I am sharing the responsibility, with my mother, of caring for my terminally ill father. He has advanced liver disease and liver cancer. The cancer causes pain. Other than that, it is not what is killing him. The advanced liver disease is killing him. A symptom of liver disease can be psychosis. There are milder symptoms that affect mood and brain function. He is very tired! He becomes more tired everyday.
Regardless of the illness your loved one (LO) has, they will get tired. This will be less obvious at first, but it will progress. At first your friend will get tired after a big day out. Then a short outing, like going out for dinner will be more tiring. Eventually, getting out of bed, having breakfast, getting dressed and leaving the house will feel like a hard day's work. Then, eating a meal will be exhausting. Simple everyday tasks such as going to the toilet (once), will be exhausting. Getting in and out of bed will be no mean feat.
The tiredness will be difficult to understand and difficult to watch. Be ready for that. All the things that go along with exhaustion will be there too. LO will be sleepy, a little fuzzy in the head (the way you are when you haven't had much sleep), moody and emotional. Be prepared for that. You will be tired too.
There is much more I need to tell you about being a carer. I won't be able to cover all of it in one blog post. Not in a way that will be helpful to you! So, here is the plan. I will post regularly about being a carer: tips, tricks, encouragement, ideas and some of my own experiences. I will tag all of these "how to be a carer" and will create a home page for all you carers out there. I hope this helps. It will help me, anyway.
So for today, be prepared for your LO to be tired and be prepared for you to be tired. Plan for time alone and time to rest. Don't be afraid to ask for help so you can rest. Don't plan lots of visitors, outings or activities in the one day. Take it slowly! Give yourself permission to say no. Rest when you can!
Remember you are doing your best and there is absolutely nothing better than that!
