It takes a lot of people, on a daily basis, to keep my dad in his own home.
We have someone to cut the grass and someone to cut the hedges. A cleaner who comes twice a week, carers three times a day. Family members are each scheduled at different times. All that is just to keep the house – and him – ticking over.
My father is 89 and has dementia.
We know that he will have to move into full time residential care
We don’t know when that will be: when he cannot cope, or has a fall.
The aim of Social Services – and we, his family – is to keep him at home as long as he is able, and for as long as he can manage.
Clearly, this is a house in a state of decline.
From being a family home that was regularly maintained, decorated and cleaned it now suffers from neglect, general deterioration and wear and tear.
For ageing occupants with health problems that is not unusual.
Now, because we want to spend quality time with dad, we only deal with what is necessary to keep it clean and functioning. And, there is only so much we can do to it in the time that we have.
The house needs a major overhaul. A total renovation.
But, it’s just not worth our spending a chunk of money on it for the time that he has left here. Also, builders, painters, plumbers… it would all be too much of an upheaval for my dad to cope with.
He doesn’t actually notice the way things are. It doesn’t seem to bother him.
Because he is comfortable here … with the rooms, the furniture and location… to move him from this place will be difficult.
He has lived here for nearly 50 years.
As a family home this house worked very well. But for someone with dementia living alone it does not fit with his needs. Unlike purpose-built accommodation this house is working against him.
For now he is safe, warm, content and relatively independent. But, without the current level of support it would be a very different story. We know he would struggle with very basic personal care, feel anxious; and running the house would overwhelm him.
Every day the house loses value – not just in a monetary sense – but as somewhere someone would actually want to live.
Of course we worry about how the house looks – and how it looks to others. But our main focus is to keep it running day to day.
We will have to see how long he can cope – or we can cope. It is a situation that changes all the time and is not going to get better.
The house is still a familiar place to him.
He understands the layout and how to negotiate the space and rooms. And yet, there are signs of some uncertainty creeping in. It’s what they call sundowning.
He often says: ‘This is a great house…. I think I bought it – didn’t I?”
Sometimes he has an idea that he lives somewhere else… that there is another ‘home’, another place he should be.
Given his age, the house could be/ should be a lot more user-friendly.
The digital control pad for the central heating system confuses him – as it does us all.
But that’s they way it came. Setting the heating timer is not intuitive or easy. Not for someone born in a pre-digital era.
Contemporary appliances have too many options and too many buttons. For him, even switching on the TV (or finding the right remote) is hit and miss.
With each stage of his illness we notice that he interacts less and less with the house.
He no longer engages with routine daily activities and has lost the ability/interest to switch on a kettle to make a cup of tea.
Occasionally, he will rinse through a mug, or plate, or spoon. Later, we will find it on the draining board or in the cupboard. The mug will still be smeared with lip stains, the plate sticky with toast crumbs, the bowl with bits of dried-in weetabix or, a spoon still covered with egg.
With dementia that’s not uncommon.
Interestingly, he does not think about how laundry makes its way through the system. I suppose he never really did. Mum did it all.
He doesn’t think about how the bins are emptied, the fridge stocked and toilet rolls replaced.
Luckily he does not have to, because he has family to do it for him.
We anticipate what needs to be done.
Now, only visiting family members use the cooker, the iron, the freezer, the vacuum cleaner and microwave. He doesn’t engage with any of these appliances.
The dishwasher has been broken for years and will never be fixed, or replaced. We have two fridges, side by side. One works, the other….we just haven’t got round to getting it moved out yet.
For dementia sufferers cupboard doors and drawers can be a visual barrier.
Dad forgets what is inside – or even that there is an inside.
Maybe that’s why we often find him searching for something. He is not sure where to look, and no longer has the words to explain what he is looking for.
Deciding what to wear each day makes him anxious.
In my parents’ bedroom my father’s trousers and shirts hang from the wardrobe handles. In the other two rooms, more clothes, underwear, socks, jumpers are spread out on the beds.
Dementia makes it difficult for him to think about anything that is not directly in front of him.
If things are set out there is a greater chance that he will see them. If not, he will not think where it might be. And so, every chair in the house is draped with a suit jacket.
There is no point in tidying these things away because this is what works best for him.
When this house is eventually sold ‘in need of some modernisation’ it will be very obvious that this is the home of an elderly person.
We grew up with most of these things our own homes are fully furnished and so there is very little here that we want, or have room to keep.
The furniture in this house is not antique, or vintage; it’s just old, and old fashioned.
It’s sad. Even though the furniture is such a part of this house – and of the people who live (and used to live) here – no-one else would want it.
Because everything is outdated, worn, tired and shabby everything will likely end up on a skip, and be dumped.
Of course, there are a lot of memories here.
I remember back in the ’70’s when we got the ‘new’ suite – even though it was second hand. That was nearly 50 years ago. Anyone else would have changed it but, like most of her generation my mum would say: “ It will do me to the end of my days…”
We manage to keep the house clean and relatively tidy. But it has not had a deep spring clean or a clear out, or been decorated in a very long time. And it shows.
Every cupboard is full of ‘stuff’.
We still have a VCR – but I’m not sure it works.
Old videotapes, records and CDs: Fawlty Towers, Andre Rieu, Singin’ in the Rain, Oklahoma – are still stacked tidily under the TV.
The carpets and sofas are worn, flat and threadbare. Light fittings are gathering layers of dust and the furniture sags. Through washing the black under-layers of the wood-effect laminate flooring is now exposed. All the paintwork on the walls, floors, ceilings has darkened and the wallpaper is drab and dull.
Some of the ceramic tiles in the cloakroom have fallen off. Others have had makeshift repair taping them onto the wall. A temporary solution. It’s just one example of things that are not ‘being done’ to the house.
In the past, all these things would have been fixed and regularly maintained.
The house is of a liveable standard, but there is so much more that needs to be done to bring it back up to the way it was.
Dad used to take responsibility for the exterior paintwork but it is now all cracked and peeling, weathered and worn.
Only a few years ago he was still very active and engaged. He could turn his hand to most DIY jobs. Now, the garage and all his tools has been largely abandoned to cobwebs. It is an overflow space for things that have not yet made their way to the dump.
It’s only a matter of time.
We know it will all have to be sorted and cleared – some time.
For further information on dementia-related needs:
Nuala , you have captured this in a very honest personal way- reading and seeing it through your eyes. It kept me reading.
Thankyou CC. That means a lot.