Dementia Support Line
Real stories
Dad's dementia progression in the care home after coronavirus hit
Coronavirus restrictions on care homes had a huge impact on Tanya’s Dad, Alex, who was living with dementia. Tanya reflects on her Dad’s experience of the care system, and the fundraising she is doing to raise awareness.
My Dad, Alex, suddenly passed-away in July due to the awful impact that Covid is having on residents living in care homes.
Two years ago, as Dad’s dementia progressed to a level where we just couldn’t look after him at home, he moved into a care home in Farnham.
He was ticking along nicely with his routine where either my Mum, me, or our lovely friend Sharon, would visit him every day. We used to take him out for walks to feed the ducks in the park or do puzzles and this was his daily routine throughout his time there. It meant he was able to lead a reasonably happy life - until Covid hit and restrictions were enforced.
These blanket restrictions meant that we couldn’t visit Dad and his life turned upside down.
Dad couldn’t understand why we weren’t visiting him and why he couldn’t go out (his window looked out onto a path where he saw everyone doing their daily exercise). He was incredibly confused and anxious, and this made his dementia worse, which led to him leaving the home several times. Each time, the police were involved, and I know this scared Dad so he started to become aggressive.
We did everything we could to help him.
I tried visiting via the window, but he didn’t understand why he couldn’t come out - I was able to sit with him outside, two metres apart, but with his poor hearing he couldn’t hear me, so he got frustrated.
Changes in Dad
Dad’s mental health was at an all-time low, which was exacerbated by a severe lack of vitamin D as he was refusing to eat. I pushed to get him assessed by his doctor and a psychiatrist.
Instead of a doctor, a community nurse was sent, and the doctor prescribed him a sedative over the phone. We felt this was a lot to give him in one go, especially on top of his other medication, but we went with it.
The community nurse said that she could see that Dad was very anxious and sad, and that he should not be moved from the home if at all possible.
A few days later, I was able to get a Mental Health Assessment, via WhatsApp, for Dad. I kept saying that he would need to be seen face-to-face, but this was the only way it could be done.
Dad didn’t understand (his hearing was very poor and his verbal communication was severely impaired, which meant he couldn’t find his words) and being on a sedative made him very sleepy and dazed, so he didn’t respond to the screen assessment.
Again, I pushed and pushed to get more input and the psychiatrist said that she would contact me in a week to see how Dad was after starting his medication.
After this assessment, the home let me spend the whole morning with Dad and then Sharon spent all afternoon with him - he was so much brighter with our input. I said to the home that although I was hunting high and low for a new home, that I really didn’t want to move him and that I was willing to pay for a full-time, one-to-one carer to be with him.
The home wasn’t able to do this as it was too hard to find someone. However, we hoped that with his medication and vitamin D (along with our input and bringing in food that I knew he liked, to encourage him to eat) that he would start to improve and feel more settled. We were happy to do whatever it took.
Dad’s dementia progression
The day after his assessment, Dad took himself out for a walk and this was the beginning of the end. The paramedics and police were called, so I went zooming over and found him in the nearby park, quietly sitting on a bench, surrounded by carers, paramedics and the police - it was a very sad moment. I encouraged him to wander back to the home for a coffee.
Once there, we saw an ambulance and the home advised me that if I wanted to get a full Mental Health Assessment for Dad, then I should go to hospital with him as this was the only way it was going to happen. So, we went.
When he was in hospital, I went in every day to be with him. Again, it was a stressful experience, but on his last day, when I got him transferred to his new home, I felt we were on the road to better things. I’d researched and visited so many homes, but due to Dad’s ‘aggression’ some of them were unsure whether they could accept him - this was so sad, because Dad had never been aggressive before and it was purely out of fear. However, I found a home that I felt would be the right match for him and they accepted him.
The problem with the homes I was talking to, was the lack of visiting rights and this really worried me, but I was cornered as they were all the same. I had to make the best decision I could, in the situation we were in. I felt I had done this, however, once he was moved, he died 12 days later.
Looking to the future
Before Covid-19, Dad was ticking along nicely. He was a very clever man and sadly, he was aware of what was going on with his brain - this makes it all worse, because I know he was really suffering and his mental health was being ‘smoothed over’ with drugs.
It just makes me so sad and I wish we could have looked after him at home, but it was just too much and we were doing the best that we could in partnership with his first home.
I’ve just completed the Step Up for Dementia challenge to raise money for Alzheimer’s Society in memory of Dad. I did 850,000 steps in two months - so that’s 14,000 steps a day! I’ve raised £3,400 in donations! I initially thought I would raise about £500, but I’ve been overwhelmed with everyone’s generosity. I’ve received several donations from people I don’t know - they’ve seen me out walking and read my post on the village Facebook page.
I’ve been blown away by the amount of support.
Dad’s story has touched so many people and they really want to help make the changes that are so badly needed for people with dementia.
Stand with those worst hit by the pandemic
Following coronavirus, we will continue to push the Government to make a commitment of care and recovery to people affected by dementia.
Clare forrest
saysI’m so sorry for your loss ,my dad is in hospital ,3 days now , has Covid and has dementia,seen him once this year ,as couldn’t see him I’m devastated , I feel robbed of my dad , I’m so sorry to hear you r story
Anonymous
saysHi Clare,
We're sorry you're going through such a devastating time. Please call our Dementia Connect support line on 0333 150 3456 if you need any emotional support. Our dementia advisers are here to listen when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with other people who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/
We hope this is helpful, Clare. Please remember you are not alone.
Alzheimer's Society blog team
Michelle McGowan
saysSo sorry to hear of your Dad passing and what you had to go through. I really feel for you. I last saw my Dad in February as I was shielding in the first lockdown so couldn't see him till lockdown ended and by July it was the only thing on mind so was heartbroken when in died in July in hospital which was against his end of life care and they wouldn't even let Mum be with him at the end! He died with 2 nurses holding his hand but it's just not right that Mum couldn't be with him at the end after 54 years together. I don't think she will ever get over that because I'm struggling with the fact I never saw him again after the visit in February. It was unfair and I'm lost for words really how I feel about it but just wanted to let you know your'e not alonexxx
Maria Tuckett
saysMy mom has dementia was hospitalized. The hospital wanted to place her in hospice. I asked if they would make her drink and eat as she no longer wants to go this on her own. They said no, they can’t force her. Mom came home with me and even though I have a disabled child to vare for too for me this was best. I know she’d be dead by now had she been placed in hospice. We wouldn’t be able to visit either due to Covid. She is now getting better everyday. Slowly regaining her ability to walk and go to the bathroom on her own.
Isobel Duffy
saysPhysical contact is a must for families with a dementia sufferer. It is heartbreaking all round that physical contact is forbidden. Negative results from regular testing should be taken into consideration when physical contact is a means of showing love and concern for sufferers from dementia. A hug speaks wonders.
Lynne Timmins
saysMy heart goes out to you Tanya. My Mum is in a Care home suffering with Dementia and although I visit her regularly through her window it is not the same. Since lock down she has lost the ability to walk because I haven't been able to help her and encourage her. (She was also admitted to hospital during May and for the first time I couldn't be with her .It was awful!) I work full time and have always had my Mum every Sunday, I know that this is not possible now as I cannot handle her alone. She lives for the Sunday visits. Her mental health has suffered dreadfully and she has no quality of life now. I do speak to her daily but even using the phone is difficult and frustrating, she is very tearful and anxious. She has daily night mares, always involving me and being separated form her. These night mares she remembers too ! Isn't this a cruel disease. Mum says she would rather risk Covid-19 and seeing her family than live longer as she is at the moment. It is so very sad. Businesses, Shops Schools have all made adjustment for Covid-19 and of course ourselves but not Care homes, Why? They must act soon.
Jo Edwards
saysHeartbreaking story of the devastating impact that Covid has had on the Care system, relatives and dementia sufferers. I totally empathize with Tanya’s struggle and the loss of her Dad. Well done for raising awareness and such a large sum of money towards this great cause
joanna thomas
saysthis story is so sad my late husband had dementia died 12 years ago but this was pre covid we must keep signing petitions for relatives to be allowed to assist in there care your story has reminded me of folks now who alone and on full shieiding and need to chat etc its a human need to have contact my heart goes out to you
Helen Hayes
saysThese stories are heartbreaking. My dad too had dementia and we tried everything like Alex to keep him at home but it was having an effect on my mums health and we too had to find a home. My dad passed away in March sadly but I think he chose his time well as I cannot think how hard it is for families to cope with the covid situation. It doesn’t just affect the residents of care homes it’s the heartbreaking effect it must have to their loved ones. We like Alex played an active and important part in dads care till the end, even sleeping over in his room for his last couple of weeks until he sadly passed so I can’t imagine how terrible it was not even to feed him and hold his hand to comfort and reassure.
Dementia is very difficult to watch and you need to keep hold of the person that they were before dementia as quite often as Alex says it is only fear that makes them aggressive quite often. They need continuity and kindness but often there isn’t the time for this from the caregivers working in the homes as they are pulled in too many directions. We had amazing carers but it was always a struggle with management to get continuity which dad needed. These people need voices through their families and friends to try to make the important things happen as they deserve to have their wishes spoken for when they are no longer able to voice them. My heart goes out to all of you living in this life of covid with a dementia resident in care or at home
Anne
saysYes it is a tragedy and a scandal. We are all paying the price for the disaster last March when patients were moved from hospitals to care homes without being tested. Which led to 40 per cent of all Covid deaths being in care homes. Now the care homes are terrified even though many still accept patients from hospital. So they exclude the safest members of the population, elderly people like us who self isolate mainly and are not a threat. They call this limiting the footfall and thus preventing infection.But since allowing us to visit does not contribute to the national economy or free up anyone to return to work, we are dispensable.
I had a visit to my husband in a pod and it was broadcast and filmed. He has dementia. He would not go near the membrane, even though I sang Take my Hand, and I did not get the kiss or touch they promised. The pods are of limited usefulness and we must continue to ask for key worker status.
E Howie
saysHeartbreaking situation, so very sorry and sad to hear.
Imagine the anxieties and isolation arising from this time for vulnerable people, and especially when separated from their family/friends, is v hard to bear on both sides, and clearly does affect mental and physical health.
Increasingly hearing about this.
What can be done? Public money is ltd. and the voluntary sector could not do this alone. As increasing numbers of people are living longer, this should be a priority for government with local authorities, in order to plan effectively to support this increasing sector of our society and their families.
Tania
saysSo sorry to hear of your dads passing. You are a fantastic daughter and sound like you did so much for your dad - he will have known he was so loved. Sending a massive hug- I care for my dad so I understand xx
Elizabeth Owen,
saysMy husband cannot walk, but like Alex he is very clever. He reads a lot, but says he feels so lonely and sometimes he cuts short a phone call because he is going to cry. Our last meeting was 1st of October but like Alex we couldn’t hear each other because of the masks, we were 2 metres apart, but both deaf. We had a chaperone so couldn’t say the things we really wanted to say . I imagine Boris doesn’t have these restrictions with his new baby son. Doesn’t anyone have any imagination?
Chris
saysSince this 2nd lockdown my Husband has really deteriorated. Drifts in and out of recognising me, says he wants to into a home cos Chris has gone away and left him. Talking about your Dad has really helped with a greater understanding, thank you