn’t all that fussed about speaking to one as she had accepted her situation (after a ten-year-long battle), and the few that had been involved through the pal care team seemed to offer odd suggestions (like repeatedly asking if she wanted to do art therapy, or make plaster-of-Paris molds of her hands). One social worker did help compile the paperwork for the NDIS submission (which unfortunately did not go anywhere).

 

• My Aged Care – We were referred to MyAgedCare by one of the social workers. We filled out the paperwork however mum was too young to qualify for any form of assistance.

 

• The Cancer Council – provided a one-hour financial advice coaching session for my mum with a financial planner. Whilst we weren’t offered any other support, I believe they do offer things like accommodation for people who need to travel to town from remote communities to undertake chemotherapy, and that sort of thing.

Day-to-day life as a live in carer

Day to Day life as a live in carer for my mum followed a fairly regular schedule. I started the day at 5:30, waking up to heat up some heat packs for my mum and prepare a Movicol sachet for her. Towards the end of mum’s life, the walk from the kitchen to her bedroom became quite emotionally agonising as I would be mentally preparing myself for the possibility that she may have passed during the night. I was usually so nervous I would check on her throughout the night a few times also.

Whilst preparing her morning medications I would grab the puppy out of her room (Lest she attempts her morning bounce around on mum to lick her face), and then sort out my own brekkie. I would prepare mums breakfast (not that she would eat a lot) and try to tempt her to eat anything small and delicious (like figs, blackberries and raspberries) and then tidy up for a bit.

After brekky, mum would need to rest and would have her morning routine (showering, getting dressed etc), and I would feed the chickens, clean out their nesting box and then take the dog for a walk. Mum would make an effort to come on a short walk with us to ‘keep everything moving’ and get some exercise. Mum was very independent and was able to do most things independently (like her own personal hygiene/personal care, getting dressed and toileting), but she needed help for anything household-related or larger tasks such as cleaning, shopping, driving, cooking and gardening.

After walking the dog, I would do some pilates and weights, and then water the gardens. After morning routine was sorted, mum enjoyed pottering about the house, going through her kindy teaching resources or having a short 5 minute guitar practice. We would have cups of tea or coffee in the garden, and she would enjoy reading a book.

We would often have a few medical appointments throughout the week, so I would drive mum to those, and we enjoyed starting a tradition of getting a cheeseburger on the way home from her chemo sessions.

On days at home, we would enjoy a simple, small lunch, often something like poached eggs from our chooks on sourdough, and then we would try to relax at home with a book in the reading room, watching a few episodes of a TV series we were watching or a movie, or I would write for my blogs.

Dinner would be something small around 5:30pm, but often mum wouldn’t want to eat. After dinner, I would feed the dog, and then mum would put herself to bed.

Despite not really ‘doing’ a lot, and going to bed early myself, I had difficulty sleeping due to the stress and generally, I was always exhausted and felt chronic fatigue – something my doctor prescribed sleeping tablets for (but for which I felt conflicted taking since I was always the ambulance plan). A lot of my time was spent just ‘checking’ on mum, making cups of tea, tidying up, or just being with her.

End of life care

As mum’s cancer spread, her health deteriorated and she continued to lose weight, strength and was gradually less and less able to do things. She continued to have her chemotherapy, which was switched to a ‘therapeutic’ dose (this means it’s a reduced amount and its intention is not to completely cure the cancer but to try and slow its growth and provide symptomatic relief). Her CA-125 blood marker levels continued to elevate, indicating that the chemotherapy she had been receiving was becoming ineffective.

Throughout the course of her 10 year battle with cancer, she had switched between 8 different chemotherapy drugs – she had basically done them all!

She would have periods where she would go downhill quickly, a ‘death spiral’ or ‘circling the drain’ we called it.. For example, she wouldn’t want to eat because of the pain her stomach tumours would cause, and the pain relief then causing severe constipation (leading to a bowel obstruction and several partial blockages requiring surgery). So she would have no energy, and she would become dehydrated and weak.

It was terrifying when her temperature would soar above 40 degrees (and being on chemotherapy we had to take her straight into the emergency department). We were able to ‘catch this’ a number of times with visits to the ER, NGT’s and tummy pumps, and then steady feeding alternating Ensure (a dietary meal supplement liquid food), laxatives and Movicol. It got so bad that she had to stay in hospital (in the palliative ward) for weeks at a time, and my anxiety levels would significantly rise.

Mum was determined each time to get home, and would even go so far as to fully pack herself up and do her hair and makeup as best she could before leaving the ward. Honestly, you would have never known what was going on as she always presented herself so well. She was determined to make it home for Christmas (and unbeknownst to her, we had set the house up for an early Christmas celebration for when she got out).

After her last hospital admission, to control her pain, they sent her home with a syringe driver or ‘pump’ to subcutaneously administer medication – pain relief, anti nausea, anti anxiety, muscle relaxant and an anti-muscle spasm drug which also helped reduce sinus and mucous production. I was also taught how to administer breakthrough medication by the nurses, and we got sent home with enough morphine and other injectables for a warzone. This worked really well and was necessary because mum was unable to take tablets anymore (and they weren’t absorbing as effectively).

We received a phone call on the Thursday Afternoon from the Oncologist gently explaining that there was nothing else that could be done, and he had decided to stop giving any therapeutic chemotherapy. Mum passed away on Saturday evening, surrounded by her children.

Contrary to what everyone says about a peaceful death, the death was quite traumatic to watch – I won’t go into too much detail but for example she began to bleed profusely from her nose and mouth, and she had a lot of pain which required calling the doctors for approval to use more frequent morphine. We were assured that she was comfortable and not in any pain, but it was little comfort. As her body began to shut down, and with the amount of medication on board to manage her pain, she began to breathe slower and slower, until she took her last breath.

End of life administration

After my mum had passed, we phoned our palliative care on-call doctor. She was very gentle, and organised for an on call RDNS nurse to visit. The nurse provided the extinguishment of life form, and helped us organise a funeral director to collect mum that evening. The funeral director organised the death certificate, which took a few weeks to arrive after the funeral.

Mum didn’t really want a funeral, she just wanted a big wake at the family home in Adelaide, as a celebration of her life. However, because Mum had touched so many lives over such a large community, and we have a large family from all over the world, we held a simple service and broadcast it online. This was a 40-minute service, which cost $7500 including cremation (which my siblings and I jointly paid for).

We all thought my mum had a pretty rock solid will – it was quite simple and just listed her children as joint beneficiaries, her estate comprising her (paid off) home and contents, car, and superannuation balance. She listed the eldest sibling as the executor and power of attorney, the second eldest sibling as her substitute decision maker (medical power of attorney) and the process all seemed very simple.

One thing that made it particularly difficult for me was that as I had moved in with her to be her live-in carer, and we did not have anything official in writing regarding living arrangements, after she passed away my sister contacted a lawyer to serve me an eviction notice from the property (as she wanted to live there). This was pretty fucking brutal and resulted in me literally becoming homeless for a few months.

Thankfully I was able to quickly sell a bunch of my stuff, put the rest of it into storage and couch surf with a mate for the week before I went overseas (otherwise I would have just had to book into a hotel or Airbnb). I am also very fortunate to have a large emergency fund and investments behind me, so I could have covered the bill for a hotel if need be. When I got back from overseas, I was able to stay with my mate again until I found a rental.

No matter how trustworthy you think your family is, when it comes to deaths, estates, wills, and where money, property or inheritance is involved, you can’t really predict how anybody will behave, so you want to ensure you’re covered with agreements in writing such as a right to occupy. I found this particularly heartless and cold, and it was incredibly stressful at an already difficult time.

Other admin processes which were important were sorting through all of the financial statements, accounts and services to build a picture of mums finances. I wrote everything up on a big whiteboard in the house, noting what the item was, the recurring cost, and whether we needed to cancel it or not – for example we didn’t want to cancel her phone plan as we would still need her phone for two-factor authentication (2FA) to be able to manage or close other accounts until probate was granted to the executor. It all felt like a bit of a puzzle – and mums affairs were fairly straightforward. This really prompted me to update my own estate plan folder for my own passing, and I updated all the important and relevant documents (like my will, advanced care directive etc).

Organising the funeral

Organising mum’s funeral was very straightforward. We chose a modest funeral director, and they came the night mum passed to collect her. When my grandmother passed away, the family went for quite an expensive funeral (which was about $25,000). Mum’s funeral was $7,500, which included everything. It was a modest, but beautiful service, which was streamed online for relatives in Europe who couldn’t make the flights over due to their own poor health. If I am honest I couldn’t tell you the difference between the two funerals, so I don’t think you need to pay 25 grand for a funeral.

Managing mums estate… trouble brewing

I helped the executor by gathering important documents and placing them all into a folder, and starting the process to clean out the house, listing and valuing all the contents, getting the house appraised, and emptying out all the rubbish. Don’t get me started on the conflict that this eventually brewed, as I later found out the executor wanted to undervalue the house so they could buy it on the cheap… I suspect it was my getting (and personally paying for) an independent valuation of the estate which triggered the eviction notice.

Anyway, from everyone I’ve spoken to, family drama is the norm with any death, which is why it’s so important to have a rock-solid will and estate plan (Fearless Folder) so there is absolutely no ambiguity which reduces scope for conflict.

Ways I managed my own stress

I wouldn’t say I managed my stress particularly well. The very tense times caused conflict between me and my work, some friends, and definitely between my family and I. I was upset that other family were not ‘putting in as much effort’ into helping Mum as I was, and it made me feel burnt out and generally felt like a lack of respect and courtesy from other immediate family members.

Having said that, I tried the following ways to manage my own stress:

• Eating well, trying to include whole food plant-based foods
• Regular exercise – pilates and weights, dog walking and short hikes
• Trying to maintain sleep hygiene (although I wasn’t very good at this).
• Zoning out / dissociating whilst watching YouTube streamers for old games I used to play as a kid (Runescape and Age of Empires)
• Talking to a therapist
• Watching a movie with Mum
• Trying to limit alcohol intake
• Cuddling with the puppy
• Spending time in the garden
• Taking a course of antidepressants and sleeping tablets under the guidance of my doctor
• Words of affirmation and journalling
• Trying to look at my goal board (although I did generally feel a bit lost and tempted to give up on my goals during this time as they didnt seem important anymore in the midst of what was happening)
• Setting a regular time to do short amounts of writing for my blog
• Reading a lot of books
• Meditation, including the use of Psilocybin as a gateway enhancer
• Venting to my partner and close friends
• Acknowledging that it is OK to spend on conveniences such as Take-away, grocery delivery and meal delivery
• Outsourcing tasks such as vehicle maintenance, grocery delivery and household cleaning
• Limiting my time working on the business (i.e. not always trying to grow it or set up new website deals)

Things that made it worse

• Physically leaving my phone elsewhere or in another room when I slept wasn’t an option – Mum would use it to contact me if she needed help or pain relief, so my phone actually became a source of anxiety for me, as every time it pinged it meant there was some form of crisis I needed to resolve. I don’t know if there is a way to actually get around this in today’s day and age of mobiles.
• Well-intentioned friends and family members visiting, making a lot of noise, ‘expecting to be entertained (perhaps not directly realizing what they were doing, but basically demanding attention and conversation) and then leaving behind a huge mess for me to clean up when they left
• The doctors, social workers, nurses and other hospital staff being ‘overly hopeful’ and at some times, what felt a bit like ‘toxic positivity’ and providing false hope. We knew the situation was dire, and nothing was guaranteed, but the talking up of clinical trials – including talking about how promising some were and then her being screened out from participating in them was devastating. Having many treating staff tip-toe around and sugarcoat the facts made it difficult /confusing to actually comprehend the facts and situation sometimes, which fed into the denial phase of my grief that somehow she would get better and everything would be ok.

• Family meetings regarding her care didn’t happen until she got seriously sick. Starting them earlier would have made it easier, and enabled us to share caring and other responsibilities. Instead, that basically fell to me.

• Family members and friends whose coping mechanism was to distance themselves from Mum. This upset me and Mum, who even said a few times she thought that certain people had “Already written her off”. My therapist suggested they began to distance themselves as a form of pre-grief to lessen the pain of her passing. Again, this placed more stress on me as the primary carer.

• Due to the COVID-19 pandemic and mums being immunocompromised from her Chemotherapy, I basically stopped going out and hanging out with my friends, because I was terrified of picking something up and bringing it home and making her sick. I definitely felt increasingly socially isolated, and we even started getting groceries delivered and that sort of thing. My partner who works in a hospital was also acutely aware of the risks of disease spread, so she limited her coming over to reduce any transmission risks, and again this fed into feelings of being isolated.

Summary

Well, it’s been a bit of a rambly blog post, but there you go. Hopefully, this information about live in care helps someone who ends up in my position caring for a dying parent. I truly hope none of you do, but, it’s here just in case. I guess the single biggest help was the Palliative Care team from the hospital’s palliative care ward. Don’t be scared of them – they were our greatest resource and really helped mum’s last few months to be as pain-free and comfortable as possible. I would suggest making contact with them as soon as possible.