Real stories

Rebecca’s story: ‘I need to have some proper contact with my dad in his care home’

I'm in the same position as rebbeca not been able to go into my mothers room my mam gets frightened when she is out of her room I know if I was allowed in her room she would be a different person and I could do things for her as I did before covid started please help

My Dad died in a care home 2 weeks ago. At the beginning of March 2020 my Dad suffered a huge stroke and was in hospital when lockdown began. He could not sit up , had difficulty swallowing and although he kept asking to go to the toilet was classed as double incontinent. My dad contracted covid in hospital but survived it and was then placed in a care home. We had no say in what happened to my dad and were not allowed to see him. I brought my dad a tablet that we had to rely on care home staff to answer for him. (not regular) We watched my dad lose nearly 5 stone in weight. We had a handful of visits behind the screen , my dad continually complained of pain hunger and thirst. The staff didnt listen. My Dad eventually died of sepsis brought on by a urine infection. We had told both the care staff and the GP that something was wrong ( We had seen more of a decline during the video calls) . We were allowed to visit on the last 3 days of life. My dad was a skeleton. He was so weak but would not let go the grip on my hand. I feel so guilty for not being there and his face during those last hours will haunt me forever

I too am fighting a battle, I'm trying to get my dad out of a nursing home but its a struggle. I've got social worker involved which proved of no use what's so ever, I've got solicitor involved and he wants answers from both nursing home manager and social worker, its got so bad now that the manager has stopped my dad using his phone to call me. Im seeking advice.

My Mum has alzheimers.
For 4 years after my Dad died my role as daughter expanded to being her carer. Cooking, cleaning, gardening, shopping and seeing to her every need, steadily increased to 4 times a day, often night's as well as her Alzheimer's got worse.
I had to give up my job, as I had too many plates spinning with having 3 children as well.
We were just left to get on with it. I was no expert, and it was a steep learning curve. Every time I felt i'd got the measure of Mums latest issues, she'd go onto the next phase of her disease.
When ever I tried to access help for us, the first questions would be, 'has she got savings, does she own a house,' which strangely seemed to prevent anyone from being able to help.
It took me a while to work out that if you get cancer nhs will help you but not if your brain starts to malfunction from dementia?
Finally I had to admit I could no longer cope, and despite knowing it was the thing that she did not want to happen most, I moved her into a care home.
For every minute, of every day, for all of these years I've done my absolute best for her, sacrificing a lot and living and breathing all things Mum. A dependence and bond similar to that of a toddler.
Covid happened and suddenly I became nobody important? Carehome-front door shut. Ok for professionals to cut toenails and do her hair, paid carers, that don't know her past allowed in, but not me?
Mum is declining fast. Time is something she hasn't got, Her prescribed medicine should include me being part of her care, singing her favourite songs with her; reminiscing about trips to the beach; swim teaching; xmas's past; family holidays; her new great grand child taking his first steps who she met once soon after being born and never seen since; but most importantly of all, giving her a sense of being loved, not forgotten.
Enough separation and heart ache. Dementia sufferers have suffered enough. This isn't the Victorian sanitorium era of lock them up and chuck away the key, out of sight out of mind as it were? Safety yes, but at what cost.
Where required, a nominated family carer, needs to be recognised as a vital part of a dementia suffers care, and allowed access in the same way a member of staff would be, with all the same precautions necessary to keep themselves and others safe.
I don't profess to have all the answers. I respect care homes and staff are doing there best. I just know that this feels far from right and that change is needed now, and into the future. So this horrifying 6 year journey our family has been on, is made an easier experience for the next person, and their family, that gets diagnosed.
p.s. Our family home has been sold and is now paying for her care although I'm not sure she'd agree it was money being well spent right now in this latest lockdown.
p.p.s. Thanks to the Alzheimer's charity that gives a voice to ordinary people like me, that don't like to make a fuss, but do have opinions that need to be heard. My fingers are crossed that one day the powers that be will listen.

Reading Rebeccas story reminded me
I am not alone : there are so many families with dementia relatives that are suffering in silence, my husband went into a Dementia/ Nursing home in may 2020 His dementia deteriorated from January along with giving him 4 injections a day for his diabetes and sleepless nights I had to make the worse decision of my life to put him in a care home naively thinking it would be short term and I could visit him regularly
Now it’s been 10 months of guilt and heartbreak not being with him to even hold his hand and reassure and comfort him only visits through a screen with months of none when the home goes into shut down
He has deteriorated so much and is barely recognisable he has gone from walking and always smiling with a cheeky grin when he’s been up to mischief, to a quiet almost lost soul, unable to walk through muscle waste and loss of weight he survived the coronavirus which did claim a lot in the home and my heart goes out to those families but surely someone should be there to stand up for their rights as a human being and end this humiliating and heartbreaking situation
Please please someone out there speak for them 😢

I am sad to hear so many of your stories.. My sister and I had to put our dear 92 year old Mum into a Care Home early January this year after she had a fall last October which has worsened her Dementia...She survived catching Covid in Hospital too...However We fully understand the need to restrict visiting currently both for her well being and ours and the Home has been fantastic in keeping in touch and we are able to talk to mum on facetime or by phone as are her sisters and brothers..
Many activities are still going on there and I know she is not at all stressed as always happy when we see her...It would appear that we are the lucky ones as the degree of Mums dementia means us not visiting has not affected her and my sister and I appreciate that the Mum we knew and still love so dearly has gone from us but is still enjoying her new life and all that it offers...Our Dad died December 2019 after a fall and also had Alzheimers and it was heartbreaking to see him deteriorating as he did at Home but we were lucky to have had him till the age of 94...we do feel that families must appreciate Care Homes are working under extremely difficult circumstances and have certain Local Authority /Government rules they are obliged to follow...It will only create more stress for the families if they continue to pursue avenues to which at the moment there are no answers...Your loved ones would not want this I am sure..Please be patient..

Rebecca’s letter could have been written by me substituting her father’s name for my darling wife Maureen’s name. There are no words to explain the angst and sadness that I am experiencing and no doubt Maureen is experiencing also. The time has come when a form of normal visiting must be put in place ... this virus is not going to disappear overnight and some bold decisions must be made.

The home that my dad has been in, has had money spent, to build a room, so that we could visit him and chat to him via a microphone, it was completely sealed, exit through a outside door, thus having no contact in any way, with my dad or any other person, in the home, but still not allowed to visit, what a waste of money, which also took about 5 months to make suitable, he doesn't come out of his room much, cannot watch TV, as cannot use the TV remote. So virtually just sits in his chair all day.
Why can't we visit?

What price safety ?? As a nation, in years to come we will hang our heads in shame for the way we’ve treated our elderly .

My father was in a care home at the beginning of lockdown he was in hospital having had a stroke, when he went back into the home he was in nursing care on a different floor. We were not allowed to visit and even at the end we were told we could not see him, my dad was terrified of dying alone. He did die alone I think it is heartless and cruel I would have done anything one any PPE to be able to have seen him and stay with him for those last moments.

We ,are going through the same,no one is listening,we are forgotten.I wit tness tears everyday,not just my own ,90 year olds never been separated in their lives,having to be put on antidepressants they can not cope .This is not living it is hell watching your loved ones fade away ,never being able to give them comfort.

This is the same story as my mums, I feel we all need some contact, it's physically painful for us so what my mum is feeling is beyound

I work in a care home and we so hard to keep covid out we change our clothes when we get into work and change them again when we leave, I have spent a small fortune on scrubs for this. I literally sweat in autumn with all my ppe on but it is worth it to keep covid out, You wouldn't believe the poor education the community have on ppe not wearing a mask properly for example and it only takes one person to bring it into the home and then every resident will have to self isolate and I have cared for people with covid on end of life it is not a nice death. I think staff would have a nervous breakdown if covid got into the home again it is heart breaking to see a resident due in pain.

I work with residents living with dementia.
This is a very difficult time for families.
The residents safety is our upmost concern at this time, but believe me when I say this breaks my heart for my residents and their families.
All we can do is continue each day ensuring our residents are cared for to the best of our ability with safety at all times.
Engage our residents in regular activity reminding the residents each day by showing photographs etc. I believe for most video call etc is not good for most of my residents as they are confused and can make them agitated which is not good for their wellbeing. We keep families updated daily by telephone. Let's hope visits can commence soon 🙏

My mum passed away just over 2 weeks ago. She was in a care home for the past 3 years but during lockdown she deteriorated and had 3 falls, before this she was very active always dancing helping with the washing etc. Then it all changed she fractured her wrist after one fall and was sent to hospital where she has a cast fitted then sent back to the care home on a stretcher so clearly unable to walk was sent back via ambulance the next day as the care home could not take proper care of her in a condition where she couldn’t walk. She was in Aintree hospital for over 5 weeks on a ward (25) where she was clearly neglected she lost over a stone in weight became doubly incontinent probably because she was unable to walk or communicate at this point through no stimulation and neglect she had no TV no one to come and visit. To rely on a normal hospital ward who don’t really understand dementia is not ok! My mum kept getting urine infections and was moved around very confusing for her. She finally left Fazakerley hospital to go to end of life care in a nursing home which the council chose as with Covid we didn’t have a choice. My mother was dirty her clothes were dirty she had sticky stuff in her neck where something had spilled. Her teeth were caked in food all gone grey looked disgusting she looked like she had come from a concentration camp not a hospital. Afterr 5 days she had to go back to have her cast removed at the hospital and they found her fracture had been a break and it had been set wrong. Nothing was done as she passed away the following week. It has been so traumatic for us as a family I can’t even imagine what my lovely poor mum had been through and we feel so guilty.