Hi. I'm 32 and new to the forum. My mum was diagnosed a few years ago - just around the time I fell pregnant. She and my dad claim to be delighted by the arrival of my little girl and now look after her a couple of days a week. This was entirely under their instruction: I did not expect them to offer and obviously it's wonderful that they want to be part of her life.
However: I get the impression more and more lately that my mum finds my little one hard work, both physically and mentally. My dad confided the other day that he finds the lion's share of the childcare falling to him and he ended up having words with mum about it. Of course, my reaction was to instantly say that I would put my girl in nursery - I hate the thought that she is a burden to them - but he says no, they would both see this as 'failure'.
So... what I'm asking: is PD a good or bad thing when it comes to childcare? Do you guys have any experiences of looking after a toddler in the early days of diagnosis (not sure which treatments she is on, but she shakes visibly in the hands?) Is it 'good' to be 'kept busy' or is that just a cliche? My real concern is that she will not admit to finding the childcare too much. But equally, I do not want to 'take away' something that they genuinely enjoy doing... my mum is very secretive about her diag (pretending it doesn't exist) so I just have to take it on face value when she says she enjoys looking after my kiddo. As I say, I'm new to this so would appreciate your kind responses. Thank you.
Welcome to the forum
I'm 47, was diagnosed 8 years ago and my experience of childcare comes from looking after my own two (a boy aged 9 and girl aged 6). Your mum is very lucky to have what sounds like a supportive and loving family around her.
Parkinson's is a very variable condition so its hard to know exactly what it's like for your mum. It is possible that she is getting much more tired than she used to, possible also that lack of dexterity is making things tough. Depression is a common side effect of Parkinson's or the medication. Depression has been a bigger impact on me than the physical effects.
I very much understand the bit about being secretive about the diagnosis - I did that too and I kept it up for several years. My secrecy was a reaction to my initial terrifying attempts to research Parkinson's after diagnosis. In the last 2 years I have been open about it and have been much more able to deal with my fears and to realise that most of them were unfounded. When your mum is ready to talk to people it's almost certain that she will feel more positive.
Having a grandchild and being able to spend time with her must be lovely. It may well be a great help to your mum as well as a challenge. Looking after young children is tiring even if you don't have Parkinson's. It might be worse for your mum. Equally, looking after your little one may be the most rewarding thing in her life.
I'm aware that I have not told you much, if anything, that you did not already know. I hope you find the right solution for all concerned.
I hope that helps in some way
Hi Ros , I think I get a bit where your parents are with this . I am 57 and was diagnosed about a year ago ( and no longer work ) and have spent most of the last 12 months in total denial and hoping I will wake up and it will all be normal again . This has been quite tough on those around me . My wife works 3.5 days a week and I have a caring role for my grandchildren who are 6 ; 2 and 4 months as my daughter ( like so many needs to work - on maternity at the moment) . My grandchildren are my world and I love them all to bits but I have had to accept that I can only manage with 1 at a time if I am on my own ( with my wife we can manage all 3 for a half day or so ). I worry that I might stumble or forget something ! On the up side they do lift my depression and nothing can compare to them running in and throwing their arms round me and saying they love me . I have sensed my daughter worrying that she is putting pressure on me ( 'don't worry Dad I can manage etc ' )and I have told her not to worry as I need to be occupied even if it does tire me out ! I have always had a busy working life until now . If the choice was not to have my grandchildren around me I really would get pretty low and desperate . The children seem to realise I have some limitations especially when ' shaky Granddad ' tries to feed them which is always good for a giggle ! I wish you and your family well .
Welcome to the forum. I am 53 and was dx 21 months ago. I work in a Nursery with children aged 2-5 and it is hard work. Our children only attend in the mornings and most of the carers are grandparents.Are there any playgroups or nurseries in your area that your child could attend for a couple of hours, a couple of days a week. This would give your mum and dad a bit of a break the days they have your little one.but still makes them feel they are helping you out. Your mum will have good and bad days but, a bit like myself she wont want to give in or give up doing things she loves.
I am similar age to your mum I expect and been diagnosed 2 years.
I am generally ok in the mornings and get very fatigued in the afternoons. But we are all different.
I pace myself so that I what I most want to do.I would find a whole day imposible.
But there is always a way round things, could your parents do half days? or could your dad take her someone like library story telling while your mum has a break.
Can she go to nursery for half days.
Maybe doing childcare and their own housework is too much could you pay for a cleaner for them so they can have more energy to do what they want-looking after their grandchild.
Keeping busy and having a rewarding relationship with their grandchild is so important. Also she will get easier as she gets older and understands they cannot do so much.
Wow, what an amazingly thoughtful set of replies. Thank you so much everyone. It's been a busy week at work and mum has kept herself equally busy - taking my little one to carol concerts, christmas parties, santa's grottoes - you name it! These are all related to church groups that she and dad have discovered and they have helped with childcare enormously. My toddler is at the age when she will trash the house given the chance and they allow a bit of 'hands off' time - which as you say, is welcome whether you have PD or not.
Also this week...one of the church leaders took her aside and asked whether she had PD. Apparently (I hear this through dad) it reduced her to tears... I am partly so sad for her as it must hurt that she can't 'hide' it anymore, but equally hope it may lead the way to more willingness to talk. The post relating to secrecy resulting through fear (sorry, I can't scroll back and find your name!) is so spot-on and it's reassuring to know that this might actually change over time.
I also find it very interesting to know that she may feel much more tired in the afternoons. Perhaps I can try to change my working hours to get back to my child a little bit earlier.
Well, it's been great to know that there's people out there in the same boat and I'll certainly keep an eye on the forum. Oh, and introduce my dad as I know he'll find it a great help. thanks again everyone.