'If I don’t get respite soon, I won’t be able to carry on caring for Bonnie' – David and Bonnie’s story

David moved in with his best friend Bonnie, who has Alzheimer’s disease, at the start of lockdown to care for her full time. He’s worried that if Government don’t provide support for unpaid carers soon he won’t be able to carry on giving her the care she needs.

A unique friendship

Bonnie and I have been friends for nearly 20 years. We have a really rare, unique relationship – she’s my best friend. She was always a lovely woman and she still is. 

I was the first to notice that something was awry. It was very small things. She was trying to sort out a bunch of receipts and she couldn’t do it. Then she was having trouble with ATMs swallowing her credit cards when she forgot her PIN.

She was young, only 64, but she was finally diagnosed with Alzheimer’s disease in 2016.

Moving in for lockdown

Before the pandemic, I already did most of Bonnie’s care – making her food, her personal care. But two weeks before lockdown I decided to move in full time to look after her. It meant I couldn’t see my partner or daughter for three months which was crushing but I don’t regret it. It’s a privilege to help Bonnie in her time of need.

I provide the bulk of her care. It’s 24/7 most of the time. I want her to live safely at home for as long as possible.

'She’s had a slow and steady decline but recently I’ve noticed a distinct and quick shift.' 

I can’t say it’s entirely caused by lockdown, but some things have definitely made it worse.

I’ve also been very conscious of the total mess the social care system has been in for the last ten years. I’m so glad I was able to keep her out of a care home after the disaster in care homes with coronavirus this year.

David and Bonnie.

Support stopped overnight

It’s really hard work caring for her all the time. She wakes with the dawn so from the moment she’s up I’m on red alert, helping with everything – toileting, washing, dressing, combing her hair. I think the exaggeration of her symptoms wouldn’t have happened without lockdown. It’s down to the cut off social contact. And there’s no coming back from that.

Before the pandemic, she went to a day care centre twice a week which she loved and gave me days where I could get on top of other stuff. That stopped overnight. This had a huge impact on her.

'She thrives on social contact and that’s been pulled away. '

I believe it’s essential that day care centres are supported to open when safe to do so. It’s vital for both of us. For her, it’s the social interaction. For me, those few hours when I can take a break.

Our dementia advisers are here for you.

Abandoned by the Government

The Government hasn't supported us at all. A dementia adviser from Alzheimer’s Society phones to talk to Bonnie once a week and she’s lovely. But I haven’t had any support at all from Government, nothing to support me practically or financially whatsoever.

The Government has been decimating the social care service for years. I’m livid about that. It’s absolutely appalling what’s happened with the care homes. I strongly believe it’s a measure of your brutality if you don’t look after the older and vulnerable people in society.

Sheer terror

I’m a complete optimist. I try to make the best of it every day. But there are some days where I can’t express how sad I feel about it. I can see her beginning to slip away now. There are moments of sheer terror.

I’ve not had any respite care of any kind. I’m getting very tired. I know if I don’t get some support soon I won’t be able to carry on. But with coronavirus cases spiking again I wouldn’t want Bonnie to temporarily go to a care home so I’ll just carry on as much as I can.

She deserves it. She’s a wonderful woman. She can remember things that happened 10 or 15 years ago and I can still make her laugh. Just because she’s not quite the woman she was doesn’t mean she’s not there. She’s not gone yet. But Government have to step in so I can keep going.

Stand with David and Bonnie

The impact of coronavirus has been shattering for people affected by dementia. Urgent action must be taken to better protect people ahead of the winter. Dedicate a message to Government to make them address the reality of lockdown for people affected by dementia. 
 

Share your reality of lockdown

29 comments

Add a comment

David. I did similar for my wife until her passing 2 years ago. I am now driven to try to help carers like you by pushing for system improvements. You can get support for respite and should ask social services for an assessment. You would then possibly be able to organise a companion who would stand in and give you a break on a regular basis. Perhaps even daily.
I wish you all the best and should you wish a chat at anytime dont hesitate to pm me

This is helpful
0

I am the sole carer for my wife who is 64 and has suffered with Alzheimer's from 2014, it did take 4 year to get a diagnosis which in itself was a huge strain but added to that has been the last nearly 3 years and lockdown.
I now feel totally empty and apart from one agency who have been fantastic the rest don't seem to care as long as she is being looked after at home.

This is helpful
0

I so admire David for his devotion and care of Bonnie. I’m a full time carer for my mum, I’m 64, she’s 88. She was diagnosed in 2015 with vascular dementia. I do this alone. My family either don’t care or live in other parts of the country. I’ve just had a gallbladder removal op, 7 weeks ago and had domicillary care to care for mum while I recover, which has reduced now to once a day in the mornings. I’m exhausted, physically and mentally. I’m getting phone counselling one hour a week which is a great help, I’m also an artist and poet which is a good outlet. Lockdown has taken its toll because I used to take mum out but can’t now. Her moods have gone haywire. I get respite five hours a week but don’t have much energy to go to places and with restrictions in our part of UK, it’s difficult, so I rest while the carer is here. I have to pay for care from mums attendance allowance. They do a brilliant job, but it annoys me that mum and other people with dementia should have to pay.
What can we do?? I’m losing mum daily but also losing myself ....

This is helpful
2

Hello Sue,

We're really sorry to hear you've been having such a difficult time. It's good to hear you're receiving weekly phone counselling. Please know you can also call our Dementia Connect support line on 0333 150 3456 for advice, information or emotional support. Our dementia advisers are here to listen and provide support when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/

We hope this is helpful, Sue.

Alzheimer's Society blog team

This is helpful
0

This horrible disease takes hold very slowly and not always detected. Those who try and keep them at home , take on an enormous task. More help should be given to keep these people at home with their loved ones. But loved ones need more support and respite care occasionally for their own mental health and physical safety.

This is helpful
0

I totally share your fears and the enormous task looking after Dementia patients, my husband was diagnosed in 2015 and I have found this year 2020 his deterioration has gathered speed I care for him 24/7 and am happy to do so but it takes it toll and as I receive a state pension which I paid into I am not entitled to caters Support which is now a full time job and more I love my hubby and wouldn’t have it any other way but a bit of financial support wouldn’t go amis, we are both in our late 70s And I am sooooo tired as the care doesn’t End at going to bed but carries on during the night.

This is helpful
1

Hello Christine & Anita
I am aware that provision is really different across the UK but I do not know what the solution is. I have worked in nursing & social care both in the NHS & elsewhere, the system is failing all taxpayers & their dependents but it is also failing those who work at the sharp end & I literally cannot work here anymore. I wish the whole system was different but it is not & of course I most wish it for those people who might be my patients.
Sincerely
Georgina

This is helpful
0

I so deeply feel for David, caring for Bonnie so devotedly. My own wife was diagnosed with Vascular and Alzheimer's mixed dementia in 2013. For years she held her own and I also believed she would never go into a home. The bitter truth however, is that I had three emotional breakdowns in the last eighteen months. The most recent was March. Total. She had to go into respite for the five weeks I was out of action. On my return, I was gently advised to leave her undisturbed in her new safe place. I've visited, (outdoors only of course), and she's always pleased to see me, but she is contented where she is now. The Staff are all wonderfully kind and caring. They have had zero Covid cases through strict preventative measures and close monitoring procedures. I have improved in my physical and mental health and I wish now that I had listened to experts and family years ago who advised me to be sensible and not try to go it alone! I was never as successful as the Care Staff (probably because I was always worn out and desperately short of time and seriously lonely, even though she did attend a day centre once each week). It was kinder to my Wife to entrust her to the professionals, as I now clearly see. They have time and experience to involve all the Residents in crafts, games, exercises, and chat, that I didn't have. They are never too tired to listen. Someone is always awake during the nights, to watch over her and two of them to lift her, instead of me struggling on my own to get her to the toilet in the middle of the night. I love her and always will, but love and capability are two entirely different attributes. I am so very grateful to "the cavalry" for coming to my rescue

This is helpful
3

I am in the same position been caring for my husband since 2015 it’s really hard work I do everything for him he hasn’t a clue what’s going on he is heavy and some days I can’t move because of the lifting , fortunately day centre has reopened so he goes twice a week it costs £40 a day so that’s where attendance allowance goes I would love a break when things are more normal but don’t think I could afford it so I just carry on even though I am worn out don’t get any sleep cos he is on the go all night it’s definitely a 24 hour job

This is helpful
1

My mate Nobby went into Nazareth House Crosby Liverpool on may 7th.We were allowed to see him for 15min once a week standing outside window.Now even this has been stopped.Cant see the logic we are outside.Their CEO probably never been to Crosby.

This is helpful
0

I think you are all amazing and need the support that you would be entitled to if it was a physical illness. As David says it is 24hr care and stressful for both parties. Good luck to you all

This is helpful
0

David you are indeed a very special man. I feel very humbled reading your story. I am caring for my husband whose dementia was diagnosed a number of years ago but has deteriorated rapidly since another stroke at the beginning of lockdown. After a lot of persistence and insistence he is currently being tested for cancer.......that has been so difficult because of NHS shutdown other than Covid! When I feel a bit annoyed with him and yes I am very tired too I will think of you and you will inspire me to as we say in Scotland....” keep a calm sooch! “ I hope you get some help for Bonnie...she so deserves it and so do you

This is helpful
0

Oh David you are an absolute superstar. I lost my mum after several years of this wretched disease and 'heart breaking' doesn't even begin to describe how horrendous it is to see the one you love drift away. I also know how incredibly difficult it is to keep that smile going. You so need a break. It's an absolute disgrace how the Govt are treating our older people at the moment. Keep the faith, David, what you are doing is amazing.

This is helpful
0

It is so hard caring for someone with dementia. I am still waiting for a diagnosis for my husband. Because of lockdown everything has come to a stop.
Social contact means so much to those with dementia. Also as much to those caring for their friends and loved ones.
I don’t want thanks for what I’m doing. I do it because I care. What I do want though is a little help. Just a few hours occasionally to myself. The government are useless. I know there is a pandemic but why are we the forgotten ones.
I do hope in the future there will be more of an understanding of dementia. We are all living longer. How many more will be suffering with this horrible disease .

This is helpful
2

I agree whole heartedly with Margaret. There has been a big change in my hubby’s condition during this pandemic needless to say, l have been very stressed and needed to talk, face to face , with councillors, to help me to understand and give me advice. However, all that was offered was telephone council I gotta. This is impossible when hubby is with me 24/7. We need some social contact , as with our former group meetings. Surely something could be organised for small groups, wearing face coverings and keeping social distancing
I certainly feel that the elderly. and dementia sufferers plus carers, have been neglected.

This is helpful
0

Just want to say what a wonderful human being you are. I am sole carer for my Mum and it is round the clock too. But she is my Mum, so I can’t imagine not wanting to care for her. You are an amazing friend. It really warms the heart to know there are people like you with such an uncaring government and increasingly selfish / self obsessed society. I really hope you get some respite or help, you both deserve it

This is helpful
2

I have had to give up work to look after mom , I am very worried about my financial situation I get £67 per week for a minimum of 35 hours per week definitely below minimum wage but am unable to get a job to fit around moms care , the attendance allowance is split between my other family members that help out at the weekend as they continue to work. I think that the allowances should be more in line with minimum wage as there are a lot of expenses involved ie petrol shopping etc there is no help at the moment and I feel very isolated

This is helpful
1

I am sole carer for my friend who lives 50 miles a way...I do 100 miles round trip every week to keep her safe but she needs social interaction after day centres have all closed with covid ....Luckily she does not to out unless with me ....but with few places we can go for her to have a decent life and give her a life outside of a care home in this pandemic as going in would mean being quarantined for 14 days in a small room, which would be worse.....not good for these poor people. Something needs done to help and for carers doing the work without financial help as well

This is helpful
0
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.