Dementia the disease that discriminates

Let me set the scene…

You were diagnosed with early onset alzheimers at the age of 56 and have had to fight for everything since then (that’s not including the fight for a diagnosis as apparently you were too young for Dementia)

You were removed from your family home by local authorities, despite your family being your main carers, as again you were too young to get proper full time support.

Now you are in a care home against your wishes, unable to speak, unable to communicate electronically with your family who have been locked out for 14months and counting. You have lost all ability to do anything for yourself and even the ability to enjoy the basics like watching your favourite television programme. You spend most of your days laying in bed wondering where your family is who used to visit EVERY day.

No-one knows how you feel but plenty speak for you saying you are “OK”

You survive Covid after but only after your family and the care home insists the ambulance take you to hospital after a second attempt, as at that time in the pandemic (April 2020) “experts” somewhere deemed your life not worth saving and there was almost a blanket ban on people like yourself going to hospital for treatment just because you live in a care home, which again you did not choose.

You lay in hospital with no familiar faces and no way of communicating despite being vulnerable due to your ever deteriorating Dementia.

You return to your care home, a closed institution, as let’s face it is no longer your home and you begin to wonder when you will see your family or bare minimum your husband again.

Your family knows little about how you have changed the past 14 months as you no longer have the capacity to let them know yourself, but this is deemed acceptable as you know we’re keeping you safe from Covid….oh wait that didn’t go to plan.

You have now survived Covid and had your two vaccines yet your family are still kept at a distance all the while Dementia - a neurodegenerative brain disease with no cure works away at you each day.

No-one likes to admit it or say it but you are dying each day because of this.

What kind of life is this for anyone? This is my mum’s life and I see no end in sight!

The following are screenshots from the gov.scot website about exceptions to Covid rules -

• My mum and dad are a couple living apart but do not get to see each other when they choose, they have 2 x 1hr allocated slots and we better hope my mum is awake to know that her husband is there.

• My dad lives alone yet he cannot form a bubble with his wife.

• My mum is vulnerable, isolated because of care and someone whose wellbeing is at risk yet no family member is allowed anywhere near her on a regular basis to help with this. We have to book allocated slots and have our time together dictated.

So yeah, if you live in a care home don’t begin to think you have the same rights as those living in the community.

I genuinely thought the worst thing about mum’s dementia diagnosis was she would forget my name... believe me I would take that any day now over this!

The government released guidance on 24th February called Open with Care in my opinion this is NOT working despite what all the models say and they still insist they cannot enforce care homes to Open with Care as they are private companies. This is the same government who told the care homes to shut and the same government who have just admitted their mistakes about discharging covid patients to care homes at the beginning of the pandemic which has led us into this fear of letting family members in, in a bid to protect those who survived that mistake.

This is the same government , who on a local level said my mum would be better off in a care home and forced our hands into making this move but now insist they can no longer intervene in my mum’s life anymore.

My question is how much longer do we sit back as a society , government officials, policy makers, charities and think it is OK that a corporate private world has the final say in how human beings live their life. At the end of the day that is what it is, someone running a business gets to decide who people like my mum see, when and for how long.

Why is this OK?

We cannot make up for lost time.

Please, someone tell me what we are protecting my mum from - she has had the two vaccines, what else needs to happen to allow her the bare minimum to see her husband each day like a normal married couple? What is the purpose of the vaccine if this cannot be allowed?

Why is my mum being forced to endure an end of life disease with no family around her?

Each day we lose my mum to Dementia not to Covid! It is beginning to feel like that if you don't live well with Dementia then there is no-one standing up for you.

Staff on the ground have been amazing throughout all this, and families across the country will forever be in their debt. But the majority of staff get to go home to family and spend days off together while the likes of my dad sits alone in his flat and my mum lays alone in bed and me, their daughter is struggling to know what else I can do to help them apart from continue to raise awareness of this disaster that is still happening 14months on for them and for so many across the country.

Please just let them be together for whatever little time they have left.

I hate referring to my mum as being childlike but her needs are just like a baby and we would never keep a baby from their parents. My mum needs her husband the very least.

I know care home staff are terrified. I cannot imagine how hard it has been for them but has anyone thought how terrified my mum has been the past 14months?

Is this a life you would want to live for yourself?

Is this a life you would want for your partner, mum or dad?

It may not be affecting you today but no-one knows what is around the corner and this is why we need #AnnesLaw

Please continue to share and sign -

https://www.change.org/Allow-Designated-Visits-By-Family-Carers-Into-Care-Homes

* my usual statement that this is in no way a critisim of care staff but an honest account of how this is effecting families and a belief that the care system is broken and someone needs to stand up for residents rights.