Real stories

Living with my parents again to support my dad with dementia - Vanessa's story

Managing two households

My name is Vanessa, I'm married to Paul and we have a nine-year old son, Noah. We live in North Essex, with my parents, Jenny (69 years old) and Steve (73 years old), about 5 miles up the road, until recently.  

About 18 months ago, having just purchased our forever dream home in a stunning village, my husband Paul and I noticed a marked decline in my dad's health.

My dad had been diagnosed the year before with Alzheimer's. As many will know, there is no clear schedule to these horrid diseases. 

Every day, my husband and I were assisting where we could; 'popping in' twice daily, organising appointments, helping run the house and garden.

Paul and I had several whispered conversations over several weeks about Dad's health and Mum's sanity with having to deal with it, especially having lost my only sister, Alex, in 2013. My parents had cared for my sister, who suffered with spina bifida, at home all of her life, until the age of 43. I believe Alex's death was the start of this for dad.

Feeling the pressure

We couldn't keep running two houses, as well as our full time jobs. It was exhausting and not overly productive.

I think the final straw was Dad's bad fall at the end of last summer.  He face-planted the side of a kitchen unit, resulting in a bloody mess. He split his head, eye, nose, lip and chin and needed emergency facial surgery.

I recall looking at my mum between grabbing towels and calling an ambulance. She was like a toddler who had dropped a carton of juice on the floor.

On a rare good day, Dad said 'I know what this is and all I ask is please don't dump me in a home' and after the tears had calmed down, my mind was set.  

Luckily, Paul was in agreement and we had one of our family chats. Initially we looked at selling up and moving into their house, but even with the best builder locally, it wasn't right.

Around this time, Mum and Dad were spending more and more time at our house anyway. Dad's 'perkiness' was marked as improved when he was with all of us, which I think was due to the constant conversation and stimulation.  

So, finally both houses sold and we eventually fell in love with the house we're in now.  It's not small, and this I think is key for this venture. Your own space is absolutely paramount, as well as toilets (but we'll get to that later).

Settled in our new home

Just before Christmas 2018, we were in - and this is possibly the best thing we have ever done. 

Paul and I run the house as we would our own. Despite the size of it, and having five people in it, I'm on top of the housework. We have saved valuable time on the to-ing and fro-ing between homes. But more importantly, the pressure is off mum and she is no longer dealing with this on her own.  

Mum has time not only to focus more on Dad, but on herself, too.

They have both gained a little weight, eating properly, and regularly. Dad's medications are provided like clockwork and Mum has valuable time away from the situation, so she doesn't feel so overwhelmed by it.

So now I guess I have to admit the negatives.

Paul and I were not aware of just how bad Dad had gotten in such a short period of time. 

Issues with Dad's mobility

His shuffling and deteriorating walking is an issue. We try to ensure he's up in the morning, dressed and downstairs for the day, with assistance to go up to bed at night.

Going out can be difficult, notwithstanding his loud outbursts of 'There is nothing wrong' and 'I can do it'. We're less than a foot from him at all times, be it in a shop or theatre or anywhere.  

As reluctant as we have been, a wheelchair is a saviour! The freedom it affords us all is shocking.

Toilet problems

We have a timer every hour and a half for the loo. Previously, there have been several accidents, which unfortunately have been left to us to deal with.

My dad gets very cross when the timer goes off, but we just smile, because I'd rather have a gob full from him, than being up to our elbows in the cloakroom.  

When he just stands up and takes a wee, it takes everything we have not to shout, but you can't because there is no point. You just clean him, and it up and carry on.

When the laundry pile is higher in the morning, and Mum just shrugs, we shrug too and load the machine.

Attitude and aggression

Anyone living with this will respect this, 'WOW! Where did that mouth come from?!' Luckily we're not easily offended or shocked, so we just smile and repeat the instruction.

My dad has been vile to mum on several occasions, snapping at her, but strangely won't do it to us. I am honestly often hopeful that he's still with us enough to remember how well I don't take being shouted at. Or, maybe it's just her he recognises enough to know he's safe to be frustrated at? Who knows?

'Outsiders'

We have always been very honest about what's going on with Dad and why we have done what we have done. No point not, living in a village.

Most people have been amazing. Our friends make a point of ensuring they pop-in on Dad and speak to him, even if they're just passing the house, or stopping when we're out.

His strangeness is just accepted and we will be forever grateful for others taking us as we are.  

There are those, though, who simply glance at the nice house or the car and immediately hate and judge (poorly).  

They do not know the daily pressures on us as a family, and will not bother to even ask. I will not pen my opinion on such people further, or those who have avoided my parents, like this is something they could catch.

These people are simply not welcome in our world.

Managing as a family

We live daily to expect the unexpected.  Nothing is set in stone and plans change depending on how Dad is.

Dad's alcohol has been cut to all but zero, with his 'special wine' - 0% red. 

We are very close, and even at nine years old, Noah is kept completely in the loop with what granddad has, and the inevitable end.

Mum is a big priority. She will not have to deal with this on her own again, and nothing is too much for her to ask of us, be it a time-out or a good cry.  

Paul and I have each other and some amazing friends. Lean on those you can trust.

Heartbreak

Even writing this is upsetting and not probably as frank as I should be because it is so painful.

Watching the best of men fading like this daily is awful. There is no pattern, no rhyme or reason to it and no cure.  

We wash him, shave him, trim nails, clear up spillages and more. Watching him take a wee in the corner of a room because he's confused, watching him shuffle and stumble like a child, struggling to sit or then to stand, watching him ignored by people he's known 20 years, watching my mum try to keep her pride.

We watch this and we deal with this every day, not because we are showing off, but because we love them.  

If we can provide the safety and sanctity in these last years that I was given as a child, then that is what we will do.