Dementia Support Line
Real stories
Life during lockdown: ‘Shopping for food has been critically difficult’
Mike and Tom have been shielding from coronavirus since March but have struggled to access food. As restrictions begin to ease, Mike worries about what Government support will remain so they can access food and other essential items.
Mike and Tom’s story
My name is Mike Parish and I am a full-time carer. My partner Tom, who has late stage dementia, was identified as vulnerable. We received a letter asking him to stay indoors for three months.
Tom is solely dependent on me for every daily need, including washing, eating and dressing. To avoid putting him at any risk, I have also been isolating for the last three months.
Three weeks without fresh food
Shopping for food for my partner has been critically difficult. At the start of the coronavirus pandemic, I was unable to get any food.
I logged onto the government website as suggested in Tom’s NHS letter but it didn’t let me register. Because I was not personally regarded as vulnerable, I also couldn’t book a priority delivery slot with my supermarket because they would only recognise an account in Tom’s name.
‘I couldn’t put Tom at risk by taking him to the shops, but I couldn’t leave him either.’
For three weeks we did not have any access to fresh food or any of the essentials. Luckily, I found some out-of-date long-life milk and some orange juice to keep us going.
Tom relies on three nutritious meals a day. I was scrambling around trying to make something edible.
I can’t imagine how many more people were in my predicament, or who perhaps had no other choice but to put dependent loved ones at risk by shopping or collecting shopping.
Struggling to secure food deliveries
We have reached a relatively secure situation with our food, but it’s still a bit of a mess and a large source of anxiety.
At the moment, it’s still potluck as to exactly when I might be able to get a food delivery slot. When I found out we had access to a delivery slot, it was still nearly a two week wait until there was one available.
For thousands of families in situations like ours, deliveries are the only safe means of securing food. This has been a key issue for us throughout the pandemic, particularly in the early weeks. And all because we were doing as the government advised.
It’s needed a disproportionate amount of effort to get access to food – on top of our daily 24-hour unpaid caring role, I think most carers could do without this added stress.
The future of our new normality
As a nation we are looking at lockdown being eased with a new normality on the horizon. However, for people like Tom, I can’t honestly see an end to the risk he faces in the near future.
Until there is significant confidence in the risk of infection being very low or that treatment or a vaccine are available, people declared as vulnerable must still be protected.
This means that the need for prioritised and guaranteed delivery slots must continue, and they must be available to everyone who needs them.
Retailers need to ensure that vulnerable people can continue to access food safely, even after the rest of the general population thinks the risk has passed.
I do appreciate that we’re in extraordinary times. I’m not expecting miracles. But the whole purpose of isolation is to protect people and prevent vulnerable people being put at risk.
We are mostly all survivors, we make things happen, but sometimes people might not be in a position to ask for the essential support needed.
How Alzheimer's Society is helping to change things for the better
Since the coronavirus outbreak, Alzheimer’s Society has been working across industries and sectors to make sure people affected by dementia are not forgotten by Government and given support in local authority support schemes.
- We secured the government’s commitment that people with dementia, their families and carers should get priority support from local authorities and supermarkets.
- We have also succeeded in ensuring local authorities’ definition of ‘non shielded vulnerable’ people specifically includes ‘people with dementia’ and ‘unpaid carers’.
- We are breaking down many of the barriers people affected by dementia, including Mike as an unpaid carer, are facing in accessing food.
We continue to push for further action and clarity, and we hope that these changes will mean fewer people will have to go through what Mike and Tom have been through.
Are you having trouble with access to food?
If you have been facing similar challenges when accessing food or support, or you are concerned about a loved one, please contact the NHS Volunteer Responders. You can call them on 0808 196 3646 (8am to 8pm). Alternatively, contact your local authority.
supermarket near me open
saysreally informative posts and ideas
Supermarket near me open
saysreally decent advice
Marie
saysHi Mike
It is not good planning really is it, that the rules set up to organise the priority shopping slots rely on the vulnerable person being able to set up a shopping account independently? We had the same with our mum who also hadn’t got an online shopping account set up. They asked us to get mum to telephone to verify that we were doing all this for her and not abusing the situation to get a priority shopping slot. Unfortunately she was unable to do that. So we just managed as best as we could to get food for her. It sounds absolutely awful for you going for so long without access to fresh food. I wish you were my neighbour, I would have gone shopping for you.
Hope things improve for you Mike.
Mike Parish
saysHello Marie, I'm so sorry to take so long to reply. Thank you so much for your thoughtful words and I'm so sorry to hear that you have problems to and I'm so sorry to hear that you had problems too. I'm pleased to say this issue was taken up with the Minister responsible but by the time this happened we were well into the impact of Covid that nothing was likely to change. Now we are entering another Covid lockdown but where but vulnerable people have not been asked to shield. Fortunately, I managed to get a slot with a supermarket so hopefully we will be able get what we need safely for now. I do hope that your situation is manageable - and thank you so much for your thoughts and offer had you lived nearer. Very best wishes to you and your mother.
Sarah Giles
saysThis is shocking, for all carers and those suffering from dementia, surely our local GP's should be issuing letters stating that so and so is their main carer and should have access to a priority booking delivery online.
Additionally just to show this is not just related to dementia. I set up an account for my vulnerable mother-in-law of 89, at a large supermarket and just because she had never shopped online before, so therefore not on their list, was not allowed any online deliveries from them. I do all her shopping willingly but worry if we were not around locally just what she would have to do.
Elizabeth
saysI am interested in having more information about two of the above statements, namely -
1)We secured the government’s commitment that people with dementia, their families and carers should get priority support from local authorities and supermarkets.
2)We have also succeeded in ensuring local authorities’ definition of ‘non shielded vulnerable’ people specifically includes ‘people with dementia’ and ‘unpaid carers’.
I subscribe to the Alzheimers newsletter and am a member of Talking Point but this is the first I have read of these two achievements. I’ve tried to reregister on the government website but am still not meeting the required criteria like wise with obtaining a supermarket priority order
Hi Elizabeth,
Thanks for getting in touch, and sorry to hear you've been having difficulties with priority supermarket orders.
We would love to have a chat to find out more about your challenges and ensure you are getting the right support, feel free to email [email protected].
We have been working with Defra to ensure that through the local authority referral schemes that people with dementia and their carers are included in getting support to access food. Some supermarkets are still strictly using the shielding list, but as dementia is a disability any reasonable adjustments including delivery slots and priority support should be given.
Hope this is helpful information, and please do get in touch with our team if you need support.
Alzheimer's Society Programme Partnerships team
Maria Ball
saysI am shocked at reading this story. My mum did not receive anything and had I not been going to her everyday cooking her dinner and sitting with her for three hours a day she would not have managed. She suffered with anxiety every evening and spent five hours in hospital one Saturday night as she felt so bad. When she rang me in the evenings say she felt unwell and had a tightness in her chest I just had to reassure she was fine and just to take deep breaths. Thankfully it has passed. There has been no help out there. Nurse from my mum’s surgery rang to see if she was fine and I told her I was here every day. Once they knew she had help that was it.
Gladys
saysMy husband who had Alzheimer’s, is 81 and I am 76. We have not received any letter declaring my husband to be vulnerable and like Mike and Tom accessing delivery slots was almost impossible at the beginning of the pandemic. We are regular home delivery customers in normal times. . Without family support I’m not sure how I have coped.
I think it is disgraceful that my husband was not regarded as “ vulnerable” and so we were left to manage.
Pauline Upton
saysThat is so ignorant of the governament.
I do hope things get easier for you.
Disgraceful performance of this governament. You'd think we were a 3rd world country the way they've kept way behind EVERYTHING!! They dont have a clue what they are doing.
Gladys
saysThank you Pauline. It is easier now and I am now venturing out to local shops for essentials.
Rach H
saysMike and Tom, my heart goes out to you. Government mishandling of vulnerable people is a national scandal. Wish I knew where you live, so I could bring something to you myself... Really hope your situation improves.
Mike Parish
saysHello Rach H - I'm sorry not to respond sooner but i do want to thank you for your very kind thoughts and offer. We are in Somerset recently moved from London. Still fighting to see improvements on how vulnerable people are managed in this ongoing situation. Very best wishes. Mike
Eileen omara
saysNot sure where you both live but have you contacted Age UK in your area . In Wakefield West Yorkshire we do daily shops for every
Vulnerable client with volunteers . We also do shopping on line for you .
P Carveley
saysDon’t know where they live and understand the situation with delivery’s early on ( though improved) Must say we have excellent Volunteer organisations where I am And a note pushed through the door early on re contacts .
Michelle
saysI had the same problem I care for my mum
who has Altzermers I had to go and wait behind everybody else who was standing in the queue to get food I did ask if I could go in with the nhs staff to buy food but I was told I needed a letter so I had to wait and I had to leave my mum at home so I would get up very early and wait for the shop to open at 8 am
Sarah Giles
saysSo sorry to hear that Michelle, did you speak to your GP to ask if they could issue you a letter.
Jeanette Scott
saysThis is interesting and really hope you get support.
I am full time carer for my husband who has Alzheimer's disease but we have never received a letter stating we had to shield for 3 mths. Because he is 84yrs old and I am late 70s I have kept us isolated for this time but have had to order groceries online. This shielding has had a huge impact on my husband making him much more agitated and aggressive. This is impacting on my health too.
Ann
saysHi Jeanette. You did the right thing in isolating for both of you as carers it is an extremely stressful time for us my husband has cognitive impairment and my husband is also more agitated and aggressive and it is bound to have an effect on our own health .
Stay safe 🙋😷😱
Grace
saysI totally empathise with your situation. I care for my 68 year old husband in Scotland. We have had no support and been left to fend for ourselves. He too has turned moody and agressive and I feel the dementia has advanced dramatically. We were never contacted and told he was in the shielding category even although he is also asthmatic and has a heart condition. Life has changed dramatically !!!! So sad.
Norman Price
saysAs my wife's full time carer, who also has late-term Dementia, I found myself in the same position as Mike as regards getting delivery slots. I found several internet sites of companies selling frozen ready meals which we found very good and reasonably priced. I also found sites with small dairies delivering essentials such as milk and bread on a weekly basis.
Pete Middleton
saysThanks for sharing your experiences Mike. Thank goodness you and Tom have survived.
I is SO important going forward that we make sure that those we have elected put measures in place to recognise and value carers, and to provide proper support networks.
Claire Attridge
saysI really feel for you. It is shameful the way this government has ignored carers & the vulnerable throughout this crisis. I cared for my mother who had dementia before this crisis & that was hard enough, but in these times it must be almost impossible to stay positive & safe.