I have been very lucky, for the 46 years I have been alive I have had amazing supportive parents who have been my champions in whatever I've done.
Today I had some really good and exciting news and for the first time in my life, when I called my Mum (recently diagnosed with PSP) to tell her she didn't really grasp it although I do know she would be delighted for me.
Her cognitive behaviour seems to be considerably worse each week and it's devastating. I miss her SO much. I know we all take our parents for granted but I never expected this. Throughout the day I have had moments of just wanting to call her and talk to her but she finds it so difficult and I don't want to cause her any additional anxiety.
To make matters worse, this dreadful disease has caused her to be completely paranoid about my relationship with my lovely Dad so we have snatched conversations and mainly converse by email and I miss him too!
I'm sorry if I sound like a spoilt child, I'm very grateful for what I have had but I dread the day I can't pick up the phone to her and hear her voice, just makes me so sad.
Tomorrows another day but today I'm really missing my Mum!!! x
Written by
Katet68
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Hi Kate, I fully and utterly sympathise. I'm 42 and like you still need/want my parents to be actively involved in my life. This means getting the empathy over the phone when you really need it, which sounds like what you wished for today. I feel like I "lost" my Dad on that front probably about 2 years ago. We used to have such challenging direct conversations that I cherished as he was the only one who really told me how it was. Now he says hardly anything at all. The complete change in personality is what I find the hardest to live with. I am trying to find new ways of engaging with Dad to still get the "connection" we once had. I am thinking of you as I understand exactly where you are coming from. I hope for you that there are some glimmers of hope amongst the sadness x
Thank you for your heartfelt reply. I consider myself very luck to have had the wonderful relationship I have had with my Mum and continue to find moments of joy with her. I guess my biggest fear is when she can no longer/doesn't want to talk on the phone at all and being a 4 hour drive away, that feels too horrible.
I totally hear what you're saying about the "connection" that is so hard to come to terms with when you feel like you've lost it. I guess we have to realise it never goes anywhere, it just doesn't show itself to us.
I think for me the hardest, or at least one of the hardest, parts of this disease is that they are there but also not the same person. The loss is so protracted it is excruciating. The psychological changes are confusing and hurtful. My husband (PSP) is so extraordinarily jealous now of anyone I talk to,-- men women or children..He hated my time with my father and treated my father (who lived with us and had Parkinson's disease) horribly, sadistically. It was difficult to tolerate or control. You might think about not letting your mother spoil your relationship with your father. Think of it as a bad child who needs some strong limits set. It is hard with ones parents to take the grown up role and see them as diminished.
PSP has taken my husband from me and at times turned him into a stranger I don't like to be around. I need to remind myself what he was before and why I love him. Please keep writing; it is good to talk and write and also to read about this disease and dementing illness in general. It is also helpful to keep a journal.
You have my support and are in my thoughts, Oh and by the way..you do not sound like a spoiled child at all. You are in an almost impossible, insane situation and you are behaving sanely and compassionately.
Thank you Jill for such a lovely and supportive reply. It is the cruelest disease and as you say, watching your loved one seemingly become someone you don't recognise is just too horrible. I do know my Mum is still in there and I will keep in my heart that she has been and to me still is, one of the most inspirational women I have ever met.
Thanks for the advice, writing does help and I know how much this forum has helped my lovely Dad. Kate x
Hello, everyone. I have been reading this site for almost a year but not posted . My husband was diagnosed P.S.P. a year ago. I so agree with the problems you express about relating to this different person. At present the physical difficulties are manageable but adjusting to the loss of my stimulating, energetic,involved husband is hard. The developing parent/child relationship is not what we want but hard to prevent.
Its been a godsend to read everyone's comments and the information on this site is amazing. Thanks. Jean
Stay strong for the rest of the family. Your family and friends will be watching to see how you handle this very, very, difficult situation (PSP) hugs, Jimbo
It's interesting Jimbo, the umber of people who have told me "it's just as well you're so strong".....I don't feel it sometimes but I will find ways to cope and I will be there to support my Dad and love my Mum, I've been very lucky to have the parents I do and for that I will be eternally grateful!
Like you I would love to share news with my mum. My mum's symptoms two years ago were extreme with lots of usual PSPA symptoms but also excessive seemingly involuntary movement. It took a long while to come to terms with her symptoms. It is how I imagine grieving feels but with the added sadness of the person still being there. I don't think I have felt sadness like it and it was overwhelming. I can only suggest that you draw support from anywhere it might be available, this forum, friends, family, professionals, it may not feel like it but talking helps. I also feel I have taken the role of parent which is a strange situation to be in but I guess could happen regardless of Psp. Things have moved on for me but despite mum's ever worsening condition we do share good moments, my expectations of how our relationship might be have gone and I now take it as it is and do the best I can. Despite all of this we do share good moments and these are what I hang on to. My mum is still in there somewhere , her wicked/naughty grin and glint in her eye are priceless. Good luck don't be too hard on yourself and take care.
I agree with you, it's that horrible situation of grieving whilst the person is still alive and that feels so terribly sad. My Mum is also in there somewhere and although some times I struggle to see where, I know I am very loved and love her back tenfold.
Keep trying with your Mum - she is probably frightened and frustrated about what is happening to her, but deep down will be glad to listen to you and know that you care.
Mo, do you know what, that's what I actually hate the most is seeing my inspirational, strong determined Mum so frightened and confused, I almost can't bear it. I keep telling her stuff, how much goes in I don't know but I certainly care and will continue to include her in my life as long as is possible. Thank you for your support.
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