Walk a Mile in... Adele's Shoes

Listen to Adele's story to hear what it's like to walk a mile in her shoes. Or you can read her story below.

Adele's story

My name is Adele Jennings and I have been caring for my husband John for over 20 years now and my three children, two who have now reached adulthood.

The people that I care for are all family members. My husband and three children.  My husband has a back condition and multiple other conditions. He has breathing problems and mobility problems.

The three children all have autism, they are all on the autistic spectrum.  The eldest has varying mental health problems; he is now 21 years but has suspected bipolar, depression and issues with self-harm.  He is currently at university but we are supporting him but he also has support whilst he is there.  My husband has support in the day and I do the evening usually but I am normally in and out during the day in case there are any problems.  My middle daughter has autism and also mental health problems. She has generalised anxiety disorder and depressive symptoms and depressive episodes which can be long and ongoing.  My youngest daughter has autism and is quite reclusive.  There are a lot of autistic people.  They all have varying abilities and disabilities.  My youngest daughter also has learning difficulties and caring wise it impacts on my life every day.  I currently have mental health problems of my own but I am not going to discuss them.  It can be quite isolating trying to speak to other carers. Or to other people who understand your situation but I think that as long as you are sociable you can get through the day or whatever challenges you have. I think the main thing is to just speak to people even if it’s just neighbours and just to vent your frustrations.

Socialising, I use Instagram to relate to others in my position which is mostly to do with the autism side of things because it’s a challenge every day; not that caring for my husband isn’t a challenge because we bicker all the time but I think that’s just the pressure of spending too much time with each other and being in a carer and cared for situation. 

With family I have limited contact.  I do have contact occasionally and we what’s app each other but due to my caring role and complications within families we don’t have family support. And friends wise. I’m not anti-social but do find that due to my commitments it’s not a priority.  I speak to friends if I see them, might have a chat with local people if passing in the street and things like that.  I am a friendly person but my life does not come a top priority. 

I have been to carers groups in the past.  I’ve been when my children were younger and when they were older. Always found that it’s been mainly older people, although you can have some caring experiences that are similar, they seem have a completely different caring situation to myself.  I haven’t thus far found it relatable to my situation.  It may just be the people in my local area; people who have managed to attend the groups, I’m not sure.  I have nothing against older people. I’ve worked with older people, socialised with them generally, but as a carer to carer situation I don’t find I have things in common with them; and I don’t find that many younger people of a similar age of situation attend the meetings so therefore I very rarely attend them myself.   It may be that a lot of younger people don’t attend them as they have had the same experience that I’ve had and therefore everyone doesn’t attend and you end up in a situation where you don’t actually meet anyone else with a similar experience so they don’t go.

Maybe the internet is perhaps the best way to contact other carers as its quite an isolating situation and can be quite frustrating especially when its family members that you’re caring for as there are obviously tension of being relied upon all the time, but on the other hand you wouldn’t want somebody else caring for the person not doing it way you think it should be done.  It is a challenge each day but then you know that they are being cared for in the proper way, whatever you’re doing be it advocating, personal care, cooking cleaning whatever the situation.  I think everyone has their own lives and ends up in their own situation.  But there can be positives from that, maybe a lot of carers need to get out more either with the cared for or without the cared for.  Maybe something needs to change. Maybe an internet forum, I don’t really know but maybe it’s something to bring forward.

I’ve had a recently updated carers assessment which was quite…..   it was over the phone so I had no idea who I was speaking so it was quite intimate details of my caring role.  Who I care for, the kind of things I do. I didn’t know the person and that is the only time we had spoken and I found the process to be ……  the person was asking the questions but then was starting to answer them for me; the person sends the assessment through and there was some detail in that was not correct.  As the carer, and as a person, I do not have the energy to be chasing that to correct the incorrections on that form. They did send a payment for, I think it’s classed as Carer Personal Budget now? I think that’s what it’s called.  I have spent it over the years on various things, generally it’s going to the theatre.  It depends on how much money you are given at the time depends on how many times you can go but usually perhaps 3 – 4 trips.  It depends on your interests.  Some people spend it on having their hair or nails done.  I’ve also put some aside for a new dog which will be family pet but it also means that I can get out and walk my dog and meet other people, have a chat with complete strangers, in the park usually about the dog but it means getting out and getting some fresh air and exercise and you don’t have to worry for the time that you’re out about the cared for, whether it be family or friend, or whoever you care for, it means you’ve got a bit of you time, just you and the dog and I suppose that depends on whether you are an animal person or not; you could save it for a rabbit if you like – but really means you can spend it on something you want to do and makes you happier.

But I think the carers thing should continue and if anything should be increased if there are funds to do so. May be no all as a one payment because will go mad and spend it on things that they shouldn’t be spending it one but should be spent on things that make the carer happier than they are.  Give them a bit of time out and then there is no financial restrictions to go out and enjoy yourself for a little bit of time.  I ideally would suggest two payments per year and an increase would be very good especially in the situation that I’m in as its out in the countryside and there’s not that many places to go without travelling so therefore the funds help to get you from a to b and get you to a group or activity or whatever you want to do.

That’s all I can say I think on the carers side.  That carers shouldn’t be ashamed or think that they have to spend it on the cared for because the cared for, in most cases, are very well looked after and cared for because, presuming, like myself, do a very good job to best of your ability.

One thing I would like to say regarding dealing with GPs, consultants, health professionals, that once my children became 18 that did become a barrier, more so than when they were younger, as my children don’t generally want to speak to the GP over the phone.  They speak to very few people over the phone, it’s usually my husband, myself and some close friends.  Other than that, they contact even carers via text so there’s never a verbal conversation over the phone.  If they have support workers it’s usually via text, prearranged. But when dealing with GPs and health professionals they don’t seem to take on board the fact that you are advocating for them and they have agreed for you to advocate for them.  We have had many disagreements with the GPs regarding this especially the fact that two have moved to uni and are adults.  Therefore you have to go through the whole process that they are 18 and they have to give permission and its noted down on the records and they have autism and you advocate for them but the receptionist is generally the middle man to any doctors and if they do not agree that you should not be advocating on their behalf without them speaking to the receptionist on the phone then you generally go round in a circle. This also happens with hospital appointments and various other health professionals.  It does need to be noted, somewhere, on record if a person requires a trusted person to advocate for them on their behalf without all of the security problems and issues that there are once they are 18 and above.

This information was last updated on 18/12/2018