Mike is worried his wife, Angela, who has dementia, has been declining in her care home because he’s not been allowed to care for her during coronavirus. He is calling on the care home to let him visit before it’s too late.
Love at first sight
I’m from New York, which is where I first met Angela. She was taking a gap year before she started at Exeter University.
I went out one night to what we called a discotheque in those days. I was sitting at a table and Angela was sitting a little away from me. It was love at first sight. We got married two months later.
We first noticed signs that all was not well with Angela back in 2014. Her mind was so sharp, she’d remember everything, and then all of sudden she was forgetting things and saying things over and over again.
In 2015, Angela was diagnosed with Alzheimer’s disease. I’ve never come to terms with it. I probably never will.
Angela has been in a care home since March 2019. For over a year, I spent every day with her, from 9:30 in the morning to 8:30 at night. I was involved in most aspects of her care. I put her to bed every night for over a year. I would place my chair next to her bed and hold her hand until she fell asleep. That’s when I would leave.
And then of course with the outbreak of coronavirus, I’ve been separated from her ever since.
Angela can’t understand why I’m not there
I’ve gone to her every single day since the virus started. I stand in the car park and a carer brings her to a window.
‘I wave to her, blow her kisses, hoping that she won’t forget me and – most of all – that she’ll know I haven’t left her.’
Sometimes she waves to me to come in and asks the carers, ‘Why doesn’t he come up?’ She doesn’t understand. Most of the time she doesn’t even know it’s me and she’ll walk away. But I go every day. I haven’t missed a day.
She’s gone downhill so much. I know that her interaction with people is significantly down and her ability to speak and walk is suffering extensively. She is also not eating as well. There must be a time in someone’s life where quality of life outweighs longevity.
The residents can’t understand why we’re not there, why we’re not with them. The separation has been hard on me too and is making me ill. I’ve lost two stone in weight and mentally I am scared and alone.
I need to be with her
The care home has been great. They have excellent care staff. We’ve asked the care home about being able to spend quality time with our loved ones and they say they can’t allow it at present. Why? I thought government guidance would allow it.
Restaurants have opened up, people can get haircuts or go to the pub, but we can’t go into the care home to see our loved ones. I’m basically self-isolating because I live alone. I don’t go out and mix with people, I don’t go to restaurants, pubs or bars or anything like that. I am essentially still shielding.
People need to know what this lockdown is doing to people with dementia and their families. The damage that is taking place is irreparable.
I’m going to see Angela today because it’s our 55th wedding anniversary. I can’t go near her. She probably won’t recognise me. I don’t know how long I have with my wife and the inability to spend even a moment with the love of my life is a day wasted.
We have from the moment we met been in love with each other and that will never change. I must strive to be with the person I love before it’s too late.
Stand with us to support Mike and Angela
The pandemic has caused too much devastation for families affected by dementia.
As care homes look to re-open safely, or should they face a local lockdown, families must be more involved in the care of their loved one with dementia. Our recommendations to local government can make this possible.
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