- Information & Support
- Get Involved
- Patient and Carer Voices in Research
- Raise Awareness
- Join Us
- About us
- PSPA Shop
“I’m lucky in that I have excellent backup. I don’t know what I would do without it”
Carol is a carer for her husband, Mick, who is living with PSP. Carol shares her experiences of being a carer and how PSP has affected them both.
“Mick was an outgoing person. He always liked gardening and playing bowls. We first noticed symptoms five years ago, but he wasn’t diagnosed with PSP until two years later. Mick had been gradually getting more forgetful and we wondered if he was getting dementia.
“Over the last six months there has been a drastic change in Mick. He’s gone downhill in every way. He no longer goes outside, even to the garden. He sleeps for long periods and likes me to be there constantly. He’ll stay with our son for an hour or so, but that really is his limit. I haven’t been into the town centre for nearly two years. I now rely on my daughter and son to go in for me. I can’t leave the house for any period of time because he needs me. It is hard to describe how difficult it is.
“Doctors all agree that Mick is at the end stages of PSP. So we are taking each day as it comes. The funny thing is to look at him he looks the picture of health, but sadly he is far from that. He is struggling with his eating and his swallowing isn’t good. He can’t do anything for himself and relies on me to feed, wash, dress and move him. My own health and well-being are very much on the backburner. My main priority is him.
“I’m lucky in that I have excellent backup. I don’t know what I would do without it. Our GP is fantastic and popped in to see Mick even when she was on holiday. PSPA’s Helpline is another vital source of support and are always available with information. We also have a good care package in place and this makes such a difference. They come in three times a week for 30 minutes in the morning. The care agency is excellent and went out of their way to learn more about PSP.
“I bend over backwards to make sure we have the same carers. Mick gets very agitated now if strangers are in the house so it is important he is familiar with his carers.
“Mick’s deterioration has been so rapid social services are now talking about increasing the care we get, including night sitters, so the health authority will be over to do another assessment. I don’t want carers during the weekend. I want to do that for Mick because I know that is what he wants.
“I feel like I’ve already lost Mick. You can’t have conversations with him anymore. He is totally vacant and just looks straight through you. The other day, his eye looked funny. It was like he couldn’t see and he was feeling my face to check it was me. I told him it was okay and that I was there. He hugged me. I know my being there reassures him and he knows I will always look after him.”