My Mum is 82 and for 3 or 4 years has been showing signs of dementia and apathy. She began to have backwards falls. In addition her right hand (and since her whole arm) has become spastic and terribly painful. She can't move it at all now and it remains tightly clenched under her bosom. Her left hand is also becoming immobile and she can do nothing for herself. Recently, she has started blowing her nose frequently when she eats and she complains that there's something in her back tooth that is making her gag. (The start of dysphagia?) She also has a restriction in her field of vision and double vision when looking close up. This is quite recent too. She can't move her eyes upwards and has trouble opening her eyes without raising her brow.
My Dad (83 and also ill with sciatica and a lung problem) is her carer. My sis and I go round every day but Mum needs much more care than she's getting. It is dangerous to leave her with Dad and we (and neighbours) have had to rush round to rescue her after falls. However he refuses to have anyone in the house except the two of us.
The neurologist suspects one of the Parkinson's+ and reading the main four, I suspect PSP or CBD from her symptoms. She is on Aricept from the memory clinic, which doesn't seem to have helped and Half Sinemet which has also made no difference.
So that's me. I look forward to talking to you all and getting to know you.
Thank you for letting me join x
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TheJackster
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Welcome to the site. From your post I'd guess PSP over CBD. I am no doctor nor any medical training but the backward falls and eye issues point to PSP.
You dad will need help. If you let us know where in the world you are, we can tailor responses better.
Based on the word "MUM" I deduce you are in the UK. I am in the USA. There is much help and support in the UK. You should be hearing.
Because medical help and public govt support is different in different countries I encourage you to put more information in your profile. It will help others to help you. What is your COUNTRY?
Welcome to this site it has been an inspiration to me as the primary carer for my wife who has PSP. Your dad (and perhaps you) must get Power of Attorney over your Mums finance and medical needs as a starting point. Secondly he needs to involve the community health team (Nurses, Occupational Therapists, Speech and language Therapists etc). These should be activated through their GP. We are fortunate that we have an excellent Community Matron who began the CHC funding process which resulted in my wife's care being funded. I decided with her, when she could communicate, that she should remain at home until she passes. I am 68 years old and it is extremely hard work without help. It is certainly beyond the capacity of an 82 year old with health issues. Get the social services involved because they should also assess her needs and depending on your Mothers financial circumstances, may provide a care package. Finally Hospiscare and Marie Curie have supported me from the beginning. Marie Curie provided a night sitter at least 2 nights a week when my wife's condition was "changeable". They now provide a day sitter for one afternoon a week which enables me to get shopping.
You may already know all this, if so I apologise but you will need to be determined to get your Dad the support he needs to care for your Mum.
You need to get a diagnosis from a neurologist but it does sound like PSP. All very worrying for you but without a diagnosis she can’t get the right medical help!
Sorry to have to welcome you, but you are very welcome here, this site is an absolute life saver.
Agree with Rob, whatever the diagnosis get Power of Attorney - Health and Finance set up, I would suggest so that you & your sister can run both their affairs (not just your Mum's). If you are in the UK make sure they get Attendance Allowance (there are two rates, so if on lower rate ask for higher rate), also you can get Council Tax reduction for mental impairment (this was very easy to get) - neither of these are means tested benefits.
Talk to the GP, do you have Community Matrons in your area? They are very good at pulling different disciplines together and making sure the right specialists are involved - sounds like a SALT (speech & language) assessment would be good and an OT assessment to see if there is some equipment that could make life easier. These people will also talk to your father about him needing support and I certainly found with my Mum she was far more accepting of having carers in when a professional suggested it rather than her daughter !
Keep posting and let us know how you get on and what ever other questions, queries, frustrations you like to share.
Welcome sorry you have had to join us but this is a great place for practical suggestions and info.
Whatever the ultimate diagnosis your parents are going to need help. We started with a slow introduction just one carer session per week gradually increasing as needed.
As others have said lots of support out there and physio, OT and SALT assessments would be really helpful in terms of equipment eg grab rails, walking aids etc to help maintain movement .
I agree, your Mum's symptoms do suggest PSP and if confirmed she will need more support than your Dad - even with the help of you and your sister - is able to give and he will need support as well.
My brother (who has PSP and is now in a nursing home) initially refused any help other than from family and, as his condition worsened, every attempt by us to gently persuade him was met with resistance. But when told by his GP that accepting help would not take away his independence but enable him to remain independent and to live at home for as long as his health permitted he did accept help, albeit at first reluctantly, and he grew to like his carers (well most of them!) and to look forward to their visits and to recognise the benefits. Eventualy he did have to move into a nursing home - it was the only and best option - but he had precious months when he was able to enjoy livng in his own home which he would not have had without professional support and care.
Perhaps your Dad could be persuaded by his GP to accept the help he will need to care for your Mum?
With regard to everything else, Lasting Power of Attorney, Attendance Allowance, Continuing Helath Care and myriad other things you will need to acquaint yourself with if you haven't already, you will find a lot of advice and guidance here and also much needed support and kindness, empathy and understanding.
As someone said to me when I joined, it's not a group any of us want to belong to, but I'm so grateful every day that it's here.
Hi. Welcome. You now have an extended worldwide 'family' who will listen to your concerns and rants and understand. I agree with Dadshelper's reply. My husband has CBD. Good luck AliBee x
I'm overwhelmed by this kind and helpful response! Thank you all.
We have full Attendance Allowance and Council Tax reduction. Some time ago, quite by chance, we did the PoA for health and finances (PHEW!).
We have had OH visiting (grab rails and walkers are no good when Mum can't use her arms so we are now signed off), plus a Physio who has been great (but we are now signed off). I hear what you say about SALT, but Mum can't really follow instructions for more than 30 seconds. At the memory clinic, they gave her a minute to name as many animals as she could. She named four and then lost interest.
Thank you for all your replies. I know you are going through the mill too, so I am all the more grateful for your time xx
The backward falls and inability to move the eyes in a certain direction are hallmark traits in PSP. CBD has it's own, alien limb phenomenon being one. They are both progressive and can share many similar symptoms.
Thank you. Mum has a useless arm that is constantly in spasm and consequently very painful, but it's not a classic 'alien arm' as it doesn't move. I am going to ask if a Botox injection might help stop the constant cramp. However, Mum can look down, just not up. Looking down is helped by her neck/spine that means she's so bent over that I could put a cup and saucer on the back of her neck! She can't move her eyes upwards or follow an object side to side (without moving her head).
She also has double vision which disappears when I cover either eye and I believe she has a restricted field of vision, particularly on one side.
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PSP eye problems
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Mum's progression of PSP
