Dementia Support Line
A year of home care in coronavirus lockdown: 'We were left to get on with it'
One year of reduced social contact has affected many people's lives. But some people needed to adapt their lives more than others. Pearl is 87 and living with dementia. As we mark Coronavirus Action Day, Pearl's daughter, Enomwoyi, shares how the past year 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 two grandchildren.
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 last 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 87 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 two 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.
‘There have been occasions when Mom has been emotional and very tearful and, as her primary carer, I have had to be on hand to support her.’
Despite her employers being incredibly considerate, this had an understandably stressful impact on her.
More recently, Enomwoyi has returned to working in an office, so family members have continued to support Pearl with her care needs during the day with reduced professional support.
Noticing changes in Pearl
Pearl has only left the house four times since the start of the pandemic last March, all for hospital appointments.
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. I’m convinced, that although we do the best we can to motivate and engage with Mom at home, she has missed out on the positive interactions that came to halt with the pandemic.
'No bi-weekly trips to the local coffee shop for afternoon tea. No bi-weekly sessions at the day centre where she could interact with familiar people outside our family. No visits to healthcare professionals which brought an additional element of conversation and interaction into Mom’s life.’
'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.
‘Each day I worry if our carer might be unable to continue to care for Mom leaving us in an unimaginably stressful situation in terms of trying to find an alternative, equally agreeable and sensitive carer,’ she says.
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 disruptions to essential healthcare for Pearl.
‘There still doesn’t seem to be a clear plan about how and when these services will return.
'Without the pandemic, Mom would have had several visits to several professionals - our GP, dietician, foot specialist, occupational therapist, and, physiotherapist.
'With the restrictions, consultations and reviews have been virtual, and sometimes very difficult to arrange. In addition, the lack of liaison between different professionals has been unhelpful and frustrating, leading to delays in her prescriptions.
'For example, one hospital appointment was cancelled because of Covid, without them informing us, so the effort of getting Mom ready and attending on time, was frustrating beyond belief.'
'I would love to see dementia care being talked about more by the Government.'
Enough is enough
Urgent action is needed to ensure that never again will people like Enomwoyi face such hardship and loss.
Show your support today and stand with us to see those worst hit by the pandemic prioritised in recovery and care.
Stand with Enomwoyi
Stand with us to see those worst hit by the pandemic prioritised in recovery and care, now and indefinitely.
Enomwoyi's story was initially published in June 2020 and was amended in February 2021.
Michael Rawlins
saysI can empathise with most comments made on this site.
I have lost both my parents in the last 3 months.
Both my parents were at different stages on their journey through Alzheimer's
Covid has been cruel to me and my brother .
We had to put mum in a Care Home in a September and were only allowed to have contact through a glass window.
Dad was detained in hospital following a feinting episode.
He never returned home having contracting Covid while hospitalised.
Again we were unable to have contact with him until we were told he would be passing away very shortly.
Before their deaths it was difficult to deal with their issues as they were at different stages.
We had careers for my mum but she would not engage with them ,thus placing her in Care was the only option as her Care needs could not be managed by myself.
It is sad that my mother could not attend my dads funeral,and because of the onset of dementia she could not say her goodbyes!
My thoughts are with all families having to deal with their loved ones through Dementia
Mike
Clarissa Gibson
saysHi Mike,
Good Evening. I have just read your story and I’m so saddened to what you snd your dear Mum and Dad have been through last month. Absolutely devastating for you to go through that alone and your mum and dad separated. So inhumane.
I hope you are ok SD you can take some peace in remember Ming the better days with your parents and that they are no longer suffering.
Sylvia Budd
saysI know from personal experience how hard it is to be a carer for someone with dementia. My husband, now 92, was diagnosed with dementia in March last year at the beginning of the Covid outbreak so much was done over the phone. I am 85 and physically disabled and we have been married for almost 47 years. My husband is very forgetful, can hardly put a sentence together and panics easily. Fortunately he is physically quite good for his age and can still do some household jobs that I can't manage, but he must have aged 10 years over the past year. It has been the worst possible time for this to happen as we are socially isolated and he is not getting the mental stimulus he needs. I am "on call" 24/7 . My GP is very understanding, but he says very little can be done to give me a break at the present.
I know that we are only at the beginning of a long journey and I am very fearful as to what the future will bring. Only one of our children lives nearby and he does help a little but he is busy with his own business.
Christina Isherwood
saysYou have all my sincere best wishes on your very sad situation. I am glad at the very least that your husband can give you some practical help. You will "be on call" during the night if he wanders I should imagine. I will pray for God's help with your predicament. Christina.
Mary Anne
saysSo sorry to hear these stories. Here's my personal rant. My dear sister, aged 60, has early onset alzheimers. Probably at stage 5-6. She moved in with me on 24 March last year for 3 weeks initially (!) but is still in my spare room. She has definitely deteriorated during the year and really misses her contact with a choir and tea with friends etc. She has lost confidence to walk around town alone and has lost her independence. No longer safe to be in her own home unsupervised.
I'm 62 and gave up work in July to support my sister. As I have no income, I am spending my savings which were meant for my old age. Sorry to complain but I feel like I'm running a 24-7 B&B all alone. Neither of us married, our small family comprises cousins in their late 70s, so it's all down to me. I'm exhausted and have to watch my sister like a hawk. I get up through the night to check she's OK and has not left bathroom taps running (5 hours is the record!) My bills, especially water, are enormous. Our mum had alzheimers so I'm very clear on what the future holds... Good news: I had a bit of "me time" today when I went for my covid-19 vaccination. Lol. Luckily my sister is loving and affectionate, and we do have some laughs. She is trying a new drug and is more philosophical about her illness than me. I understand no-one can come to the house and we look forward to activities starting up again.
Colin Payne
saysDementia patients living in the community and their family carers have been suffering the psychological affects of being locked down over the winter 2020/21. Many have lost the regular supporting help of professional care workers too, adding to the stress. Fortunately my wife's mother Alice, aged 87, is at the stage in the progression of Alzheimer's were she can still function with some routine household tasks. Sometimes her food and cups of drink are a little bizarre, but it is all good therapy. She wants to feel in control of her life, so we take her supermarket shopping despite the COVID risk (we are in a rural area); we discretely return unsuitable items from her basket, and she pays with cash herself. It is the only outing possible for her now; pubs, restaurants and everything else are closed. Being shut-in over these dark wet winter months made her very depressed. She cannot express her feelings or really understand why her world has suddenly collapsed. She has lost almost all of her vocabulary and struggles to communicate. I know that she feels like a prisoner in her own home!
Pamela Stevens
saysHi Enomwey
Your Mom is so lucky to have you, and you are a special daughter with a lovely family to help care for her. I am preparing myself to have to take care of my 80 yr old husband who is currently undergoing tests. He is already extremely aggressive and at times confused. He has had blood tests now waiting for a chest xray, I am not sure what it is the chest X-ray will Confirm ?
God Bless you all. Pam xx
Gwen
saysMy husband has mixed dementia with Lewi bodies, Parkinson’s, and psychotic episodes. I was advised to have respite care because of my own cardiac problems then lockdown happened. Followed by the horrendous rate of infection in nursing homes.. We were unable to form a bubble because we are a couple. My supportive cleaner was unable to help me. I was unable to have food deliveries for 1 month. My daughter picked up some food for me but was unable to come in. Thanks to Iceland who picked us up from a vulnerable list we then had weekly deliveries.
Janet fishwick
saysMy mother is 93 and has stage 4-5 Alzheimers.. She lives on her own and has daily carers. Mother has not been out for over a year and seems totally unconcerned. She knows the word" lockdown" but little of the consequences. Such is her mental capacity, that mother will soon be in need of a Care Home due to her inability to self maintain. Mother refuses to consider this option, despite family pressure. Once lockdown is over, I am going ahead with plans to organise this and I know it will be a momentous struggle to get her to see that a Home is the safest place for her.
Terry
saysThese 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.
Susan
saysI 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.
Pamela Stevens
saysSo sorry to hear of your Struggles. My husband who is 80 has recently had a blood test, following a verbal and memory test which I think he passed, however the Dr wanted him to have a blood test, as a result of this he is now to have a chest X-ray, I don’t know if this is normal procedure but I am concerned that this is to find out if he does have dementia. Did your Mum have these tests ?
Susan
saysMum had a memory test in June 2020 and at that time the Doctor believe she was showing signs of Dementia, but said she would need to be referred to the Memory Clinic, which to date has not gone ahead, you guessed it, due to COVID problems. Things became much worse in that Mum was getting up in the night a minimum of 4 to a maximum of 9 times in the night and after our GP and Social Services became involved and it was confirmed that she needed 24 hour care, it was decided between me and my sisters we would find a home for Mum. So in October 2020 she was placed in a Care home and although not able to touch her we see her either through the window or in the pod. The people who run the home are wonderful and there has been no COVID and Mum got her jab in early January.
Antonella Pillai
saysI 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.
Danusia
saysI need to hear this as I’ve been in with my husband who has mixed dementia too and my mum whose stone deaf and 93. I end up crying nearly every day as my husband who used to be so lovely is quite obnoxious to me. He leaves a lot of mess, is chaotic and I am disabled as well. So far I’ve had no help and am feeling my health getting worse. I need him to go somewhere once a week for a break for me. His son took him for 2 hours last week for the first time but with only me virtually insisting he took him. It was difficult.
Patricia kelly
saysI 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 !
Michelle
saysHi 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.
Joe
saysI 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
Reinhild
saysHi 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.
Stella
saysYes 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.
Jess Birnie
saysHi 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