A carer’s perspective on dementia: Julie’s story

We know that the disease doesn’t just affect the person living with it; dementia also affects their family, friends and carers.

Our second carers blog comes from Julie, who shares her experiences of caring for her mum; both the ups and the downs…


Julie’s Story

My Mum, Eva, lived with dementia up until she passed away in 2003. At 75, she was taken from us far too young and we felt like there wasn’t anything we could do to stop it.

Mum also had other conditions, most of which affected her heart, although it was the dementia that we found to be the most difficult to cope with.


Mum’s signs and symptoms

Mum was fine in the beginning – she moved into an apartment, went out and about, made her own meals and went shopping, but later things started to change. She would tell my sisters and me stories of people coming into her flat and how things would go missing; from silly things like her skirts to money. She was so paranoid that somebody kept taking her things that she would stitch money into her curtains and pillow cases to keep it safe. We even found handwritten notes around the house that were a warning to people that she knew they were taking her things.

Mum would often say her remote control had gone missing; we’d be cleaning her room and find it on top of her wardrobe. We don’t know why she’d hidden it there, but it was also pulled apart for some reason.

Hallucinations started and I would get calls in the middle of the night from the police saying she had called them because she was seeing aliens! I’d jump out of bed at 4am, only to find that she was confused by a street light; I felt so sorry for her.

Then she started leaving the house and we wouldn’t know where she had gone. We’d receive phone calls from people we knew saying they’d seen her wandering down the street.

Mum often mistook her next door neighbour for my dad because they looked quite similar. She was forever losing or breaking her hearing aids and became obsessed with calling him round to help to fix them. Her poor neighbour eventually got scared because she’d leave them on his doorstep. It wasn’t her fault; she was just really confused.


Support mum received outside of the family

There was an on-site warden at mum’s apartment block, but she was never there. The warden wasn’t reliable and we could only get hold of her in an emergency.

The warden of her building never went around checking on anyone; she lived on the complex but she was just there if someone needed her in an emergency. It gave me no peace of mind and, as far as I was concerned, mum lived on her own.

Although the warden didn’t visit, there was a carer that visited once a day. Sometimes, mum wouldn’t let the carer in the house because she had no memory of who they were and was convinced they were complete strangers. Other times, she wouldn’t hear the doorbell and would ring us up saying that no-one had been to see her. The carers just didn’t have time on their hands to hang around. We would sometimes need to leave money for the carer to buy food for mum, although we didn’t feel comfortable doing so and wished we could know what was going on when we weren’t there.

The block was specifically for the elderly and there was a room for residents to socialise, but she was always too scared to go on her own. Mum didn’t like being in a room full of people she didn’t know.

We were lucky, unlike some, as the flat was given to mum thanks to charity-based support from the government. If we hadn’t have had support from the government, we would have had to take mum into our home to look after her. Affording a care home just wasn’t an option for us; I might have had to give my job up. It was difficult because my sisters and I had families and we all needed money coming in.

The saddest part of it all was that mum had to move out of her own home. She would have been so much happier if she could have stayed at home, because she trusted it and felt safe. She didn’t know anyone in her apartment block; the people or the neighbours.


Technology to support dementia

The problem we encountered back then was that we didn’t know where to find any sort of technology to help mum. We didn’t have enough money to pay for a care home, but we definitely could have afforded a few sensors in case she had a fall or left the cooker on.

There was a time that we had a nasty scare when mum fell out of bed. My sister rang her and couldn’t get hold of her, so she went around as soon as she could and found her there on the bedroom floor. We didn’t know how long she was lying there for, but we think it was around half a day. If I’d had some sort of fall detector, this could have been easily avoided.

If mum went out, or even if the front door bell went, I would’ve loved to be able to see who was knocking at her door from work, so I could check she was alright. We did, at one point, install a camera at the top of the stairs after she told us that she was scared someone was trying to get in. It took quite a while to find what we needed, as the camera wasn’t dementia-specific and finding and installing the components was difficult.

In terms of mum’s carer, I wasn’t concerned that she was being cruel or that she wasn’t doing her job properly; we knew her and trusted her. However, I can see why others would find cameras useful; if I knew nothing about the person caring for my mum, I’d need to know everything was alright and she was being treated well and with respect.

Making sure she was okay in the kitchen would also have been great, so we could see what she was up to and if she was putting herself in any danger. We eventually had to disconnect the cooker because we were afraid she would leave it on, but she was still able to use the microwave.

Something to manage mum’s tablets would have been a god-send. One day, I got a phone call saying mum had changed the rounded batteries in her hearing aid at the same time as taking her tablets; she had become confused and swallowed her hearing aid batteries instead of her tablets! We had to rush her to hospital and make sure everything was okay. From that day on, my sisters and I had to take turns twice-a-day to make sure she was definitely taking her tablets. Even remembering the days of the week was difficult at times when it came to taking her pills; she didn’t take them in any kind of order.

In the later stages of dementia, she briefly came to stay with me. One night, she got up, packed her bag and went wandering off down the road. When I woke up and she wasn’t there, I was worried sick and ended up driving around at four in the morning looking for her. Having a way of finding her would have given me the peace of mind that, if this happened again, I would always know her whereabouts.

Some sort of SOS device would have been useful with her heart, too. She was terrified that she wouldn’t be able to let us know if she had a problem.

Mum had pull cords over her flat that she would pull if she ever had a problem. This would contact the warden, who would be alerted of an emergency in mum’s flat. However, when she fell out of bed, she couldn’t reach the pull cords and so, in a situation like that, the cords were really useless.


Dealing with the challenges surrounding dementia

I think the only way that you can cope with a situation like dementia is to look at it as light-heartedly as possible. It’s not all doom and gloom.

There were times that mum would tell my sister off for stealing all of her skirts and my sister would ask why she was blaming her, to which my mum would reply: “Because they’re too big for your other sisters!”

There was another time that she lost her false teeth! After taking them out at my house, she then went home leaving them behind, unbeknown to us at the time. She kept telling us how she had lost her teeth and couldn’t find them anywhere! One day, around Christmas-time, our cat was playing with something under the couch. Upon further inspection, I found that it was a set of teeth! I assumed they were from a Christmas cracker and put them away in the drawer with all of the other prizes. Unfortunately, I didn’t make the connection for quite some time that they were actually mum’s lost teeth!

At the end of it all, I know how much she loved me and my sisters. I loved her too. I just wish that I could have given her a little more independence, as I think that would have made her so much happier and it would’ve made me happy too.

I still feel guilty now that I didn’t do enough, that I couldn’t have gone to check up on her more. But with work and having a nine-year-old to look after, I couldn’t manage it.

Those times she came back home following a hospital admission were when I wanted to be there most to make sure she was okay. I needed that peace of mind, but it was the most difficult juggling act of my life.

I think I did the best that I could and I don’t think anyone can expect more of themselves than that.


Advice for carers of those living with dementia

For anyone looking after someone with dementia now, I would recommend looking for alternatives and getting as much help as you possibly can to make your life, and your loved one’s, easier. I was lucky when it came to receiving help from the government, but it still wasn’t enough.

When I think about the cost today of using technology around the home, compared to the cost of a care home, it’s a bit of a no-brainer.  I would’ve loved to have had my mum living with me in my home, and still have been able to look after my family at the same time. However, under the circumstances, we just couldn’t do it. We needed an income and also having a young child was a job in itself!

I think that when mum left her own home, it had an impact in a very negative way that I couldn’t have seen coming; she became more withdrawn and the symptoms seemed to be heightened because she didn’t recognise her surroundings. If I could go back, taking into account the alternatives available now, I would definitely have allowed mum to live at least a few more years in her own home. That’s where she was most happy.  

If when reading Julie’s perspective on dementia, you felt her story hit home. You may find our advice on wandering useful, as Gemma, an Occupational Therapist, offers her expert opinion on the best practices to keep your loved one safe. To read the full blog, click here.

We know how helpful it can be to read other people’s experiences, which is why we created this free e-book for you to download…