Welcome to the nineteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Top Three Tuesday: Give three pieces of advice that you would give to a caregiver.

Caregivers are such an aspect of the lives of patients with a chronic illness.  Caregivers fight for us; advocate when needed; care when we are unable to care for ourselves and give us a lot of support through the bad times, when hope seems impossible.  And as they are such an important part of our lives whether they be a parent, a child, a spouse and so on, they too deserve to have plenty of support and advice offered to them when it is necessary.

As a chronically ill patient, the top three pieces of advice that I would give to caregivers would be the following:

1. Try to understand the patient and their situation, whatever that may be.  It is true that it is very difficult to understand the predicament someone is going through, unless you have been through that situation yourself, and this especially applies to the experience of chronic illness.  However, if you are caring for someone with a chronic illness, and particularly those like mine which can cause unusual and unexplained symptoms, listen to what it is like for them and try to understand how frightening it must be for them to go through.  Learn about any possible triggers that can cause symptoms and help them through when they occur by holding their hand or speaking words of encouragement; whatever works for them
2. 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. Be understanding and patient.   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.  Or perhaps one of my favourite hobbies – making cards!

But perhaps the most important advice that any caregiver should be given is to take time out for themselves; such as taking up a hobby that takes them out of the house.  It is important that carers do this to prevent them burning out and as a result become unwell themselves, and to generally be able to provide the care that the patient needs.  Also, in my opinion any caregiver deserves a treat and time out for themselves as they definitely work hard in caring for others’ needs.

As ever, please feel free to leave any comments or suggestions below!  Are there any other tips that you would share with your caregiver?  Comment below…

Congratulations if you said that the incorrect statement from yesterday’s post was Number 2 – “Spastic Paraparesis only affects my legs” was the incorrect answer.   You are correct!  I find that my arms are also affected with them feeling stiff and weak some of the time, although not as badly as my legs.