Newbie to site needing supporti


#1

Hi, I am new to the site but really need to talk. My dad has had Parkinsons disease for 18 years now, he was a really fit bloke when he was diagnosed, and his consultant reckons thats whats kept him going so long. Hes always been a fighter, independant in every thing including his medication, moreso since my mam died 4 years ago. 

At the beginning of January, he dropped his tablet box a couple of times whilst sorting his meds then had great difficulty in remembering which tablets he took. As he had been so independant I wasn't sure what he took when, any way we managed to sort it out but he seemed to become slightly obsessed with his tablets and trying to sort them out. A week or so later he ended up in hospital and was diagnosed with pneumonia and gout.He was on IV antobiotics for a few days and came home after a week.During his stay in hospital,we had a good talk and agreed that he needed extra carers to help him ( he had one visit a day previously, but now has three). He seemed okay and I continued sorting his meds out until we got a blister pack organised with the pharmacy. He seemed to be picking up last week with the extra care and on sunday looked the best I have seen him for ages ( I go every day to see him) , but on monday morning he rang in a right state saying he couldn't get his tablets out of the blister. This was 6am , but I am always up about then so I went down and helped him with them, and had to leave him notes to take what at what time while I was at work. When I went after work he had totally destroyed his blister pack, so I had to put his tablets back in his box. Of course the carers couldn't help with the tablets after this as they weren't in a packet. Yesterday his neighbour rang me at work to tell me he had tablets everywhere trying to sort them out ( I had already sorted them ), then today he was writhing in pain when I got there this afternoon, but had been outside trying to open the bolt on the shed door with a pair of pliers. I have been to his house 3 times since 3pm today, and after giving him some strong painkillers he had settled when I called down the last time. 

I have tried to ring the Parkinsons nurse but she is on holiday, I have tried to speak to his consultants secretary but after leaving a message she didn't get back to me, so now I have to wait to speak to his gp on friday with a phone call. I am worn out emotionally and physically what with work, my own family commitments and caring for dad who I am very close to , and dont know where to turn any more. I have no siblings and no extended family living close by, so it all falls to me. I have been playing the roll of carer for about 7 years now as I looked after my mam when she was diagnosed with cancer and I am so tired. Work is the only place I can focus and often have a dread of coming home as I don't know what to expect these days. Can anyone give me any advice on what to do as I really don't know anymore.


#2

You need extra help you can not for your own sanity do it all on your own.

Do you get any help from PIP call the DWP and start asking questions you may get a surprise as to what you can claim. Pip is not Income based It has replaced DLA. Its not a quick claim but you do get back pay. That Income can pay for extra care.  In the meantIme are there any friends whom you trust? 

BB X


#3

Hi Sanath31028,

I'm very sorry that you are so exhausted after juggling all your commitments and caring for your mother and father for so long. As well as BB and other community members willing to help, there are many carers in the forum who I'm sure will share their experiences and advice as soon as they find your post, but I wanted to point out that you can also call our helpline for support. Our advisers and Parkinson's nurses can give you practical advice and emotional support, so please do give us a call on 0808 800 0303 (open Monday-Friday: 9am-7pm, Saturday: 10am-2pm) to see how we can help you and your father, or just to get things off your chest.  

Best wishes,
Mara
(Moderation Team)


#4

Sanath31028  I typed a longer post but as you may find posts constantly disappear for no good reason on this site.  So this may bea bit curt and mispelt


Please ring the helpline above.  It isw manned by professionals who can help with all aspects of meds, care, em-ployment and they will always gtert back to you.

Emploers are supposed to have regard to caring responsibilities.  It must be very stressful if you are being called at or worse out of work with these emergencies.

 

You are also entitled by law to a Carers assessment in your own right.  This may not result in financial help but will enable yoju to discuss with a professional a plan of action.  That is what is supposed to happened but in these cash strapped times I cant speak for any area but my own where this is well-established.  You should also be recorded as a carer with your GP

Best wishes

 

 


#5

Hi,

I agree with all the above comments and felt so sad reading your post. You must get some help, otherwise your own health and sanity will suffer. The Helpline will be able to tell you how you do this. On a practical note, perhaps you could leave your Dad his meds., on a daily basis, in colour coded containers, with times to take them and keep the rest of his pills at your house. 

A word of warning about strong painkillers.....they can interfere with his meds., so it's advisable to stick to Paracetamol.

I hope you get some support soon.

Best wishes,

Twinks.


#6

Yes sweet heart I agree with the above comments do give them a call I know some of the staff personally at central office and they will do what they can to advise you and help support you as well.

Best wishes BB XX


#7

sanath31028 ,i do feel for you , your oviously giddy with it , rightfully so. please take BBs advice or see your own gp? ..hope everything works out ...


#8

Thanks folks to all of you who replied to my post, dad took a total hissy fit on thursday night, hence the reason I havn't replied before now. Got a call from his carer saying there was broken glass all over the kitchen floor, so went down and he was rambling about there being an army of young thugs trying to get into his bungalow. Ended up taking him to the local walk in centre where he was diagnosed as having a urine infection. Thought of this earlier in the week , after seeing my mam with one a few years ago, but when I called the gp out last monday, he thought all was okay. 

Booked a phone call with dads usual gp for friday night and as dad has had uti's several times over the last few years but never as bad as this, he wrote another script in case dad was no better for saturday morning. Of course he wasn't so went and got the tablets, but when I read the leaflet , the antibiotics can have an effect on ropinerole absorption, so next stop Helpline. Side effects can produce the same symptoms as a uti.

Feel like am betraying dad talking about him behind his back, but need to spout off, sorry guys....

Have bought little pots for his meds, written day and time for meds on each pot, still forgot to take some today.. having nightmares about tablets !! Will see how he is when he has finished the antibiotics and where we go from there

Regards

Sandra xx

 


#9

sanath31028(sandra),your not betraying your dad , carings the word . chin up the best you can .good luck. mike


#10

The urine infection will be making him more confused. Let's hope that in 2 or 3 days the antibiotics will have kicked in. The trouble is that older people seem to be on so many meds., you begin to wonder if they're all necessary! No wonder they get confused and forget to take some.

I've found that a good way to contact my neurologist, PD nurse or GP, is to send them an email. They seem to respond quicker that way.

For all of them I type in their first name, then dot, then second name (all small letters), then @, then the area (in my case, york), then dot, then nhs, then dot, then uk.

I don't know if it will work everywhere.......don't see why not. Might be worth a shot. Good luck with your Dad. I know what it's like. I had similar problems with my Mum.

Twinks.

 


#11

Sanath31028 you have my sympathies. You must be knackered and worried sick about your Dad. It's a lot for you to be doing helping him manage. My Mum's had PD for 18 years too and Dad is her main carer. Life is hard and exhausting for both of them. At least Mum now has a blister pack for her meds. and my Dad is around to ensure she gets them (generally on time) as Mum would now struggle to do this physically but also mentally too. 

You've had a lot to deal with caring for both your Mum and your Dad - very full on. I hope that you do manage to get some extra support for your Dad and for you too. I really feel for you both. Take care and very best of luck. I'm rooting for you. Tricksy


#12

PS Your Dad's understandable desire to be 'independent and in control' seems to be making things in some ways more tricky for you and for him too. My Mum sounds a wee bit like your Dad - she was very fit and active,  a very intelligent, quietly determined woman and then got dx and tried very hard to stay in control (she was always the one who wore the trousers!) and keep her mind active (she was very concerned about getting dementia, which sadly I think she has now). Her fighting spirit has, no doubt, kept her going but now she's, (understandably due to all her many 'challenges') getting quite down and wondering 'what's the point'. It's so upsetting to see - my darling Mum who I love to bits, wishing the struggle was over - "I wake up and I'm still here". It breaks my heart. The good news is now they have at long last agreed to carers coming in to help. Up until Jan my Dad was doing all the caring etc. They could really do with more support going in but it needs to be done at a pace they can cope with - its been a huge change for them. I want to help make the house 'easier' for them too but again I have to help them sensitively and listen to what they want. It's a hard balancing act - trying to do the 'right thing' and be supportive and not overbearing, but also not just leaving them to it. They are the type who just get on and don't want to trouble people.

Sandra your Dad's situation is different to my Mum's - as he's living on his own, albeit with your dedicated input, love and support. Even though he has carers coming in several times a day, he is likely to be 'sorting things his way' - it sounds like he's doing this with his medication, which causes major problems when he has 'sorted it incorrectly'. Nightmare! My Mum does something similar with 'papers' - a lot of it is anxiety based e.g. sorting through all sorts of documents looking for important info. re. 'money' because she's worried that the money is going to get lost and that my Dad won't care - punding I believe the term is. She is trying so hard to sort these papers out the problem is she can't see well enough and it's physically too tiring to get it down effectively so they are just getting into an even bigger muddle. It's never ending. This sorting behaviour seems compulsive but understandable too as she's always be a 'sorter' and when your life is getting more and more out of your control (which hers is) I suppose it's a way of trying to maintain some. Also it occupies her - she can't watch TV now she knows she hasn't the concentration for it and she doesn't want to go out either. Her life has become sadly so small, and my Dad's has too.

Sorry Sandra, this isn't helping your situation. I'm just off-loading. I just wanted to say don't feel bad for asking for more help - your Dad needs it and so do you. I thinking of you and wishing you both well. T


#13

Dad now feeling and looking a lot better after the antibiotics. So am having a pamper night to try and make myself a bit more human. Whether it works or not remains to be seen but at least my hair will all be one colour !! 

Don't worry about off-loading Tricksy , isn't that one of the reasons we are all on here, to share our experiences and help each other along if we can, off-load any time you want, cos am sure after the kindness and genuine caring natures of the people who reply, I will certainly be chatting on a regular basis, no matter how trivial some things might seem.

It is just so reassuring to know you are not on your own and thanks for being there guys, 

Sandra xx


#14

Hi Sandra (Sanath31028) and everyone else,

Sandra, thanks for writing back to me. You are so right, it does help 'speaking' to others in similar situations and 'offloading' too. Also it's great receiving practical tips and ideas back but most of all it's the 'listening ear' and the moral support that helps the most (for me anyway).

Glad to hear that your Dad is a bit better - long may it continue! Good to hear that you had a night in, doing things for YOU! Very important!!!! 

I'm hoping to have my folks over to mine for a couple of nights later this week. I'll go over and pick them up in the car, pack for my Mum, as well as packing her equipment. At least my Dad will sort himself out and it will be minimal - he's a bloke after all! Holidays are a military operation nowadays (all the stuff - loo seat , zimmer, bed rail, lots of changes of clothing etc, etc!) but hopefully it will give them a change and a wee break. It also gives me a chance to see for myself how my Mum is doing and how my Dad is coping. It will be lovely to see them, but it's always emotionally hard. I so wish their retirement years had been different. But hey, that's life - it deals you stuff that you've just got to get on with!! The challenge is noticing and enjoying the little moments of joy or beauty in life. Sometimes, easier said than done!!!

Sandra, hang in there. I'm hoping that you and your Dad find some way of 'sorting the pills' that you both can manage. I believe there are (? more expensive) pill containers with compartments that will only open at set times - that might be a last resort option. Can the OT help or the PD nurse or this helpline? The issue seems to be your Dad's own anxiety about getting his pill regime right and not 'trusting' anyone else's. It's understandable, but possibly there's 'paranonia/compulsiveness' going on that is upsetting his judgement. Maybe this will settle if the antibiotics are working as urine infections do cause confusion I believe. Fingers crossed.

Good luck to you both. Hope you'll keep posting to let us know how things are going for you. Sandra I'm sending you a big hug down the 'wire' Tx


#15

Hi everyone, hope you are all okay.

Tricksy, how did your visit with your parents go? Hope you enjoyed it, your parents too.

Dad has another urine infection at the moment, but the antibiotics dont seem to be kicking in as quickly this time, he is also sleeping a lot. Going to ring the Parkinsons nurse tomorrow because his medication confusion is still high on the agenda. The carers hopefully are changing their time to visit as from next week so they can give him his tablets which will be a huge relief for both of us, cos hes worrying about me being a stress head and Im worrying about him either not taking his tablets or mixing them up.

Regards, Sandra x

 


#16

Hi again all,

Sandra thanks for your reply. Sorry to hear your Dad still has problems with urinary infection but glad that his carers' times have been changed so they can hopefully ensure he gets the right meds on time and doesn't get in a pickle. I can completely understand your situ. with you worrying about your Dad and him worrying about you!!! Sounds very familiar to me!

I didn't get my parents over last weekend as our elderly cat ended up having to have an appointment (bladder scan as she's got a UTI!) at the vet on Fri which, we'd been warned, could have been her last appointment (if they discovered something bad)! Decided it wasn't fair to our cat, my parents or us to have a 'full house' at the same time! (However the cat's had a 'stay of execution' - much to our relief, as her bladder seemed fine. Just chronic kidney disease I expect - common in elderly cats). So I'm going over to my folk's tonight and will bring them over to ours for a couple of nights. My partner's Dad went into hospital yesterday early morning (possibly had another wee heart attack). He's 95 and has had a fair few. Bless him. I tell you what with him and the cat, it's been an emotional roller-coaster. They are the 'boomerang pair' - they keep coming back! Just as well really as we don't wish to loose either of them, just yet!

Fingers crossed we have a 'quiet', event free weekend!!! You have to laugh, really.

Take care all, T


#17

Hi guys, just to let you know dad is fine now and really think it was the urine infections doing all the mental stuff. I am still going down first thing on a morning, but at least he is all there now, rather than worrying whether it was his Parkinsons progressing, I am just going to keep a couple of specimen pots handy and at the slightest sign of confusion , put a sample in.

Hi Tricksy, hope all is well with your folks and your cat. Did your mam and dad get to visit with you?Hope your cat is okay too. Hope you are okay too, 

Take care

Sandra x