Thank you all for your wonderful replies today .. I honestly feel less on my own now!
You asked about my mum .. Well she is one of a kind really ... Always has bust a gut for everyone and anyone ... Gentle ... Caring .. A wonderful mum to her three children ... Mixed with a good sense of humour! She is just 75 years young ! She is having difficulty now with her balance and needs help with walking . Her eyesight has deteriorated rapidly and she feels dizzy all the time . She has no energy . She lives in maghull which is outside Liverpool and I live 100 miles away so I have her to stay every two weeks or so for a week and then take her home. My brothers who live close by then see her as much as they can but they have young families . She is on her own. We are just now looking into the fact she is needing more help and how to go about it! ... Only want what's best for mum! Xxxx
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1941mary
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What a beautiful lady...she looks like someone you would like to have a conversation with....has opinions , doesn't mind telling them, but always mindful of others feelings.
I read where she is alone....get your healthcare on board right away. Kevin1 is a good resource for all questions etc. just go to his post on this site...It's hard to imagine her getting worse than she is but soon she will not be able to be left alone...most of us were already retired so that was good however that also means that the carers have extra strain in a time of life when things of yesteryear are no longer doable.
As for me and my husband we are in our 50s and I'm able to most things.....so is he....well.... though he cannot see well and cannot walk without excessive support...When I was still working, B stripped the car of its paint on both sides trying to park around posts! Then he started using wrong things to support himself ie slamming doors on fingers trying to get himself up from a fall... etc. and though he is cognitive...figuring out how to do things that are common place became more difficult...
I don't want to scare or depress you but as you know PSP is progressive. If you have a little planning time for her to get situated with appropriate care, then please consider it now...
that's the physical....now there's the emotional and she may start doing things shed never done before....aggravation! You have to remember the stuff that she does now may be because of PSP not her. Laughing,/crying maybe come rather uninhibited....
And what about your emotions? and your exhaustion, and confusion, and anger and dare i go on....one thing that we can help you with is that we are hear for you ...and so is one other...and that is the comfort which God can bring...I find my comfort in the scriptures of the Bible...Praying to the Lord and beseeching strength and guidance is so what He is here for.....so pray daily, lean on Him, have faith that each day provides a new perspective....
May you find that strength and comfort that the Lord promises to those who seek it...
AVB
Be of good courage, and He shall strengthen your heart, all ye that hope in the Lord...... Psalm 31:24
But the God of all grace, who hath called us unto his eternal glory by Christ Jesus after that ye have suffered a while, make you perfect, establish, strengthen, and settle you . I Peter 5:10
What a beautiful mum you have!! As time goes by your mum will need more help, how is she with washing and dressing and feeding? Re help she may qualify for chc continuing healthcare, which may involve carers at home or maybe going into a nursing home....do you know about chc? Does your mum have a neuro team?is she a patient of a local hospice? Have you contacted the Psp assc? You sound like a wonderful daughter, that just wants the best for your mum and I totally understand that, living 100 miles away must be very hard?! Keep posting and sharing, that way, we'll all help as much as we can!! X
Thank you Satt2015 , no I don't know about chc but will look into it today . I have been in touch with the PSP association who have been a real help ... Emotionally too. They organised for the Dpp to come and access . So along with my brother she had some one fill in forms. So she gets a little help financially . We are now well aware we are going to need lots more help and looking into this. Mum is too and just keeps saying "I don't want to be a burden" she never would be! We will always do the best we can for her . she had had a lovely day yesterday my brother had taken her out along the sea front at Crosby ! She loved it!
Bless your mum, my dad always says he is a burden too, which he isn't! Chc is where the nhs pay for all your mums care at home or otherwise, it's not means tested but the initial process takes place with a district nurse or a member of the neuro team or I believe the hospice, it's rather complicated and drawn out, but Kevin is very experienced in this and equally I'm happy to help you too as I've received an amazing amount of help from like ads of people on here! Personally I think it's vital to start this process! My dad was awarded chc in May this year and has carers 4 x a day now, 2carers at a time plus we get respite of 4 hours twice a week! I'm pleased your mum had a lovely day out!! X
Your very welcome Mary! Do you have district nurses involved or a neuro team or hospice? They will start the process otherwise speak to your mums GP and ask who can get the ball rolling? Does that help? It's all nhs based x
Thank you ... When I was at Appiintment two weeks ago with mum seeing neurologist he said he would send letter to her Dr regarding care but we haven't heard anything . Unfortunately she never has the same Dr !! So I'm guessing I need to ring the Dr surgery to chase this?!!
Morning.. I have rang the Dr surgery and requested the Chc assessment for mum . The receptionist hadn't even heard of it so ice requested the mums Dr rings me . .... I have a feeling this isn't going to be easy ! But will fight all the way for mum . Hope you have a good day ☀️
What a beautiful woman. It sounds like you have started already to consider what happens next. The PSP Association were and are a massive help to me when my Mum was diagnosed with CBD in April. The information they sent me enabled me to be well informed and armed when dealing with social services, OTs, GP etc. I found mum issues were taken more seriously and I wasnt going to be ignored by them or dismissed. It is a battle to get what you are entitled too sometimes, well all the time in our case! Forwarding on the psp association publications to people helped them to understand the complexity of the condition and thst it can change quickly.
Mum now also goes to the local day unit at the hospice. She was reluctant as she lacks any confidence in herself but loves going now and it gives me a few hours break too.
Finding this little group of amazing people has helped enormously as the experience and knowledge is far beyond those of professionals as live it every day. The advice I've received has been priceless when I've not known what to do. Any questions fire away in here.
It is so hard seeing a loved one suffer and progress, the emotional toll is hard. My Mum also worries about being a burden but she can't be left alone at all now since last year. She does now live with me but we have 4 calls a day of carers as I can't physically do it for personal care and toileting. It has taken a long time to get in place and was only really done as an emergency in end as she ended up in hospital in March so wasn't discharged until care in place but still taken until last. Month to get full package in place. Get the wheel moving now to get help and support in place. We are now battling trying to get chc funding as been turned down but I still can't face doing the appeal. Luckily have 6 months too Lodge it!
I'd also say any support that is offered from professionals grab it and then if it isn't for you then you can stop it. I've found the more people you connect with may lead to that one person who really does want to help and is a little gem.
Nice picture, hope she is able to enjoy the outdoors still and live independently with family help. While this window in PSP holds she needs to make decisions and actions.
Most important is to get Power of Attorney so that you or your brothers can look after her as PSP holds. Kevin1 has good article on applying for LPOA without going to solicitors.
Also contact or join PSPA. There is a good group meeting in Liverpool and the PSPA Support worker in North West is very good at interaction and helping point you and your mum in right direction also able to answer your many questions on PSP.
Has your mum had contact with an OT (occupational Therapist), can help with aides and adaptations for her home. Physiotherapist useful at early and middle stages. Speech therapy (SALT) team required, get your mum's GP to refer your mum. You may find the GP has little or no knowledge of PSP the condition and its progressive nature. PSPA will be able to provide you with literature and summary cards for the professionals to explain the condition and symptoms.
It is a terrible condition which does not get better your mum and your family need to realise and accept the future and prepare now for the coming frustrations.
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My mum my world
My mum is also free at last. Thank you for your replies.
PSP has taken my mum away from me.
My darling Mum
