CHRISTINE’S STORY
Caring for a family member can be a really rewarding experience. At times it can also be extremely challenging and take its toll, physically and mentally.
Recognition and understanding of how PSP & CBD impacts the whole family is important as Christine Nunn from Ipswich has experienced whilst trying to get help for herself and her husband who is living with PSP.
“Investigations into Chris’ symptoms led to a diagnosis of Ataxia in 2019. Further tests over the next few years however led to a new diagnosis in February 2023 – PSP.
“It was a very worrying time, but our GP surgery has been pretty good. We were also referred to Dr Graham at Ipswich Hospital who organised support from the local hospice, a Parkinson’s nurse and speech and language therapy.
“Chris took a real downturn in August and after a desperate call to the local community team their REACT team was sent in. For ten days, there was a flurry of activity, lots of different people coming and going. I didn’t really know where I was, it was a lot to take in and sometimes they didn’t give us warning before a visit, they just turned up.
“Despite feeling overwhelmed, the support was wonderful. They assessed the house; putting in rails and sending a commode, they sent nurses to watch Chris overnight (I was exhausted as he was getting up five or six times), and we were awarded some care support too. This was council funded for six weeks; half an hour in the morning to get Chris up and washed and then an odd couple of hours twice a week so I could get out and have a bit of time to myself.
“After those six weeks though, the council funding stopped. So, we’ve been self-funding ever since. I have reduced the care a little. It is currently enough, well enough with my support. I feel lucky I am quite able in myself.
“I wasn’t going to apply for Carers Allowance as reading up on it I didn’t think I would qualify for this financial support. However, the React team asked someone to make contact to sort this out. The assessment was over the phone, around six weeks after the referral was made. I didn’t hear anything then out of the blue I received a lovely letter saying I was entitled to carer’s allowance and confirming how much I would receive. That was great to read but in the next sentence it was all taken away, explaining since I was drawing my pension, I wouldn’t receive anything. I had to read the letter several times to make sense of it. I still find this unbelievable.
“Overall, we’re upbeat but occasionally it does all get on top of me. I felt quite low at Christmas.
“I did apply to a local counselling service but after completing a questionnaire and a short chat they advised I wasn’t bad enough to warrant this support. I felt a bit unheard. I don’t think people fully understand the impact PSP can have on your lives. People pop around and see Chris sat in a chair looking bright, but they don’t see the full picture.
“My GP suggested a care home for respite care. But it meant I would have to organise and pay for this myself and getting dates for the respite tend to be a bit short notice.
“PSPA’s Carer’s Guide and Support Groups have been a great help. One lady I stay in touch who lives in my area, has recommended someone to give me some respite care at our house and I can book it in advance.”
