We have been going through a very tough time recently with my mum as my father, who is her primary carer had a fall and is unable to care for her. As I work, live in a town house with loads of stairs and have young children, I am unable to look after her either and we have had to put her into respite care for the first time. It was truly the most awful thing I have ever had to do.
My father had his fall while the family were away for a week to give him a break. While he was in hospital, there were 4 adults and it really opened our eyes to how difficult it is to care for my mum 24 hours a day. After 4 days we were ALL exhausted and at the end of our tether.
My mum needs someone with her all the time as she will stand up and fall if she is left alone. She seemed to be constantly awake and restless during the night and got up to the toilet at least 3 times so the person on duty got no sleep at all. She fights with the covers all night, trying to get comfortable (I think!) or could it be restless leg syndrome??
She spills everything, needs feeding and taking her to the toilet, lets just say that it is traumatic! She is almost completely unable to communicate and it can take hours to try to understands what she wants. The most difficult thing to deal with though is her angry outbursts. She screams and strikes out at us when she gets frustrated and she demands almost constant attention.
She is hot, cold, needs fanning, needs her jumper on and off etc,etc. She also seems to be in constant pain (shoulder, legs, hip) I think the latter is from falls she has had.
I am sure that this is nothing new to anyone caring for someone with PSP, but I just wanted to be sure that there is nothing else going on. We are so desperate with these hot flushes she has that we are going to ask for HRT for her just in case it helps.
None is this is new to me either, except the incredible stress and exhaustion of dealing with it 24 hours a day as opposed to for a few hours a day. It opened our eyes to the fact that my father cannot possibly continue to do this on his own any more. At the moment, 2 carers come in the morning for half an hour to help my mum wash and dress, but he has no other help.
Is it time to get more carers in? Or are we just being wimps and should be dealing with it better? I don't believe that we are giving my mother the quality of care that she deserves as we aren't trained and we get so impatient with her.
It all just feels like a great big emotional mess at the moment. I can't bear the fact that my mum is in a nursing home for respite. I worry about her constantly, but if she is with me, it is even worse.
I am letting off steam here which is helpful in itself, but any advice would also be so gratefully received