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Can't cope

Posted: Thu Sep 28, 2017 10:17 pm
by Wayne_1709
Just been woken up by screaming wife stuck in the bathroom. She has Parkinsons and every night this week I've got her to bed only to be woken up hours later because she's got up and decided to go downstairs even though she might get stuck and have to wake the whole house up to get back to bed. I just can't cope with it. I've tried to keep it together for our five year old daughter and it's the "right thing" to do but really how much are you supposed to put up with to try and keep a family together? I can't cope and I would have been long gone years ago if we didn't have a little one

Re: Can't cope

Posted: Thu Sep 28, 2017 10:33 pm
by MrsAverage
Hi Wayne
I'm sorry it's got to such a point. I myself have no knowledge of Parkinson's but think the people here may be able to help or understand
https://www.parkinsons.org.uk/informati ... parkinsons

Meanwhile letting vent of frustrationshere is good , better than keeping them I
Kr
MrsA

Re: Can't cope

Posted: Fri Sep 29, 2017 5:18 am
by bowlingbun
Hi Wayne, I hear your frustration! Is she not aware, or doesn't care?
You do not have to stay with your wife, and in view of her disability, I suspect you would be in a good position to gain custody of your daughter.
Have you thought about going to Relate, formerly marriage guidance? It sounds like your wife has become so self centred that she is not considering the effect of her behaviour on either you or your wife.

Re: Can't cope

Posted: Fri Sep 29, 2017 9:03 am
by jenny lucas
I, too, know almost nothing of Parkinsons, other than that I associate it with 'old people' ,and if your child is only five, clearly it must be able to strike much, much younger.

I do think that BB raises a vital point - to what extent does your wife make an effort, within her actual physical (mental?) capabilities, of HELPING you manage her/your child, and to what extent does she 'collapse' on you completely? Again, I'm sorry if Parkinson's can affect the brain such that it affects what, for want of a more accurate term perhaps?, her 'morality' or 'sense of right and wrong' etc etc. To what extent CAN she make 'moral' decisions - such as 'What can I do to help my poor husband cope with this very, very difficult situation that my illness is creating?'

It's always difficult for anyone who is severely and continually afflicted with ill health to think of others not so afflicted, and I'm sure that 'self-centredness' does become something of a constant risk. But, the brute truth is that her condition is not your fault, and in that respect she has been very fortunate to have you stick by her, and so at the very least should not be taking that for granted.

What is she like 'otherwise' would you say? Is she appreciative, affectionate, supportive, companionable etc etc (again, within the limits of what Parkinson's does to her brain). In other words, if you wrote a list of 'good/nice' things about her/her behaviour, and a 'bad/not nice' list, would there be enough on the former to encourage you to continue to invest in this relationship?

Another important exercise to conduct, I would say, is to 'fast forward' - what, bleakly, is her prognosis? Is she likely simply to worsen (terminally?) and over what time frame? Conversely, are there any new treatments coming out of the research labs and into mainstream therapy, and again, over what time frame? (I would think, if your wife is the mother of a young child, she should be in the priority list for receiving any new therapy surely!)

When we are 'stuck in a nightmare' it's very hard mentally to draw back and try and assess the situation objectively and top down, and over a longer time period, but I would say it's essential to try and get that 'long view' of what the future with her is likely to hold.

Lastly, but in fact most importantly, I think you have to look long and hard at the impact on your daughter of her current family life (or lack of it?). At the extreme, would it be in sum 'better' for your daughter NOT to be raised in a household with a mum behaving as she does now, and, possibly, with 'worse to come'? Or would being raised by a single parent (you) be worse?

Again, an honest (and probably quite painful emotionally alas) list of 'pros and cons' of you staying with your wife, or leaving, as affects your daughter, is required.

Whilst I would definitely agree that some form of relationship counselling would be a very good idea, I think there is a fair amount of 'preparatory' work that you can do now, by way of thinking in the ways I've suggested above.

Wishing you (all) the best possible in a very difficult situation. Kind regards, Jenny

PS - another way to 'assess' your wife's behaviour is to compare it with what she was like before the Parkinson's got its grip on her. Has her personality changed profoundly, or is she 'more or less' the same person she always was? Sadly, illness does not automatically turn people into 'saints' - though of course, with Parkinson's there is the added layer of complication of the brain's impact on what a person 'is' . All very complex....

Re: Can't cope

Posted: Fri Sep 29, 2017 9:17 am
by Wayne_1709
Thanks guys, calmed down a bit now. Tried to chat this morning with the other half but she can't see my side. Her Parkinsons means she freezes and cannot move sometimes, which is getting more often than not. She spent most of the day in bed yesterday crying and saying she wants to die which I can cope with just about and try and cheer her up.
Then her meds start working around 6pm so I understand she wants to get up, because she can. But then I'm so exhausted from a week of not sleeping and the constant sadness I go to bed early around nine to then be woken at 10 because she's stuck and she thinks it's ok, but I'm at the end of my tether.
I worry that if I did leave she would get custody then our daughter would become her carer, and I really couldn't let that happen.

Re: Can't cope

Posted: Fri Sep 29, 2017 9:40 am
by Wayne_1709
Thanks Jenny

Parkinsons is so fickle, but I think my wife's Parkinsons is pretty bad compared to say Micheal J Fox. She's 46 and was diagnosed two years ago. Initially responded well to treatment but she's at the stage where she's taking other drugs for the side effects and that can't be a good thing. The only hope I can see is Stem Cell therapy which is about to go to human trials in Japan which I'm pushing the Neurologist for but he said wait until it's proved to be safe which could be 10 years away.
Mentally she suffers with severe anxiety whilst in an "off" state so is taking meds for that which causes manic episodes on top of the mania the Parkinsons meds cause.
Personality wise she was outgoing, positive and happy. She's travelled to South America, New Zealand etc by herself and now she's generally depressed.
Her main hobby was excercise which she can no longer do. It's just all so sad

Re: Can't cope

Posted: Sat Sep 30, 2017 7:49 am
by Leigh_1709
Hi Wayne
Sorry to hear your finding it hard to cope.
Just seen your post.
I am a carer for my son who has mental ill health and ASD, I have a husband with aspergers and mental health issues.
The problem is i feel they have driven me crazy. Cannot sleep as my son up all night tv loud cooking in middle of night and smashing house, he smokes all night am worried there willbe a fire.
My own mental health is shot to bits! having panick attacks and dont even want to leave home as anxiety so great they are both emotionally abusive.
My husband has a car butr he refuses to go and dump rubbish which is everywhere.
I see you are having to cope with a wife who has Parkinsons i know its different but sounds similar in ways.
Feel free to chat i know i have gone on but just cannot cope bit like you it seems.
Leigh

Re: Can't cope

Posted: Sat Sep 30, 2017 3:12 pm
by Melly1
Wayne_1709 wrote:
Fri Sep 29, 2017 9:17 am
.... Then her meds start working around 6pm so I understand she wants to get up, because she can. But then I'm so exhausted from a week of not sleeping and the constant sadness I go to bed early around nine to then be woken at 10 because she's stuck and she thinks it's ok, but I'm at the end of my tether.
Hi Wayne,

Sleep deprivation is the worst thing, no wonder you are feeling desperate.

This might be a silly suggestion, but if the timing of her meds were jiggled, would it be possible for her have her energy burst and be back in bed again before you go to bed for the night?

How old is your daughter?
What would she say if questioned about where she would like to live? Can you best guess what her arguments would be to justify her decision?

What does your wife get up to when she goes downstairs, gets stuck and then wakes you all up, shouting for help?

Melly1

Re: Can't cope

Posted: Sat Sep 30, 2017 5:21 pm
by caroline_1702123456
You are star juggling the needs of your wife and 5yr old is their any chance you could could get care in and have little braek with your daughter or even pay for a carer to sleep in one night night

Re: Can't cope

Posted: Sat Sep 30, 2017 9:17 pm
by Wayne_1709
Thanks for all the comments it's really nice to talk to someone outside of the situation!!!

I think we are going to get assessed to see what support we can get, but reading about others' experiences I'm not holding my breath there. We wouldn't afford any help privately as I've had to give up work and my wife is getting a small pension.

Drugs wise it's very difficult at the moment as my wife is on a trial of a new accordian pill which seems to kick in when it feels like it so it's difficult to predict when her good periods will be.

I sort of think that she's more likely going to get worse sooner rather than later as her Parkinsons is very aggressive, I think if I knew it was going to be a year or two I could hang in there but if it was going to be ten years I just couldn't cope. The neurologist won't answer questions about prognosis, he just says everyone is different, but surely he should be able to give his best guess based on his experience about how quickly the symptoms are likely to progress?

Leigh your situation sounds terrible. Can you not get any respite care? I can totally empathise with the mental health. Living with illness and anxiety makes your own health and anxiety worse. Do you get time to yourself? Do you exercise? I've promised myself either a swim or a run this week, it's one of the only things to help anxiety, apart from alcohol but sadly that only cures it for a couple of hours!