Patients, what advice or tips do you have for caregivers out there – professional or otherwise!
This was written a while ago with help from my lovely Boyfriend who although I do not assosiate him as having a caregivers role, he is the most supportive and caring person . So we came together and made a few bullet points of advice for partners and caregivers.
- Be Supportive : This one kind of goes without saying, but when you are looking after a sick person you just need to remember to be supportive, if that means being by their side when they are in pain or even just giving them a phone call every now and then and letting them rant for a bit. From a chronically ill person’s view, just knowing that I have someone there for me to fall back on, takes a whole lot off my mind.
- Listen and try to be understanding : Although you may never know how the person you care about is really going through, listening too them ramble and talk about how they are feeling/ the latest medication change or a doctors appointment will help them so much. Plus you can take that time to try to understand what it is like to be in their shoes, try to learn a little bit what their illness is doing too them, that way you will be able to care about them more effectively and know how and what to do for them to make their lives that little bit better.
- Don’t expect too much : This point and the next one tie in together I think so sorry if I repeat myself. I think what Ben was aiming for with this point is that you should try to understand that the person you are taking care of can, not in a mean way, but can be unreliable, they don’t know if they are going to wake up the next day with high or low pain levels, so plans and event’s may have to be given a miss at short notice from time to time.
- Don’t get too upset if plans get cancelled at short notice / allow days in bed : This ties in with the last point. Plans will get cancelled at short notice when you are chronically ill or caring for a chronically ill person. Don’t make them feel bad about the fact that the day has been cancelled or cut short because of their pain level’s, cause chances are they feel absolutely awful about it being cancelled too. Just remind them and yourself that there will be plenty of other opportunities to do things and have day’s out, it’s not the end of the world. Allow them to spend day’s bed and recover as much as they can, maybe turn it into a duvet day and get some snacks and watch lots of films and take that cancelled plan’s time as time to spend time together.
- Learn about the illness yourself : This I think is an important one, it meant the world to be when I found out Ben had done some research himself With having Fibromyalgia, I didn’t even know what it was, so Ben would have had no idea (like most people, unless you know someone who suffers from it). So him going out his way to read up what my body was doing and the way it affected me made life SO much better, it meant he knew what things to do for me and ways to help me out on bad days, because he knew what I was going through, to some extent.
- Remind them to take medication : This is an ongoing thing with me and Ben, because due to my bad memory and ‘Brain fog’ from my Fibromyalgia, I always forget to take my medication or forgot if I’ve taking them. So it’s just a little thing but reminding them of these little things can help them so much to do things.
- Be willing to go to Doctor’s and support groups with them : Being there for them to support them at doctors appointments, even ringing up to make appointments for them. Researching up local support groups is a wonderful thing to do, to help them get support from other people, for them moments that you can not be there for them. They will be scared and nervous about going to support groups the first few times, so going along with them to the meetings is a huge help to them, and also a lot of support groups offers support and help for friends/family and people who care for people with Chronic illnesses, so you yourself could get a lot information and support too