If I were in a Care Home now……..

I use to like it here, but all the smiley faces have gone’…..a comment from a resident with dementia in a Care Home when everyone started wearing masks…..

Our lives are ebbing away, yet there’s so much risk aversion about visiting.  For those of us living with dementia, our memories are our most treasured possessions and we lose some every day. Imagine if you lost something of special value everyday – that’s the daily reality for those of us living with dementia. I’d give up possessions anytime if I could have some guarantee that my memories would remain intact…

So imagine having been in a Care Home and not having seen those closest to you for the last 6 months…imagine the effect dementia has on your ability to remember those closest to you?

So we’ll deteriorate, though the lack of stimulation given to us directly from loved ones who know us best….. and  so much our lives will disappear without seeing loved ones – what sort of quality of life is that when the quality of our life is already changing?

Is it really person centred care, to allow the confusion of seeing someone via a screen or behind a screen in a garden that doesn’t mean anything to the person with dementia?

Each stage related issue should be treated with individuality. Some may have coped with seeing their loved ones on zoom, outside in the garden, but sooo many others have lost that connection. Shouldn’t families be allowed to make a choice? To assess the risk themselves?

Of course not all care homes have the same rules, yet more inconsistency. Some have said, “They’re keeping their residents safe”, but safe from what? Surely you have to weigh up the risk of Covid striking the home with the risk to the residents of not physically seeing their loved ones in close proximity? Our physical lives may be long but a fragment of our mental lives disappear each day with dementia. Many Care homes appear to be afraid of being the next Care Home to have an outbreak so go into survival mode to save their reputation. But have they really thought of the effect this may have on someone in the later stages of dementia? They may be keeping them alive but you want that life? I know I wouldn’t.

I’m not putting the blame at the door of the Care Homes. With the pressure they’re under they need more consistent informed guidance. As for the carers, I can only imagine the multitude of emotions they’re going through.

Imagine sat there alone….vague recollections, sparks of memories fleeting through the ever fading brain of people visiting who make you smile……now wondering why no one visits, or worse still, forgetting that anyone ever visited…..being taken into a garden with a strange plastic screen and figures at the other side , strange figures, so you look down to avoid seeing these strange figures with strangers faces from afar….

Those closest to them know them best, how to interact, what will work, what won’t. No one with dementia can be sure what memories they’ve lost. Those around us are often our guardians of our memories. After all, how do we know what we’ve lost if we can’t remember them? It’s only when others question or relate memories to us that we question our own thoughts.

In desperation a friend of mine visited her husband who is a couple of years younger than me. It was a garden visit but they had a big perspect screen dividing them. It became so traumatic for them both when the husband started clawing at the screen as he didn’t understand why he couldn’t hold his wife’s hand and be close to her. So tragic, yet easily solved.

The care home staff are allowed to go about their lives, shopping, maybe even going to the pub, but loved ones aren’t allowed to visit without all the barriers. Yes, the care staff have done an amazing job in this period of strangeness but why can’t exceptions be made where physical touch is the only communication that works ? They could have a test and if it comes back negative, why shouldn’t they be able to visit as normal? Choice not barriers. Alternatives, solutions not one size fits all.

One lovely lady I know has stopped visiting as it was too distressing. Her husband simply didn’t understand she was there as they had no physical contact….the only thing that stimulated his memories.

We need touch, we need whatever each individual responds to for connection before that connection is lost. Imagine your loved one dying in a care home and not having been able to see them or hold their hand because ‘of the rules’………

Care Homes were  forgotten by the government at the beginning of all this strangeness and now it seems people with dementia in care homes are still being forgotten…..😢

The Dementia charities are finally working together and one of the first articles they published was around the state of Care Homes at the beginning of this pandemic. But one article won’t bring about change. Outrage at the time, yes, but soon forgotten. It needs continual hammering home that this needs to change. Look at the situation in the beginning and look at it now…..very little has changed for people with dementia in Care Homes…..

Many are simply existing. Would that be the sort of life you would wish for your loved ones? it’s not a life I would want….because it’s simply not a life…

 

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

50 thoughts on “If I were in a Care Home now……..

  1. Wendy, this really touched me because I have been saying this for a while now to all that will hear me. My sister is Asst Director of nursing in a nursing home, life care facility here in South Florida where, of course, family visits are not allowed, I forwarded this to her and asked her to help in any way she can. It’s heartbreaking.

    Liked by 1 person

  2. Wise words Wendy. We need change and we need it now. Such a sad time for people in Care Homes and their relatives; let’s hope that the powers to be read your blog and it will inspire them to improve conditions. Even the small gestures can make a big difference as you so rightly say.

    Liked by 1 person

  3. Brilliantly summed up, Wendy. My sister lives in a care home; she doesn’t have dementia, but she has had Parkinson’s disease for nearly twenty years; this has limited her physical abilities, not least mobility, and sometimes her mental abilities too. She moved into a care home following a serious illness which really set her back and she no longer had the physical ability to care for herself.

    The last time any of us in her family saw her was on her birthday in March. It’s so hard. She sometimes struggles with her mobile phone and has given up with her ipad, so keeping in touch isn’t always easy. I’m sure she is also suffering from many of the things you have described so eloquently.

    We took a group photo on her birthday, when cafes were still open and we could meet for a lunch. I treasure that photo, as I haven’t been able to see several of the others there either.

    Liked by 2 people

  4. Wendy, you are so right. Your entry today was very moving. It should be read by all those with influence. Such circumstances must be very distressing for both parties. I can’t begin to imagine how it would feel.

    Liked by 1 person

  5. What a powerful message, Wendy. I found it deeply moving – it needs to be read by people in authority. My neighbour’s husband is in exactly the situation you describe. He has advanced dementia and about seven weeks ago fell out of bed and broke his collar bone. Long story short is that he is now in a care home and the last time his wife saw him was when he was taken to hospital in the ambulance after his fall. She has not been able to visit him. He was struggling to know who she was before his fall, but she knew intuitively how to soothe him, his special ways etc. It is hard to know where he must be in his mind now, first in the hospital, then an interim care facility for a week and then into the care home where he is now, and through it all having no-one familiar coming into his works at all. Without Covid restrictions his wife would have been with him every day, aiding his recovery. It seems so cruel.

    On another note, thank you so much for your wonderful blogs. I am so sorry for not responding very much, but I so enjoy reading them. So evocative of your journey – and an inspiration to all of us. Have you ever thought of publishing all your blogs – what a wonderful treasure and resource they would be xx

    Liked by 1 person

  6. Wendy this is very true and extremely moving. I cannot imagine what families are going through at the moment. It was an absolutely awful time under ‘normal’ circumstances -goodness knows what it is like now! I hope you don’t mind but I have copied your article to our local councillor with the hope she will circulate it. More people should read your article.

    Liked by 1 person

  7. Hi Wendy, thanks so much for sharing your perspective. I worry about my family members who have been and are locked up “safely” in facilities and how much they are losing. I also worry about them contracting COVID or inadvertantly bringing in COVID to the facility when so far there hasn’t been any. I have previously been pretty hard-line about keeping people safe but I know that my friends and family with dementia have also lost potentially so much, and I don’t know the answer.

    I wish there was an answer regarding testing/symptoms/local case saturation that would help facilties decide if there was risk. Over here in Australia I believe they are (in my area) allowing families to visit within the rooms for a period of time – but our numbers here are very good. My father, however, was only allowed in my mother’s final days to visit her and we know that her decline was in part due to the lack of attention/direct care he was able to give to her while they were separated.

    I don’t know at all the answer other than that this disease is so awful and affecting everyone terribly.

    I am so proud of being a reader of yours and also that you have shared your voice on this matter and as all the other commenters have said, that your words and perspective need to be heard.

    Liked by 1 person

  8. My mother was in a care home for a year before she died, in 2019. I am so very glad that we didn’t have to go through Covid-19. It would have broken all our hearts, hers included, if we’d been unable to visit, or touch her, and if she’d been unable to understand or remember why. My thoughts are with all those experiencing this now.

    Liked by 1 person

  9. I haven’t seen my mom since March 15. Our governor here in Florida has ruled its safe to open nursing homes again. My mom didn’t always remember who I was prior to this virus. I’m hoping when I do get to see her, it won’t cause her too much distress with the distancing and masks.

    Liked by 1 person

  10. You’ve been able to express so clearly what many people feel Wendy. We are all living is very strange times & the effect is has on all mental health is immense. The one comfort friends & family had before the virus was being able to spend time with & give support to loved ones directly, having that taken away has been especially cruel & painful. I didn’t realise how being unable to see a smile or someone reaction would make me feel. I do think communication is key to showing people we have more in common than we think, especially when we feel so isolated.

    Liked by 1 person

  11. A very touching message, Wendy💕.In Germany we are able to visit our relatives since a few months.I have the possibility to see my father to different times during the day.So I must say, most if the time I see no other relatives, not even at the weekends. It seems that not having been allowed to visit the family members is getting normal and a kind of habit😑These days my father is forgetting more and more while sleeping the whole day and I’m not able to catch the loosing memories or to change the situation.It is a bad situation for all who are involved…

    Liked by 1 person

  12. Dear Wendy I feel your anxiety and distress so clearly and I agree with you we have to find a solution to being risk averse vs humanity!
    As a nurse of 40 years plus I still find it distressing to see folks with a diagnosis of dementia not given choices or when husband or wife have to be separated to provide the care and or relieved needed.
    There has to be middle ground that provides the safety some desire and the freedom others need to provide quality of life.
    Stay health and keep on advocating you are my hero.
    Ali🇨🇦

    Liked by 1 person

  13. Thank you Wendy, you have accurately described the dreadful situation too many people find themselves and their loved ones in. I know how hard my small grandchildren have found the lack of cuddles so can start to imagine the distress and confusion to those with dementia. Mental health is important too.

    Liked by 1 person

  14. Dear Wendy
    Such a thoughtful and meaningful message. I am struggling with a decision for my mother – should I leave her at home in the house she has lived for over 50 years with daily support from regular carers who know her and have provided continuity of care for 4-5 years.Or should I seek to have her admitted to a residential facility where she might be safer – she has had a number of falls. It is made more difficult by the fact that I live in USA whilst she lives in Yorkshire.
    Your thoughtful blog has helped me think things through. Thank you.

    Liked by 1 person

  15. My husband, who was diagnosed with Alzheimer’s in 2017, recently died after spending four months in an assisted living facility . It was a horrible experience, made worse by COVID 19, inflexible and often inconsistent rules, and chronic understaffing. Perhaps the worse part was hearing his private caregivers, whom we had to hire because he could not be left alone, tell us how quickly he was slipping, how he was losing his speech, and his mobility. We could NOT visit, which made no sense since his caregivers and the staff were out and about in the world; finally, three days before he died, my daughter and I were allowed to visit because according to the director, “Now his condition is critical” — words I find ludicrous and cruel. Dementiia facilities need to be reconceptualized and reimagined to become humane, successful, and happy living places, not locked prisons with lovely furniture and dining facilities.

    Liked by 1 person

  16. I just agree with all that has been said. Everybody has been scared silly from the outset and been told we must not take risks, Save the NHS etc. I wish your message could get to the people who can make a difference. Keep on repeating it Wendy, and thanks for your openness and candour, God bless x

    Liked by 1 person

  17. Close family and friends are unpaid key people – unpaid keyworkers if you like. Whatever PPE and testing makes it safe to help with personal care, can enable people to hug and hold hands. At the moment the guidance says ‘face covering at all times’, so you can’t even share tea and cake (apologies Wendy, as I know you’ve lost your taste for that).

    Instead of being treated like important partners in care, family and friends are mostly perceived as disease vectors.

    Thanks for the article Wendy..

    Liked by 1 person

  18. I agree with you – but…but…but..
    We couldn’t see my mother in law for 4 months earlier this year. A phone call or two, but not really any comfort to her. The care home didn’t set up electronic ways to connect…or even a screen in an open space to wave thru.
    Finally we could go and see her. Of course, her mental condition has worsened and there is much much less communication. But still, smiles and laughs and waves. Thankfully.
    Now we visit once a week, 15 mins on a reservation system. Allowed to sit with her. No presents. No wheelchair trips to fresh air, or even a different floor of the building.

    I wish care homes would allow physical contact.
    But…if that contact brings COVID into that community of people?
    A family member can be tested – and test negative today – and visit. But their infection is in early stages or they catch it in the shop that they stop off at on the way home f rom the care home….and then…on the next visit they hug their loved one again….

    Every time there is a phone call early morning from our care home, I fear they are going to tell us this kind of news.
    Already in my city 20 people died at a care home…at the mental hospital 1 km south of my house another 25 people are infected…and two deaths.

    So. I accept all the wonderful work the care home staff are doing. I accept the limitations.
    If COVID rates increase here we will stop going to see my mother in law…again. Sadly. But we will. She became 90 last month. I hope she can become 91 next year.

    Liked by 1 person

  19. Dear Wendy,
    This is a very well written and argued article and hits home for anyone who has a loved one living with Dementia.
    I cannot imagine a time that I could ever agree to my Mum being put in a care home andthis pandemic has Put lots of families into the situation you describe. The rules need human needs to be considered . I think you should send this article to Mr Hancock and Mr Sunak for their attention. The rules on families visiting loved ones desperately need to be tweaked!!
    Wendy – you are an amazingly eloquent advocate for others.
    Regards, Vivienne xx

    Liked by 1 person

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