Vanessa's dad and her son, Noah

Vanessa's story: 'There is no pattern, no rhyme or reason to it and no cure'

Following her dad's dementia diagnosis, Vanessa and her husband sold their home and bought somewhere suitable for the whole family. Together, they support each other through the many challenges dementia brings.

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. 

Vanessa's family

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).

Vanessa Streete and her family in a car

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?

Vanessa's parents

'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.

Vanessa's dad and her husband Paul

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.

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5 comments

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Having been through this journey ourselves, I fully understand everything you are going through. It’s hard to see the person so strong through all your life, look scared and need you in a way you never knew. Heartbreaking things and when they scream and shout you think it’s your fault and go home worrying all night where u went wrong when they in fact have forgotten the situation and are sitting drinking tea with another member of family . My mum was our everything and our rock a strong women and never fazed . To see her look so frightened and so confused was the hardest thing for us all her grandchildren found it very hard this lady whom helped raise them barely recognised them . It you have to carry on . Never argue with them remind them with songs and photos of the happy family times this is what we did .
My mum died 25/03/2015 and still it’s raw pain

It’s a year to the day since my Mum died. She had vascular and fronto temporal lobe dementia. I gave up a well paid job to help care for her, together with a little army of carers, for four years. It was such a difficult learning curve, I learned not to argue with her if she thought black was white. There were days I came home, crawled into a ball and sobbed. But I have some hilarious memories of her too.....she loved going out and with determination and persistence, we managed to get her out in the car until the last two months. You are doing an amazing brave and very difficult job, please ask for help when you are ready to accept it. Don’t beat yourself up if you get it wrong (and you will, believe me). Most of all, make some new memories as your Dad is still in there, just sometimes he is more hidden from view. Good luck, to anyone going through this journey. By the way, I didn’t go back to my stressful job.....after 9 months I decided to train as a carer and am loving it!

The way you are helping out is amazing. One could easily ship him off to live at a nursing home, but the fact that you provide the dignity and support is honorable.

Well done to you all and keep going. While it's hard, one day you will look back and reflect on what a privileged journey you are all on. Right now I'm sure that sounds stupid, but I promise you, its true. But for the time being, keep going. x

Just a quick comment on the Loo ! Once you can get him to SIT your problems are changed ! You will need a Splash guard from the Internet , essential ! And Tena pants , which you get from the Continence clinic, should be incontenance clinic, referred by your doctor, and also a small torch ! So that you can see what,s going on behind ! Loved your blog so many things we have experienced .

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