Mike and Angela’s story: ‘I must be with her before it’s too late’

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.

Mike and Angela civil ceremony

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.

Mike and Angela anniversary

Mike and Angela celebrating their wedding anniversary in 2005

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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33 comments

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So sad so painful, my wife has dementia and the days are a struggle but love is a powerful weapon we Havel only been together for 30 years, my wife was a nurse and then a dissection technician helping new doctors and nurses understand the human body , now she finds it difficult to write her own name. When I was alone after marriage and many tragedies I prayed to god to send me an angel , he did , now I feel he is taking her away from me but he has given me the strength and love to look after her at. Home and as long as that strength and love is with me I will care for her, I laugh in public and cry in public. As the song says love will keep us together. D

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I'm in the same situation with my mother. I am not able to bring her home

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If it is possible Mike bring Angela home to an environment that contains all the things that you enjoyed together. I have found that there is help out there that will help you keep your wife where she belongs with you in your own home.
My wife Ann was diagnosed with Alzheimer's five years ago. Six weeks ago after a fall she went into hospital for seven days. Prior to the fall she could manage the stairs, when she came home she was hardly mobile. I converted the dining room into a bedroom and a profile bed was supplied along will a mobile commode. This helps me to care for Ann as I want to. It is very hard work and very draining but it enables me hopefully to keep her with me until we are parted forever.
Our doctor knows what I want and the support that I will need is there when I want it.
If you need a social life and have plenty of friends then forget this path. If you are like me satisfied with our home , garden and our cat Tilly then give it a try. Be prepared for lack of sleep, aching back and plenty of tears and some verbal abuse when washing, dressing, or generally doing your best for the person you love and promised " In sickness and in health"
I often say to Ann "God help us when we get to the sickness part"
We are both 75. married 51 years and unless I die first then Ann is never going into Care. This is her home where she belongs.
With the best will in the world the environment that you have, can never be replicated by strangers.
My best wishes to you both.

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This situation is cruel and heartbreaking - and, I believe, unnecessary. Care homes should have protocol in place for at least one family carer to be able to spend time with their loved one indoors. Dementia and nursing units are usually upstairs so not even window visits have been possible.

The enforced isolation caused Dad's dementia to accelerate massively. He only survived just over four months in the home. However we were allowed to be with him in his last hours even though we had no idea if he knew we were there.

I would like to see the government brought to account for their disastrous handling of this whole crisis. Like others here I can't help thinking it has suited them to lighten the social care bill.

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My mum is in a care home I have not been to see her since March, we have daily video calls but it just so I can see her as she can not speak, sometimes she will look at me but I don’t know if she recognises me and if she does is she thinking why have I not been to see her, I just hope that I can go and give her a hug before it’s too late

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I am also in the same situation as Mike, my husband Tony who I met when I was 17, I am now 67, is the love of my life, he is suffering from vascular dementia through no fault of his own and us being denied his human rights by not being able to see people that love him, how dare this government decide what is right for them, it would be better for them to take the chance if getting Covid than live their final years in misery without contact from people who love them. I cry myself to sleep every night thinking if my husband being alone without my love.

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My mum lived across the ocean over 4,000 miles away. We talked for hours over the phone twice a day. Suddenly, the conversations stopped as declined with Althimers. I traveled to be with her but my siblings prevented me for seeing her due to siblings rivalry. I returned home after hanging around for 3 months.
Few months later, my wonderful mum died. I was unable to attend her funeral due to corona lockdown and not able to say a good bye.
I became depressed, added weight on and developed a pre diabetes. I am still fighting constant nightmares. It’s awful to loose someone special and not being able to say a proper farewell.

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Bring Angela home Mike as I have done, believe me Mike it can be done with the help of social services you will never regret it. I was in the same position as yourself but after my expience with care homes and with two replacement hips and a broken wrist for my wife Christine I refused to have her sent back after release from hospital, yes it's hard work but at least you will be able to see, feel,and love her in the way you feel she should be cared for. I don't regret my decision in anyway and Ivan give Christine the love and respect she deserves.

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Even visiting once a week for 30 minutes in the garden is only a little help. Sitting 2 metres apart, wearing a mask and always having a nurse with you make what should be great joy something disappointing .my husband stays alert with phone calls, Skyping, letters from friends and relations and at least 2 letters from me together with a shelf of books , writing paper and pens, but that one visit is just not enough and us both so dissatisfied., yet as he can't stand or walk Caring at home is not possible. We so miss each other after 55 years together.

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So sad three children . five grandchildren one too young to remember grandad! Birthdays anniversaries missed ! Face time and phone calls don’t work he doesn’t know us all we want is to see him He’s safe and looked after but we are all heartbroken all we want is to hug him . Before it’s too late . Then what

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VALERIE MY WIFE OF 61 YEARS HAS BEEN IN A NURSING HOME WITH DEMENTIA SINCE 03/6/20.. I HAVE KNBOWN HER SINCE WE MET ON HOLIDAY IN LLANDUDNO,
JUNE 1956,SHE LIVED IN LEEDS I IN

MANCHESTER, WE MARRIED IN 1959.
I HAVE NOT BEEN ABLE TO SEE HER ,SINCE APART FROM FACE TIME, WE HAVE NEVER BEEN APART SINCE , APART FROM NOW.
I T BREAKS MY HEART, I HAVE NOW HAD 2 STROKES, MAY BE I WILL NEVER SEE HER AGAIN, PERHAPS UNITED IN HEAVEN

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This is just so heart breaking to read. Something needs to be done to enable families to visit loved ones in a care homes especially those with dementia who have no understanding of what is going on. It's cruel that husbands and wives can't see one another. This virus may never go away and who knows when a vaccine will be available. How many deaths are there going to be because of loneliness? Families know the risks and should be able to make the decision to see their loved ones.

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i have been experiencing the identical situation, except only being with my wife every day for 45 years. i have found the care center very understanding and helpful. however the incidence of covid 19 positive testing on the part of patients and staff has complicated the possibility of visitation because of overlapping quarantines. discussions of the benefits of family support at end of life are beginning to be understood by the responsible agencies and further discussions of benefits of research needs to be shared with them to make it a reasonable accommodation.

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I am in exactly the same situation as are thousands of us.
It is scandalous. We should be treated as essential carers and allowed into the care homes. Don’t let our situation be swept under the carpet yet again.

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I am in the same position as Mike, I have been unable to see my husband since March, we could not celebrate is birthday and have been unable to celebrate our 60th wedding anniversary. I celebrated my 80th Birthday without him and the way things are looking, due to his decline, I feel I will not be allowed to be with him when he leaves this world. I honestly feel the governments are causing problems for the elderly in the hope of getting rid of a lot of us.

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I’m in the same boat married for 61 years to watch Hello decline is worse than hell. And I cannot do anything about it

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