Caring for my parents….I thought I knew what I was signing myself up to.

My house is located a cul-de-sac in a housing development in a mid-sized town. It’s a 1990’s bungalow with three bedrooms, one bathroom with a garden out the back. 

I’m currently renting this house, and have lived here for eight years. 

My mum and dad lived in a house in the countryside, which they had rented for over 50 years. It was their family home, and they loved it.

In September 2021, a substantial crack appeared in the outer wall of the living room, causing their home to become uninhabitable. 

They didn’t want to live with any of us, nor did they want to live in a nursing home. They wanted to live independently in a bungalow, or in sheltered accommodation. 

We started the search for a new home for them but quickly abandoned the idea, as their health had worsened to the extent they could not live independently. 

Mum had severe COPD and relied on oxygen. To walk any length, she needed Oramorph, a morphine medication used to ease long-term or chronic breathlessness.

In October, doctors diagnosed Dad with oesophageal cancer, giving him a two-year prognosis. In November, they diagnosed him with liver cancer, leaving him with only a few months to live. 

It was heartbreaking for them: losing their home, finding out daddy was going to die… and with the COPD, and severe breathing difficulties. It was a dreadful situation for them to be going through. 

Since my parents needed to live in a bungalow – and I was the only who lived in one – I knew the only option was for them to come to me – or go into a nursing nursing home, or hospital. 

Our parents were loving, supportive, and ensured we had everything we ever needed.

Now it was our turn to take care of them. 

After discussions within the family I decided they should come live with me so we could care for them and give them the peaceful end. We would work together to give them the best end-of-life life experience we could.

My parents came to live here on the 20th December 2021. 

Recently divorced, I’d been getting used to living on my own again and then suddenly, my life was going to change again. 

I tried to imagine what it might mean, but when reality struck, the magnitude of the situation was more than I had anticipated. I’m no nurse!

Social Services and the doctors said my parents needed to go into a nursing home, because it was safer.

We said: “No, they will be safe in my house. We will create the safe and caring environment they need”. As we spoke to them, deep down, I had the confidence that we would make this happen. 

Daddy was still quite mobile, but mum had to have a hospital chair because she had arthritis and severe osteoporosis. We had to be very careful when moving Mum, as she could break a bone very easily. 

Mum had bought dad a lovely reclining chair, which was her gift to him after he was diagnosed as terminally ill. He loved his chair.  

To make space for their chairs, my brother and son moved my leather sofa into my homeoffice – where I would end up living for three years.  

When I saw the empty space in my living room, ready for the chairs I could not help it, I started to cry and could not stop.

I think it was panic and fear.

I was afraid that I would cause them more harm or fail to take care of them properly. 

Was it the right decision? 

Seeing my parents’ chairs installed in my living space, I realised: this is going to be tough. 

Due to Mum’s need for full-time oxygen, the health teams had to coordinate the move from their home to mine. 

The move was arranged for 8pm, as the oxygen team and ambulance had to follow. Mum and Dad had no choice but to leave their home at this time. It was a dark, cold and windy night. 

Meanwhile, I was still crying and could not stop.

They were due to arrive soon and the last thing I wanted them to be greeted with me crying. Thankfully, my friend rang and bluntly told me to calm down; it was going to be ok. 

My brother said seeing them leaving their home of 50 years was the hardest thing.

He said Mum and Dad were sitting quietly in their living room watching TV. 

Then, the ambulance arrived, and they left the house calmly. They just had to leave it all behind.  That journey must have been so difficult for them. 

When they arrived at my house, they were brilliant. They settled into the chairs, which had been hastily arranged just before they arrived, and started to watch TV. I had Heartbeat, , their favourite programme, queued up for them.

Then the chaos started.

The next day there were district nurses… occupational therapists, social workers, … doctors… coming to the house, or phoning. 

When the doctor arrived, I don’t think he could quite believe his eyes, because they looked so sick and vulnerable. He was a new doctor, as they had to move surgeries. But he was brilliant, often visiting late at night.

So many things required checking or reviewing. 

It started with the oxygen team checking if they could pipe the oxygen into the house…the occupational therapist then drew up plans to change the bathroom and put rails in. The district nurses wanted hospital beds installed. Social services were checking us out –  I assume it was to see if we were up to the whole task of caring.. 

All this bedlam…. it was surreal to see it all happening so quickly. 

Mum needed oxygen all the time. She had to have morphine just get her down to the bathroom.  

We had handrails installed everywhere, which we still haven’t taken them down yet. 

For three years there were carers.. doctors… nurses… all constantly changing.  They kept saying things like: your mummy and daddy are really ill! Inside, my (sarcastic) voice said:….No, really? 

Creating A Caring Environment

Within the first few days, I made a decision: for this time, this is no longer my home. This is now a place to care for our parents. Between us, we will facilitate their care.     

In my mind that changed my attitude to the situation, which was a good thing, as it no longer felt like my home was being overrun or that my private space was taken. 

My home was being used to ‘facilitate their end-of-life care’. ’. We are going to do it as a family, and make sure they have minimal suffering.

So that was the aim: to facilitate a positive end-of-life experience. 

My stipulation to my sister was: this should not be a nursing home. It should be ‘home’ for them. And we took great care to make that happen;  their furniture in the bedroom, their pictures on the wall. 

The living room, with these two chairs, became the place where everybody came into … the doctors, the nurses…visitors…relatives.   

I installed a keypad at the door and told all the carers, nurses and doctors, you don’t need to knock; just come in. 

That was important. I was working from home so I couldn’t keep answering the door.

The nursing team all told me they felt very comfortable coming into the house. To them, it felt like they were just stepping into another ‘care facility’ – a loving place. 

They actually said: “we like coming here”.

In the dining room I had a filing cabinet with all the nursing stuff so they didn’t have to look where the nursing booklet… pads…etc. were.  It was all there.

We had a family care rota organised. 

My sister who is a nurse, managed the medical side of things. She organised appointments, medicine and care. She came to stay at the weekend to give me respite. 

My brother came over on a Monday and Wednesday and my sister-in-law came over on a Tuesday morning with dinners for the next two nights. We had carers coming in during the week.

It was a team effort. I could not have done it without all of them. 

Through all this, my friend and her husband kindly provided a ‘get-away room’ for me in their home. 

Their daughter was away at university so they said: “that’s your room now”. They created another ‘living place’ for me and I knew that I could go there at any time.

It’s very peaceful – you can hear the sound of the stream next to their house. That was my safe place to go to.  They were brilliant! 

And that’s how I got my time-out.  

‘Home from Home’

Daddy was adamant they were going to sleep in the spare bedroom. But my room was warmer and looked out onto the back, I argued it was better for mum, so they moved into my bedroom.

I had the room painted for them. Mum picked the colours and it looked good. 

Initially, we didn’t want to get hospital beds for them, as it seemed like we were setting the bedroom up for their end of life. So, we bought our parents a special bed that had various automated settings for different positions.

That worked well because dad liked to lie flat, and mum liked to sit up and watch TV.  

And… it didn’t look like as if they were walking right into a ‘hospital room’.

We brought up all their old furniture from their old house and tried to recreate their bedroom – in my bedroom.   

Dressing table, wardrobe… mum liked those lacey dressing table sets, and we put up all the same pictures they had up in their bedroom.  

My niece got an artist to draw their old home…and it’s beautiful. We put that up on the wall so they had that sense of ‘their home’ in that bedroom. 

We really tried to make it ‘their space’, a space where they could be together as a couple and didn’t feel they were sleeping in their ‘daughter’s bedroom’.

All the caring took place in the living room and bedroom.

Most mornings, Dad got up first. I joined him in the living room, and we watch TV whilst having coffee. This was a special, peaceful time. 

Daddy knew he was going to die, and he just wanted Mum to be safe and cared for.  

He was delighted that we were able to this for her. He knew that whenever he passed she was going to be looked after in a comfortable family environment, rather than hospital or a care home. 

Visitors

So many people called to see Mum and Dad.

Their neighbours, friends and relatives, even the guy delivering the prescriptions – who was here every two days – would come in and have a chat. Everyone who came to visit had a positive attitude, and this lifted Mum and Dad’s spirits.    

My home became an open house with more and more people coming – that was a benefit I wasn’t expecting. 

This was not just a house for me to live in as a single person. This house became a home – which was nice. 

‘The Bells‘

Another thing about my parents living here was the constant sound of ‘the bells’.

We started using them in their old home when dad began to have mobility problems.

If Mum was upstairs it meant she could press the bell and let Dad know she needed help. This gave Dad peace of mind as it meant he did not have to constantly climb the stairs to check on her. 

My doorbell is a plug-in one, so I ripped it off my door and brought it down to their home, put the plug in their kitchen. Then I took the buzzer part up to mum and taped it to the side of her bed. She was able to press it, and he could hear it downstairs, so that worked well. 

So, for this house I bought three bells with different ringtones. One for the bathroom, the living room and the bedroom. The bells worked great and we didn’t need to buy the alarm system. A bargain at just £8 a bell!

The sound of the bells always startled me. It meant something was wrong and required immediate attention.

The ringing of the bells, combined with the hum of two oxygen machines, created a steady din in the house. 

When the oxygen machine was installed and first turned on at my house the noise seemed so loud. Initially, I thought: I’ll never get to sleep with all this going on.

It ran continuously for three years, obviously never turned off.  

And then, in July 2023, it stopped. Within days the oxygen company came and took the machines away… and there was a deathly silence.  

It meant Mum was gone for good.

During the first few days after my mother passed away, I couldn’t sleep because the silence was overwhelming.

Sometimes, I miss that sound; a stark reminder they are not here. 

Now, when I come home at night, there is no noise.  

Family Meals

Mum was only 5.5 stone and her appetite was poor so she needed to eat a good dinner.

She liked traditional dinners like sausages, beans and bacon – all the things Dad loved to eat. However, because he was on a liquid diet, Dad was unable to eat. Whenever we were cooking it must have been torture for him.

He would just shuffle out the back for a smoke.  

But…it also meant I was eating differently. I now had to eat what she liked….cabbage, bacon and potatoes. There was no point in making two dinners.   

Family 

The house became a focal point for all the family to be together – including my brothers and sisters.  

I couldn’t really leave the house during the week without someone to look after my parents, so my son and his family would come to our house.

Mum and Dad loved this. It meant they were able to spend quality time with their grandson, his wife, and their two great-grandchildren. 

The house became a place for other members of my family to come and care for our parents. It was a case of the whole family pulling together and making it happen, and it brought us all closer – which was lovely.

Every Monday and Wednesday evening my brother A. came to visit – that was my respite. Before he left, we always had a proper catch up in my wee office. I enjoyed that time with him.

Every Tuesday, his wife would bring him a delicious stew for dinner.  Daddy was able to eat the gravy from it. He loved that stew…. 

As long as their favourite programme was on TV… and the bell hadn’t rung –  I knew they were both safe and content. 

‘The Wake’

My father’s passing coincided with the lifting of Covid restrictions, enabling us to have a proper wake. But, because mum was very vulnerable, the undertaker advised us to have a closed house.  

During the wake, Mum was wondering why some of the local families hadn’t come to pay their respects. So then I had to phone round these families and ask them to visit. She was really pleased to see them. 

The wake was actually good craic. It was a good to reminisce with family and neighbours. 

For mummy’s wake, just 11 months later, it was an open house.

People came in their droves because this time they were coming for both mummy and daddy.  We had to put a marquee up.

My home-office became the ‘wake room’. 

In Ireland we have what you call the ‘wake box’, which mummy had bought. She liked to be prepared. 

It contained two candles, a cross, a holy water font, rosary beads and a table cloth.

Because of Mum’s oxygen, we weren’t allowed any flames in the house so  we had to get fake candles for dad’s wake. They are still in the living room; one beside daddy’s picture and one on their grave. 

The local community centre sent up a hot-water flask and cups and for three days it was a very busy house. 

‘The Bedroom’

The bedroom became a place for Mum to relax so we tried to make it as comfortable as possible.  

Once dad had gone we got mum a smart TV so she could watch her favourite programmes such as Columbo…and Ambulance. 

When dad was alive Mum would not get a hospital bed. She never wanted him to be lying beside his wife on a hospital bed.   

Once he died, she was more open to having one because she needed the special mattress, otherwise she was going to get bed sores. 

It made weird crumpling noises. I wondered how she was going to ever sleep with that, but she was happy enough.

When the hospital bed arrived, it involved yet another set of people to check it and maintain it.  

Once mum died I couldn’t move back into that bedroom.  

I never really dealt with the emotion of Daddy dying in that room. 

He died in my arms from a heart attack. I held him up whilst our carer S. brought Mum over to him so that Mum was able to hold Dad’s hand until he passed. 

That was a tough, but lovely, moment.

When the ambulance crew arrived… I can vividly recall the tattooed arms of the paramedic reaching under my arms to lift Dad from me. The paramedics were in that bedroom at least nine times over the three years.

For me, that room was full of the emotions associated with pain, death and caring. Once they were gone it was just a tough place to be.  

Mum died in August and around October my sister kept saying you need to move back into the room.

I said: “I’m not going in”.

And then she said:’ I’m going to clear it out anyway’. I stayed away and she got everything organised, and the whole thing sorted. 

I’m back in the room again and have put my own pictures back up. 

I have two Elvis pictures in place of the photos of their house and a framed copy of their wedding renewal vows. Once those two pictures went up, I instantly felt better.  

Now, I can put my own music before going to bed at night (or Netflix). All of that really helped. 

Reclaiming the Space.

The bedroom never felt like a ‘sick’ room – but the living room did. 

That because the nurses and doctors mostly dealt with Dad and Mum in the living room. For example, dad had a feeding tube put in and the nurses would change it whilst he sat on his chair.

Mum had a trolley full of her medicines and tablet boxes. The oxygen machine was just around the corner, and her nebuliser was beside her on the trolley. 

Reclaiming this –  as my living space –  was difficult to deal with emotionally.  It was really heart-breaking to have it back the way the way it was. 

The day after mum died my family moved my sofa from my office back into the living room – they didn’t even give me an option.

My sister was pragmatic: ‘you need your sofa and your TV back’. 

For the first week, I really felt guilty that I was enjoying being back in my own living space and able to stretch out on the sofa. Three days later, it kind of hit me that I had lost them and I wanted their chairs back in again

But, quickly –  very, very quickly – it became my house again.

A Caring Experience

The hardest part for me now is Sunday nights. 

Sunday was always a good day. 

My sister would make a lovely Sunday dinner. My Son and his famiIy would be here and in the evening I would go out to my dance class, where I literally left the world at the door. This was my ‘My time’ and my parents knew how much it meant to me. 

When I came home my sister would ensure the house was warm and clean, it felt so welcoming. 

Mum and dad would always sit up to wait for me coming home. Mummy was keen to hear about all the dancing. Who was there… who did I dance with… what steps did I learn? She knew some of the other dancers because they had visited our house and she loved hearing about them. 

Daddy would ask about the traffic… how much was petrol? Have you got oil? Did you put water in for the window wipers? Dad actually bought me my first pair of dance shoes.  

The first night that I came back from dancing and my parents weren’t here.. it was hard. I had forgotten to put the heating on. I came back to a cold, empty, lonely house. Their chairs were gone…and they were gone.  

This whole experience of caring for our parents allowed us to become closer as a family.  

This is a house… but to me, having all these people around… there was a ‘special energy’ – and all the ‘differentness’ that it brought.

I have lovely videos of my grandchildren and daddy out the back of the house fixing a bike. He and R. have the bicycle upside down trying to fix it the wheel together 

Because they were in my house, my grandchildren became really close to my parents. It’s now part of a story for my grandchildren.

Daddy died two weeks after the videos were taken.

If my parents had been in a nursing home, hospital or in a fold …it wouldn’t have been a family thing. And for that, I’m so grateful.

All photographs by Respondent.

For further Information on caring and palliative support please contact MacMillan Cancer Support and Carers NI