Catriona's Story

When my dad’s dementia progressed to the point that he couldn’t be left for too long on his own, my mum, who was dad's full time carer, had already given up most of her own hobbies such as golf, as it meant she would be away from the house for too long. Mum’s only time away at this point was playing bridge twice a week, but this was now proving difficult too. I was in the fortunate position that I had some control over my work diary. I was working full time as a Cognitive Behavioural Therapy (CBT) Counsellor.  

To begin with I was able to arrange my diary so that I could get back to see to dad, meaning that mum could go to bridge and didn’t need to rush home and could enjoy her time seeing friends. Mum and I had always spent a lot of time together having short breaks away, but that stopped as one of us had to always be with dad. We had no help from Social Work until 2019 when we had a lovely carer coming in for a couple of hours 2 times a week. As my dad's needs increased and his mobility decreased, mum became physically and mentally exhausted (as with most carers). I began working at our local Carers Trust Centre, counselling unpaid carers. Through them I found out about a day centre nearby. We were able to get a private place for dad there one day a week. As we were paying for this privately, we had to take dad there for 10am and pick him up at 3.45pm. Mum tried to use those few hours for self-care. But dad soon started to protest about going, refusing to get up and dressed etc.

Mum found this exhausting, and it would make her stressed, spoiling what was meant to be her “relaxation” time. I decided to drop a day of work and would go along to mum and dad's house to get dad up and dressed and take him to the day centre. I would then pick him up again at 3.45 and take him home. This meant mum could have some time out and didn’t need to rush about and clock watch.

During COVID, I was able to work from home. This was a godsend as I was able to reduce my working hours and spread my work sessions out more which meant I could pop along to mum and dad's if needed between sessions. The day centre was obviously now closed due to COVID. Dad's dementia was getting worse, he was regularly up ten times through the night and would often fall, so mum had to help him up and guide him to the toilet each time. I started staying overnight twice a week to let mum get a sleep. Social Work eventually agreed to give mum two eight hour night covers.  I continued with my two nights sleepovers. Dad had pneumonia in August 2021, he was bedridden for a few weeks. He never regained his strength from this. Mum was on her knees with exhaustion. My dad was regularly falling and my husband was the only one that could get him up off the floor. I was reducing my working hours more and more to help out. I am self-employed so didn’t get paid if I didn’t work.

I found that I didn’t want to go away for more than a night at a time as I was worried about how my mum would cope. I was regularly declining invitations out. My husband was having to go to things on his own. This caused me to feel guilty that I was neglecting him and my youngest daughter who was still at home. I was well aware of carer's guilt from my work with the Carers Trust, but hearing about it and experiencing it are two different things. I worried that the stress my mum was under would cause her to have a heart attack. At the time she was 78, with arthritis in her hips. I felt that I should be doing more for my parents and at the same time felt guilty for abandoning my husband and daughter 2 nights a week. I also worried that my business would suffer if I cut my working hours or was distracted by what was happening with my parents.

Social Work were no help, I would go as far as to say that they made a stressful situation worse. They said if we weren’t/couldn’t cope then dad would have to go into a care home. This was their standard response for the rest of my dad's life. None of us, including dad wanted him to go into a home. This was their choice.

My dad developed pneumonia again the week before Christmas 2021. He was once more bedridden. I cancelled all my appointments for the following three weeks. At this point my mum was struggling with mental and physical exhaustion, to the point that she could hardly speak at times. Dad's overnight carer had to isolate for ten days so we had to cover her two nights ourselves. My eldest daughter took unpaid leave, then sick leave from her work in Leeds to come up. We took night about caring for my dad with my youngest daughter (who was 18 at the time) taking turns through the day to help out. At times I was distracted at work but had to keep going as this was my only income.

Until you are in a caring role, it is very difficult to completely understand just how exhausting it can become. It is not a case of just getting a good night’s sleep and everything will be fine.

Dad sadly died on the 17^th January 2022.

We never regretted caring for him at home. This was absolutely the right thing for us to do.