Hi everyone,
I don’t know what to do or where to start.
My mom (78) had an appointment with the neurologist 3 years ago, nothing came of it( her now doctor says she should have been sent for a scan then). She now has an appointment with the neurologist on Tuesday following her DAT scan with was a month ago.
We are on holiday but I am happy to come home go with her, she has said no and won’t let me take her to appointments as she has a recent obsession with driving/traffic/and is physically sick or angry if someone drives on a route she doesn’t approve of. I am unsure if some her symptoms are PD related and how much of it is her personality. She can be very unkind about other people and refuses to speak to anyone but me and is reliant on me to solve all of her problems. Her anxiety and negativity is overwhelming. We have a meltdown on our hands everytime a letter or bill comes through the post or she receives a marketing text, we have to drop everything and go over if her tv doesn’t work because she has sat on the remote. It has put strain on our marriage and everytime she decides she wants to move we have risked our own finances to keep her happy but nothing is good enough for her. Which she now has no recollection of. She can’t remember anything about my childhood and the many times she has upset family over the past 5 years. She has no empathy. She barely eats and weighs 7st. She has a tremor in her jaw, legs and left arm, she says some days she can barely open her jaw, Slowness of movement and problems with balance. Forgets to wash her hands when going to the toilet. She hates her neighbours (her words) stopped speaking to my brother because it was his turn to ring 8 years ago and he didn’t call, and is unkind about the other two people left in our family. I have tried everything to help her but I have nothing left mentally. After 4 years of ivf we now have a 6 month old, I feel like a terrible person but her symptoms escalated at Christmas and trying to deal with mom and a baby is becoming difficult. I’m sorry if this seems insensitive but I don’t know what to do. My friends parents are all in their 50s and 60s and have no experience of this.
Hi, I can fully appreciate you are finding this very difficult to cope with. It’s entirely possible some of your mums behaviour stems from the condition and/or medications she may be taking. You need support as well to be able to help her. It puts a terrible strain on family relationships when those we love become unwell or have conditions that can lead to challenging behaviour. I’m speaking as a wife trying to help a husband with PD. I would just say, involve your gp, community nurses, ot, social work dept, whoever you can get to give you and your mum the right help and advice. Don’t think your alone in your frustration, we are going through a bad patch ourselves just now, it’s not easy, I like this forum, it shows me I’m not alone
It means so much to read your reply and feel like I am not alone which I have been struggling with for a while, thank you.I felt terribly guilty for writing everything down as I felt disloyal to my mom for feeling like I can’t cope…when really it is her that is suffering with the symptoms. I am very sorry to hear you are going through a rough patch yourselves, I really hope things will brighten up for you soon.
Well we had an assessment today from PD nurse. Meds altered, timings changed and referrals to OT and Physio. That’s lifted my mood and significantly lifted my husbands. It’s an ever present strain for everyone, but it’s good to share feelings. Hope things improve soon for you too.
KBee
Never feel guilty about putting your thoughts and feelings down on the Forum, I do it infrequently but I find it helps hugely even if no-one replies (which has never happened!), sharing those thoughts helps me to get it off my chest when I have no-one who can really understand what it is like to have someone you love with this horrible condition which robs them (and you) of so much,
Fortunately we have each other and the helpline and that is a great source of comfort!
Best of luck
Hi I have had pd since 2010 and looked after my husbands mum and my own mum who were both left after there husband s passed away, At my father in laws furneal hubbys uncle took us toone side, and just said “don’t forget you have your own children and you have yourown lives to live” we did look after my mother in law untill she passed away at 80, My mum was different story she asked if she could come and live near us, and we managed to get her a flat in one of the council coplex’s she was quite happy there till she started to forget things eg she used to say that they were watchin her (but this was the stand b