Enomwoyi and Pearl together on the sofa

Lacking home care support in coronavirus lockdown: 'We were left to get on with it'

Lockdown measures in the UK have affected many people's lives. But some people needed to adapt their lives more than others. Pearl is 86 and living with dementia. Her daughter, Enomwoyi, shares how the pandemic has greatly impacted their family.

Enomwoyi lives with her mother, Pearl, who has Alzheimer's disease. Also in the family home is Enomwoyi's husband, children, and grandchild.

Before coronavirus first reached the UK, carers would come three times a day to help with Pearl’s care.

These visits stopped suddenly when lockdown measures were announced in March. This left Enomwoyi and the rest of the family to carry out all of Pearl’s daily care

Enomwoyi said, 'I was so worried about Mom at the beginning of all this. She’s 86 and has Alzheimer's along with some other underlying health conditions.

'We had several phone calls from different agencies saying they would not be able to come to the house, and then we were left to get on with it.'  

On top of this, Enomwoyi came down with coronavirus-like symptoms.

This meant that Enomwoyi had to isolate from Pearl for three weeks. This was difficult for the whole family because they suddenly had to take on more intense caring responsibilities with very little preparation.

'I don’t know how it would have worked without my supportive family.'

When Enomwoyi began to feel better, she was keen to care for Pearl herself as much as possible. But because of coronavirus, Enomwoyi's return to work was remotely from home. This meant Enomwoyi had to combine work with the increased caring responsibilities for Pearl while there were no home care visits.

In the mornings, Enomwoyi's work meetings would often clash with getting Pearl up and ready for the day. Despite her employers being incredibly considerate, this had an understandably stressful impact on her.

Noticing changes in Pearl

Pearl has not left the house since mid-March, and Enomwoyi has noticed her mother's Alzheimer's disease symptoms worsen in recent months.

'I think in the most part it’s down to the natural progression of Alzheimer’s that is to be expected with the disease, but the isolation of lockdown could very easily have also had an impact.

'Before lockdown, we would have gone out for a coffee once a week to have a chat, and to the day centre to see other people, but this has all now stopped.

'She no longer seems as interested in things she used to love, things like getting her nails done, which is sad to see.'

Luckily, Pearl’s carer has now been able to return to their home. They come into the house twice daily to help with Pearl’s care needs. This has taken a huge pressure off Enomwoyi and her family.

The family feels very blessed to have the support from home care. But they know there are many others that might not have their support back.

Better plans are needed

Enomwoyi reflects on lots of things that are still on pause, and how there doesn’t seem to be a clear plan about when these services will return.

'Just before coronavirus, I wanted Mom to have a review by the Occupational Therapist and Physio, but, at present, these can’t happen.

'I needed a new Blue Badge assessment too. When Mom can go out again, she will need her wheelchair and easier accessibility to the places I would like to take her to. But I don’t know when these things will happen now.'

'I would love to see dementia care being talked about more by the Government.'

'There seems to be a plan in place for everything to open, from pubs to shops, but I haven’t heard much on how our elderly will be cared for in the future.

'It makes it impossible to plan for anything. We need good care for the elderly in our community, and this seems to have been forgotten again.'

Support our campaign

Alzheimer's Society is working to make sure the Government puts a plan in place to get people affected by dementia the support they need during the pandemic. By joining our campaign, you can hear more about how to get involved.

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9 comments

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These are difficult times, and must be very difficult for you. You are correct, the government should do more, for all sick/disabled and elderly people. God bless. Hope you get things sorted.

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I can sympathise with this lady, Mum is 93 and just before lockdown she seemed to be showing signs of Dementia. I live with Mum and have given more care to her since she suffered a stroke last July with some carers calling at lunch time for 4 days a week when I was away at work. I could not get a diagnoses of Dementia until late last month. Caring for Mum 24/7 for me during this lockdown has taken its toll on my health and I have had 2 separate 4 weeks off work with anxiety, and still she cannot see a consultant to understand what has caused this and the department at our hospital is not working at present. I feel very along through all of this and if it wasn’t for my sisters who keep in contact daily, I would speak to no one.

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I know only too well the impact that lockdown has had on the unpaid carer. My Mother is also 86 and living with Alzheimer's and Vascular Dementia. I took early retirement from my job as a Midwife to become her full time carer and she has lived with me since 2017. Prior to Covid 19 Mam used to have twice weekly respite, which enabled me to have a break from everything that being a carer entails. Since lockdown however, there has been no such break and the lack of stimulation and social interaction has taken a massive toll on us both.

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I along with a couple of family members look after my mother who has Alzheimer’s but is in her own home we have been visiting three / four times a day for over 12 months now but during this pandemic we have struggled as we have been out and about doing shopping and working etc but couldn’t get any help or Ppe or food parcels or anything so when the government go on about billions of pounds being spent on social care where is it ? We are definitely the forgotten hero’s !

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Hi there I’m a self employed private carer and I still have 110% to my clients with and without dementia if anything I was always with one of them. I became cleaner, cook, shopper everything because it was families who wouldn’t come and visit.

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I am a full time carer now for my mam ,she is 88 and while she is strong and healthy she has Alzheimer’s dementia .I put my shoulder to the wheel big time during lockdown .I was very much on my own, but I realised only for the carers that come which didn’t during lockdown by my request ,I am generally left to survive anyway .it opened my eyes to how much is expected of me to care for both my parents and no real help from my family .I have a good relationship with my sisters and brothers but they do little or nothing to assist daily or even weekly and the strange thing is they don’t have a clue of how annoyed I am inside that they don’t understand anything only the real basics of dementia Alzheimers,No calls for chats ,no visits to say hello and have a cuppa ,no here can I help out for an hr or two ,no are you alright after being locked down since March and long before and had no real break ?.I find dealing and understanding my mam so much easier than trying to comprehend the lack of support from my family .No matter what I say I am wrong when I bring up the subject of why can’t they help or at least visit more .This morning I sat and thought of a conversation I had with my bro when he said he had been out to lunch and met a lady that has Alzheimer’s dementia and all her daughters were with her, I just flipped to number one a Friday afternoon and being able to have lunch out was a biggie for me let alone anything else .I remarked how sad it is that the same can’t be done with mam (I know now it’s not possible )but all through this there has been no nice treats like that ,just leave her in the house and let me or my father deal with it and sure a few visits and I mean fly in fly out visits should be enough .This is one of hundreds of scenarios .My point is when someone gets a diagnosis the GP or consultant should refer the whole family to an expert to explain what will happen instead of us stumbling through life daily finding out what happens and then it’s too late years later .the supports from Alzheimer’s are great but the information that should be spelt out to everyone in the family is lacking and then it turns to complete ignorance and all left with the one that actually care,s to deal with .I am at this a while and today is the first time I’ve expressed a small bit of rumbling anger within me regarding this .thanks

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Hi Enomwoyi, that sounds like a really tough time for all of you. The care in tbe community is indeed not talked about at all. I am glad you are raising this so important issue and glad that Pearl has got you all around her.

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Yes I agree with Jess. One thing concerns me too that care was withdrawn as soon as lockdown was announced. Is this widespread? I have not heard of it happening where I live , in fact various agencies have volunteered to fill the gaps in need.

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Hi Enomweyi,
It must have been so difficult caring for your dear Mum during these unusual times. I know of the challenges of caring for someone you love with dementia . Your mum is lucky to have you as a daughter and it sounds as though your family rallied round well to support you. I’m glad you are feeling better too. Best wishes
Jess

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