First time posting on here

Hi. I've been looking in on the PSP/CBD community on here for some time. I'm a member of carers UK but haven't found any cbd related help on there so I decided to join you guys. Mum has cbd and loads of other complaints, she's 84. She was wrongly diagnosed with parkinson's for a few years and got her diagnosis about 7 months ago. I've been her full time carer for the last 8 months. A fall caused a massive change in her condition at that time and I had to give up work to move in with her, since then she has lost the ability to do anything for herself. She is a full hoist, full feed, nursing bed the lot!! She is also totally blind and has COPD, it's been quite a journey. Mum's speech is now beginning to be affected and she has memory issues, she is on the whole mostly cognitively aware but likes to argue with me about being in another house, common, I know. I am an ex nurse and have worked in care for years, even so this is the hardest thing I've ever had to do. I hope to be of use, if I can, to others going down this road and to find an outlet for my own frustrations so that I can carry on this journey with her.

17 Replies

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  • Hello, Dizz58. Sounds like your mother us lucky to have you. Where in the UK are you? This site is great. I tried the US-based site first and found the administrator so inhospitable I left right away, then I found this place and have been grateful for it ever since. I have learned so much, and gotten such good support. I would bet you have a lot to offer with you professional history. Look forward to hearing more from you. Welcome! Easterncedar

  • Thanks for replying so quickly, I'm in a small town in the fens on the edge of Cambridgeshire/Norfolk. Every time I looked in on here before joining I saw how supportive of each other you all are, I'm glad I took the plunge. The disease itself is so difficult to deal with as you all know, although I knew in my heart Mum didn't have Parkinson's I'd never heard of CBD until Mum had a change of consultant. Her old consultant got quite angry with me when I said it didn't look like PD to me, but the new guy said cbd first time he saw her. As soon as I started to google it I knew he'd hit the nail on the head. She never responded to dopamine and only had symptoms in her right (dominant) hand for 2 years before it started to spread. I gather she's older than most so she's lucky in that respect but can anyone with this horrible disease be called lucky? Of course there's no certainty and I'll never know with Mum as she wants to go to meet my Dad with her brain intact. It's a shame as I firmly believe the only way this can be beaten is by research but there you go it's her choice. I fear I'll only be able to help with a few tricks of the trade, you guys and now me aswell are the experts, not the health professionals and everybody who has cbd/psp follows their own course. It's very much a learn as you go, an apprenticeship so to speak. LOL

  • Welcome Dizz58. I also worked in care in the past but I came home to my own house after my shifts. Now it's 24/7 isn't it, which is very hard. I'm pleased you found this site and look forward to reading your posts.

    Nanna B

  • Thanks, NannaB. Nice to hear from you. I've often read your kind and helpful posts on here, you're a treasure! In the first few months I didn't think I was going to cope, I never got more than 2 hour stretches of sleep, I was at my wits end. Now Mum can no longer stand it's actually easier (that's an awful thing to say isn't it?) I get to sleep more now as I only hoist her to the loo once in the middle of the night but I had to be very firm with her to get to this stage. She does sometimes have an unsettled night but talking books help her feel less lonely. It's better than a care home, being totally blind she'd be so confused.

  • I can't imagine what your poor mum is going through. To be blind is dreadful; to be blind and have PSP must be unbearable. I know what you mean about being easier now. I find it easier now my husband is immobile. It does seem an awful thing to say but unfortunately it is true. I put LBC on the radio if C wakes in the night. I put it on in my room as well and it is usually so boring I'm asleep in no time at all.

    X

  • Mum's CBD (they think, but who knows eh?) Love your sense of humour you are funny x

  • Welcome to the site, and yes this is the place to learn and let out cries for help or relieve frustration with so called professionals who have little awareness of the conditions PSP/CBD and try and put you in a box that fits their care schedule. But your mum sounds in a bad way with COPD as well as CBD the choke and coughing must be intense. I hope you have the proper support from NHS, social services and Marie Curie nursing.

    Best wishes Tim

  • Hi, Tim. Thanks for the welcome. Amazingly enough her swallowing has only just become an issue and only with fluids. Having said that SALT came 10 days ago when I called them and prescribed thickener but someone, somewhere has lost the prescription and it took me 5 days to get a reply from them to re-issue it. Needless to say I'm still waiting but the girl who saw Mum was great and gave some useful advice to help stop aspiration (double swallowing, throat clearing, dry swallowing between sips). So you can teach an old dog new tricks then. I have some support but no real help with care. I really wish I'd pushed Mum to do LPA while she was still well but she didn't want to do it. She was awarded a direct payment but without the LPA I couldn't open her a bank account. It's taken months to sort out but I've now had a few 3 hour breaks to go and see friends. Funny, I suppose, her payments are supposed to enable me to have 28 days off a year, she needs 2 carers as she's hoisted and doing the sums it covers me for 48 hours a year. I bet that sort of thing is common.

  • You certainly have a huge responsibility to care for your Mum, she is very fortunate to have a loving daughter with nursing expertise, which should help enormously. This site is a great support and the advise and knowledge I have gained has really helped me. Your input will help others on this site to cope with this dreadful disease.

    Kate x

  • Hi, Kate, I'm still her youngest daughter so, obviously, I don't know what I'm talking about. It takes ages for her to listen to me but she thinks the DN's who come every 3 months to check her bum and are HCA's know everything. LOL. I hope I can be of use on here x

  • Hi, it's sad that you have had to join us, but if you are anything like me, it will be the best thing you have done in years! It must be very hard for you, being an ex nurse, to find that caring for a loved one, is a total different kettle of fish!!! But at least you should be able to speak the same language as the so called medical professionals. More importantly, they might even listen to you.

    Do you not have CHC funding for your Mum? Another thing is to get in contact with your local hospice, you will find them a huge support. One of the main things, is make sure YOU get help. As you are finding, this is a 24/7 job, not one any of us can do for long. Your Mum is totally reliant on you now, don't let her down, by not looking after yourself. I have crashed a couple of times and this has caused my husband a lot of unnecessary trauma and stress. Now I make sure I get time off regularly. Still very tired and frequently need to rant and rave. That's why this site is so brilliant, I know I have a large group of friends, looking out for me, ready to pick me up, dust me off, ready to care for S again! You now have exactly the same. You are not alone, we are all here to help in any way we can!

    Lots of love

    Heady

  • i agree with what h above s saidl jill

  • Hi Heady, as an ex nurse I should know this stuff but chc funding was something the care home managers arranged I was always kept busy actually washing, feeding and changing. Mums been awarded direct payments for me to pay for care. It's for 28 DAYS off a year, the joke is that as she needs 2 carers it will cover roughly 48 HOURS a year. At the moment I go out occasionally for 3 hours and have 2 carers come in for an hour in the middle. It works for me but clearly it's not a real break. I've been doing this for over 8 months 24/7. Would chc funding give me the opportunity to say have a week off? It seems to me that as soon as they'd realised Mum was well looked after they ran to the hills and hid and they never, never tell you your entitlements

  • CHC funding will pay for the extra help you need to keep your Mum at home, any respite weeks off, you may need and the cost of a nursing home at the end, if required. It is not means tested, but you do have to jump through some pretty high hoops to get it. Our hospice arranged for the District Nurse to come and do the initial assessment, she passed that on to the CHC people, who then come out and do a thorough assessment of your Mums needs. It does seem to be very hit and miss and a post code lottery! It is a huge weight off your mind, if you can get this funding.

    Lots of love

    Heady

  • Thanks Heady, had a meltdown tonight. Went out for 3 hours today with 2 carers in for an hour to change and feed mum her tea and give her a drink. She refused, said she wasn't hungry or thirsty so £45 for an hour of nothing!! She's never refused food and drink before and I can't help but think she's refused out of spite. I know, I know, but it's only the 4th time I've been out in nearly 9 months. Guess what? She ate and drank it all as soon as I got in. Close to breaking point. Just thought it would be OK if I could have a few hours off occasionally to chill out and 4th time in she's chewed me up. I know I'm being horrible but she has cognition and I just can't help feeling she's done it on purpose to wind me up. My sister says she needs a few days in care to realise how well she has it at home, perhaps she's right and it's time to ask for actual help!

  • I don't really believe what I just wrote there, just feeling totally sorry for myself right now. Well buck up! time for the night time routine, plaster on a smile and grow a pair xx

  • Hi Dizz58,

    I must have missed these, your first posts.....sometimes, I get bogged down with things and don't read posts for a few days.

    Anyway, sorry that you have be on here but as you will find out, this is the best place to be for information, help, support,understanding and lovely people who care .Where else will you learn so much, than from those that are experiencing the same as you everyday, every minute, every hour and so it goes on.

    My husband has CBD, he is 60 this year and has had symptoms since 2010 ,diagnosed 2013. He is quite advanced now and I don't often say this, but I am finding it harder and harder. Sometimes,I wonder how I find the strength and resilience to do all the caring.........but he is my love.

    I have answered your latest post about your GP's lack of understanding and support, don't let him carry on being so ignorant.

    Keep posting.

    sending you lots of love

    DenB xx

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