My mum has been diagnosed with PSP and to be honest, i don't really know what to think about it all. The hardest thing I find is dealing with the change in personality, she is no longer the mum I knew. Conversations are disjointed and difficult and it feels like we aren't as close. Even though i 100% know this isn't her fault. I don't live close by so feel guilty that I can't be there for her. I find it hard not knowing how this will progress as theres no guidance due to the illness being so different in anyone and really I just don't know what to expect. Thanks for reading this post , i just wanted to get some of my bottled up feelings out there. x
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sparkle63
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Use this site tor information and support for you and your mum, you find out things here that nobody else knows, loads of practical advice and the chanc to share your thoughts with people who really understand your plight.
If there is sunshine in your day ... this is it - this forum will become your “go to” ... all of us are virtually sitting around the table with a cup of tea / coffee, ready to support the good days and those bad days.. you will have.
Life is going to change with this diagnosis, and it is your choice how you are going to approach this new reality.
My sweet Momma is in her fifth year of CBD - it started with stroke like symptoms. Mom was the “most sought after southern chef” in the family, always cooking a fabulous meal, and that seemed to change over night. One day she looked at me, and said, “I can’t crack an egg anymore” - I will never forget the look on her face.
One day, six years or so ago, my brother called me and was concerned with his conversation on the phone with mom. He called her daily while driving home from work, they would talk for over an hour just about everyday — as you can imagine, he’s heartbroken at the new reality.
Things will change, but somehow you have to reach deep down in your heart, and find the endless joy that your mother has brought you over the years of raising you, and listing those sacrifices she made as a Mother - remind yourself every day that she IS still there .. and try to bring joy to her life anyway you possibly can! 💛💛
Welcome to the site. I'd recommend getting someone who is close to you mom power of attorney and power of healthcare while she can still voice her wishes. Ask any questions or rant if need be. There is no judgement but there is a lot of good advice here.
That’s me! I have become that. Well the paper work is all filled and it’s just got to be made official by the court. It’s not really a nice feeling to know that I have that responsibility but I know it’s important that I do , if that makes sense.
So sorry that you’ve had to join this site. My husband has PSP and initially I wanted answers and he has wanted to know what stage of the illness he is at. It is so natural to want this and to want to know what we can do or how we can fix things.
Sadly you have to let all of the above go. This is a progressive degenerative illness. That sounds negative, but once you stop seeking answers and accept the disease the more you can live with it. My husband isn’t the man I married, but through acceptance of this illness we have found a new level of closeness to our relationship and a new understanding of just how precious life it and how we have to savour every minute.
Find practical help, as recommended, sort out the legal side, ensure you have the right medical support - we can point you in the right direction. But most importantly learn to sadly live with this and you will find renewed strength and take pleasure in special moments and that you have with your mother, create special memories and live for each day.
Hope this helps and know we’re all here for you. Xx
I do that, but it’s difficult as I can see Mum struggles with conversation. So I do that once a week so she can see her granddaughter and me of course and then I message a lot during day and use snapchats. But sometimes her messages can be 1 worded or very snappy. It’s difficult.
Like you when Mum was diagnosed she lived over 3 hours away and I'm the sole surviving child of 3. At first we thought we could manage, she had lived in her home for 60 years, she had good friends nearby & helpful neighbours. But things changed, the friends were getting older & frailer themselves, the worry of Mum being taken into A&E and not knowing what was going on (data protection laws meant they wouldn't tell me) were all very stressful but the thing that really got me was if she lost the ability to talk, how would we cope, we spoke everyday on the phone. I couldn't cope with the thought of not being able to talk to her other than when I saw her. It was a huge decision for Mum to leave her home with so many memories but she bravely grasped the nettle and we moved her into sheltered housing 10mins from where we live 4 years ago. It still hasn't been easy, there have been plenty of A&E visits, Mum's communication is really poor but I see her everyday and a squeeze of the hand has come to mean the world. Deep down she is still the same lovely lady, she just struggles to express herself, sometimes the wrong words come out and if they don't "sound" like Mum, I question her & usually what has come out isn't what was meant, we've learnt to smile at these misunderstandings (it must be so frustrating for Mum).
Anyway sorry for rambling but what I guess I am saying is do think about the future and consider all options. Mum was never going to leave her home but if she hadn't moved North she would have been in a Nursing Home years ago. As it is she is in her own home, with her own things around her, choosing if the radio or tv are on. She has carers in 4 times a day and since I was made redundant I spend the afternoons with her. Her world has very much contracted but she still loves getting outside and even though she can't see very well she can still smell and hear & I witter away endlessly describing things to her - she probably wishes I would shut up sometimes. So your relationship will change but you can develop a different kind of closeness.
Good luck with things & use this forum, it is an absolute godsend to me.
At the moment I know she won’t move, she doesn’t want to and I understand that, as it’s her home and what she knows. But I think eventually she will have to move to be closer to me. Mum is the same she likes to get out a bit , a wheelchair should be arriving soon. The things she’s hating the most is being dependent on other people as she was sooo independent before. I am an only child too, so it’s hard. Mums just turned 60 and I’m 32 this wasn’t how I imagined my mums retirement
Hello Sparkle, Welcome to the forum, I'm just sorry you had to because of your lovely mum's diagnosis. She may not be the mum you knew on the outside, but inside she is still that person. As you don't live near, keep in contact and tell her how much you love her. Remind her of happy times you shared.
You will find lots of information and support from those who have and those who are going through the same as you. Feel free to ask questions, seek advice and someone will have an answer. Also don't be afraid to vent your feelings, good and bad, we've had them too, so nobody will judge you.
Thanks for this. I do keep in touch with snapchats and photos of my little girl everyday and I message too. I FaceTime or call once a week, as I think Mum struggles with conversation, she seems better in her messages if that makes sense as I think she can take her time to respond.
I find it hard voicing my emotions to her, mum has never been someone that expresses her emotions so it’s hard to do that to her. Plus at the moment I’m just seeing her as a different mum, I don’t mean that to sound horrible. I get married next year , and I try involve her in wedding chat as much as I can.
You are doing amazing and I understand it's difficult, especially when you are planning your wedding. Just keep on doing what you are doing, inside your mum is really appreciating it.
I'm struggling to come to terms that the man in front of me is my husband who was once very active, loved going out or having friends over for dinner, lots of chat, interested in what I or our daughters were doing. Now that's all gone.
The one thing I will end with is please don't bottle up your emotions. Write them down and post them here. You will receive lots of support and understanding and virtual love and hugs!! Take care, love, Nanny857xx
Welcome to the site no one wants to join but this will become you go to site for support information and advice.
My husband had PSP - he died in April this year - the personality changes were the hardest challenge for me- he was on anti psychotic meds for his last 6 months - this made a huge difference I only regret we did not start them earlier.
Lots of good advice given so far about legal affairs, carer support etc. Good to let people know the country and area as they may have practical hints and suggestions abut local support.
My mum also has PSP. I know exactly how you are feeling as I also sometimes struggle to recognise my own mother in her, but as someone else said, she is there just buried in this awful disease. There are so many things you will be coping with, if you want to talk I am very happy to have a call.
I keep a lot of stuff bottled up, but of late I’m not really sure how I feel about it all!
I a health care professional myself and so I have done extensive reading and relevant research about ge disease so I understand it’s all progressive etc. I just find it infuriating that you don’t know what’s to come and I feel mixed up that I don’t have my mum like I used to, if that makes sense.
That all makes total sense to me. I also work in healthcare. In a related industry so have read every available word written on it and even looked into the possibility of involvement in clinical trials but my mum is too old and too far progressed, poor thing. I am now struggling with wanting to hold onto her but also sparing her any further suffering. Are you in the UK? I have found the PSPA excellent. I am here if you need me or just want to chat to someone who understands xxx
I looked at that too! But there was nothing close by to my mum. Yep I am in the UK up in Yorkshire.
I really don’t know what I am finding most difficult, currently just all a little bit mixed up I think.
the future terrifies me, mainly because it’s out of my control and I don’t want Mum to have prolonged suffering, she won’t want that either I don’t even have to ask her that!
The whole feeding and swallowing is what I am dreading. And I worry that I won’t be able to be here when I should be because I have a little girl and a job here!! Arghhhh it’s just all rubbish xx
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 7.5 years in which we are living with PSP I have been collecting our own experiences and that of other members of the chat to offer this notes as a suggestion to PSP patients and caregivers. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the document with our experiences and our solutions can be useful, do not hesitate to let me know to send it by private mail through this chat.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
just lost my mum to PSP 
September 11
I don't know what to do
To all sons & daughters of PSP sufferers
