Real stories

Coronavirus restrictions in care homes: ‘Bit by bit, Mum is forgetting who I am’

My mum who has dementia went in to a care home just 1 day before the lock down. Whilst the family are glad that she is being looked after, she just cries when we call her and says she wants to come home. It is heartbreaking and no amount if reassurance seems to settle her. I am frustrated that I do not get any updates from the care home on her well being. And not being able to see her is horrible and upsetting for all of the family. The government have just forgotten us

My mum is in continuing care after being In Rotherham hospital for a week as my mum was admitted to accident and emergency my dad died on a ward within the same hospital my dads death was covid 19 related the hospital staff would not let me go to see my mum to tell her my dad had died because of the covid 19 situation she has now been moved into continuing healthcare and they still won’t let me visit my mum to tell her about my dad they are actually telling my mum my dad is still in hospital I’m not happy with the situation I understand about the risks of covid19 but my mum needs to be told the truth and not be lied to

I am in a similar situation to many here, my mum is in a nursing home that is locked down since early march. No contact has meant that she is beginning to withdraw and beginning to lose recognition with family members.

The lockdown is cruel for people in such a situation, and I don't see any respite from it. You can lockdown now and save lives only to cut them short in other ways as time goes by. I would rather have contact with sensible precautions.

I did not see my dad for 10 weeks. When the restrictions changed it was 1 visit per week and only two visitors. We much produce a certificate that we have been vaccinated from the flu. We must be over 16. We can only stay for 1 hour and get taken into a special room. My dad no longer recognised me or my mum. In that 10 weeks my dad no longer talks. My dad can’t see his two youngest grandchildren. We live in Australia. It broke my heart reading your story about your mum. Sending you a hug from far xx

My husband is 85 and responds only to touch, a hand squeeze or a hug. It cant be right that his nearest and dearest are not able to give him a reassuring hug or hand squeeze. Virtual contact does not work for many. There has to be a balanced approach to the depth, length of and completeness to the isolation which is keeping us apart. I understand the principles behind the totality of closing the doors of all Care Homes, but I have to question whether this complete isolation from close family is beneficial after a certain length of time. What is it doing to patients mental state? Do they feel abandoned by family. They were not prepared for this. Some way must be found to bring families together in Care situations. I sincerely hope this is in the forefront of the thinking and planning for Government, Care Homes owners, managers, Social Services, CQC , CHC, and any other organisations. There are two aspects to this, physical safety and the mental affect of separation from loved people.

My mum is 87 and has alzheimer's and vascular dementia but fortunately she is still at home with carers/PA visiting daily.
We were told by the PA at the beginning of lockdown that we were not to visit mum or enter her property and that the only people permitted were herself and her team. I work in one of the largest retirement villages in the uk and so understand fully how to use PPE effectively to keep her safe . But nevertheless I was told again that I was not allowed to visit or enter the property. Mum had now taken to sitting in her armchair watching tv for many hours a day which was not good for her at all being a previously sociable person. I then decided enough was enough and took her for a socially distanced walk around her street. I was shocked at how much her mobility and stamina had declined as a result of being housebound for several weeks. As she had previously been able to manage the 20 minute walk to the shops and then back again with the aid of a Walker. Again I was net with a wall of resistance from the carer who told me out of respect for her and her team I should not do such a thing. This was put to me in an email circulated to all of her clients families. I argued that mum should indeed move more and do more activities and so it was agreed that I could do socially distanced exercises through the kitchen window, which was a challenge as engagement was difficult to maintain. As the weeks have now gone by with each visit mum is slowly gaining some of her ability to engage and we have recently done a garden music and name that tune activity which she loved. Due to my persistence things are getting a little better as I was worried we would be putting mum into fulltime care if we were not careful.
I understand that people are afraid of the virus but my mums health and mental wellbeing is my focus. I'm not sure if the cares standpoint on this other than to keep herself virus free possibly.

Since lock down my mum's mixed dementia has deteriorated so quickly that she has had to go into a care home. I had to drop her off at the door, leave her there, she didn't understand what was happening to her or why I was leaving her, she now can't string a sentence together, which will never come back.
Dementia patients have not been treated fairly or properly and I fear I will now never get her home! I will never get over this, I am her world and she is giving up, my mum can't see well, she needs to feel me touch her, hold her, like care staff do, I am isolating so no more at risk than there staff who I can see on social media are clearly far more out there than I am!
It's all wrong. This system is cruel and I hate it.

My dear husband in care home have not seen hem for 11 weeks now an only get five minutes on phone as a carer has to help hem tied the face time but they said it was upsetting hem the other day on the phone he said to me I will never see you again will I this break my heart I cryed all day an I am still crying now please God end all this an let us see our love ones before it is to late

I am desperate to see my husband , he is currently in a nursing home care suffering from Alzheimer’s , the home has been on lockdown since before the government advised. I might had that the home has done incredibly well keeping all the residents and staff free from Covid which I am so grateful for. My worry is that he won’t remember me when we eventually are allowed visits and the longer this lockdown continues in this care home setting the harder it will be. I prey every night that I will be able to see him soon for his wellbeing as well as mine. Losing a loved one into care because of Alzheimer’s is horrible and this lockdown has made the situation worse , at least when I was able to visit him every day it was more bearable then what I have now, I hope visiting is allowed soon

Keep up your campaign Kathy & try not to get too distressed with this situation. The Care Home will eventually allow meetings with Social Distance being maintained. I know of a local place already doing this .
The Governments for many years have ignored Long term care needs, whilst spending huge amounts supporting short term requirements via NHS. This led to a huge error of judgement around Easter when thousands of patients were removed from Hospitals to make space for victims of the Virus. At Easter around half of Hospital beds in UK were empty! Tragically many were sent to Nursing Homes when infected with the virus because they had not been tested in advance of their discharge. The statistics on this may not emerge for many months, or possibly years. Around half of deaths from the virus have been in Nursing Homes. A major change in how we care for older people in UK is needed. There needs to be joined up thinking in Government with training & PPE provision etc.
I have been campaigning for the last 4 years to help people obtain NHS Continuing Healthcare Benefits. This is not easy to obtain but once granted it finances long term care needs of people either in their own home or a Nursing Home if necessary.
Please keep on campaigning & eventually things will be improved.
My website is hosted by Alzheimer's Society & can be found at
https://continuinghealthcare.wordpress.com/

Best wishes. Peter Garside