Onmybiketoo writes below about how the invisibility of and public amnesia about family carers adds an extra burden to carers’ and carees’ lives. If you thought that being a full-time family carer had dealt you enough blows, wait till you try to find an appropriate place to live. This is a problem that can be solved – if we really want to.
Many informal / unpaid Carers give up a lot of freedoms that many in society take for granted. Freedoms such as getting up when you plan to, going out when you want to, being you as an individual. Life’s timetable is driven by the needs of another person or persons.
Carers find themselves confined to where they live a great deal more than those without such responsibilities. Going out is such a logistical exercise, if you take your Caree, will they act in a socially acceptable way, look normal,[it does not matter to you but the issue is still there] be able to cope, get ill while out, will you be able to get done what needs doing while trying to look after loved one at same time. If you leave them at home, can you get care cover, will they be okay to be left alone. This leaves a lot of carers socially isolated, which is why the space in which you inhabit is so important.
Homes can become quasi hospital wards, become uncomfortable to live in. Everything being geared around the Caree with the Carer having to live in the spaces left in between. Your home may become full of specialised equipment, incontinence sheets, latex gloves, prescription medication and other medical consumables with little space to store it. Spouses may have to move into the guest room as the master bedroom is full of specialised hospital bed, hoist, sliding sheets, ventilation, CPAP and nebulizer machines. Many pre-pension age couples have come across the problems this causes especially when the government decides to then punish you for having to live this way by taking some of your housing benefit off you as you have a spare room that is not a spare room. Yet at the same time if you have a paid night care-worker many local authorities give you an exemption, which does not make sense to me as if you need night care, that care-worker is not going to be sleeping, unless they are live in of course. So in that case, Caree gets a bed, care-worker gets a bed that can’t use as working and spouse Carer gets to sleep on the sofa in the living room.
Carers looking after the severely physically disabled also have the problem of finding some where suitable to live that meets the accessibility needs that a wheelchair user needs. If you are fortunate to own your own home there is quite a bit of help out there, grants and charities will help make adaptations to your home. If you rent you are basically stuffed, as no one will listen to you, you will be added to a local authority waiting list for a home type that no one is building, or existing housing stock does not exist. Then you will get the pressure from the local OTs and Housing Authorities to move into totally unsuitable housing, like partly converted OAP bungalows, with rooms so small that living will be made impossible. You will then be blamed for not taking what you have been offered, be told you are being unreasonable etc. On top of that all these TV programmes that help people such as DIY SOS and the like only help people that own their own homes.
If you are lucky enough to find some where to live, everything will be built around the needs of your Caree and not you the Carer, so kiss goodbye to that long soak in the bath once a week that kept you sane.
Other housing issues arise from not being able to have space to take a break from each other, especially if you are stuffed in a small flat 24/7 without outside space. Does not matter how much you love your Caree everyone needs their own space at times.
Being a Carer is difficult enough without the authorities recognizing this and doing everything they can to make life just a bit easier. Housing needs to be a key element of the better care fund, needs to not disadvantage those that rent their properties. Housing authorities really need to examine their housing stock and enforce the 10% of properties that need to be built to lifetime homes and wheelchair accessible standards. Time and time again I read the minutes of planning meetings where local authorities have caved into the developers that make out they cannot make enough profit on the building of bungalows. This is a short sighted decision that as the increasing population percentage, ages will come back to bite their successors in their bums in years to come.
Carers must have safe places to work in, sticking them in unsafe living environments is condemning them to their own health problems later, not to mention being one accident away from being a greater burden on the state. If you are to be stuck 24/7 in an environment then that place should be as safe, mentally stimulating, and comfortable as possible.
After all we are Carers, not prisoners that have done something wrong.