Thanks Lilly and Pebble for the replys.

It could well be an option. The problem in the past was my mum had been in denial and wouldnt have outside help. With the new guinea pigs for example. When the idea went into her head a week or 2 ago she said she would be the 1 to clean them out. She would look after them and we wouldnt need to do anything. However the reality which happened when she got our current 2 guinea pigs was she said she would do all the cleaning etc. Within a month we saw she couldnt do it. My nan ended up cleaning them all the time (with help from me when I could) and when my mum went to try and clean them she fell over.

Outside help tends to be a bit of an issue with my nan also. Shes very much against the social services and whatnots help because of what happened with my uncle.

With him he had his PD consultant nurse. She said he had PD and drugged him with a load of medication. Then after a year she said she did a wrong diagnosis so gave him some other tablets for something else. A few months passed and some other DR said he has PD. So he was back on some other meds which ruined him. They gave him halucinations, made him sick a lot of the time, he slept for pretty much 22 hours a day. My nan knew they were doing him no good so reduced his medication and there was some improvement. We had to problem though of him thinking it was 8am at 2am and he would get up, get dressed and get ready to walk to the shops but my nan and myself usually found him and got him back to bed.

What happened after was a serious shocker. He had to be put in care because the work was too much for me and my nan (especially with my mum showing symptoms at that time). At the care home he hated it, all he wanted was to go home. He actually got up and walked out a few times trying to get home. I remember the police coming up after looking for him and eventually found him in some park on the floor as he had fallen over. They dragged him back to the care home. The care home then deliberately drugged him every single day so he couldnt move out of a chair. It was like he was paralyzed. The drugs they fed him were damaging him internally and he ended up going into a coma. Thankfully the saved him that time and we had to pay a lot of money to move him into a 5 star private care home that did look after him, but by then because he was drugged up so badly and his organs were failing he had little time left. They drugged him up that bad at the previous care home he actually had "motor neurones" as cause of death on his death certificate because they thought thats what he had and not PD since he didnt move at all.

Even with my mum so far there has been problems with DR's so far. 1 minute she has PD, then she could have something else, then she definitely has PD, now some DR's she sees say they have no idea whats wrong with her. She has the same PD consultant nurse as my uncle had (worst luck) and she is just useless. She was meant to come round here a few days ago to talk to my mum and see how she is. She never turned up and didnt even call us.

Both my mum and nan dont have any trust in outside people from all this so theres next to no chance they talk to anyone.

Family helping is a big issue. Theres next to none. My dads side of the family are a no no. My mum doesnt even know them or where they live. My dad died many years ago which I didnt care about because I only saw him once (when I was 2) and he never cared about me or got in touch.

The other side... my mum and nans's tend not to care at all. When my uncle was alive and they were both perfectly well they did used to hang around with people from that side of the family. As soon as PD kicked in the family didnt want to know.

We see a few family members at xmas only. 2 of my nans sisters do come up now and again to help my nan with shopping but rarely. All the rest of them are perfectly well, with kids and familys of their own. They are both ignorant and not understanding when it comes to PD. Half of it is they avoid coming here because they dont know what to say or what to do, the other half is they see no point in coming up because they wont be able to do anything/go out with my mum cause shes not really able to.


Currently the tension in the house isnt too great. My mum isnt talking to myself or my nan and it looks like it could be like that for weeks.


Both of us said and did stuff we didnt mean. But personally for me the hate and anger was directed at the disease and not her as a person. Of course I love her and as mentioned would do anything I can to make sure she doesnt have to go into care anytime soon.


Thanks lilly. I do agree. As I can recall when PD took over my family (at 10 with my uncle diagnosed) I didnt really get a childhood. yes there was some great days I am grateful for but it was hard. All other kids at school's parents and familys were healthy and had nothing wrong with them. Obviously at that time my uncle wasnt. Kids will always be kids who are arrogant to any condition or illness and always find "different" people a topic of laughter so when my uncle carried on taking me to football games people threw jokes and laughs our way. In fact if I recall it some bully kid actually pulled off and stole my uncles football scarf when we went to the game...cruel eh?

Through that age I was sorta living a lie to friends. I couldnt have friends in because I thought they would make fun. I lost a lot of a friends also by not meeting them because I wanted to spend time at home with my uncle since when your a kid you dont know anything about PD and from what I believed I thought he would only live a few more years.

As I got older into secondary school teens I felt ashamed for it. The blame went a bit on my uncle... "why did you have to be ill?", "why cant you just be like everyone else's parents/family?" and started hanging around with my mates more (naturally for someone that age). By time I realised fully that its not his fault, he never asked for it and I wasnt ashamed it was near enough into his final days :(.

So thats what my growing up life was like. At a young age hanging around with my uncle but when PD hit him I had to see other kids poking fun. Then in teenage years I almost blamed him and hung with my school friends more. When my mum showed her symptoms at that time I felt the same a bit towards her. Then I grew up and became an adult who understands and doesnt blame either of them.

Its a horrible feeling everynight I keep getting. I think "I love my mum and nan so much" and think "I dont want anything bad to happen tomorrow". And I do just want some sort of stability put in place so my nans not under any strain, my mum is able to do her own thing here safely and stress free and I can put a bit of worry out of my mind without thinking "what could happen tomorrow?"

sorry for the rant again :)

Ray:


1. No I never once said that. They are not as important. But realise im 24. I have had the upbringing around PD since the age of 10. I cant just drop everything and become a full time carer earning no cash for the house and have no life apart from being at my mums beckon call 24/7. 1 massive meaning of life for me and most people is to be happy, meet a partner, have kids and settle down. I do want that but it would never happen if im caring for my mum all the time. If I did what would happen when she goes? (touch wood it doesnt happen for at least 10 more years). I would be left on my own, with no family, nobody or nothing and if I end up getting PD myself in the next 10 years im going to end up like the man who lived down the road with PD (He had it for many years, he had no family, nobody went to his house. He passed away and the council repossessed his house (he worked all his life hard for) which is being rented out to people. If my mum didnt have PD at the moment for example and in 10 years time had it after I had made something of my life I would be more than happy to drop everything to help. The sad but true reality since my mum is living on disability allowance, my nans on her pension and also claims a tiny bit for carers allowance is that we need extra money coming into the house if I gave up the business and retail job to care we wouldnt be able to afford anything here and bills wouldnt be paid.

2. Made me feel a bit sad in this 1. I can see that and do understand that guinea pigs are maybe her only hobby (or 1 of her few). The reason guinea pigs are cleaned in daytime Is because theres not much space in the house. What I mean is their routine to be cleaned is they are put out on the back lawn in a run. Because we cant have them running around the house when they are being cleaned as there is no space. That cant be done when its dark for obvious reasons. The fish are also cleaned out in the day as the tank is in my mums room to navigate around when shes in bed or in her room after 5pm checking the internet. The tank is massive (the fish is also big and just fits it, hes over 10 years old) which means my nan has to basically clear out a 30 litre tank with heavy lifting.The beer brewing part isnt really preventing changes. My nan doesnt want to put a shower downstairs especially because a shower downstairs is lazy for my mum and thats not what we want. With PD the best thing anyone can do is exercise, and keep busy, not slouch in a chair and walk 3 steps to everything. Having the stairs as a challenge means she has to work to get up there which loosens up her muscles and makes her know she cant just sit in a chair all day.

3. I agree completely if I had my own place. But the difference here is im not just cleaning up my mess. Im cleaning 2 other peoples which is a bigger task. If I had my own place I would tidy things once and make sure it doesnt become untidy for a while. Here however its different. The other week when they were away and I tidyed every single thing up and cleared rubbish I came home from work the day they got back off holiday and there was newspapers on the floor and the house was nearly back to its original mess.

4. Im sorry to hear about that.


5. The thing with the row was actually the fact my mum blamed my uncle for PD. He did nothing wrong. His PD was a bit more advanced than hers so he was worse but because she blamed him she would make any excuse to have a go at him if things are not going her way that day. Regardless of my birthday or the day it was, things like that are horrible to see. A grown man who was a mate to me bursting into tears because he had been shouted at horribly for not passing her a piece of paper quick enough. I can recall another day where my mum had a real horrible go at my uncle (again over nothing. I think it was something to do with him being asleep and not being able to take me to football practice). In fact it was that bad she told him we are leaving and getting on a train. He broke down in tears and said "im sorry mate, heres £3 to get yourself something nice where you go, im sorry its nothing more but I dont have any other money on me". Then my mum took me out of the house to town. We had a few hours in town and she took me home and said to my uncle "sam didnt want to go on the train" which was of course emotional games which I personally think could of deteriorated his condition.

6. I know my great nan was something like that. She didnt die of old age though. She died from a long suffering cancer. It lasted about a year and at the end she wanted to pass away at home.

7. I do help with their bills too. I give them cash for themselves each month and theres small bills like internet and landline phone I pay for. £60 a week is only what I pay on shopping for them (rent is also paid separately). Surprisingly in this house it usually lasts and I even have enough left over to get them chocs/sweets or a chinese 1 night.

8. The nudity has always been a thing with this family. Nobody in the house has spoken about sex, nudity or anything like that. I think its more of an embarrassing topic for them than me. I always remember if I was watching tv with them and any bit of nudity came on they would quickly turn it over. Maybe I should contribute more in both money and effort. The problem though (as above) is they cant have it both ways. Either I can be working and earning extra cash to put into the house or I can be off work, helping a bit more but have even less cash to put into the house.

9. I never thought of it in that sense. Perhaps that might need to be rethought. I always gathered she had PD badly. General symptoms have even confused the DR's. She had problems breathing at times (has to have a respirator thing on twice a day), she had problems with her eyes where the muscles can prevent her eyes from opening for a while when they are shut. She even had to have a complete hip replacement a few years ago. Shes on 3 or 4 types of tablets (including Fluoxetine which im guessing is an anti depressant and sinemet). Some of her general related symptoms are constant stiffness, she doesnt shake much if at all, sometimes forgets (mostly things that happened many years ago but she does still remember a fair bit). I wish she could use a computer like you. Her typing would never be half as well worded. She does have problems grasping anything to do with computers.

10. Its a difficult 1 to think of. The ideal basis is to find the happy medium which gives my nan time to enjoy her retirement and makes her able to do less running around after my mum. Something which gives my mum a hobby and makes sure she is safe/given all she needs (although I did buy her a WII for xmas, she hasnt used it at all for the past 5 months) and something for me which means I can live a life of a 24 year old and have no worrys about the wellbeing of my mum and nan since they are doing fine.

Hi.

I understand what you're going through, as do most folk here, and sympathise enormously. Prior to my own mum's death from brain tumours when I was 20 she'd spent 5 or 6 years in misery after the GP wrongly diagnosed her problems as just being menopausal. By the time we discovered the real cause it was far too advanced to treat successfully, although they did try chemotherapy and lasers. So I had no teenage years either. And then by 50 I had Parkinson's. Great, huh?

The point is, none of us has any control over what cards we're dealt in life, we just have to make the most of what we get. It's no good pondering whether it's fair or not (there's no fairness in nature, just ask a Bangladeshi flood victim), you just get on with it and focus on recognising those parts which give you pleasure and satisfaction. There are nearly 7 billion people on the planet, and you and I are better off than well over 6 billion of them (there are 2 billion in China alone, and another 1 billion in India!).

Of course you'd like to be out with your mates, chatting up the lasses or starting up a family, but although you can see others apparently out jollying most of the time, no-one has a right to anything in this world, and - I repeat - there's NO fairness in nature, you have to fight for everything.

When I was first diagnosed PD I was given the wrong drug. I was given one which nobody realised at the time had really strong side effects on the brain. In my case it turned me into an out-of-control compulsive gambler. I lost my house (worth around £500,000), my career and everything I owned. My family moved away and my first wife and I got divorced. I now live in a rented inner city dump.

I now take the correct drugs, but still live in poverty with PD. That's life. No point in whingeing. I just get on as best I can. And - even worse - I'm not permitted alcohol with these drugs; I haven't touched a drop for over two years! How's that for being unfair!

I'm not trying to be hard on you Merker, or belittle what you do for the family. I just want you to notice the good bits and acknowledge that your ailing relatives would happily swap places with you in an instant, given the chance. It's no fun, you know, this PD!

Ray.

At the end of the day, this isn't about toilet seats,guinea pigs, goldfish,showers,homebrew,who said what to who, who did what and when. Nor is it about who is suffering the most,whose life has been most miserable, who is to blame or even what is right and what is wrong.

Its about three good people struggling to cope.

Becoming angry and frustrated because this isn't the life they thought they would have and becoming more and more scared of what lies ahead.

No different than the rest of us ?

Toots

I agree with Tootsie’s post above.

A family is something that is created by being just that.
When the chips are down and a member is in need all pull together to supply the tools that person needs.
If the house depreciates in value because of a new shower then so be it.
That shower just might God forbid serve you one day.

Having your own space is the normal thinking of any young person but believe me many then find they wished they were back home with less responsibilities , bills, washing , cooking to do etc.
I can understand the frustration that it must be to see friends that have a very different life style to you and probably appear to have everything you rightly feel robbed of.

I think you need someone; maybe an outsider to sit all of you down and make a plan of action that can relive the tension and possibly make living together work because at the moment it isn’t working very well for anyone.

I’m not saying it’s easy but your mum has every right to live in surroundings that she knows and in her heart probably loves.
Pulling together is not just about bill paying or whose turn it is to clean the goldfish.

Life sadly is also about sacrifice and at times that can be hard for all of us. Maria Robinson once said,
“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.”

You need to build that new path to a better ending and that my friend needs hard work and lots of love for the person that gave you life.

sorry for the late reply guys, Thanks tootsie =D


NCN - The dilemma with the shower wasnt 100% regarding devaluing the house, or anything like that. The strong belief I have regarding PD is if a sufferer is waited on hand and foot 24/7 then they get lazy, sink down a non active path and decline sooner than expected. This was highly learnt from my uncle. When he lived here we made the mistake of doing it all for him. He sat in a chair all day, we cooked him dinner, helped feed him, got him drinks throughout the day, helped him get to the toilet, put everything out in front of him so he didnt have to move an inch. Then guess what? 1 day we realized we were not helping him but in fact making him worse. We decided to let him do it himself instead and guess what? He was a changed man. He got his own dinner without a problem, started exercising daily by walking up and down the stairs 10 times, and even had an occasional kick about in the garden with me.

That relates to my mum. If the shower was located a few feet away from her chair in the front room what challenge is there for her? there would be no stairs to walk up, just simply walking a few steps towards the shower and out again.

Outside help would never become apparant due to rightful beliefs on what has happened in the past (as i mentioned in a previous post i think, part of what made my uncle bad was the medication health professionals had been making him take and the way they kept increasing doses. My nan reduced his doseage and didnt give him certain tablets which completely helped with him becoming a changed man) and trust is very low from the times they have let us, my mum and my uncle down constantly.

Since making the post things have calmed down in the house which it was always going to. It was 1 of the bad days here, they happen now and again.


Sacrifices have always been made in this house for others. Even my mum knows full well what lazyness did to my uncle and in fact refuses a lot of previous support that had been offered because she wants to stay independent and active for as long as possible (this is backed up by physio's who often help PD sufferers). The "lazyness" term I use isnt really a bad phrase. Fit and healthy people who are not ill also must face difficult times where they have to do extra things and work harder to achieve their goals, if they just give up and sit there then things will just decline.


As toots says thats exactly the way things are and some days get that tiny bit worse than others. Naturally if a bad day happens, when the next bad day happens people dont cheer themselves up thinking of the good days in between. They make themselves feel worse by thinking of that previous bad day until things have all blown over and its back to calm times

merker - no doubt some PwP are "lazy" as are some people without PD. In the context you describe, might it be better to use the word "inactive"
Just a suggestion

yea thats more the word, sorry I think I came upon the lazy word to give it as a reflection of myself (such as meaning not lazy in helping and whatnot, but in a sense that im too lazy to go to the gym when I know full well if I did it would help me and make myself feel better/healthier in the long run) but used it in the wrong context.

Many people with PD do have physio's (my mum included). They also try to say the same thing (but in a better way than I am with words) where the key is to push yourself as much as you can with daily exercise and challenges. Where I used it to describe my mum I meant theres no point getting a shower downstairs when she is still mobile to go upstairs because she will lose out on that exercise regime of having to go for a bath upstairs

Hi Merker

Briefly - my O/H has had physio's and yes they do want him to do the exercises but they also stress the importance of rest periods. My O/H does way too much usually. Look where that just got us!

Hi Merker,
I think it's really good that you have found somewhere to share your frustrations and questions, so well done for joining Separately from your family, is there anyone you can talk to - perhaps a friend or a counsellor? It can be a difficult illness for the family and the sufferer, and the only thing you can do is hold your tongue if your mum is having a tough day. Underneath it all, she's still your mum, who once cared for you too.