Dementia Support Line
Real stories
Mike and Angela’s story: ‘I must be with her before it’s too late’
Mike is worried for his wife, Angela, who has Alzheimer's disease. Angela has been declining in her care home because Mike has not been allowed to care for her during coronavirus. He is calling on the Government 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.
Our two sons and I 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 first-floor 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 normally. 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 can't stop thinking about her.
Mike and Angela celebrating their wedding anniversary in 2005
I need to be with her
The care home has been great. They have excellent carers and nurses.
But I’m concerned that the Government hasn’t clearly and publicly addressed suggestions that care home visits will not take place until May due to the vaccination timetable.
I want the Government to prioritise a timetable for care home visits and provide transparency on how vaccinations impact these visits, in their upcoming plans for relieving national lockdown restrictions.
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 again this afternoon from a distance as usual. 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. My two sons and their families have also been prevented from seeing her. We have always been a very close knit family.
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.
The Government must prioritise care home visits in their upcoming roadmap to ease lockdown. These visits are vital to the health and wellbeing of people affected by dementia.
Stand with Mike
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Mike's story was initially published in September 2020 and was amended in February 2021.
Elizabeth Owen,
saysEven 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.
Gail
saysSo 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
PETER WILLIAMSON
saysVALERIE 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
Anna
saysThis 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.
michael b.
saysi 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.
Cathy Picken
saysMy heart goes out to Mike and Angela, this is a dreadful situation to be in. I identify strongly as my mum is in a similar situation and it is heart breaking to see her deteriorating rapidly. Face time simply does not work for lots of people with dementia, it's too abstract, too far away from their experiences of life.
What she needs is a hug.
Is there anything we can do to make our voices heard?
It makes me want to shout it out to make people listen.
Anne
saysI 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.
Jean Campbell
saysI 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.
Hello decline is worse than hell. And I cannot do anything a
saysI’m in the same boat married for 61 years to watch Hello decline is worse than hell. And I cannot do anything about it
Linda
saysThis is so so sad we are going through the same since march we have only seen him through a three inch gap in the window crying please let me out just take me for a walk I haven't done anything long why am I locked up nothing is being done to support the mental health of our loved ones its heartbreaking
I feel your pain 💔😪
Fran♡
saysI wish I could make a proper comment im too busy crying at the moment. My mother with dementia lives with me and I'm so grateful and happy for that. My heart goes out to Mike and Angela
Alison Ruck
saysMy Partner is in a Care Home and I can see how much he has deteriorated since lockdown. He is slowly losing the will to live from the inside out. I have had two outdoor visits for 30mins sat opposite him at a table. It is so cruel for them not to have a hug or a kiss from their loved ones. The first visit I asked him if he wanted to say anything, he said “I love you”. Now a month later he doesn’t speak. I feel likeI am grieving for a loved one while he is still alive. I am on my own, I can’t sleep, constantly crying, what must they be thinking? You can go to pubs, eat out, mix with other members of your family, yet you can’t touch the one you love. The Care Home is closed to visits again due to a positive result with the virus, when will I see him again. He just had his 72nd birthday, I couldn’t visit, they put a picture of him on the web page, I broke down, it just is not right.
Margaret Smith
saysMy Mum is in a care home with severe dementia. She can no longer talk, but will smile happily when she sees family. My father who is 83 had been visiting my Mum every evening at bedtime to sit with her and hold her hand. He has poor eyesight, and has had two outdoor visits since March, but has not been allowed to get close to Mum. He is desperate to visit again as he is aware that they may not have much time left together. My mum started to lose weight as soon as the visiting was stopped. She has regained some, but has had periods of having infections. It is cruel to keep people away from those they love with dementia.
Debbie Wightman
saysPerhaps the nurses/care givers at your wife's memory unit could do a face time or zoom with you and your wife. They do that on their personal phones at the memory care here in Oregon. It has been great for my friend and her mom who is 97 to do this weekly.
SHEILA EVANS
saysWhy can't this Care Home at least allow this lovely couple to meet in the open air in the garden of the Home? I have a friend, who does not have dementia, who has to stay in a Care Home while she is recovering from an accident which has left her physically unable to go home to a 2nd floor flat after an operation on her leg. (We used to have Convalescent homes for this scenario - but that's another matter!) This Care Home specialises in dementia and the staff moved in in April to keep the residents safe. Its worked, none have (yet) developed C19, and they can meet at a distance with friends & family on the car park in front of the Home, so at least there are some more meaningful visits than merely waving through a window. What will happen as the winter sets in though? It is cruel to keep give Mike and Angela apart like this. If he was her carer for 5 years, why can't he do so now? As well as being good for them BOTH, it would free up the staff to spend more time with their other residents. It is cruel to not even allow a socially distanced assignation in the garden! Seems it might be too much 'risk' (ie trouble) for the Home to do this. Is he paying for her to be there? if so, couldn't he insist on seeing her?
Sur
saysI fully understand and have emphasis for Mike, My mother in law is in the same position as she has advanced Alzheimer’s. In June we were able to have face time with her - she knew who I was. It was her 80th Birthday. Any cards, presents or even fresh flowers had to be in their garage 72 hours before being allowed in the home.The home staff I can’t fault as they are doing a fantastic job looking after everyone, But last we had FaceTime , first time home had had chance to do this for us, she just smiled at the young lady (me ) talking to her. She was in her own ward and did not know me. It was a shock and heartbreaking. We have lost our chance to be with her whilst she still knew us. Not one staff member or resident for the home got the Virus. But we lost the last moments with mum.