Daughter of Early Onset PD Lady - New here


#1

#2

Hi

Having trouble posting! Have written a big screed a couple times and it's not saved - testing!


#3

Hi all,

My mum was diagnosed with early onset PD in her mid 40s. Now, nearly 60, she has done remarkably well at controlling this and not letting it affect her life. She had to give up driving and take early retirement quite quickly due to the symptoms and nature of her job. Her health has deteriorated more so in the last 5 years and unfortunately in July 2015, we lost our Dad and she lost her husband of 40 years extremely suddenly and in a horrible way.

Since then, she has lost stones in weight and her condition has started to take over her life. She experiences awful freezes and stuck moments, panic attacks and anxiety and has lost stones in weight. It has gotten to the point that I have to stay the night with her as much as possible or she stays with me. And if she does try to stay on her own, she calls me to go over until her freeze or panic attack passes.

I have two babies under 4 and I also work part time. I am feeling overwhelmed by it all and I am seeking support or advise on all of the above, particularly the anxiety and panic attacks.

I know that it is killing my mum inside that our roles are reversed and she relies heavily on me daily. She was the matriach of the family and her pride is hurt. She thinks she is too young for support groups but I think I might have talked her into going to one next month. Her problem is accepting the change and admitting she can't do what she used to do and also find ways to entertain herself but she is so low and her grief so raw, I just feel helpless. I feel like I have lost her as much as I've lost my Dad.

Any help or advise would be much appreciated.

 


#4

Hello JLC,

You have definitely come to the right place to discuss your concerns about your mother. You sound like you are doing your best to keep all of the plates spinning but you also need support.  I was diagnosed last summer and it took me some time to accept it. I would cry at the drop of a hat at home and at work. 

Your Mum could really do with talking to someone, her PD Nurse for example in the hopes that it will encourage her to attend a support group.  It sounds as if she hasn't been amongst others with the same condition yet and this could be a massive turning point for her if she could muster the courage to join a group.

You may find this section below useful and I wish the best for you and your Mum.

https://www.parkinsons.org.uk/forum/carers-friends-and-family

Joanie


#5

JLC.

You need, if you have not already done so, to contact social services for some help and a carers assessment. I was so................reluctant to do this  but did so almost a year ago after long time pressure from my family. It took some time but I now have help  for some hours a week which helps a  great deal.

It took me some years to get my OH to attend our  local PUK branch but is is really a very good decision to do so. So many benefits, not least the socialising aspect.


#6

Hi jlc22,

My symptoms and life sound like yr mum’s apart from not losing my husband!! I feel my health has a big affect on my immediate family and makes me feel useless and often alone even if around people.
I’m now in process of seeing what help is out there so as to take pressure of them but not easy to accept yr no longer able to do what u once could… mainly everyday simple things like housework, shopping, and like yr mum have to have someone with me a night cos it makes u feel more alone and anxious…

On positive side accepting it and being honest about how u really feel instead of putting up a front an bottling it up side was what was making things worse. Instead of me stubborn an not accepting outside help I’ve now change the stubborn energy in to trying the things back in my life that I can do an enjoy. .Even though it will present with new challenges I feel positive it’s for the best…

think it’s hard for mum cos she lost her husband who would have been there in always to help an protect her especially at night, an her job which would of been an outlet an her independence of driving… but think u also need help cos sounds like u could end up in a pickle yrself taking it on, on yr own…
I started by talking to my GP who I get along with really well… now hopefully even though lots more hurdles to face feel positive to do so…

Sorry not sure if that helps or makes any sense especially at this hour… haha…