My Granddad was a big tall, handsome man. He was
opinionated and loved an argument, so much so that some avoided him in the pub,
he would argue black was white and would never relent even when presented with
factual evidence to the contrary.
They say the bigger they are the harder they fall and this intelligent, infinitely caring and generous man was first diagnosed with dementia in 2008 and slowly but surely slipped away from us. "Bunt", as he was always known to friends, didn't have the more commonly talked about Alzheimer's, he instead had vascular dementia, caused by problems in the supply of blood to the brain. The condition often follows a 'stepped' progression, with symptoms remaining at a constant level for a time and then suddenly deteriorating and this was certainly our experience as a family. We would just grow used to a new set of circumstances, only to have that change suddenly and a whole new set of problems present themselves. You can read more about vascular dementia here.
They say the bigger they are the harder they fall and this intelligent, infinitely caring and generous man was first diagnosed with dementia in 2008 and slowly but surely slipped away from us. "Bunt", as he was always known to friends, didn't have the more commonly talked about Alzheimer's, he instead had vascular dementia, caused by problems in the supply of blood to the brain. The condition often follows a 'stepped' progression, with symptoms remaining at a constant level for a time and then suddenly deteriorating and this was certainly our experience as a family. We would just grow used to a new set of circumstances, only to have that change suddenly and a whole new set of problems present themselves. You can read more about vascular dementia here.
As a daughter and granddaughter it was truly
horrible watching this man being slowly lost and getting more and more frustrated
and less aware of his limitations. Perhaps the only thing more difficult was
watching my Mother, his main carer, endeavouring to cope with an increasingly
unreasonable, depressed and at times aggressive man, who haunted her every
waking and sleeping moment, occupying the body of her father. It would be
impossible in a few short words here to fully describe the horror and weight of
the situation as it ended up, in Granddad's last few weeks and months at home
or the burden that this placed on Mum; but suffice to say there was not a
moment in which she could rest, not an hour of sleep that wouldn't be disturbed
by rumblings, shoutings, cleaning up of urine and excrement and the need to
call out an emergency plumber to another blocked toilet filled with used
incontinence pads.
In the end so relentless and thankless was it that he would often break into verbal and sometimes physical abuse of her, particularly at night when "end of tether" had long been exceeded. My mother's mental health and that of my step-father were suffering irreparably and yet despite growing physical frailty Granddad was still essentially physically fit and able.
In the end so relentless and thankless was it that he would often break into verbal and sometimes physical abuse of her, particularly at night when "end of tether" had long been exceeded. My mother's mental health and that of my step-father were suffering irreparably and yet despite growing physical frailty Granddad was still essentially physically fit and able.
Care from community carers
(private) and district nurses offered minimal assistance but nowhere near
enough to ease the relentless 24/7 burden of care. Eventually, after an attempt at emergency
respite ended after 4 hours - a care home with full staff being so unable to
cope that they saw fit to send Bunt home once again to the care of my exhausted
and distressed mother - I stepped in. A consultant
and social worker visited the following day and arranged an urgent slot on
Bestwood ward at City Hospital, so that Granddad could be properly assessed in
a fully equipped psychiatric care environment.
It was clear from very early on in his stay that Bunt's needs were such he could not be cared for in a home environment or even in an average care home or nursing home. He eventually received a "Section 3" meaning his full care should be provided for under continuing care and paid for by the state. A place was found at Landermeads care home in Chilwell.
Landermeads was originally a small nursing home like many others and I had worked there myself for a short period as a care assistant in the early 90's. It was my experience there that had led me to train as a nurse, but since this time Landermeads had become far more. It is now a series of homes, each offering unique care, and it was The Meads, the home's specialist dementia wing, which found a spot for Bunt. He had visited the home one or two afternoons per week for some time before his hospital stay and had "hit it off" immediately with owner Rob, developing an immediate respect for him. When the time came for Granddad to move there permanently many of the staff knew him already and he was given the warmest of welcomes.
I think many families and those of advancing age are understandably fearful of placing a loved one "into a home" and often feel it is somehow a failure or a form of neglect in itself. This is wrong. Nobody can provide care on their own for 24 hours a day, relentlessly and indefinitely to anyone. When the subject of that care is often unreasonable, unwilling to help you or themselves, bigger than you, aggressive, violent and a stranger to you in every respect apart from their appearance, the task becomes all the more insurmountable. How will you care when you have not slept, how will you care when you cannot even meet your own basic needs without having to leave them alone for a short while, how will you cope with your resentment of this stranger in your relative’s body who has been evil to you almost incessantly for hours of days of months? What will you do when you are on your knees with emotional and physical exhaustion?
Landermeads didn't just "look after" Granddad, they gave him something that none of us could have come close to. 24 hour care. Care that allowed him to stay up all night if he was determined, care that indulged his mood there and then with activities and cheekiness and the relentless energy that only a full, shift-changing team of innovatively trained care home staff could provide.
I often describe Landermeads as like a toddler group for people with dementia, perhaps that sounds insulting, but once you've seen it in action it is quite something. The rooms are individually decorated, they each contain chairs, dining tables and familiar items from various eras. One room has a kitchen area where residents, known as "the family", can assist in cleaning up, cooking, baking, making drinks. There is a beautiful colourful secure but accessible garden. There are laundry items, old and new books, telephones not wired up, dolls in highchairs and pushchairs. Old ladies carry teddies and bestow love like it were their child, old men carry toy tool kits and sit fiddling with bits of piping and spanners. Music from many eras plays loudly in one room and staff and patients sing or spontaneously break into dance. Craft activities or baking will be happening in one area, the TV showing an old comedy show in another. Staff don't wear uniform, they eat with the residents and at night some wear pyjamas.
In this extraordinary environment I have rarely seen a patient distressed and if they are then instant comfort or distraction is provided. There is an overriding sense of ownership from staff and a true sense of family. When I went to make myself a coffee on one of my last visits, as visitors are encouraged to do from day one, I was struggling to find a mug; one of the staff helped saying "oh there's never any mugs in our house". It took me a moment to realise she was referring to this house, this home, this amazing place that had transformed a man distressed and sad and frightened to one who smiled, who laughed, who cheekily flirted with young carers - a home which allowed my Mum to once again be the daughter she had once been when she came to see her Dad.
In his last days and hours we all provided a vigil at Granddad's bedside, my Mum, her brother, my step-father, myself, my brother, my children, we were all there. Barely an hour would pass without staff coming in to offer supplies to us or provide physical care but more commonly just to check on "Bunty", to say a few words, to give him a kiss and stroke his hand. When he died, we cried and they cried with us. The version of Bunt they lost was different to the one that we had known. That big, strong, intelligent and relentlessly generous man, they only saw a little of what he had been, but they loved and respected the man they knew to the very end and were all so sorry to lose him, just as we were.
Dementia is cruel, it robs us of the very thing that makes us recognise and love our loved ones; it makes caring such a terrible burden that we are scared to admit. It can be truly awful and never ending, but, if we are really lucky, sometimes we may find a solution, a way to, not just cope with, but to cherish those last few weeks, months, years. That's what Landermeads gave to my family and I will always be hugely grateful for that.
It was clear from very early on in his stay that Bunt's needs were such he could not be cared for in a home environment or even in an average care home or nursing home. He eventually received a "Section 3" meaning his full care should be provided for under continuing care and paid for by the state. A place was found at Landermeads care home in Chilwell.
Landermeads was originally a small nursing home like many others and I had worked there myself for a short period as a care assistant in the early 90's. It was my experience there that had led me to train as a nurse, but since this time Landermeads had become far more. It is now a series of homes, each offering unique care, and it was The Meads, the home's specialist dementia wing, which found a spot for Bunt. He had visited the home one or two afternoons per week for some time before his hospital stay and had "hit it off" immediately with owner Rob, developing an immediate respect for him. When the time came for Granddad to move there permanently many of the staff knew him already and he was given the warmest of welcomes.
I think many families and those of advancing age are understandably fearful of placing a loved one "into a home" and often feel it is somehow a failure or a form of neglect in itself. This is wrong. Nobody can provide care on their own for 24 hours a day, relentlessly and indefinitely to anyone. When the subject of that care is often unreasonable, unwilling to help you or themselves, bigger than you, aggressive, violent and a stranger to you in every respect apart from their appearance, the task becomes all the more insurmountable. How will you care when you have not slept, how will you care when you cannot even meet your own basic needs without having to leave them alone for a short while, how will you cope with your resentment of this stranger in your relative’s body who has been evil to you almost incessantly for hours of days of months? What will you do when you are on your knees with emotional and physical exhaustion?
Landermeads didn't just "look after" Granddad, they gave him something that none of us could have come close to. 24 hour care. Care that allowed him to stay up all night if he was determined, care that indulged his mood there and then with activities and cheekiness and the relentless energy that only a full, shift-changing team of innovatively trained care home staff could provide.
I often describe Landermeads as like a toddler group for people with dementia, perhaps that sounds insulting, but once you've seen it in action it is quite something. The rooms are individually decorated, they each contain chairs, dining tables and familiar items from various eras. One room has a kitchen area where residents, known as "the family", can assist in cleaning up, cooking, baking, making drinks. There is a beautiful colourful secure but accessible garden. There are laundry items, old and new books, telephones not wired up, dolls in highchairs and pushchairs. Old ladies carry teddies and bestow love like it were their child, old men carry toy tool kits and sit fiddling with bits of piping and spanners. Music from many eras plays loudly in one room and staff and patients sing or spontaneously break into dance. Craft activities or baking will be happening in one area, the TV showing an old comedy show in another. Staff don't wear uniform, they eat with the residents and at night some wear pyjamas.
In this extraordinary environment I have rarely seen a patient distressed and if they are then instant comfort or distraction is provided. There is an overriding sense of ownership from staff and a true sense of family. When I went to make myself a coffee on one of my last visits, as visitors are encouraged to do from day one, I was struggling to find a mug; one of the staff helped saying "oh there's never any mugs in our house". It took me a moment to realise she was referring to this house, this home, this amazing place that had transformed a man distressed and sad and frightened to one who smiled, who laughed, who cheekily flirted with young carers - a home which allowed my Mum to once again be the daughter she had once been when she came to see her Dad.
In his last days and hours we all provided a vigil at Granddad's bedside, my Mum, her brother, my step-father, myself, my brother, my children, we were all there. Barely an hour would pass without staff coming in to offer supplies to us or provide physical care but more commonly just to check on "Bunty", to say a few words, to give him a kiss and stroke his hand. When he died, we cried and they cried with us. The version of Bunt they lost was different to the one that we had known. That big, strong, intelligent and relentlessly generous man, they only saw a little of what he had been, but they loved and respected the man they knew to the very end and were all so sorry to lose him, just as we were.
Dementia is cruel, it robs us of the very thing that makes us recognise and love our loved ones; it makes caring such a terrible burden that we are scared to admit. It can be truly awful and never ending, but, if we are really lucky, sometimes we may find a solution, a way to, not just cope with, but to cherish those last few weeks, months, years. That's what Landermeads gave to my family and I will always be hugely grateful for that.
