Where do we start?

[NickyD02777]

Hi Everyone,

Feeling a little lost at the moment so hoping to get some guidance from some of the great people on here. My Father was diagnosed with Parkinson's Disease 12 months ago and after a rapid decline with his mood, memory and behaviour etc he was referred to a neuro psychologist, who in Jan 17 diagnosed early Alzheimers.

Since then my father has continued to decline, he is frequently experiencing confusion, memory loss and what I can only describe as strange behaviour. In the last 6 weeks he has also had two water infections which has made his symptoms even worse. Physically he has also massively declined, we believe the PD is effecting his mobility but also due to now eating virtually nothing he has lost a huge amount of weight and is now suffering incontinence. My poor mother is pretty much now his full time carer.

He was a creature of habit, he had a little job a couple of hours a day, was independent as he was able to drive and would go out every night to his local working mans club. All of this has stopped now and my dad is simply getting up at mid day to get dressed, will watch some tv and sleep. It feels like he is wasting away in front of our eyes and as a family we feel helpless to know what to do, whilst he attends a clinic for age and vitality at Newcastle General hospital every 6 months no-one has actually explained that happens with dementia and what we should expect (if thats even possible) and what help is available

I suppose I'm just wondering if anyone has any guidance on where to go as a starting point and who to speak to, have most people on here found the best thing to do is self educate?

What help would our GP be able to provide?. It was mentioned to us that he may be able to take medication but we have heard nothing further - who do we speak to about this would it be the GP or the hospital?

Today I visited my dad and he was lying on top of bed just staring at the ceiling, I asked if wanted to go out, wanted anything to eat or drink, wanted music on or something to read but he declined all offer - it made me so sad that he is wasting away both physically and mentally because of two horrible diseases that I thought I would post on here and read through other posts to see what advice I can get.

Any advice or thoughts would be welcomed and very much appreciated

 

[Shedrech]

hello NickyD02777
and a warm welcome to TP
it is tough watching your dad affected by the Alzheimer's and Parkinson's and not having any support

I'm not sure why your dad wasn't offered meds for both conditions - time to go back to the GP and consultant and ask - my dad was prescribed sinemet for Parkinson's, donepezil/Aricept for Alzheimer's (later switched to mementine), sertraline for his low moods and other meds as needed - I am not saying that your dad should be taking these meds, just that there are meds available so it's worth taking this up with the medics

sounds as though your mum could do with some support in looking after him, too - has there been an assessment of his care needs by their Local Authority Adult Services? - your dad has a right to this assessment so do contact the LA (DO NOT mention his finances until AFTER the care assessment has taken place) - your mum also has a right to a carer's assessment - it may be that some home care visits are suggested, to help take the strain off your mum, possibly a sitter, day care and respite, with an Occupational Therapist to visit their home to suggest aids that will help - definitely worth having as much support put in place as early as possible

for your info - should your dad have savings (or half joint savings) over £23250 he will self fund any care fees - your mum's finances are not taken into account, and the marital home is disregarded in the financial assessment - below that figure, the LA will part fund any care - but don't let them know either way until the care assessment has taken place

if your parents haven't yet, look into applying for Attendance Allowance as this is not means tested, if your dad is eligible he will receive it - on receipt of that contact the Council to disregard his Council Tax so your mum is assessed as a single person

here's a link to the main AS site's listings of their factsheets - there's lots of info available
https://www.alzheimers.org.uk/info/20033/publications_and_factsheets?_ga=2.165752958.171505805.1502441614-213745934.1462100281

it's also worth setting up Powers of Attorney for them both, so that someone has the legal authority to help manage their affairs

I hope that gets you started - now you've found TP, just come back with anything you want to chat about - someone here will be able to help and share their experience

best wishes

 

[Pacucho]

Hi NickyD02777,

I see you have already received some great advice.

In addition I would recommend you find out what is available in your are to all members of your family. The best way to do this is to contact your local Carers Centre who can advise on what local support is available, benefits, etc. You can find your nearest Carers Centre at this link: https://carers.org/section/help-advice.
Hope this helps.

Paco

 

[Ethelburga]

Good advice re AA and carers centre

Hi Everyone,

Feeling a little lost at the moment so hoping to get some guidance from some of the great people on here. My Father was diagnosed with Parkinson's Disease 12 months ago and after a rapid decline with his mood, memory and behaviour etc he was referred to a neuro psychologist, who in Jan 17 diagnosed early Alzheimers.

Since then my father has continued to decline, he is frequently experiencing confusion, memory loss and what I can only describe as strange behaviour. In the last 6 weeks he has also had two water infections which has made his symptoms even worse. Physically he has also massively declined, we believe the PD is effecting his mobility but also due to now eating virtually nothing he has lost a huge amount of weight and is now suffering incontinence. My poor mother is pretty much now his full time carer.

He was a creature of habit, he had a little job a couple of hours a day, was independent as he was able to drive and would go out every night to his local working mans club. All of this has stopped now and my dad is simply getting up at mid day to get dressed, will watch some tv and sleep. It feels like he is wasting away in front of our eyes and as a family we feel helpless to know what to do, whilst he attends a clinic for age and vitality at Newcastle General hospital every 6 months no-one has actually explained that happens with dementia and what we should expect (if thats even possible) and what help is available

I suppose I'm just wondering if anyone has any guidance on where to go as a starting point and who to speak to, have most people on here found the best thing to do is self educate?

What help would our GP be able to provide?. It was mentioned to us that he may be able to take medication but we have heard nothing further - who do we speak to about this would it be the GP or the hospital?

Today I visited my dad and he was lying on top of bed just staring at the ceiling, I asked if wanted to go out, wanted anything to eat or drink, wanted music on or something to read but he declined all offer - it made me so sad that he is wasting away both physically and mentally because of two horrible diseases that I thought I would post on here and read through other posts to see what advice I can get.

Any advice or thoughts would be welcomed and very much appreciated

I just wanted to add to the advice to say that the Carers centre may also help you complete the AA form or failing that Age Uk or Citizens advice. Always keep a copy before you send it in. It will be back dated. Citizens Advice and carers centre will usually offer to do a benefit check to make sure your mum and dad are getting any financial help they are entitled to. Good luck