It takes courage to tell others you have been turned inside out.
It takes nerve.
Perhaps even more so to discuss such topics
Live on air
Via a perverse digital medium.
That is what happened on Thursday.
Each of whom have or had partners affected not just by early onset dementia, that is, sometimes called working age, as it affects those who are younger than 65, they also have had to endure Covid.
Covid has been awful for all of us; some more than others.
I have often thought, it likely to be worst for those who are living on the fringes, those who are just about coping, who this time last year were worrying perhaps about the outcome of their job prospects, the results of cancer treatment, financial instability.
For all these people, Covid has taken a difficult time, a painful situation and made it worse.
Living with someone who has dementia, particularly when it happens before its time – for, we mostly expect this to be a condition of older people, not a surprise guest as you approach retirement or just as your kids leave home and you are considering a bit of ‘us time’, is very hard.
I have heard the stories.
The attempts to reach a diagnosis – years can pass with the spouse knowing that there is something very wrong, yet doctors and psychologists reassuring that it is only depression, or anxiety, or life; the encounters with friends or family who presume that John or Jack or James have just become moody or surly and this their choice and those, who later learn the facts who can’t face the silences, who are uncomfortable, who keep their distance – with a bizarre irony being that dementia is not something you can catch, yet with Covid, the opposite seems to bring people together, or at least a desire to flout the common sense.
In this talk, which was part of our regular Conversations about Covid, an idea we had a few months ago, to bring people together to talk about the ways in which Covid has affected those living with or affected by dementia during the pandemic, three women presented; they talked about their experiences supporting their husbands.
And to be honest, the person who most affected me, Linda, and here I am using her real name as she is ‘public’ and has her own blog, which you can find here, discussed the let’s call it for what it is, torment of her husband living with dementia during Covid.
Dementia, as I have discussed before can be and for much of the condition is awful; it robs an individual of their identity, personality, memories, it defeats their future, distorts relationships and moods.
For most although not all this doesn’t happen all at once, there is often a gradual creep, an erosion over time, months and sometimes years, to the extent that it is often unnoticed by those closest to that individual.
Yet, it marches onward, it chips away at the person.
In the past 20 odd years there has been very little progress at finding any meaningful treatment for dementia; the handful of drugs available often pay lip-service to the decline, perhaps adding a few months of independent living to those fortunate enough to respond; perhaps a ray of light might be the progress that has taken place globally to find a vaccine for Covid which was initially suggested would take a decade, might cross-over to dementia research; possibly not.
There is therefore little you can do to stop the decline, that is, in the form of pills; you can do lots beyond healthcare to maintain a person – ensuring regular and meaningful social contact, work with music and art, reminiscence, physical activity, nutrition, humour, touch.
Covid has made much of this difficult.
Parents and grandparents locked away from their families.
For those others, the unaffected let’s call them, the majority, they can cope with six or even 12 months separation; the children might have grown, things happened and so on, yet in this time mostly little will have changed. They keep in touch on the phone or FaceTime or whatever; their time is perceived as infinite.
Yet, when living with a life-limiting condition, one which results in daily, often imperceptible decline, those days and weeks are something.
When phones and video don’t necessarily fill the gap, or, because of the dementia or the additional burdens of hearing or visual impairment make them impossible to use, the separation becomes impossible.
Years ago, on my old ward in Doncaster, I remember putting on the wall a sign that reminded staff to talk with patients, not just transact, but chat, converse, as this was and is one of the most effective means of maintaining wellbeing – likely not just in dementia, in humanity in general; showing or taking the time and interest in another conveys a message that can be transcendent.
Covid has squashed that.
I have reached this point in the narrative and not mentioned care homes, as it is these establishments that have been both used as political ping-pong balls, battered by accusation and recrimination, affected by lack of support, inadequate training, PPE and all the rest, where outbreaks of Covid, particularly the first time, although on this wave also where they have been held-up and challenged.
You see, if you attack anyone or anything, a person, an organisation or an establishment, they adopt a defensive position (if they can’t run away or fight, which care homes cannot do), and this is what has happened.
Families have been locked out of the homes.
First, we accepted the perversion of ‘window’ or drive-by visits, then with the lockdown even these were stopped.
Families, that is, husbands, wives, sons and daughters have been forcibly separated because of government decree.
A basic human right – the right to family life has been bolloxed.
I know care home residents who have been cut-off from their families, where prior to the pandemic every day, Sadie or Joe or Frank would have their husbands or sons or daughters visiting them, this ended back in March.
And I have witnessed the decline.
I have been there; first on video myself and now, thanks to regular Covid screens in person, weekly. I have witnessed the fading, I have seen the bruises, the thinning skin, the misting of person and personality that is associated with losing connection with your roots, with your family, with, and not to be melodramatic, your heart.
For those ‘lucky’ enough, and, I say this with irony, to have their loved ones recognised to be dying, for most, that is in the last months, weeks or days or life, the restrictions are lifted, and visits are allowed.
For most this is not the reality; their death or their deterioration is imperceptible.
More than the torment of now, I personally dread the return of relatives, whenever the vaccine or the testing works, for they will see people diminished by the attempts of professional carers and nurses to maintain residents.
Those who reside.
There may be affection, even love through a formal lens, yet the hand holding, the eye contact, the shared experiences are absent.
The conversation, perhaps the repeated talks about summer holidays or peculiar life events are absent, and with absence, the neurones fade, the person disconnects from the past and they are left, eating, drinking, sure, but the shell becomes more substantial than the essence.
And it was in the conversation we had on Thursday where again I heard about the family lockouts from care homes, the pointless restrictions, which sound awfully like petty cruelties.
If a care home manager opts to deny a resident a medically prescribed treatment – aspirin for example, all hell of social care safeguarding will befall them, yet, deny access to their wife’s touch and that is approved.
We, and, that is me, and you, have allowed this dehumanisation.
We have immersed ourselves in Netflix when this catastrophe has been unfolding.
In the summer there were protests in support of Black Lives Matter which I applauded; in the autumn there is no one shouting that, well, Lives Matter.
We look at the statistics which tick-off the numbers of people dying from Covid; daily I receive to my inbox the numbers occupying hospital beds, the rate or infection and so on; yet, underneath all of this are the silent sufferers – a term I don’t use lightly, particularly in the world of dementia, yet, that is what we have induced.
Listening to the women, discuss their experiences, their pain, the disconnection from their husbands, I felt more than anything a sense of shame on me and probably others.
You see, a week or two, even a month without aspirin will likely make no difference to an individual; as I have discussed before, there are many people living in the UK who are taking actively harmful medicines, drug holidays for them would likely be beneficial; remove loving human relationships for a day or a week and the consequences are catastrophic.
And, did you know, for all those who have been in hospital during Covid, those who have dementia, despite the risk to life and limb of hospitalisation, ironically, families have been allowed to visit during that time?
A fortnight in hospital and you get visiting rights; back home, to the home, to the place of care and these cease. And worse, after a period in hospital and their return to the home the isolation begins. They must remain for 14 days locked in their rooms. Quarantine this is called; not the Italian 40 days, but enough and proportionately longer for someone in their last year of life to minimise the risk of spread to others.
Take a person, they needn’t be that old, given them a life limiting illness, years before their time, separate them from the people they depend on most for their sense of self and wellbeing, lock them in solitary confinement for a fortnight.
It sounds like a dystopia. It sounds like a crap film that you couldn’t watch on Netflix. It is playing out however down the road in a care home near you.
What should we do?
Who wants to do something?
Our Conversation was supported by TiDE – Together in Dementia Everyday – a National Charity supporting those living with or affected by dementia;