On Easter Monday Des's brother finally escaped the pain and died from cancer in a hospice where they really took good care of him and the family.Des sees no logic in his death when Des would welcome it.We will go to the funeral on Thursday if nothing changes.
Monday we are to be interviewed for CHC by a new social worker(unfortunately she retires soon) thankfully the DN is an old friend by now.I will hope not to get too emotional but the questions all make me feel I am blaming Des and we all understand PSP needs to answer for his failings.He is quite aggressive now and is trying to maintain control,so I must not attempt to drive him without help, last time he grasped my left hand and I was unable to change gear, so dangerous but he is unaware how dangerous that is.
The local senior mental health have become involved but despite 2 drug trials we are definitely not calmer, we await the 3rd with my fingers crossed.I so hope it does not cause hallucinations Life is hard for the two of us but much harder with others seen only by Des.
Like NannaB we try to find humour and after getting really mucky hands following a "pant" accident I told Des he had farmer cuticles He has always loved puns and I was rewarded by a laugh quite a rarity now.
A strange HCA came one night and after a new wound was dressed told him he could go to ByByes.I would have understood him punching her but he was too tired.
Fingers crossed for me PSP Carer friends
Px
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loppylugs5
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It's sad to lose any family member, especially when they are the same or younger generation. I hope you manage to get to the funeral.
When the CHC interview takes place, don't forget to tell it how it is on the worst day. It sounds dreadful to voice all the awful things that happen but the panel don't know him and unless they see everything that happens in print in won't register that he needs continuing care. If you can leave him on his own, he isn't getting continuing care, if he can do things for himself without getting himself into danger, he won't need continuing care. Make sure they know how dangerous he is in the car. I emphasised that C would take his seatbelt off at any time and even attempt to open the door. When they send you the report, make sure everything you want to say is in it. If not, add what you want the panel to know.
I'll be thinking of you on Monday and hope it goes well.
I agree with NannaB. Make sure you tell every strange, dangerous situation you can think of. Definetly the car incident, the pant accident and all the aggressive behaviour. Don't think you are protecting Des, by keeping things quiet. Or running him down, by speaking the whole truth. Remember CHC. Is to help people with complex illnesses, so make sure they go away knowing just how complex PSP is and how unpredictable Des can be.
When we were awarded it, it was a huge relief, not just because I don't need to worry about using all our savings, but it's the CHC team that have to fight to get you extra help, as the very nice lady said, she is responsible for S now, not just me. That alone made me feel not quite as alone!!!
Yes I agree with NannaB and Heady, we got CHC in November last year, and I copied all the notes I put in the diary, it was such a relief to get it, be honest and tell them everything, you must tell them as NannaB and HeDy said about all the bad things, be very Honest they might not have come across someone with PSP tell them how it really is. Good luck Yvonne xxxxxx
A difficult situation when another family member passes away and Des has a different perspective yo other people. I hope you can get to the funeral to say your goodbyes. I also hope the interview goes well and that you are awarded what you are entitled to, best of luck. Kate xx
I was very disappointed today although they told me we now have it , not in writing though the care company told me what they haven't allowed , still the same as before Carers three times a day and four hrs of respite . plus two hours extra respite .. Big deal . I had asked for 9 hrs at least wish I had added for more . In first place .
Well I got through all the questions without sniveling so fingers crossed they put our case well and we get more help.
Des has had a hair cut and I have shortened his suit trousers so he will look the best he can in respect of his brother at the funeral.There will be folk there that have not seen Des for a few years and the change will be shocking for them.There are still an uncle and some aunts who will be so saddened.Thanks for all the good wishes everyone Px
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New to PSP and to this site-not so new to PSP symptoms
A question to the experienced.
He said, "I'm dying today."
A very stressful day!
