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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20 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 .

Thank you to all who shares there stories.. It is the most difficult situation. Just helps to know you not alone in this struggle..Just affecting my own health.. And very depressing.. My husband has lost interest in every thing. Just sit around or lies in bed.

You have all been very brave & loving to manage so well to date without additional help via professional carers. NHS Continuing Healthcare is designed to fund all necessary help without any means test or cost. This is different from Social Care which is means tested.
Provided health needs are complex NHS should supply a Personal Budget covering the total costs of Care. However the Assessment procedure is difficult & its essential to be well prepared for these meetings with the NHS Professionals.
I claimed for help caring for my Wife Pauline at our home, & was turned down! Only after careful preparation & an Appeal Hearing were we successful. The costs of care was backdated so no complaints thereafter. After Pauline's death in 2016 I launched a website to help people like yourselves coping on your own to get quality help when needed. Further details are on line at
https://continuinghealthcare.wordpress.com/
Best wishes. Peter Garside

Thanks for sharing, Peter. We hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
Take a look at ‘Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and download our free booklet for further information.
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Alzheimer's Society Blog Team

Thank you. We are at the start of our journey with my father. We hadn’t even thought he may get confused later on going to the toilet. It’s hard especially on my mum. It’s so upsetting.

After over 54 years of marriage , you don't expect dementia to take my dear husbands memory away from him, thank you for all the comments, We live life as normal, the sad thing is my husband can't remember our holidays, he can converse with friends or family, the granchidren, can't converse with him, as he doesn't speak to them only smiles, he no longer has any interest in TV, all be does is crossword which takes all day I am always cheerful, I tell him I love him every day, that makes him smile. My husband was a History teacher, he has little or no memory of being one.

I too have sold up moved and now have my Father live with us. He also had a fall and ended up in Hospital . My son also lives with us so managed to find property with lounge bedroom and bathroom for each of us and my Dad is on the ground floor. What I found is no one cares what is happening to him. He has failing kidneys so get appointments about that and has a catheter for the same reason and has an appointment to have that changed every 10 weeks but nothing else no social worker ect Our Dr has only ever seen him once. No one has ever checked on his well being or if equipment we have bought is correct for him. I visited a drop in session for the council who took our name and address but again nothing. The lack of help astounds me

My eyes are brimming with tears as I read your story.

I too looked after my beloved mother who had no idea who she was or even what our relationship was.

I was not prepared to put my mum who gave her all to her children and husband into a care home, but instead tried my best to look after her and my husband who was paralysed from a stroke.

I have nothing but great admiration for all of you and your kindness will be repaid in the end. You are also very lucky to be married to a good man who by the looks of it loves your parents just like you do.

WELL DONE TO ALL OF YOU INCLUDING NOAH

ALL THE BEST AND GOOD LUCK

Thank you for sharing your story with such authenticity. Your family is truly inspiring !

My husband has only recently been diagnosed. We can live normally but are we hiding or, as I am doing, looking to what might come and the need to move closer too family too soon. Possibly not making the most of our good time.

Thank you for all your stories and family love which surrounds this disease.
My father passed away 6 years ago and I look back and that I could have been more understanding of his illness. Not having the knowledge then as I have now I carry a lot of guilt.

My mum was diagnosed with alzhiemers, mixed dementia in 20017, I was running 2 houses and worrying about her when I was not there, she has had many falls, I was shocked she was putting ham on the radiators to heat up for her dear little dog {I had to disconnect the cooker} she had several house fires including one where she almost died, through falling asleep with a lit cigarette.
I still find it difficult to think about that one. After a nasty fall in November 18 I moved mum in with us and I have coped much better, I am financially worse off as I have had to give up my job as a marie curie nurse I was previously a care assessor, and worked in the care profession for many years working with dementia cases so I knew what I had to come. I also have my mum in law living with us and one of the problems is she is resentful of my mum being here ( not that I ask for her help in any way!} I have been quite shocked by this, as my mum in law has no health issues as such.
My husband is very supportive he works full time and has gone with out holidays for 5 years as my mum will not have carers in.
I feel riddled with guilt about this but realise its not forever.
I live in mums world and agree with her at all times its so much easier and keeps her happy. Her mobility is poor as she also suffers with osteoporosis but we manage to get out every other day and have a wheelchair we call the chariot ! I love looking after her and she is much happier and safer living with us.
Its disgraceful there isn't much help out there but hopefully this will change.

Such wonderful stories of love and support - families working together for those that they love who are living with this heart breaking illness.
However there was one comment I picked up on regarding being “shipped off” to a care home. While for some there is the support both emotionally , physically and financially to be had at home, for others there is not ,and families must not feel guilty for having their loved one living away from them. As a registered nurse of many years and having worked in several care homes I know that for some people the regular social contact , regular meals and support to eat them, regular medication and its review , bring a new lease of life to the person with the illness as well as the family. All care homes are different as is your loved one , there will be one that suits their needs and can provide support for the whole family .

i didn,t realise alzeimers would affect my husbands mobility.i thought it was his arthritis getting worse.he was officially diagnosed last october but he seems to be deteriorating very quickly.i know each case is different but i wasn,t prepared for it to be this quick.i dont think there is enough information or advice as to the problems that you face,such as what to do if i need the toilet and have to leave him waiting.several times he,s gone walkabout.it,s very distressing for such a simple thing.

My husband and I have been married 35 years and he has always been a very active person. He was told he had alzheimers 5 years ago. He is in excellent health which really worries me as far as finances go. He loves walking and walks 4 miles a day. He still walks alone as he knows the country roads well but this year I bought him protection to wear in case anything happens. He also does his puzzles but I notice he isn't finishing them anymore. He is starting to yell at me at times and gets angry which is not like him. He says often that he doesn't want to leave our house and he doesn't want me to put him in a assistant living. He is really afraid that I will leave him. I am hoping to stay and take care of him as long as I can but I am 80 now and know as the disease progresses it will be more difficult for me. Luckily I do have wonderful children who reach out all the time. I keep all alzheimers carekeepers in my prayers

My husband has frontal temporal lobe dementia. He does not accept his illness. His problems and frustrations are all my doing. He is now completely deaf so I cannot even talk to him.
I have no help. Have been ill myself and had to have chemo therapy.
A grownup daughter lives with us and has a personality disorder, so cannot help with her father.

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