Dementia Support Line
Real stories
‘Bonnie is my best friend who deserves the best quality care’ - no respite during lockdown
In March 2020, David moved in with his best friend Bonnie to take on her full-time care. With over a year gone by, the support provided to him has been minimal, leaving David to question, how best to support his friend - a decision he should not have to make.
Bonnie and I have been friends for nearly 20 years. We have a rare, unique relationship – she is my best friend, the sharpest cookie I know and a highly social individual.
Being so close, I was the first to notice that something was awry. She began to forget her PIN number and lose things around the house. After some hesitation by the GP, Bonnie was diagnosed with Alzheimer's disease, aged 66.
Moving in during the pandemic
Before the pandemic, I already did most of Bonnie’s 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 do not regret it.
I want Bonnie to live safely at home for as long as possible, and that means my role is 24/7. Waking at dawn when she does, keeping her company during the day and making sure she sleeps soundly at night. But I need more support to do it all.
‘While as a best friend, these are things I do happily, it should not be this way.’
Over lockdown, I saw a sharp decline in Bonnie and, at points, in me. Any additional care or support I did have stopped, social contact was little to none and, our life changed drastically.
No respite during lockdown
The support of the social care system, be that day centres, care homes or a friendly social worker, is vital. For her, it’s the social interaction. For me, it is being able to take the weight off my shoulders.
Without it, I have felt the strain. Fighting to access a carer's allowance, financially supporting my daughter and keeping my passion for music going, I have been left without a penny. But I have also been left without a moment rest, or any guidance as Bonnie’s condition has progressed.
We have relied heavily on peers at our local Young Onset Group, and Alzheimer’s Society support workers. However, without my proactive nature, this help would have been hard to find, and at points of crisis, almost impossible.
David and Bonnie
Abandoned by the Government
As Bonnie’s carer and a carer to my mother and father before that, I have navigated the social care system more than once. Yet 40 years on, my experience of the system remains the same; inconsistent, neglectful, and unsustainable.
A dementia diagnosis should not mean your savings are drained, you should be able to cherish those years left with your loved ones, with purpose, meaning and connection.
I strongly believe in the phrase ‘the true measure of any society can be found in how it treats its most vulnerable members.’ Our social care system has been decimated and torn apart, leaving those living with dementia and their loved ones to feel isolated and ill supported.
I will continue to fight for drastic, forward-thinking action from Government.
As Bonnie’s carer I am exhausted, however as Bonnie’s best friend I am her biggest champion. But the question that stays with me now is, how do I support her best? Do I fight to keep her at home, or support her in care as a friend?
I am a complete optimist. I try to make the best of it every day. But there are some days where I cannot express how sad I feel about seeing Bonnie begin to slip away now. There are moments of sheer terror. I need the right social care support so I can care for Bonnie the best I can.
She deserves the best quality care. She is a wonderful woman. She can remember things that happened 10 or 15 years ago, and we still laugh together every day. But just because she is not quite the woman she was does not mean she is not there. She’s not gone yet. Government must step in so I can keep going.
Because while dementia isn’t curable yet, the care system is.
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This article was originally published on 10 October 2020, and most recently updated on 29 April 2021.
Carol
saysI 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
Edward Windsor
saysMy 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.
Sarah
saysI 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
Linda Christie
saysDavid 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
Debbie Wells
saysOh 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.
Margaret Aubrey
saysIt 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 .
Brenda
saysI 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.
Eva
saysMy husband had a stroke 6weeks ago he got weakness in his right arm.
Still in hospital. He sleeps a lot during the day lost a lot of weight doesnt eat only drinks water. I managed to see him once since he was admitted . Do you think he got altzheimers still waiting for his diagnosis. Visitors not allowed . I can see his deteriorating ..sleeping all day wake up only for his medications back to sleep again. I dont know what to do
Vincent Lyte
saysJust 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
Patricia kelly
saysI 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
Morag
saysI 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
John Whitham
saysI totally understand what David is going through. I care for my wife who was diagnosed with Alzheimers 5 years ago and the deterioration over the last 18 months is unbelievable. Get 12 hrs a week help to give me a break, this is at a cost to me with apart from her getting attendance allowance we get no help from the government and I am not sure how much longer this situation can continue. People say that I should consider putting her in care but that is not what I want for her, if it was me that had Alzheimers she would have looked after me at home and wouldn't have considered placing in care. All I want is the government to help me to care for her and allow me to have a allowance to help to care for her. The problem of care for patients with Alzheimers has been swept under carpet and forgotten about for years so its time that this government grasped the nettle and give all of the home carers the help that they need. After all we are saving the government money by caring at home. My Wife is 86 yrs and I am almost 82 yrs and it is hard.
Jeffreymartinrogers
saysJohn
I have just read your sad story
You might know this but incase you don’t you are entitled to zero council tax for your wife and suggest you contact them about it
I don’t know whether they will give you any discount but it’s worth asking about
You are also entitled to claim attendance allowance Probably at the highest rate for her worth £90 a week if you have not already claimed it and apply for a blue disabled badge from your council to make things easier for you
I Got all this and got zero council tax for my 93 year old mother when she was diagnosed with dementia and lived in sheltered accommodation till she eventually had to go to a nursing home as her condition deteriorated and she started wandering
I hope that helps you
Jeff
Peter Garside
saysSorry to hear your story which is the case for so many people in our country. NHS realized this was an issue years ago when they invented Continuous Healthcare (CHC). The trouble is that its rarely advertised due I imagine to conserve expenditure. The health situation needs to be "complex", which advancing Alzheimer's Disease causes.
My late Wife died in 2016 & I launched a website to help people claim this valuable health benefit which is not taxed or means tested. You have to prepare thoroughly for an Assessment as conditions need to be scored depending on severity. This can be a matter of opinion so its very easy to be declined by a health service employee. First get your GP on your side then follow my advice on
https://continuinghealthcare.wordpress.com/
Respite care is part of the package provided.
Best wishes.
Peter Garside
Hi again, Peter - we hope you're keeping well.
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.
We recommend visiting our page on 'Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and downloading our free booklet for further information.
-
Alzheimer's Society blog team
Rose Marie COOIL
saysI am a sole carer for my 81 year old husband he was diagnosed with a Alzheinmers 6 years ago.I can understand how David feels I am in the same situation. When my husband was diagnosed 2days later he wa diagnosed with prostate cancer also has Copd hes deaf but has hearing aids, he is going blind with cataracts which cant be operated on because of the Alzheimers he doesnt understand so cannot follow instructions which he would need to do during operation and afterwards. There is no way I would put him in a care home with the covid situation. I allso have severe arthritis but will keep going. I have a daughter but she is a single mum and a key worker so keeps in touch but does not come in the house so we both keep safe. Think what David has done is extraordinary it is really tough these situations and no help.I get £3 on my pension over the limit for a carers allowance, if he was in a home it would cost thousands if it wasnt so sad it would be comical.
Jenny
saysIt doesn't say if David has contacted his local authority adult social care team to request a Carers Assessment and/or Care Act Assessment for Bonnie. This would be the first step to get some support.
Lea. Craggs
saysDavid and bonnie can apply for carer allowance disability allowance due to mental illness can apply for council tax reduction If David already receiving benefits it may not apply. Best to reg as a carer at go surgery local or alzeimers group are very helpfull As is Age U.K. or mental health social worker There is plenty help out there if you are eligible
christine mccallum
saysSelf directed support should be made easier for Carers to negotiate when they find a suitable support/care person who doesn’t want to take on the self employed status....I.e third parties to do the paperwork for them.
Georgina Sullivan
saysHello Christine
Actually this does exist in many areas. I live in Wiltshire & there is an organisation called WiltsCIL they help people who are in receipt of benefits but do want to use it their own way. I know there are similar in other areas & it might be worth asking whomever does the assessment for benefits who they are in the relevant area.
Hope this helps
Georgina
Christine
saysThanks Georgina that is really helpful and wonderful for the Communities with you however
although social services can get packages for People up here in Highland through the self directed support they cannot attend to the employing and all tax returns etc as it's very rural there are no organisations able to offer this service sadly and I know Carers and support workers who would be perfect for this profession who are put off by the thought of having to work as self employed.
Anita Pearson
saysThis sounds like my mum’s Direct Payments account: my brother is her full time live in carer and receives a wage from her account assessed by social services, so she’s his employer. It’s not payment for the 24/7 hours he’s there but it’s something. The account also pays for some agency carers to give him breaks plus an annual contribution towards respite stays in a care home.