Parkinsons and a five year old daughter

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My wife was diagnosed with Parkinsons two years ago. We have a five year old daughter and between them they are driving me crazy. The last few days have been pretty rough and been thinking about getting some help. Any advice would be much appreciated.

Hi Wayne,
Welcome to the forum.

I think a lot of parents who aren't in a caring situation are feeling pretty crazy now and clinging on to the fact that the school holidays are nearly over and routine will be rrstored. Did your daughter do any playschemes over the hols? If not, that's something to investigate and get her name down for, before the next long holiday.

Do you and your wife receive any practical support at all? Does your wife access any services?

Hi Melly

Thanks for your reply.

Yes the summer has been tough, it started well, daily park visits and swimming but then my wife was in hospital for two weeks due to a change in drug regime so balancing a two hour round trip to the hospital with trying to keep our daughter entertained and reassured was tough going!!!
Think we've saved the summer though with plenty of days out and holidays since!!!
She doesn't really access any services, just a Parkinsons group but they are generally much older and not quite as ill as my wife. On a bad day she can't move at all.
We don't get any practical support. We are in the process of applying to get the house converted through an Occupational Therapest but I think it's going to be too expensive.

Thanks again
Does your wife claim PIP?
It's time to get support. Ask Social services to give your wife a Needs assessment ... -assessmen to see what help she is entitled to and request a Carers assessment for yourself to see what help you are entitled to ... assessment
Your wife needs long term care and you are going to need support with this for the sake of all three of you.

Thanks Melly

Yes she gets PIP at the lower rate but we are in the process of reapplying for the higher level.

I think we're going to get assessed as you recommend, sound like we should be entitled to some help.

Thanks again
Also find out if there are any "young carer"groups in the area, because they will supporoher in years to come. Are the school aware of the situation?
Thanks Bowlingbun

The school are aware and have been brilliant so far so no worries there. We have childcare before and after school too so that makes things easier during term time.

Not sure about young carers groups, do you mean for my wife or our daughter? Our daughter does see everything unfortunately, and my wife fell down the stairs a couple of weeks ago and our daughter saw it all. Shes been pretty resilient so far bless her...
Hi Wayne,
She means for your daughter, though I expect she is a little too young for the groups at the moment. If you google " Groups for young Carers," you will see what's available. The groups are run by various charities and meet to allow the children to have fun and a chance to talk about the impact of caring on their lives with folk who understand, if they want to.
hi wayne just read this. we had a young child well 5 if im honest when my husband was diagnosed and luckily his two are from his first marraige and i only had one at home as the others had left home. its tough, his kids now dont want to know and im fine with that i spent 13 years trying to get them to want to know him but they dont and its all down to the illness. i dont think they think its cool to have a father who needs to walk with a walker or a stick so thats fine. weve had our ups and downs with our son who ended up moving out at nearly 18 because he couldnt get his head round his dad having pd and although we have put all our efforts into family holiday and whatever and the kids always came first as the illness progressed my son couldnt deal with it and got very angry and had emothional issues so he decided to move out, however that was 3 years ago and we supported him in his desicion and he is not some lay about he has gone to uni and is doing foreign studies. at the end of the day the kids dont ask for this but remeber neither did you or your wife, and its like parenting noone gives you a rulebook, they just give you a diagnosis and pretty much tell you both to get on with it. go to a support group for pd we set one up and all it is we go down the pub once a month and people just chat about stuff and weve done that 5 years and it helps. the only problem is that i have been too focused on helping others i forgot myself in the process!! which doesnt help.
Hi - hope this isn't butting in, but just wanted to add a little to the 'children and parental illness' issue. Yes, of course it's a big, big thing for a child to have a parent with a serious illness, but in a way, you know, it DOES, whether anyone likes it or not (!), 'grow them up faster'.

It has to - as in, it can't not. It is, in a way 'Childhood's End'.....

And yes, maybe they do resent it. Maybe children do just want 'normal parents like what everyone else has' (as they blithely think!) and yes, their 'resentment' may actually mask fear, but in the end, they do have to accept that they are NOT alone in having 'parents with difficulties'.

In fact, really, when you think about it, there can't be many families that DON'T have difficulties! Children do often think that 'everyone else' is 'normal' and 'OK' but then when you look at their friends you can see all sorts of things that THEY are coping with - from divorced parents (possibly even the 'norm' now, statistically???), to mental health and addiction isues with parents (again, frighteningly common) to physical health issues.

I do think maybe there is a tendency in 'society' these days to perhaps 'over-cosset' children, or even 'over-medicalise' them - as, for example, how much of the much-vanted 'teenage mental health epidemic' where teenagers are labelled 'mentally ill' with all sorts of 'issues' is actually just them being 'unhappy' - what I call 'CTY' ie, (CrXp Teenage Years)!

In way, you know, since it seems that many teens are going to get a label for being 'mentally ill' whatever happens to them in their lives, at least, speaking a little 'ironically' here, if they actually DO have 'real problems' to cope with (eg, a parent with a severe illness) it does give 'something to medicalise'........

Sorry if that sounds a bit cynical or unfeeling, but then, you see, I write as someone who had to watch their young teenage son cope with their dad's terminal cancer, and death before he was sixteen. Now, THAT is something to cope with.....

I do think, in summary, that when children have to grow up with 'serious illness' in the family, the 'upside' is that they DO 'grow up' and perhaps become more mature adults a lot 'faster' than their 'carefree peers' (who are being labelled for having CTY syndrome.....)

I hope your son does manage to come to terms with what is happening, and please don't lose faith that he will 'come about' as it is, indeed, a BIG thing that he is coping with - it could well be that his years at uni will help him see how 'mature' he is because of that, compared with the 'minutae' that his friends may be angsting about (the paradox is, of course, that those friends won't know how 'trivial' their own problems are, because they have NO IDEA what it's like to have the kind of REAL problems in life that boys like your son and mine have had to cope with .....)