I cant stand it


#1
Hey guys. A while ago I explained the situation.

Im 24 and live with my mum (48) and nan (74).

My uncle had PD, he died last year :(.

My mum also has PD and she is starting to drive us insane.


She has trouble walking and cant walk without someone holding her, a frame or a stick (although she can fall over sometimes even with a stick)

She is getting to be more of a nuisance than my uncle was.

The problem with her is that she is very stubborn.

She claims she can still do things around the house but when given the chance she falls over.

My nan baths her, gets her out of bed, cooks her dinner, gets her drinks throughout the day, sees to her in the night (when my mum has breathing problems and panic attacks each night), cleans out fish, guinea pigs.

Anyway we just had a big row. My mum told this person she would have 2 more guinea pigs a week ago. I explained to her it isnt fair on my nan because my nan would have to clean them out, not her and my nan is an elderly lady afterall which isnt fair.

My mum said she would do it and she really started getting to me by saying "its my life, ill have what I want". I explained we are only looking out for her and that if she tried doing it she would fall and hurt herself n it will be left to my nan to do who is under enough strain already.

Anyway things escalated and another problem happened. Now what I hate about this house which belongs to my nan is the sacrafices we have made for my mum. We had a higher up toilet seat installed for my mum, bath rails, decking and a ramp out front and back, a bath seat and more things. Im a young lad and it does ruin my life. Im obviously going to have girlfriends and friends up to see me. What do they think when they see all that stuff lying about?? A lot of people are totally not understanding and would run a mile from me.

Relating to that my auntie suggested ages ago about knocking down our passage wall and installing a walk in shower for my mum there. I personally could never live with that since I have my beer brewing quarters around there and its hardly nice having a shower right next to the front door where people can see you in the shower (its bad enough already having to use the toilet with the door wide open cause it wont shut due to the higher seat thats on the toilet). My nan said the other day we wouldnt be getting 1 there and it was only a suggestion but my mum was adamant today that the wall was being knocked down and I cant do a thing about it.

She said a load more horrid things to me like im not her son and im just a baby who doesnt help out (in fact I have been painting half the house and when they were on holiday last week I spent the whole week tidying and clearing up the house so it was nice for them to go back to). I went mad and said I cannot stand her and wish she would just go away.

I went out the room and came back to see my mum in tears.... because my nan would not side with her.

My mum tried putting a few more blows into things by saying I was horrid to my uncle. The reality of it though which I explained ages ago was that he was my best mate. I went to football games with him and loads of other places. The reason I was angry or annoyed at times was at the illness and not him. In fact it was her that was horrible to him. I remember when I was younger and he had PD so was slower at doing things. She used to have a go at him calling him useless and as a kid it bought me to tears most days.

Shes still sticking to her stubborn guns now saying shes given up on life now, that she didnt register my birth so I dont exist (I even showed her my birth certificate).

Her "lifestyle" support worker is coming up later to take her to gym and shes told my nan shes not going now.


I hate it. Shes my mum so I love her. I just hate the illness she has. I hate the way she is stubborn and I feel sorry for my poor nan who has been making herself ill by doing all she can for my mum.

When my mum gets an idea in her head she sticks to it and gets stubborn about it. She doesnt care who she hurts and doesnt think of the full reality of it.

Just 5 minutes ago she said she didnt ask for PD. She burst into tears and I said we all care about her and love her but she has to also think of the strains my nan has been going through with her but she said "well I hate you all"

#2
Well just to add a bit more. My mum went and got her walker frame and bag ready for the carer to take her out. She refused my nans help and when I went in the front room she said she hates us all.

Then my nan said she wont be here when my mum gets back.

I got sooo annoyed cause we all love my mum. N ideally I know full well if my nan passed away I couldnt cope with my mum so she would have to go into care. I dont want her to go into care because I knew when my uncle went it was nearly his final days.

I know that extra strain on my nan (i.e more guinnea pigs to look after) will cause her that extra strain which could well be fatal for her. If my mum didnt get them however it would be less strain for my nan and could mean she lives for many more years and my mum gets to stay at home.

I flipped a bit, grabbed my mums bag, tossed it to 1 side and said "we love you" a few times. She burst into tears saying she doesnt want to be around anymore and how I dont care about anyone.

I even went to the extreme as to say I will disapear and then she told me she didnt want to live, she does care as im her son but she hates what I say in a row like this (likewise she says horrid things). She said she hates her body, hates the illness and is at an all time low so wants to die.


I feel very upset now. When shes stubborn and wants her own way part of me gets angry because my nan has to do the work concerning it and it causes her more strain. But at the same time I know how hard it is for my mum, I love her and want her to be in this house for the longest possible time.

The problem in a row like this is if I try to be nice and I say we love her she tells me she hates me and doesnt want to know but then if I go off on one and have a bitter rant at her she bursts into tears saying she hates her life :(

#3
Merker.

Everything your mum does which you don't like is the result of either PD or its medication. People with PD are renowned for being grumpy, argumentative and difficult; I should know, I am one, and I can be an awkward sid when I want to.

But I was quiet, gentle and agreeable before my PD was diagnosed. Your real mum is still there underneath, just shrouded by this God-awful condition. You need to look at life through HER eyes occasionally - she hasn't got much to look forward to, has she? And judging by your family's history it seems quite likely that you yourself will join our happy PD throng in due course.

You seem to be more worried about your home-brew and how you appear to your mates or prospective girlfriends than your mum's welfare. I'm sure any lass worth getting to know would be appalled to see you leaving your septuagenarian nan to do all the chores, nursing and middle-of-the-night assistance while you stand idly by moaning. So you did a bit of tidying up and painting while she was away, did you? Wow, take a medal. Even if she was as fit as a fiddle I would have thought you'd be doing such tasks, plus your fair share of household chores, all the time.

Your mother spent decades of her life raising you, giving up all her spare time to look after your every requirement, and now you're grown up and she's very ill you find the situation a bit resricting, do you?

I've never heard anything more selfish in my life.

#4
I am so grateful that my sons have never described me to anyone as a nuisance or said that I was driving them insane.. That they did not feel necessary home adaptations would drive potential girlfriends away. I am truely sorry that you feel that way
Illness & medication can cause people to act out of charater. My own mother , (who did not have PD )changed from being a capable, independant woman to a demanding at times quite a vebally abusive one. I am pleased that I did not row with her.
Your mother cannot stop having PD, your grandmother from what you say will never stop caring for her. You are young, but old enough to find altenative accomodation if you are sick of it.
I have not heard of a "lifestyle Support worker". , but am pleased that your mother & grandmother are getting some support

#5
I suggest, young man, that you go and see your doctor about your fear of guinea pigs (caviidaphobia), which prevents you doing YOUR bit to help.

#6
Perhaps, still living under your mothers roof at 24, she finds you a bit of a nuisance too.
Move out and give each other some space, perhaps you won't find her such a nuisance when you are paying your own bills, doing your own washing and cooking, you might even realise how selfish you have been.

I am a "nuisance" to my children too and plan on being so for a very long time, they and I have never argued, they have their own homes and we help and support and love each other . They understand when I am having a bad day and make the most of a good one. I love my life despite having PD, what a pity your Mum can't

#7
That isnt fair.

Firstly I work. I run a business and I work in retail. A lot of my time is occupied at either of them and I also do bits around the house. The dilema with the guinea pigs is theres no space for them. My nan (whos house it is) does the animals because they need cleaning and feeding in daytime while its light, sadly im not at home during those hours. This means not only will my nan have to clean out my mums goldfish but she will have to clean not 1 set on guinea pigs out but 2. Hardly something a 70 odd year old woman should be doing is it?

Im not saying its about me and my wellbeing. In fact if you look into my past with things to do with PD you will see exactly that I have had no life with coping towards the illness. Its my nans house and previously my uncle lived here also. He had PD. Its not very nice being a 10 year old kid and seeing your best mate (my uncle) come home and burst into tears saying he's been diagnosed with PD then seeing him go downhill from a strong kind man to one who could not even move from a chair through my teenage years. Even at that age I did everything I could to help and it certainly was far from easy.

As I came into my late teens my mum started showing symptoms... That devestated me. It devestated her even more. In fact through those years I recall her blaming my uncle because she thought its his fault and my great grandad's (who also had it). She was taking her frustration out on him. I would come home from college and she would be trying to clean some animals out. My uncle would help and if he was too slow at doing something she would have a go at him. I even remember on my 14th bday I got out of the bath and she was having a go at him. That day I burst into tears saying its my birthday... and asked them to stop.

My nan has equally had it bad. She lost her mother a few years back. Then last year she lost her son (my uncle). She has had health problems and I actually hear her every single night being sick in the toilet. Anything more could throw her over the edge.

For me I had to cope with all of that from childhood. I felt the wrath of my mums anger towards the early stages of the illness and would be shouted at and had a go at for next to no reason. Then sent to my room. An hour or 2 later she would come and appologise. It made me feel like I was in the wrong when I wasnt and as a kid I took that to heart.

Night time was never good for either of us here. When my uncle was here he would have screaming nightmares every single night. Now my mum has panic attacks and likewise screams every single night.

Going back to myself for a bit. Just passing 18 and after all the stress I was put under (not just from my mum and uncles needs) I ended up falling down the depression route. i got into drinking and gambling to block out the pain and it was only a year or 2 later I snapped. Was taken into a mental unit and assessed. I had gone through a nasty form of depression and for the next 2-3 years I was given medication and weekly counciling.

For the record I do pay my own bills in fact here. I pay fair amounts of cash every single month for rent and bills. I am in town nearly every single day and spend about £60 a week on shopping for the house



Ray of sunshine - Read the above. Its seems you have me down as the lazy type who couldnt give 2 craps about my mother. Thats never been the issue. I do as much as i can for her (everything except bathing her because no 24 year old man wants to see their mother naked. My mum herself wouldnt want to see me naked) and in this specific incident im looking out for the wellbeing of all of us here. If my nan takes it easy she may live another 10 years to be able to help with my mum. Wheras if she doesnt take it easy (i.e have extra things to do like look after more guinea pigs) she wont last that long and whats going to happen? From knowing what my uncle was like I know full well I wouldnt be able to cope on my own and with nobody else to turn to the option would be a care home. My mum would be worse from that and truly hate me for it and I will never live with myself but there would be no other way to cope apart from that. Regarding claiming i'll join them all with PD. I have thought long and hard about that actually. In all fairness they were both only mid/late 30's when diagnosed. Im 10 years away from that when/if I get diagnosed. For my mum and uncle they had 2 people there to help. Myself and my nan. I have nobody. My nan may not be around then and regardless my worst symptoms wont occur for 5 or so years after diagnosis so its likely she wont be. My mum probably would of deteriorated a lot worse and quite possibly be in a home (If she isnt by then she will be and if I have PD at that time I definitely wouldnt be able to cope). So that will leave me on my own, nobody to look after or help me, and if im completely honest to put it mildly I will no longer be alive if I get it and go down that route I have seen/am seeing 2 family members go down and well as knowledge that my great grandad went down the same path (before I was born).

What is far from selfish is basically 15 years of giving PD suffers my support and helping them through daily routine. Instead of going off with mates I would stay in and make sure they are ok.


Caroline - Thanks for the reply. As mentioned its not my mothers roof, its my nans. On the contrary to that I havent left the house yet for non selfish reasons. I could easily afford to move into a house this second. But what would happen if I did?? My nan would have to do EVERYTHING. In the house. She would be looking after all of the animals, cooking, shopping, washing up, bathing my mum, attending to her at night, helping her move around the house, gardening, mowing the lawn, cleaning, washing clothes, ironing, drying clothes, getting my mum out of bed as well as visiting my uncles grave often. She 100% would not cope and if that doesnt throw her over the edge I dont know what will. This will mean sooner rather than later my mum will lose her mother and i'll lose my nan as well as my mum having to go into a care home sooner since there would be nobody here to look after her.


Anne - Its not so much that I have been ashamed of the things around the house. It was more the way they have been positioned. The toilet seat thing was attached to the toilet and that means when people go to the toilet they door wont close. Hardly nice to walk in through the front door and see my mum or nan sitting on the toilet. We also have a bath seat actually attached to the inside of the bath. Its a real inconvenience never being able to have a bath that well cause the stained seat inside it means the bath water never reaches high enough to cover mine or my nans whole body. The lifestyle worker does take my mum out 3 times a week but only for a few hours. She is taken to gym and around town.


The downstairs shower is an issue if we had 1. Not just for my brewing quarters. Far from that. As already explained my mum can already get upstairs and is fine to have a bath (something with my nan helping). The dilema of having 1 has been explained by estate agents. They said by having 1 there my nans house value will decrease by almost £20,000. The reason for it is nobody wants to buy a house with a downstairs shower as potential buyers are capable of having a shower (and would prefer) upstairs. The other issue is the shower would go right next to the from door. Meaning if someone was in the shower when the postman/parcel man or any other visitor came they would be able to clearly see that person in the shower.

The main issue today with my mum could be an issue even someone without PD could have. Its the fact she is stubborn and if she doesnt get what she wants she will kick up a fuss and start being nasty. She does not consider other people (weather its going to mean harder work for them, or an inconvenience) because once she gets an idea in her head thats all she thinks about.


I hope this post clarifys a few things and puts things into perspective that I am not some young, lazy, cares for nobody, selfish 24 year old. The whole incident is regarding getting strain off everyone here where im trying to make sure everybody in this house lives for as long as possible. So my nan has a care free and easier retirement. My mum has a decent life at home without having to be put into care for as long as possible and I can actually start doing things the average 24 year old male does. Not too hard to ask for is it?


thanks

#8
Hi Merker. My heart goes out to you. Obviously the situation that you find yourself in is being exacerbated by the anger and tension you, your mother and your Nan are all feeling. Have you contacted anyone for help? Do you have any other family members who can give you and your nan some respite/help? The trouble is you are all now into a situation that seems to be escalating and needs somebody to come in and act as go between/negotiator to get things back onto an even keel. Then maybe you can have a rational conversation and sort things out. Is it woth phoning Social Services or MIND or the PUK Helpline. I'm sure there must be someone out there who can help.

Good luck and let us know how you get on

#9
I'm with Pebble on this, Merker. You're young, you have a life to lead, and you have every right to 'vent' your frustrations on this forum. I sincerely hope you manage to get all the help you and your nan deserve.

Best of luck and keep posting.

Lily x

#10
1. Are you really saying that running a business and working in retail is more important than your mum? Get an assistant. Sell the business. Compare how much you’re prepared to do for her with what she’s done for you over her life. My own wife (13 years my junior) gave up her job & career to become my full-time carer - despite my grumpiness - without a second thought. My own mother died when I was 20: I would work night and day for 20 years to get her back and thank her.

2. No space for more guinea pigs? What about all the space your home brewery is occupying, which is apparently preventing changes to your Nan’s (not YOURS) house. It sounds like the little pigs are about the only hobby your mum has, and you even want to take THAT away from her! And even then you leave your old Nan to do the little bit of work required on them! Need to do it in daylight? Pop home at lunchtime, or get a part-time home help. These are all just excuses. And a goldfish too? Gosh how on earth do you cope??

3. You do “bits around the house” do you? And so I should think, a fit young man living in his Nan’s house with her and your sick mother. If it were YOUR house and you lived alone you’d have to do EVERYTHING by yourself, as well as look after your business interests.

4. So you had a hard time as a kid. I’m sorry about that, but didn’t we all? My stepson watched his day rot away and die from cancer when he was ten. The following year his granddad suffered the same fate. Now his mother (my wife) has osteo and rheumatoid arthritis, and suffers from Wegener’s Granulomatosis and Churg-Strauss Syndrome – two forms of vasculitis which attack the auto-immune system. And yet she and he look after me with my Parkinson’s without a whimper.

5. You say that “Even at that age I did everything I could to help.” I should think so too; that’s what family life is all about, mutual care. And your mum and uncle had a row on your birthday did they? How dare they have some problem which encroached on your own birthday pleasure?

6. Your Nan had it bad when she lost her own mother, did she?? She’s 74, so presumably her mum was about 98. Not much of a surprise that.

7. You say you pay your own bills. I should think so too, with your own business. Don’t you help the others out with theirs? And £60 a week on shopping for the house? Are you serious? Don’t you watch the news? Groceries currently cost 54% more than a year ago. Gas is about to go up 19%, electricity 10%. Have you contributions gone up the same? In our house (3 people) simple shopping for the week costs about £150.

8. I don’t believe you don’t care about your mum. I DO believe you could contribute a lot more (both financially and in effort), and whinge a lot less. Stop feeling sorry for yourself and count your blessings. And don’t be so prudish about nudity: if there’s an emergency and you end up seeing each other naked, so what?

9. I see you’ve already decided that when the time comes you won’t be able to cope with your mum on your own, and are therefore planning to put her into a care home. No two PD patients follow similar time lines: you can’t assume that just because it took your uncle 10 years to go through a particular phase it will be the same for everyone. I even know a guy who was diagnosed at the age of 8.

10. Start thinking more laterally; you may need to change your life much more radically than you’ve contemplated so far.

Take care.

#11
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 :)

#12
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.

#13
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 [u]anything[/u] 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.

#14
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

#15
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.

#16
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

#17
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

#18
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

#19
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!

#20
Hi Merker,
I think it's really good that you have found somewhere to share your frustrations and questions, so well done for joining :wink: 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.