It has made me more realistic and somewhat less positive. I currently care for a small disabled child who can safely be left with my partner for up to six hours each day. Our finances seem in bad shape however. Honestly I have had way more issues with the system than with him. I filled out the state of caring survey too.
I feel a bit lost where to start with this but maybe in another sleepless night, saying things to people who know will help. I have been a carer for my husband who was diagnosed with motor neurone disease in September. The progress has been alarming and he is nearly completely locked in his body. It is a different disease every day and we are heartbroken. We do ok tho, laugh and cry and still get out and about, we have been supported but every piece of equipment but no one to help. Care is needed day and night and this has been so rapid we have not been assessed for CHC support yet. My problem is people, a family that are in denial and diminish constantly our reality, it is very stressful, I am trying to work and one daughter is covering some days but nothing formal. We have occasional long stay helpers who I think mean well but constantly re arrange our house not understanding that we have everything in place to support my husband to manage the little he can and to help me when delivering care. Today his sister moved him to his old comfy chair which I couldnāt get him out of to get him into bed and feeding rubbish and alcohol which he aspirated (he has a PEG feed which we mainly need for fluids). We have worked so hard to keep him safe and free from falls and although I am really clear on how to do transfers and other things, I am ignored and find him quite distressed when I have been out trying to work as he doesnāt feel safe. Iām still working to try to pay for everything weāve had to have done at home.
