Feeling alone in trying to support Mum

Living with Parkinson's Carers, friends and family
1

Hiya,

I have never had the courage to post before, but I feel it could be helpful to seek advice from others with family suffering with PD.

My Mum is 53 and was diagnosed around the age of 40. I didn't have much to do with her during my childhood and PD was the elephant in the room, the 'clumsiness' that saw her have to give up work and return her driving licence and consequently, much of her independence.

Now I'm older, she is less secretive, but she glosses over much of the PD and puts on a brave front, and my Step-father buries his head in the sand, my Dad isn't understanding and my uncle is busy, and there's no one to raise my concerns with, hence why I am here.

Mum had a nervous breakdown in 2003, which was attributed to a reaction to one of the drugs for PD (I'm afraid I don't remember the name) and she has never escaped from the depression and intense paranoia that accompanied that. She had deep brain stimulation around 7 years ago, and while she now has no tremor day to day, she is incredibly rigid and finds it difficult to rest, and is also upset that he face visibly 'grimaces' without her intending it to, and while she is unable to do anything about it.

She falls day to day and I worry that while she is at home on her own (my step father works and I live elsewhere) she may hurt herself seriously and be unable to alert any help. I don't know if there is any way the house could be made safer for her to get around it. She would not agree to any occupational therapy kind of help (if there was even any available) as her paranoia is such that she feels people are 'watching' and trying to penalise her for claiming she is unwell, when on some days she is much better than others.

I suppose I'm trying to say that I feel helpless, and that no one in the immediate family is willing to discuss any concerns with me when I try to raise them, and I suppose I'm asking if anyone as any suggestions as to anything I can do for my Mum? I try and go and see her once a week, at least, and take her wherever she needs to go, and encourage her to try and get out a little if she can so she doesn't become fearful. However, I do not spend too much time there as I have my own mental health problems and in some respects, I add another burden to her plate and we spiral each other into depression after a while.

Thank you for taking the time to read this,

Saff

2

Saff

Many many thoughts and emotions came to me when reading your words.  I'm sure you're aware that you and your mum need support that is so apparently lacking.  Where family and friends are for whatever reason unable or unwilling to help, local help groups usually exist where sharing experiences and solutions can be a lifeline.

Start by looking online for a group to get support for your health issue, your mum would want this for you, I'm 53 had PD for 9 years, and it's what I'd want for my 3 children 21 to 26.  

You mention taking mum to where she needs to go, do you go in to see her PD Nurse with her, it would help I think.  Find out about local groups to identify who in your area face similar issues, sharing does lessen the burden and form new friendships.

I tend to go on a bit in posts, so I'll stop there to see if the above is helpful before offering any more opinions.

Take care.

 

3

Thank you so much for taking the time to reply. I am a similar age to your children (23). I appreciate your urging for me to address my own health- I receive weekly support with a specialist team and they try and support my Mum in it also, so, thank you.

I'd feel it was an invasion of mum's privacy to ask to attend an appointment with her unless she specifically requested me to? 

I have just this morning found a support group for sufferers of PD's and families in my local area and while Mum would not entertain the idea of going, I may go and see if it offers anything constructive that I can do.

It's just trying to convert feelings of being helpless to aid Mum into something constructive, I suppose.

Thank you so much again

Saff x