I was recently diagnosed with lung cancer and having to care for Tony as well as deal with the effects of chemotherapy, etc has proved very difficult. As my daughters both live too far away to be on hand to give practical help on a regular basis, we had to face up to the fact that I was not well enough to care for Tony. Sadly his condition has deteriorated considerably and it has been extremely challenging to care for him. We are fortunate to have secured Continuing Health funding, otherwise I don't know what would have happened. I just hope that his new Carers live up to expectations and requirements for this horrid illness. Fingers crossed he will be well cared for.
Good luck to everyone - Carers and sufferers of PSP. I just hope I have made the right decision.
SuzieQ
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SuzieQ
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Don't beat yourself up about the extremely difficult choices you have made (Yes, I know better said than done!) Why? Because the best decisions are those made with knowledge, involvement and resources. Unfortunately in the past with another family members illness- I'd made the mistake of working hard on the hopeful pretence that 'some sort of help would be there when the circumstances were at a point of collapse' only to find all doors for support firmly shut. Circumstances that I never want for anyone else to even remotely revisit!
God bless you, SusieQ, and Tony. I don't see that you had a choice, my dear. Somewhere, inside Tony, he knows that, too. Please be kind to yourself. I'm sending up prayers for you both. What a hard, hard life this is.
My goodness, of course you made the right choice from the outside-looking-in. I do appreciate how hard this choice must've been for you. I'm amazed at your strength and courage caring for hip up to this point. Now it's time to take care of you, too, Godspeed.
It's a hard decision but must have been the correct one. You've got to think about yourself now, howerver hard it is. When my husband was first diagnosed he asked me to promise I wouldn't put him in a home and my response was, " I will look after you for as long as I can but we never know the future so I can't make promises".
hi nanna b yes it was a rare experiance to top and tail and i think im a bit to old for it now i was not chuckling at it though it was a long night believe me but it was ok for 1 night that top bunk looked a long way to fall out of as the train was going clikety clack clikety clack hang on peter you wont get back\\\ but it was nice on the train i enjoyed it\\\ im still trying to get used to this new system im afraid i am one of those that do not like change but i know i have to to survive in this world of computers and ipods and smart tv which we have just bought it looks super good and that' s just the box it came in noiw all we have to do is learn how to switch it on and we will be ok until we want to look at 3D and run a computer through it but thats change its great isnt it i think the older you get the more frightened of using things you get i remember when i was in Germany in the army i bought my dad a radio cassette player but i learnt -afterwards he never played it unless my sister was there to put it on and turn it off for him not because he was lasy he was just frightened of using it on hes own oh well i had better go now i have got to graple with the tv see you nanna b take care have a great day peter njoines queensland australia psp sufferer and tv fixer
SuzieQ - you have my good wishes. When my Tony came out of hospital after a chest infection, he went into a care home for palliative care in the January and was well looked after by the staff - they kept him comfortable until he slipped away last December.
I was lucky to be in the position of going to see him several times a week, so hope you are able to do the same. I think you will find life easier once you get your nights back.
Message to all carers - you need to look after yourself to do the best for the sufferer. I'm still not sure how much Tony could appreciate the toll it takes on the other person.
Thank you to everyone for your good wishes. Tony is settling in well but unfortunately a few days after he went into the Nursing Home he developed a problem with hs catheter and had to be admitted to hospital. He stayed in hospital for 6 days then went back to the Nursing Home. I have just left him again and he is fine. Fortunately, it only takes 10 minutes by car from where I live so I can visit him regularly. Due to my treatment I get very tired but it is nice knowing that Tony is in safe hands while I rest. I miss having him at home with me, but after only a short while I know that we made the right decision. I would say to any of you, don't feel guilty having to ask for help. We all struggle on caring for our loved ones but there has to come a time when enough is enough and we must ask for help. Love and prayers to you all. SuzieQ xx
That is so good to hear that Tony is settling into his care home . I can imagine how hard it was for you especially feeling as you must be yourself . My precious had a stroke and went straight into a nursing home at the same time my husband was diagnosed Parkinson's '7 years ago at the age of 70 . At the present time I am just about managing /coping so it is helpful knowing how others are and have been doing .
I cannot begin to imagine how hard for you it is now . Although we all think about it happening its not something myth can prepare yourself for fully is it .
Good luck to you Suzieq and may your treatment go well
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