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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45 comments

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I cannot begin to imagine the pain for Mike and Angela and everyone facing similar situations at this difficult time. My own loving Mum passed away in 2016 and was diagnosed with Alzheimer’s a year earlier. It was hard enough to witness even in those ‘normal’ times but thank God we just managed to keep her at home until the end with the fabulous help of my Sister and local home services. So.i dread to think what families are going through now in these Covid-19 times. All sympathies to everyone.

Despite the somewhat understandable ‘protections’ for care homes that have been put in place it is simply untenable for such situations as described to continue. Something must be done.
Much love to everyone involved and well done to the Alzheimer’s Society for pushing the cause.

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My heart breaks at these sad stories. My dad is in a care home and doesn't understand why I went from visiting him 6 ties a week to 0.
I too have noticed his mental and physical decline. The staff are wonderful, but time with him is precious. I am now hoping to bring him home to live out his days with family. As Mike rightly says: "There must be a time in someone’s life where quality of life outweighs longevity." Sending love and strength to all those families going through this nightmare x

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My husband and I have talked several times about the appalling way loved ones in Care Homes are being denied the presence of visits from their family, especially their partners.
It is horrific to go through the years of having a loved one in a care home - my beloved mother was in one for several years and at the beginning of the last year of her life she no longer knew who I was. Unless you have experienced this, and all that currently people are suffering due to the constraints (wrongly I believe) of Covid19, it is not possible to truly understand the grief. Things have to be changed.
Better that a loved one has a shorter end to life caused by possible infection due to being visited by their loved ones, than to die thinking they are not loved any more.

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After 2+ weeks in hospital after a fall and then infection my husband who has vascular dementia has not recovered the limited mobility he had before hospitalisation. He is now hone and bed bound at present. The help from our Carers and NHS services ie GP, OT DNs and Physio staff is excellent without exception.
I too, will do everything in my power to continue to care for my husband at home where he knows best. The thought of him being in care and isolated from myself and family is unbearable. I cannot understand why with careful measures in place at a care home and PPE why a partner cannot be with their loved one in their own room. It is time this cruel separation ends. I am my husband’s advocate. I will speak up for what is best for him as long as I am able. Care at home is possible after all community hospitals have been closed and we were assured at the consultation process that care in the community would follow. If that is what is best for your situation then explore and drive that happening.

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My family have known Angela and Mike for many years and we hope that Mike can visit Angela very soon. We love them both very much. Dave Val and family. Xxx❤️💙

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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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So many of these stories echo my own heartache I am so frightened my Charles will not remember me I used to take him out everyday he can’t understand why I can’t come and sometimes cries for me the care staff are suffering too as they try to manage distressed residents and families it is cruel and in humane the toll on mental health. Cannot. be measured I would rather die of corona than a rotting heart and spirit we need to get the media to give relentless exposure to the plight please please I beg of you help before its too late For those of us who are left .
We owe it to those who have gone to fight the corner and hope you rest in peace
GODS BLESSING TO YOU ALL. LEA CRAGGS

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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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Hello Malcolm,

Thank you for your comment. Would you be happy to speak with someone from Alzheimer’s Society about bringing Ann home? We are really interested in hearing more.

By talking about what you’ve been going through, you can help us tell powerful stories to ensure dementia remains a public and political health priority, both during this pandemic and beyond.

If you are happy to do so, please email [email protected] or simply reply ‘yes’ to this comment and we can message you directly with the email address you previously provided.

Thank you,
Alzheimer’s Society blog team

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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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Daily you are very lucky home not called me for wees now just not fair it is killing me,and no one cares 😵

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Hi Sue
I am in the same situation as you. My Mum went into a care home after a fall and hip repair in April. I tried the video calls to start with but she was so aggressive pointing her finger at me as she thought I had put her there that I now just have to phone instead as it upset me too much.
I did manage to see her through a door just over a week ago, but she was really nasty, waved me away and said i could come back anytime. I know its the Dementia but its very hard.
I am sure there must be lots of us in our position and it helps a little knowing we are not the only ones going through it. It would be good to talk to others in the same boat though.
Wishing you all the best in your situation.

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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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Hello Ronald,

Thank you for your comment. Would you be happy to speak with someone from Alzheimer’s Society about bringing Christine home? We are really interested in hearing more.

By talking about what you’ve been going through, you can help us tell powerful stories to ensure dementia remains a public and political health priority, both during this pandemic and after.

If you are happy to do so, please email [email protected] or simply reply ‘yes’ to this comment and we can message you directly with the email address you previously provided.

Thank you,
Alzheimer’s Society blog team

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Hello, your story has given me inspiration. My dad is 96, has dementia and is living in a care home. The staff are wonderful, but our not being able to see Dad is having a huge impact on HIS health and wellbeing. He doesn't understand about the virus and wonders why we never visit. With each passing day the way ahead is becoming clearer to me - to have him live here with me. I know it will be hard, but I want Dad to have quality of life before it's too late. I know it's a huge responsibility, but take courage from your story. I hope it can be arranged quickly. Any advice gratefully received. Wishing you and your wife love and strength.

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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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