I need to say this as I dont know where to turn now its a long one!


I apologise its a long one but I need to get it out.

At the moment I dont know where to turn. Short story - I am a 28yo recently married woman caring and looking after my 84 yo grandfather who has had PD for over 10years. My nan passed away April 2010 and as she was the person that held everyone together when she died her children (my mum and aunt/uncle) and the remaining grandchildren disowned my grandad as he was only ever their stepdad (yet married to my nan and in their lives over 40 years). I live approx 30 mins away from my grandad and work nights. My cousin the only other grandchild that occasionally does things for him (sees him 2-3 times a year) had him visiting him before new year - whwre he fell up the stairs, fractured part of his spine and lost conciousness.Hence being admoitted to hospital for 5 days - in those 5 days my grandad did not walk anywhere, nor bath nor have his medication given to him correctly.
My grandfathers has deteriorated and his main problems are: major urine incontinence - where he is wetting the bed everynight, he had waterproof covers etc, incontinence pants that he will not change on a regular basis and will sit in his own urine.
Trouble swollowing/coughing reflex
Tremour which disappeared for a bit and has now returned and now he refuses to sign his name
Unable to walk unaided - today now has a walker, a stick, me or a wheelchair
Confusion and forgetfulness - he doesngt know how to answer his house phone, doesnt know what to answer with if someone asks a question except with "its all fine"

Since coming out of hospital, I managed with social services to get him into respite for 10days - which asked on the day he left did you enoy it - yes, the food was lovely, the nurses are lovely, I get taken care of etc.
Ask him now - Would you want to go back there = "not particulary"

Regarding S.S - I have been told that I was too involved in my grandads care and that I should take a step back.
My involvement being - to make sure the carers were changing his bed daily (which they are not allowed to do as S.S will not allocate him the extra time for this as he is a independant man and doing this will take away his independence. No leaving him to lay in his urine wet bed will result in urine scalds, UTI etc.
-Making sure his washing was being washed and his food that he was buying each week was long dated, various, contained veg and something he enjoyed.
- to make sure teh carers noted and logged any bruises on him or cuts.

When my grandad, myself, the S.S and the carer manager had a meeting to arrange his care after respite we both requested a hour long call in the morning - for getting him out of bed, showered, dress, breakfast given etc. A lunch call, A tea call and a bedtime call (30-60mins each). What hes been allowed as he did not say alot in the meeting - a 30 minute morning call, where this morning he got help showering and getting dressed. No breakfast but a sandwich for lunch made. which took 45 mins. I stayed at my grandads last night to see how the carers would work today and he was up and down like a yoyo last night - he changed his incont pants 3 times and then I heard him bumping about at 3am - when I woke him at 8am I found him laying in his own urine wet dressing gown - naked! ontop of his urine wet through duvet, pillow and sheet! I ahd to throw all his pillows and duvet out as it was saturated with urine - with his urine soiled pjs hanging on the warm radiator.

Because the S.S will not allow him to have the carers strip and change his bedding daily, then what?
If my grandad had spoken up and said "ive wet the bed" not a problem but he will not admit he has a urine problem and tells everybody that it is fine.

I understand PD is awful disease but I cant watch my grandad loose his dignity and self respect with people who "dont want to take his independence away and want to keep him safe and from harm" Yet Im here telling S.S what he needs, wants how he is, that he cant walk really, make himself drinks, answer his house phone etc And I may as well bang my head against a brick wall as it has to come from him and to top it of he was discharged from his PD consultant in December and now can no longer get a PD nurse or physio to see him unless he goes back through his GP
So sorry for the troubles you are having. I simply don't know what to say that would be any help to you. The social services attitude reminds me of my mum trying to arrange support for her when she came out of hospital to keep her in her home, (which was going to be cheaper for them) and being told the trouble with people like you is you want everything yesterday.
You take a deep breath and go on wanting everything yesterday.
Hi Lesley

Firstly, please phone the helpline at the top of the page. They are very helpful and understanding and will be able to point you in the right direction. There are Parkinsons UK Welfare officers in many areas and they are a source of practical advice. Go to the home page and follow the link "local to you" to the regional page where there is a link to who to contact for help and advice in your area.
You could try this link http://www.parkinsons.org.uk/local_to_you/regional_teams.aspx

I am very puzzled about what you say your grandad being "discharged". I realise you did not want to make your post too long but you must not worry about that. We all understand that its just not possible to explain some situations without writing at length.

How lucky your grandad is to have you to speak up for him. I can never understand how some step relatives behave. You would think out of love and respect for your nan and her wishes they would want to help her other half of forty years whatever they felt about him.
Hi Lesley,

I hit the post button by mistake before I could check my post and the link.
The link is OK but the more wordy instructions missed out choosing your region before you get to information and help in your area.
Hi lesley83,
I'm sorry to hear what you and your grandfather have been going through.

Eileenpatricia is absolutely right. Do call the helpline. We have a social care adviser who can walk through what's happened with you and maybe suggest ways forward with social services.

Take care,
Hi Lesley,

What a wonderful girl you are, don't give up and do discuss all these issues with the social worker as he or she should have a care plan in place which should cover some of your concerns if they haven't why not as it is his right.
They also have to take into consideration your support, you don't say if you work but if you are not or working part time you may be able to claim a carer's allowance, is your granddad getting attendance allowance. We know the money is not an issue but it enables you to get more help.
Your granddad may need to see a continence nurse, there are many different ways of sorting this problem out, it is appalling that making sure he is clean and dry is not covered as this will cause many other problems such as bed sores.
I hope the social worker will be helpful but if not request a different one as they do vary such a lot. As other forum user's have said contact the helpline and see if your local branch have a support worker who could help you sort our most of the problems or at least send you in the right directions and support you in doing so.
I don't understand why the PD consultant has discharged your granddad, you need to know why, and if there is a PD nurse why is he not seeing her.
Good luck and best wishes.
Hi Lesley,

Sorry some of my comments are useless, I forgot you said you worked nights,but all the best in contacting the helpline.
hi lesley welcome to puk forum:smile:im ali ive been dx with pd for 11 years,im 42 years old:smile:im sorry to hear about the situation you are in with ur grandfather.i meself have carers which come in to me bunglow 4 times a day,ive had to change angenys 2 times now,cus of lack of care bein givern.i feel this is wot is happinin to your grandfather.when social servies come out for a talk before the agency is put in place as you no he would be discussed,and your self or some one close to him should be there,and everythin you say is noted down,and even if ur grandfather does not speak up much for him self,his wishes through ur self should be givern.when ur givern a time scale of how much time he is aloud to have are durin the day time,is put through a panel of people ,the social services person will give her report and its for them to decide the out come,and then the agency to fulfil it.you can always appeal 3 times for more time to be givern.i have a hour and 15 mins in the mornin,thats for shower,breakfast,meds,creams,dressed,bed made and anythin else i require with in that time.lucnch time i have half hour for food,and washup etc,and dinner time 45 mins to a hour,8pm is agin meds and wash pjs on etc for half hour call.your grandfather with his urine prob,ive been there ,with pads etc,and in the end had to have a supa pubic catherter fitted,cus i lost all control of me bladder,but durinin the time of wettin the bed,i never had carers then ,i relied on my xhubby and daughter to helps me.but im shocked to hear that carers would leave some one in solied cloths or beddin,if ur grandfarther is nown for not speakin up the carers can just check,and then chat with him to help him,to sort him self out.district nurses would not be happy about him lyin in slid items at all,cus he will get sores on his butt and need mediacl treatment then.but everythin ive said lesly u most probs no already,and im wobblin on:laughing:but the issue deffo needs to be looked into further,puk help line can guide you to the correct person who to contact.im sure if his gp new of this he would step in.when you say he has been discharged from consultant,are you speakin of his neuroligist?and if so,why would he be discharged,ur ment to have one for surport,meds etc,and a pd nurse if one is avaible in ur area,and ur phiseo,ocupational health is another thing ,are they in place with him,seein wot items and care he requires,there is so much help out there lesley to help him,im just so shocked by the way things are bein handled.ino its convidential his gp,and it takes him to be there with you to get some help for him.you could also request a different socil services person if ur not happy with the way they are handlin things.i wish you luck lesly,and ur grandfarther as well,please keep in touch with us,but please try ring the help line,or gp and dont let no one tell you that your in the way or carnt speak up for him,back off ,to me ur sound like alovin person who cares about his welfare very much.push erm lesely as much as you can,i wish u both luck x:smile:
We have had problems with teh carers in the past and I did put a long paged complaint in to them which they never got back to me on. Since having the meeting with s.s and the branch manager - the carers have been doing what they were eventually tiold to do. one carer in particular stripped his bed this am and changed washed and sorted him. I seen him today and his actions are not those of a man he used to be. He has been taking is medication (self medicating) all his life, i just put them in the pill boxes ready for him to take them as well as PD he is on a whole range of meds including painkillers for his fractured back. in the morning he takes approx 7 tablets yet today he shook his PD tablet out of the 8am slot, put all the other medication (also to be taken at 8am) back into the box and said that that is what he has always done. He has never done this! So proving he is not taking his medication properly. He also was dressed by the carer and for the first time ever put a fleeced lined jumper on over his bare chest and sat in the cold living room (there is no radiator just a gas fire) and when I asked if he was cold he said no then put the fire on.

My husband saw him for the first time in a week and explained taht seeing him like this not coping or asking for help is breaking my heart, that I am fighting for him to get extra time and care but he sits and says either nothing or everything is fine when its not and the repsonse my husband got was either sorry or a shrug of shoulders or my grandad staring off into the wall.
I need him to realise he needs more help.
He is recieving AA and CA but its the watching him go from a man who I remembered as driving the campervan with my nan and myself to Scotland, Scarborough all teh summer holidays to a man who will not change his incont pants, not showering daily nor having any personal hygiene routine or respect for himself in how he looks or is. if my nan was alive she aways said to him to change his pants, would go out for days out even if she didnt want too.
I just dont know what to do. the PD nurse wont see him unless he his under a PD consultant, the reason he was dicharged was becasue they upped his co caredelopa to 4 x a day and he said it didnt make a difference (i said it make a difference initially) and therefore medically there was nothing more that could be done for him!!
Have I understood right that grandfather is accepting the poor care and not complaining because he absolutely wants to stay at home and not go into "care" home?
He is accepting the care from the carers which at the moment they are doing their job. but because s.s will not allocate him extra hours (as this will take away his independance) they are unable to fully do their job ie; leaving his pee wet through bed for the next carer at tea time to change.
When he was in respite for 10 days I knew he was safe, clean, looked after, meds on time and fed and content in his room. Now he is back home - last night he didnt knwo how to answer his house phone (it was flat). He doesnt remember how to lock his front door and will sit in his incont pants from the moment the carer leaves him at 9am till teh next carer at 5.30pm as he will not change them himself nor remember. He says he doesnt know when he has wet his pants. Or if he wants extra calls and help.

I can see him deteriorating yet in the S.S eyes he is a independant man who can make his own judgement calls and decisions so why take away his independance and increase the extra care that he needs.
hi lesley agin ,regardin his meds,i have mine made up by the chemist in doset boxes,me dr prescribes the prescription for 4 weeks and it goes over to the chemist and they make erm up,i have too doset boxes aweek cus i on lot of meds.me carers then give them to me,cus i used to open the doset box me self and take some out and think nah dunna wont that one and go put it in the bin ,i bad lass :laughing:but at the time i did not care.as for the fleese top he should of had his vest and t.shirt put on under his fleese,speacilly when they no he has no radiators,these are simple things to do,and i can not see why they are treatin him this way,it not mater lesely if he dunna talks to erm ,they should help him no mater wot,he needs to be looked after.he may like doin his own meds all his life but if he is puttin erm back and not taken erm ,it needs lookin in to now for his sake.i dont understand about the neurolist dischargin him still though.i was on stavelo and mirpexon first,and the stavelo made me very constipated,i then got told by me gp to ask to go on sinemet,there the gold of pd drugs and he thought they helps me,so i asked.me neuro told me i was too young to go on them and he was not happy bout it,there would not be a beter drug when im older to have.well i thought this was rubbish,there is resurch goin on all the time,by time i get old there deffo be some thin,but he still said no.i ended up in tears comin out of his room for several months,cus i felt me body was getin worse and i needed some help.my gp said change neuros then ,so i did,and it been best thing i ever done,she put me straight on sinemet and there was some improvement.just cus ur grandfarther has not made a difference to sinemet the neuro should not discharge him.thats like brushin him under the carpet in my eyes.so if i was you ,ask for another neuro,and get the ball rollin with beter help with him .ur neuro can do alot to help ,the one he got at mo dont seem to be bothered at all,which disgusts me.everyone is entitled to one,and pd nurse if avaible.have u tryed callin the puk help line yet for advice ,the number is at the top of this forum page,08088000303,thy really will guide u lesley,its worth a good shot of it to help him.:smile:
Hi Lesley,

re. what you said about the consultant "I just dont know what to do. the PD nurse wont see him unless he his under a PD consultant, the reason he was dicharged was becasue they upped his co caredelopa to 4 x a day and he said it didnt make a difference (i said it make a difference initially) and therefore medically there was nothing more that could be done for him!!

I have just taken in the above. On the face of it, this is a nonsensical thing for the consultant to have said. There are many medications and combinations of medication which can be tried. Was this a neurologist or a geriatrician with an interest in PD. Surely your grandfathers GP cannot be happy that one of his PD patients is without the input of a consultant. Most GP's admit to not knowing much about PD.

I do hope that by now you have been able to contact the PD UK helpline and get some practical advice.

Best wishes