“What? Your Dad has Dementia & Lives at Home on his own? Shouldn’t he be in a Care Home?’I cannot count the number of times I’ve heard this question!”

Dad was diagnosed with Alzheimer’s in March 2013 &, since then, we have put good systems in place to enable him to do as many things for himself as he can. As the Alzheimer’s progresses, we are gradually adding in more support. But with a lot of support from myself, my amazing partner, private carers & family members, my Dad is successfully continuing to live independently & happily in his own home.

The first few times I was asked this question, I really questioned my Dad’s care. Was he safe living on his own? Was I putting him at risk? Was he in danger? Back then, in the early years of Dad’s diagnosis, we didn’t have much support. By the time we did get support, we had already figured a lot of things out on our own. But the same question kept coming up, & it was like a knife to my stomach. I started to feel guilty & it made me doubt myself & question the care & support I was providing for Dad.

In 2017, at the Alzheimer’s Roadshow, I talked to someone who had set up a care company specialising in caring for people living with dementia. We didn’t yet need the washing, dressing & preparing meals that care services tend to provide, but this service offered companionship, which was the main thing Dad craved because friends & family couldn’t be around during the day & I was working full time. We arranged 3 visits a week &, although my Dad had always been against the idea of ‘carers’, these carers were introduced as companions. These amazing companions were able to give me peace of mind that Dad was OK whilst I was at work. It didn’t take long for my Dad to come round to the idea of ‘carers’ & look forward to his visits. Things were easier with this support in place, but still that question was thrown at me – ‘Should he not be in a care home?’

By now, the question was starting to feel judgemental. I would find myself having to explain to friends, family, colleagues, & strangers why a care home was not suitable for my Dad at this stage. They would usually look at me & nod, but their faces said ‘I’m not convinced’ & I would leave with that sinking feeling in my stomach – doubt & guilt that I wasn’t doing a good enough job.

In December 2018, Dad was admitted to hospital with pneumonia & developed delirium while in there. He was out of his routine, in a strange environment & sedated due to his upset at not being allowed to go home. He was assessed by a team who had never met him before the admission & did not spend time with me getting to know his situation. They tested him on making a cup of tea (in an unfamiliar kitchen) & asked him to walk up the stairs (which he failed because he went up a step at a time, like most people, rather than putting his right foot on the step & bringing his left foot to join it!). Based on a couple of weeks of observation & a failed cup of tea & stair test, their opinion was that Dad should be in a care home & was not safe to go home. I was horrified. Before going into hospital, Dad had been doing fine at home.

Fortunately, I had Power of Attorney for Health & Welfare & was able to override their decision. I requested that Dad be given the chance to go back home before considering a care home. Naturally, I was worried because Dad had been out of his own environment, but I wasn’t prepared to give up on him that easily. Some of the hospital staff made unhelpful comments – ‘What, he’s going home?’  ‘He lives on his own?’ ‘What if he goes outside?’ – I bit my tongue.

The day we took Dad out of the hospital I was worried sick, but I needn’t have been. My instincts & experience from years of caring for Dad were right. Within 2 weeks, once the hospital medication had worn off & the reablement team had reduced their number of visits, Dad was doing well & 90% back to where he was before going into hospital. But still that gut-wrenching question was haunting me – ‘Would your Dad not be better in a care home?’

It is now almost 2 years since Dad came out of hospital. He is still doing really well at home, although his dementia progressed throughout the Covid pandemic & he now needs more help with personal care and preparing meals. But although it may not live up to what society rates as perfect, he has a good quality of life. He may wake up at 3am, thinking it’s morning, get showered & dressed. He may have his breakfast, watch TV, & then fall asleep in his chair, but who cares? He is not hurting anyone. He has his independence, & he is happy. He doesn’t have to have the same routine as the rest of the world. He doesn’t have to be up for work or in bed at a certain time. He can get up when he wants & sleep when he wants, & it works for him.

What have I managed to learn throughout this difficult experience?

1. Although professionals may be experienced in dementia, many do not have the first-hand experience of day-to-day caring
2. Whilst I am not a professional & not an expert in dementia, I am an expert when it comes to my Dad & his dementia journey
3. I am doing a good job of keeping my Dad safe & happy at home.
4. I have been able to give my Dad an amazing gift in helping him remain at home for as long as possible.
5. I now have confidence that everything I am doing is in my Dad’s best interest. Whilst dementia is taking a lot of things away from my Dad, together we are making sure it is not taking away his independence, dignity & happiness.