Dementia Support Line
Real stories
A lack of Government support for dementia in coronavirus: David and Catriona's story
David has looked after his wife Catriona, who has dementia, for seven years. But the national coronavirus lockdown meant their network of services fell away. Here, he reflects on the impact of coronavirus on people affected by dementia.
A shocking dementia diagnosis
I thought I cried all my tears when my wife Catriona was diagnosed with dementia. I was wrong.
We were living near London in 2013. We had been married for 22 years. We had a nice life.
The diagnosis came as a complete shock. Catriona was only 58. I gave up work, we moved to Devon and I became her carer.
Her dementia advanced relatively quickly. Her long-term memory is gone and we have difficulties now with feeding and incontinence.
We dealt with all of that. This is the woman I love and I wanted to be with her always.
Catriona, a year after diagnosis
By the start of 2020, we were in a comfortable routine. We went to a weekly get-together for older people where Catriona was comfortable. We would go for walks, out for tea and cake. I paid for a carer to come every Monday. It was a life.
Then coronavirus and lockdown happened.
Lockdown: lost support and lost time
We lost all our support. Our carer had to isolate because her partner was vulnerable. The weekly get-together wasn’t allowed. The cafes had to close. Apart from our daughter, who lives nearby, our life shrank to the walls of our home.
Catriona’s speech deteriorated and she became unsteady on her feet and more anxious about going out. One time, it took me 45 minutes to get her out of the bath because she wasn’t able to use her muscles to help me. That was scary.
Then she began to waver on the stairs. And I knew that one day, I wouldn’t be there for her, and she would fall.
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Catriona in Glastonbury, in happier times
The decision to move Catriona into care
The reduction in support during the pandemic changed everything. I realised I couldn’t look after my beloved wife in the way that she needed on my own. My daughter and I agreed we needed to find a care home for her.
The search wasn’t easy. Because of coronavirus, admission processes were restrictive and few places were available. Eventually, with a slice of luck, we found somewhere.
Catriona needed to have a negative coronavirus test before she moved in. It took time to get one and wait for the results, which was unpleasant and distressing for all of us. And then, suddenly, once the test came back negative, the whole process went straight into fifth gear.
They wanted her to move in as soon as possible. We got everything together, packed, selected the calming music that my wife likes, a few photos, and made ready.
We took her to the care home and watched her walk into her new life.
That was in September 2020. I’m still completely heartbroken. The image of her walking away haunts me. I’m in tears as I write this, as I was at the time.
A lack of support for people affected by dementia during the pandemic
People keep telling me it’s for the best and I know that they’re right, but I am hurting a lot. I will visit her as much as I can, but that is very limited due to the pandemic.
With dementia, you feel that you have been saying goodbye, piece by piece, for years. But when they physically leave your life, those seven years of losses come together into one massive sense of loss. It’s so very painful.
We should have had more time together.
The pandemic stole at least an extra six months that we should have had together at home.
Looking back, the little routines were so important. The carer, the group, the cafes. I wonder how different it would have been if we’d had the support we needed at home during that time.
Please support Alzheimer’s Society’s campaign to make sure Government gives carers the support they need to look after the people they love. I don’t want anyone else to have to be separated too soon, as me and my beloved wife have been.
Stand with those who’ve been worst hit by the pandemic
The impact of coronavirus has been shattering for people affected by dementia. As restrictions ease, we’ll continue to push the Government to make a commitment of care and recovery to people affected by dementia.
Liz Hilton
saysI too am going through the same thing - my husband Mike was diagnosed at 55 but in truth had displayed signs since 50. His deterioration during covid is terrifying and I have had no help or support since diagnosis. Mike is now displaying aggression and agitation with me and our 25 year old son ( who lives with us) and our 4 year old grandson who also lives here half of the time. About 2 weeks ago we had to call the crisis team because he was trying to throw us out of the house and he was wild. Very scary and intimidating and nothing like the person he was before...long story short I am now in discussions with social services re respite care and full needs assessment which I believe will be funded for up to 6 weeks from the 'covid fund' to avoid hospital admissions. Not holding my breath tho because they have been trying to find somewhere now for a week...and no idea what will happen moving foward. Dreadful disease that takes someone piece by piece, day by day.
Mr Richard James
saysReally sorry to hear your story David. My mum and dad are in a similar place. My mum has recently been sectioned to a dementia clinic having rapidly declined since lockdown in March. I feel sorry for my mum who thinks there is nothing wrong with her but behaviour has changed. I also feel sorry for my dad who has had to watch my mum rapidly change in the last 9 months. I think he will recognise the slow fading away process. Stay strong everyone.
Emma
saysThank you so much for this very useful information. Best wishes to you Peter.
Mrs Rosalind Johnson
saysMy heart goes out to David. I have had a similar experience with my husband, except I had no support at all at home. He was taken away for assessment, when I could no longer handle his wandering and refusal to eat or wash. He was then allocated a place in a home far away. I have not seen him since last Feb as he cannot distance himself or stay still and they have asked me to stay away.
I will always remember him leaving without me in an ambulance. I felt like a traitor and still feel the pain. So David how well you spoke for us all. You are not alone. Be well and God Bless.
Karen Shaw
saysCHC benefits are almost impossible to get primarily because they classify dementia as a social care need rather than a medical need. Many people with dementia are relying on family or draining their own funds to pay for care. I agree with Peter above but I would not want anyone to think that CHC was a viable option in every case. Prepare for a ‘sorry, no’ but hope for the best.
Patricia Loake
saysDavid, I was so saddened to read this. Catriona and you have had your lives stolen by alzheimers. This is cruel. I’m sending my love to you both. Patsy Loake nee Whitter
Peter Garside
saysYou have my sympathy David these are bad times for everyone like you & Catriona . We have to come to terms with the fact that Covid-19 is going to be around for a long time even when a vaccination is discovered. The only good thing is the prospect that flu will not be so bad this winter due to face masks , sanitation, & isolation rules.
I discovered the existence of NHS Continuing Healthcare (CHC ) when nursing my late Wife Pauline in our home. This was our preferred choice dealing with her Alzheimer's Disease & other complex health issues.
Once CHC was obtained NHS provided a Personal Budget to fund all of our care needs. These benefits are tax free & do not require any means testing. No health condition should depend on peoples finances in my opinion, but care via Social Services does cost a lot of money! I launched a website to help people following my Wife's death on https://continuinghealthcare.wordpress.com/
Due to Covid-19 , & lockdown , NHS have not been assessing people until September this year. Some 25000 are waiting for CHC to help with their care needs. The backlog requires very urgent attention.
I wish you both well & hope the Nursing Home will support & allow you to meet up regularly long term. If there is cause for concern then CHC could be an option to look after your Wife at home , with the level of support to make this possible long term. If a Nursing Home is required once CHC is obtained then NHS will pay the costs not yourself, provided the overall health needs qualify.
The CHC benefits are not widely publicized unfortunately. You can find out a lot of details from Alzheimer's Society website & my site as preparation is essential to have a good prospect of success.
Best wishes. Peter Garside