It is hard when your loved one moves into a care home. Often this is because they are not safe to be left living alone, are at risk of harm to themselves or others and living in your home is not an option, as they have complex needs, which may be challenging. You realise your loved one now needs specialist 24 hour care.
The day you move in, you turn up with your loved one, maybe a case with clothes and a few personal belongings and you put your trust in those who are now being paid to provide the specialised care your loved one needs. All that person has in the world - the clothes they stand up in, a bag, a few personal possessions and the love of their family. Gradually these can be stripped away a bit at a time.
You turn up to find your loved one in other's clothes, or others wearing a special item of clothing you purchased. Clothes go missing frequently you have to replace, the ones remaining quickly become shabby and damaged with the industrial laundry, crumpled up in drawers, often with huge felt tip names written on the fabric which looks very undignified (despite you having spent hours and hours hand stitching name tags in everything. Personal possessions get broken, go missing. Families raise concerns and often find themselves banned or restricted visits. Everything that person entered the care home with has not been protected. Is that really too much to ask? Yet residents can be paying anything upto £1,000 a week or more for the privilege. It is very hard for a family member to see this evolve.
For so many families it is a huge shock once the settling in period is over. They realise what they read on the care home web site, in the brochure, in the CQC Inspection Reports and care home review sites and what they were told when they viewed is not reality. There is no sure way of knowing how good a care home is until your loved one is actually living there. Then the problems begin and you find you have entered a world of conflict at a time you are needing support. Life is never the same again.
Families are being forced to fight for someone they love in a care home, especially those who lack capacity, trying to keep them safe, cared for with dignity and respect yet they too often become of a victim of the care sector. The actions of bullying care providers are destructive and strips people of their very being, not just the resident, but the whole family network. It impacts on all.
For many the pain continues even after the loved one has passed away. We hear from many who cannot live with what happened and they question why could they not stop it. The pain will probably remain with them for the rest of their lives and overshadow all the lifetime they shared with that person.
Families have witnessed their loved ones dehydration, malnourished, neglected, their incontinence pads overflowing, unexplained bruising and no one has helped them. Everywhere they reported it, whoever they spoke to, no action was taken. I ask everyone to try to imagine how it feels to have every door closed on you and being powerless to help the person you love. A great sense of injustice is left behind once this person has died, ontop of normal bereavement, but please do not blame this on grief.
"The pain and recriminations don't go away and life cannot move on" "unfinished business and you can't draw a line under things".
Many say to us 'How on earth did it manage to get that bad?' 'Why did no one believe me?' 'Why would no one helpme?' 'I should have done more' 'It is my fault'. This journey is not one I would wish on anyone.
I just wanted to send out a message to all those families hurting so badly. Many know of our campaign, but many do not and they will be feeling so isolated, realising there are many hurting like they are. We are all in it together. We must fight on in memory of our loved ones lost, those still with us and for future generations.
Please, please, never think you were to blame.
I do not believe we can ever return to the person we once were before our care home nightmares began, but if we can make changes to the care system, I hope this will help bring healing and a sense of peace can eventually be found for everyone.
We must build a new future for care and Your Voice Matters want to be a part of that. We want to break these patterns of sticking plaster initiatives that do not solve root causes. We have the solutions, but are they wanted? Time will tell.
Your Voice Matters will carry on doing our best to change the future of care for us all and hope that our collective devastating experiences have given us the evidence we need to force this to happen.
A new future of compassionate person centred care, where increasing profit margins is not the focus will be the legacy of all the vulnerable people who have suffered in the hands of care homes. We can do this .... together.
I'm busy working on my blog posts. Watch this space!