Monthly Archives: December 2014

About Care Givers, Part II


Part II about care givers:

It might have been a drastic change or a slow one, but things will be completely different than before. Maybe you can not do things spontaneously anymore like you used to, and that takes away a freedom that most people take for granted. For us it was quite sudden, I was already chronically ill, but I was much more able than I am now. We used to be able to suddenly decide we wanted to go out, and now I need to weigh up if it will be possible or even if it is worth the aftermath. So my partner goes out alone a lot. It’s good for him and good for me.

Carers can be wary of sharing their problems with the person in their care; this is because they think they do not want to burden them. But sharing problems can actually give the person you care for the ability to give you moral support. We should always let our care givers know how much we appreciate them.

If your carer is your partner and you had times together when you were not ill, try to find a way to preserve some of the relationship you had before you became ill/disabled. You might not be able to do the same things as before, like going for dinner, going to movies etc., but you can still watch movies together at home and discuss them. Or maybe you can play board games (they can be done online as well), read books together, discuss art or just talk about the things you really liked in the past.

There is a reluctance to tell people when someone has become a carer; it is a life changing and stressful event. The consequence is that other people would not even know when a carer needs help and that can lead to burn out or depression. If you are the one being cared for, encourage your care giver to share his or her thoughts with others.

Things might not always be the same; sometimes people recover a bit or maybe they completely recover. This depends on the illness/disability of course, but if there is a chance for improvement, remind your carer of this. I have improved a bit in the last year; we have been able to take 2 mini holidays and those have been great!




About Care Givers, Part I



In this two part series I will talk about care givers, the problems they can encounter and how to avoid those. This article is for both carers and those who are chronically ill/disabled.
Here is part I:
First I like to talk about isolation. Carers can get isolated if they don’t do things on their own without the person they care for. In some cases it can be very hard to leave the other person alone, but there are organisations that have support programs, or offer ‘respite care’. Or maybe a friend can take over. If that is not possible, simple things like catching up with friends over Skype/FaceTime can help. Or have people visit you at home.
As a carer, it is important not to neglect your own health, you can not be a good caregiver if you do not care for yourself. Ignoring your own health can have a negative impact on the person you are caring for but of course also on yourself! So how can you take care of your carer? You can ask how he or she is doing, remind them to look after themselves and if needed, tell them to get medical help. Think if there are other people in your environment who can help with little things, or maybe hire a cleaner once in a while to do the heavier/bigger jobs in the house. That can help a lot.

Care givers can get care giver burn out if they do not have some time to themselves. It is very important even if it is to do little things like reading a book, going out for dinner, or having coffee with a friend. A care giver’s life can very much become one dimensional, but there is more to the person than only being a care giver. For us chronically ill/disabled people it is important that our care givers’ lives are not only all about taking care of us. We like hearing stories about the outside world, about what you have been doing, who you bumped in to. It gives us some normality.

Carers should allow themselves the time to grieve the loss of their old life, just as the person they care for will have to do. It is a perfectly normal feeling to be sad about all the things that will never be the same. Do not feel afraid to share with the person you are caring for, they have this in common with you! Even though life can be totally different now, try to look at the positive things you have, the little things. For example maybe you now have more time together than before. ‘Different’ does not necessarily mean ‘bad’!