NHBPM Day Eighteen: How should I care for someone with your condition? Well, you should….

Welcome to the 18th post of the ‘National Health Blog Post Month’ – so we’re just over half-way through the month-long writing challenge!!  Today’s chosen prompt asks us to write a post giving advice to a caregiver whom is caring for a patient with your condition.

I thought this was a great post when I read it – often caregivers are the forgotten ones in terms of health activism and general writing regarding chronic illness – so thought it would good to write a post which acknowledges the caregivers and to give them advice which would help them care for another patient like me.  However, it could also be somewhat of a challenge, also, especially considering that my condition is unusual – not knowing other patients with the same condition means that the advice I will give will only be from my experiences and viewpoint.

1.  Try to UNDERSTAND!  Perhaps the most important advice that I could give for any caregiver.  The condition which I live with is unusual and rare, so it may be useful for        caregivers to learn about the condition – about the potential symptoms and effects that it can have on the patient; about any possible deterioration that the patient may experience and any signs that they should look out for.

If, like myself the patient has a personal assistant than that person may want to ask the patient questions about the condition, and all of the symptoms that the patient themselves experiences, and how they can help overcome some of the difficulties experienced during the time they spend with the patient.  Find out the needs – for example, I often when using my crutch like to hold onto the arm of the person with me, to help keep my balance and to prevent falls.  It is imperative for caregivers to find out the needs of the patient before all else, to let the patient have semblance of control over their lives.

And it also is important to remember that the condition like the one I live with can be very unpredictable – and often means that it can be very difficult to plan ahead of time; to plan days out and other activities as the patient will not know how they will feel as that particular moment of time.  Trips might have to be postponed or cancelled at short notice.  This can be very frustrating for not only the patient but also the caregiver.  In these instances it can also be important for carers’ to be PRACTICAL and INVENTIVE, perhaps thinking of other activities that the patient can take part inside the house – this could be time spent playing board games, or a cinema afternoon playing favourite movies with popcorn and wrapping up with a quilt or blanket.  I love to do these sorts of things on bad days when I am stuck inside with my Mum 🙂

2.  Always be NON-JUDGEMENTAL: Like myself, I have many different symptoms that I experience as a result of the condition, including dizziness, vertigo, weakness in legs (often resulting in many falls) and so on.  Often, these symptoms, just like the condition, itself can be difficult to understand; because of the dizziness and vertigo as well as the visual disturbances, it can cause me often to become very anxious and panic; so caregivers must not only be understanding but also non-judgemental and patient.  To help keep me calm and relaxed when out; to keep the effects of the symptoms under my control, instead of the other way around.

It is also so important to LISTEN, be  SUPPORTIVE and SYMPATHETIC.  This is incredibly important after the initial diagnosis; the patient will be scared and incredibly anxious about what the future will hold – not knowing if the condition will become worse and so on.  In this case show that you still love the person despite everything.  Also, never assume you know what the person is feeling or experiencing on a daily basis.  If  they say they are feeling very dizzy, and finding it incredibly difficult and so cannot go out – then BELIEVE them!  Give the person a cuddle – or go out and buy them a treat to put a smile on their face.  They’ll be very appreciative of it – I know I did when a very dear friend gave me a beautiful bunch of flowers; or when another friend sent me a beautiful butterfly brooch as she knew how much I loved them and wanted to do something nice for me when I was going through a difficult time.

3.  To HELP with certain tasks that the patient no longer is able to carry out themselves.  This would be very helpful for the patient; it can be very detrimental to one’s mental health when you struggle with certain tasks which used to come naturally.  So helping the person with the condition, would certainly be helpful for the patient – we would certainly be very appreciative of any help that can be provided!  And will also help us to save our spoons!

4. To keep a list of contacts somewhere accessible in case of emergencies – including doctors telephone number, emergency contacts and other information that will be useful.  This is useful when dealing with conditions like mine, where falls and accidents can very easily occur.  I have certain telephone numbers that I can ring if I hurt myself or an emergency crops up when I am on my own.

If the patient has deteriorated and mobility has become severely affected; falls and accidents are becoming more prone than I would definitely advise getting a social services assessment done as they can provide excellent resources and can offer assessments for adaptations for the home if needed, as well as offering services such as ‘LifeLine’ where emergency contacts can be alerted in the event of a fall or some other accident.  They can provide peace of mind for carers when they need to go out but are worried for the patient’s well-being.

4. And lastly, it;s important for carers’ not to burn out themselves so I would advise for them to take time out for themselves – perhaps, join a support group for other caregivers’ or take up a new hobby or past-time.  Generally keep fit and healthy so that you are able to provide the care that the patient needs.

So there are my top tips for any potential carers’ for a person with my condition – or any similar to it!  What would your top tips for carers’ or loved ones’ be?