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

For some reason it is hard for some people to understand the fluctuating nature of some people's symptoms.  Is it possible that one or two of the family have actually passed remarks along the lines of "Well, you were al l right this morning, last Sunday " etc.   It must difficult for you as in theory your stepfather is the main carer.  Normally I would advise getting a "Carers's assessment" but I think this is for a main carer..

An occupational therapist could advise on where to put grab rails if necessary but there is usually a long waiting list.  Your mother might not want to wear an emergency button.  I couldn't get mine to jse one at the age 90.  But a mobile phone with a (can't think of the word) to hang it around her neck might be an idea. with an emergency number on sped dial.  Is  there by any chance a "Young Onset" group you could take your mother to. "Young Onset" in PD terms certainly  includes a 53 year old.   Follow the links from "Support for You" at the top of this page to find groups in your area..

No doubt  you will  get answers from others on this forum with more experience of this kind of situation.  It is always difficult when you feel the responsibility without the power to act.

 

Best wishes.

3

A pendant that you press to a  fully manned 24/7 service, available for a small fee from your local authority, is essential, as is a box  fitted outside with a code for emergency services to access the house if  there is nobody there to answer or open the front door. The code will only be provided to the  emergency services IF the call button is activated and no response is received.

We have also had   numerous grab rails and an extra  stair rail put in place, again by a company that serves our local authority and only charges for  the materials used.

4

Thank you both for your advice:

Eileenpatricia, I have looked up following your advice and found a local support group that it can't hurt to ttend- Mum won't go, but there's nothing to stop me going by myself? You're right, she wouldn't wear a panic button, but she might wear the phone. Thank you for that

Benji, I will definitely keep suggesting the grab rails etc to my Mum

 

Thank you both again

Saff x