I have only posted once before, I'm not big on any form of social media, though i do read about others experiences on the forum.
My father was diagnosed with PSP 5 years ago, since then i have seen his condition deteriorating and each day my heart breaks a little more. Since being diagnosed my wife and i moved in to my parents house and looked after parents to the best of our ability and have since had a gorgeous little boy. Our lives are nothing like our peers who can go on holidays, meet up with each other, do normal things without having to think of anyone else. I just wanted to offer my gratitude to all of you who have posted and have made me feel that i am not alone in this struggle, made me aware of struggles i am yet to face and offering advice to each other. This is a wonderful community of people whom have sacrificed so much for those that they love and even though those that are suffering with PSP/CBD cannot always express their love and gratitude to you, i know and you know their former selves would be very thankful for everything we are all doing for our loved ones.
I am going try and post more, however I'm not so good about talking about my feelings but i will try.
Thank you all
Akshay xxx
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Akshay72
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Sounds like you are doing an amazing job. Don't forget to make time for yourselves too though - carers need to be kind to themselves as much as they can so you can do the best job of caring.
I have sent you by PSPA -Chat private mail offering the document with our experiences over 8 years with PSP as well as some ideas about caring for caregivers that I think is important.
Our lives can get put on hold for many years when we are caring for someone with one of these illnesses and for most it will be the toughest period of their lives, that will invariably leave them feeling totally isolated from the rest of the world. You will often be exhausted mentally and physically but in a strange way it does become normal, well at least a new kind of normal.
As you already know, folks on here are all at different stages of their journey so there is a wealth of knowledge on tap. Try not to look too far down the line as to what might be coming next, try to live in each day and make the best of that day. You have your gorgeous little boy so you have your ongoing daily dose of joy. No doubt you have seen Bazooka's posts, quite inspirational, as are each and everyone on this site, all doing the same journey but doing it their way. I have friends who have been dealt a lifetime of caring - so much respect to them. I always say that 'you never know what is going on behind closed doors' but behind those doors there are many, many unsung heroes.
Some people are reluctant to post on these forums for reasons best known to themselves. There's no rules, Akshay; if you feel the most comfortable just reading and get comfort from what others are saying then that's the route for you to go. Not everyone is good at or indeed even want to air their feelings but just popping in and reading can feel like a sanctuary and this is what these forums should be about. It's the connection with others in the same boat that matters, even if you don't want to contribute, and the relief you get from knowing that you are not alone. Don't forget also, if you want to pop into the site and just share something lighthearted or even amusing, that's fine. There's enough seriousness in our lives and something to break the chain is a tonic. Sew Bears has been keeping us updated with the pictorial of her hummingbirds - just delightful.
Remember also that this period of your life, sadly, will have an end and when that comes you will be comforted in your grief by the love and care you gave to your dad and you will have no regrets, as many will endorse.
Well done Akshay, be proud of the precious gift you are giving your father, your unconditional love, the greatest gift of all.
Well you did a very good job today in expressing how you are feeling and I know it will help others too. So glad that this site makes you feel that you are not alone. That is so important. Your little son must be a joy to your Dad as well as you. AliBee
Don't be shy to express your feeliings and frustrations here, it was being able to rant, cry, laugh and generally get things off your chest that helped me through. Being able to do this saved many of us who have been on this journey from feeling isolated. It's also a great forum to seek advise on how to deal with the various stages of the disease. You must be a very devoted son to give up your life to care for your mother, I salute you for having the strength to take on this arduous task especially with a young family. Well done.
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I love you Dad
Love you lotses dad xxx
Thank goodness you are all here!
